toowoomba parkinson's support group Meetings

Hi everyone

A bit more to read this month. We had a very busy meeting and I did not manage to get through everything so you can start on the back of this note with the first email I sent out to everyone just after the meeting to cover the excellent Sausage Sizzle happening.

Then the next page is the second email I sent out to catch everyone up about a future fundraise being offered to us.

The third page covers other things I did not have time for at the meeting.

Finally, the last page gives you an overview of the meeting as usual plus advertises our May meeting.

Thanks everyone.

Cheers Carol

Well, where does that time go at the meeting?

I think it is important to have the first half hour from 11.30 to 12 midday available for everyone to chat to one another, have a cuppa and a bite to eat.  There is much to learn from one another.

Thanks to the speechies from BlueCare - I thought their presentation covered some really important aspects of PD.  We always think of exercise as large body muscle exercise for walking and balance and strength etc but we do tend to forget sometimes those insidious attacks PD can make on muscles we tend to forget about - voice production, breathing and swallowing.  Once again, PD affects people in different ways, but what we can do is try to guard against these issues for as long as possible, but, as was pointed out, regular exercising can be a real challenge for PwP.  It is a hard ask but it is worthwhile.

I did not cover all I wanted to today and a couple of points were really important but I felt with the lift issue we needed to ensure everyone had time to safely exit the Library.

I will cover one point here and send emails to cover other topics in single emails a few days apart to try to avoid overloading you!

So here we go with the first very important piece of information.

OUR LETTERS TO SERVICE CLUBS HAVE PROVEN TO BE SUCCESSFUL BEYOND OUR WILDEST DREAMS!

Response has been great!  And in this email, I want to thank so very sincerely Toowoomba West Lions Club.  They have donated to our Support Group an amazing $2005 - a straight $1000 donation and $1005 from the Sausage Sizzle at High Street Plaza last Saturday.

On Wednesday evening, Patricia attended one of their meetings to thank them on our behalf - thank you for doing that for us, Patricia, as I had one of 'those weeks' and simply couldn't fit it in - I heard you did a marvellous job.  Patricia let me know that she was also able to thank Benjamin from Drakes for donating the sausages and bread rolls at the meeting also.  That was a wonderful gesture as well - and those sausages were really nice, and well-cooked and presented.  Lions have a well oiled team of workers for their sausage sizzles.

And, a big thank you to all of those people who went out of their way to support our group and to purchase a sausage.  I was there for about 2 hours and saw so many people I knew there who had come along specially to buy from the Sausage Sizzle.  Thank you all!  Patricia reported that our Sausage Sizzle apparently raised the largest amount ever of any Sausage Sizzle run by the Toowoomba West Lions!!!  How about that?

That's it for this email!  Will send another about something else early next week.  HAVE A GREAT WEEKEND AND STAY DRY!

Thanks everyone for such a great attendance yesterday - there were 70 at the meeting. Cheers Carol 

  Here is the second spiel that I should have informed you about at the meeting AND IT IS A VERY EXCITING ONE.

Through the efforts of two of our members, Ray and Kaye, their church group, Middle Ridge Uniting Church, have decided to make our Toowoomba Parkinson's Support Group the beneficiaries of their annual donation to a local charity from the funds raised at their Market Day.

I can't tell you how helpful these donations are that we are presently receiving.  I know it all seems to be happening at once but it might not happen again for a long time, so bring it on we say, and then we can relax and enjoy the quieter times! 

The donations will make such a difference to the team who organise the activities for our Support Group - to know that we have money to be viable for a number of years without having to focus on raising funds takes the pressure off us because, in case you haven't noticed, your Support Group Team is getting older by the day and we are also busy with other things in our lives apart from the Support Group (I think!) - like supporting our own loved ones with Parkinson's which is why we are part of the group as well.

SO HERE IS THE INFORMATION ABOUT THE MARKETS AND HOW YOU MIGHT BE ABLE TO HELP US!

The markets are at the Middle Ridge Uniting Church, 264 Stenner Street, Saturday, May 10th, from 7am to 1pm.

Regular stalls include cafe, cakes, books, bric-a-brac, garden, garden produce and various crafts.

Our group will have a small table with brochures and handouts and we will be available to answer questions.

There will be another support group meeting before this market and we can ensure you know all you need to know then but that meeting is very close to the actual market and to help out we need everyone to be thinking about it NOW!

HOW CAN YOU HELP??

Are you a crafty person who would like to have a stall to sell your craft at the market - it only costs $25 to have a stall?  If you are interested phone Millar on 0487302912 or Kay on 0407655092 to get details.

Can you donate anything to any of the stalls - bric-a-brac, books, garden produce, gardening, plants, cakes?  These can be picked up from you or you can take them to the church on the afternoon of Friday, 9th.

Can you round up family and friends to come along and enjoy the Market ON THE 10TH MAY TO CATCH YOU UP ON and spend a bit of money (Mothers' Day is THE NEXT DAY on Sunday 11th!)?

Can you help out for a while on one of the stalls (or be a floater for a couple of hours to assist where needed)?

If you can do any of these things, no matter how small, your effort will be much appreciated by everyone.  Last year the donation from the Market proceeds to a local charity was substantial.

That's it, everyone, for now.  Just one more brief email in a few days to catch you up on points I had no time for at the meeting before I finally send out my usual review of the meeting!

Thanks all.  Cheers Carol

Here are the last few items that I needed to report to you about but ran out of time at the last meeting.  When I get these out of the way, I can sort a review of the last meeting to send to you and then, hopefully, we will have a somewhat normal meeting in May with regard to not as much 'extra stuff' to tell you about.

• I attended a Zoom Coordinators Meeting with      PQI in March.  The main discussion point was about Parkinson's      Australia decision to become its own commercial entity rather than being      linked with any state Parkinson's bodies.  To enable the State bodies      to have input into Government with regard to Parkinson's Disease issues,      all State bodies have now formed an allegiance with Shake it Up Australia      and a range of research bodies and are working on a framework for this      newly formed National Parkinson's Alliance for which they are also      applying for a federal submission.  There is no doubt there are many      issues arising from this situation (I thought that I had left this stuff      behind when I retired from working in State Government Departments) and it      will be interesting to have our PQI CEO, Danielle, at our June meeting      .  I am sure she will address this when she talks about PQI plans for      the future.
• I attended with quite a number of other Group      members the recent My Aged Care Information Meeting.  It was      in a rather inaccessible room which did not bode well and I personally      felt that there were many issues still to iron out - so I felt a bit disappointed overall. 

However, the information we were given tallied with what I already knew and I hope to have someone speak at our July meeting about the new system and perhaps, as it will have started by then, we will have more answers. 

What we do know is that

there will be, instead of early assistance plus 4 levels of home care, we will have Levels 1 to 8;

those with a Home Care Package before July 1 will continue as they are now - they are being 'grandfathered' I think the term is.  If they move to a higher level later they will be put into the new scheme;

the new levels will not include the ability to purchase equipment and make safety renovations from contingency money unused for services but there will be separate funding available for that, over and above the package money which is mainly for services;

alternative Restorative Care Pathway and End of Life Pathway will be extras available to all;

only one assessment interview will be required rather than the present 2 to get a Home Support package;

they are keen to move back to face to face assessment;

there will be a higher user cost attached to services but this was one issue still being sorted.

• Lyn, Cynthia, Shirley and myself met with David      Janetzki, Queensland's Treasurer and local MP,  in      March.  He was supportive and we are hopeful from the meeting that      State Govt financial support might eventually reach PQI, which would be      great if it might be used for educating medical and nursing staff of      hospitals and nursing homes and others about Parkinson's Disease.       David said he would keep in touch with us on developments and I said I      would also keep him updated with our issues and concerns.  Worthwhile      I felt!
• Between our March and April meetings, I      addressed a group at Village on the Downs to raise the      awareness of PD and our Support Group.  I also had an interview on Power      FM with Krazy Kevin, thanks to Geoff, one of our members.
• With regard to World Parkinson's Awareness  Month of April

I was interviewed on April 1 about PD and the Group on ABC Radio Breakfast Show with David Iliffe;

one of our members, Janette (thanks Janette) and Melissa, one of our choir leaders, and myself were interviewed by Megan O'Hara Sullivan for her radio program Big, Little, Small Talk.  We spoke about Communication and PD.  It will later become a podcast available through Apple and Spotify;

Edwina and Peter with Joe and I will call to Infinity Specialists on April 10 to draw their Easter Raffle which they have been running - the proceeds are to come to our group.  Thank you, Infinity Specialists;

I will speak at the Toowoomba Lions Wilsonton Group's April meeting about PD and our Support Group - thanks to Shirley who will accompany me;

the Council Precinct Lights, Victoria Bridge and the Empire Theatre Lights might glow purple on the night of World Parkinson's Day which is Friday April 11th, hopefully arranged by PQI.  If anyone catches the lights, please send me a photo.

Thanks everyone for reading these emails.  Hopefully they are useful.

Cheers Carol

 Final email with regard to april meeting. 

Hello everyone

Returning to some sort of order now and hopefully back on track.

REVIEW OF APRIL MEETING OF THE TOOWOOMBA PARKINSON'S SUPPORT GROUP

Our meeting in April was not only very busy but also extremely worthwhile.

• We welcomed some new faces.
• Our Finances are healthy and have been bolstered by a sizeable      donation from Lions West Toowoomba and a very successful Sausage Sizzle      provided by the same Club.  We have opportunity for more donations      from other wonderful supporters - Lions Wilsonton; Infinity Specialists      and Middle Ridge Uniting Church (May 10th Market).  More about this      at the next meeting when some of those activities will be over.
• Dance proceeds well with good numbers but we have had to change      venues to DeMolay Hall as access via Brown Lane to Radiance Academy has      become difficult with the building of the new high rise.  This will      cost us the hall hire for the next few months whereas there was no Hall      Hire at the Dance Studio.  We hope to return in July.  We will      wait to see.
• Choir also has excellent numbers - we are needing a new data show      projector as the old one is having age problems - we will purchase one      ready for the new term.
• We have had no responses to emails or letters or phonecalls sent to QAS or Trevor Watts and so we have decided to leave those avenues of enquiry and not continue follow up - disappointingly.
• Guest speakers - we have planned for May (Kerrily - Occupational Therapist) and June (Danielle and Christine from PQI); on June 26 th we have a special Information Session      with Dr Nisal Gange (not a meeting - starts at 2pm).  Still sorting July to November.
• Plenty of handouts on the table plus a new one on Communication and PD.
• We had a draw of 10 prizes to mark Parkinson's Awareness Month - this was fun and we are sure everyone      enjoyed their prizes.  Thanks to members and businesses who donated      some of the prizes.
• Our guest speakers were  Fiona and Georgia and Val from BlueCare to address us about the need for      Speech Therapists as part of our support network while on our Parkinson's  Journey!

1. Most PwP will experience changes      in their vocal production - quiet voice, slurring of words,      choosing words, stammering....
2. These issues can be addressed and often improved by working with a Speech Therapist  - in a group or one on one.
3. BlueCare is now using the Speak Out Program rather than the LSVT program.  This is because, for  some people, the LSVT program tended to strain the voice through using a very loud voice.  SPEAK OUT is an individualised speech and voice therapy program designed      specifically for People with Parkinson’s Disease and associated      conditions, developed by Parkinson Voice Project. It emphasises speaking with intent with the goal of improving speech clarity and loudness and preserving speech and communication. The program has also been shown to help to preserve or improve swallowing function. 
4. Swallowing is an important issue  in PD.  Poor swallowing can cause choking issues which, in turn,      cause aspiration and then lung infections. Pneumonia can then be an  issue.  Poor swallowing also means that people do not eat as much (too slow or food not as appetising when softened) and can lose weight.  Discussion centred around size of portions, mouthfuls and      consistency of food.  Also swallowing can be an issue with regard to      swallowing tablets.  A suggestion for this problem was to use GLOOP      which is available at pharmacies. 
5. Drooling can be another issue. The      average person makes up approximately 0.5 mls of saliva per minute. That really don’t sound like a lot, but multiply by 24 hours in a day and that equals to 720 mls.  That is a lot of volume in a small mouth.  PwP tend not to swallow as often and so the saliva builds up in the mouth and can slip out.  try to swallow often;  some      people chew gum which tends to force you to swallow; sometimes Botox in      the salivary glands helps.
6. PwP suffer from apathy quite often and so they find focussing on regular practice very difficult.  Families can help by setting up regular times for practice; giving time to the PwP to talk      with them and wait for responses.
7. The ladies distributed helpful handouts and samples to those at the meeting.  The handouts will be made available on our table at the next meeting.

A very useful session indeed.

Cheers Carol

Meeting cancelled due to the  anticipated dangerous weather conditions of Cyclone Alfred!  Unfortunately, we found we could have gone ahead as Alfred did a little dance overnight.  However, better to be safe than sorry! 

BRIEF (not so brief – so much to cover after being on a break) REVIEW OF FEBRUARY MEETING

It was lovely to get back together again - greet familiar faces and welcome quite a few new faces.  We do hope that members find the giveaway stylus useful - certainly they are helpful for people with tremors or numbness when trying to navigate mobile phones, tablets or ipads.

Patricia, our treasurer, reported that we are travelling OK for funds presently.  Our outgoings for a year usually amount to about $5000.  We have had some donations which has helped and our raffle was very successful, but we are ever watchful that we continually make ends meet.

Our Dance and Choir groups have started off with good numbers.  There is a new class at our Dance Studio which is called Fitter for Life (we will have flyers at the next meeting) - not expensive and sounds like fun.  Queensland Ballet is also visiting on March 24th and running a Community     Dancing and Singing Class for us free of charge at the Armitage Centre - if you are interested, here is the link. Good idea to register to give them an idea of numbers.  We will be there!

https://qldballet.eventsair.com/ce-regional-tour-2025---toowoomba-region/2025-toowoomba/Site/Register

Information was given on the following:  Parkinson's National Conference in April; New Carer Gateway PD Carer Group getting underway (thanks for visiting us, Kate from Wellways); responses re letters sent; Carol has been asked to give some talks to local groups about PD and our group; Key Safe options with QAS; possible visit from PQI's new CEO.  There are handouts on each of these topics, most of which I have already sent out in emails to you plus they are available from our table at meetings but if you want to know more before the next meeting, please phone me so I can fill you in or send you details.

 We have already had over 400 visitors access out website this year.

One of our members shared a useful website for information when you are navigating the Aged Care processes. Here is the address.

https://www.home.villagelocal.com.au/

The University of Tasmania has launched a free Massive Open Online Course (MOOC) on Parkinson's Disease.  How it came about has an interesting story and I will have handouts at the next meeting but for now, why not try it out - very user friendly.  Joe has started it and is finding it fascinating.  You have to register but it is free.  Here is the link.

https://mooc.utas.edu.au/course/20278/Parkinson_s_MOOC__2025

or just google MOOC Parkinson’s

Here is a great opportunity for becoming easily involved with some Parkinson's Research.  We have long been interested in the gut possibly being connected to PD.  Here is some research that you can easily get involved in.  This research is easily done, costs you nothing and can be done locally.  The research is being done across Queensland and it is for BOTH People WITH Parkinson's and People WITHOUT Parkinson's so both Joe and I have already put our names forward.  Phone 33465584 if you are interested and have information sent to you. We will have flyers at the next meeting. I have made enquires - it is all approved and appropriate.  They are collecting participants until the end of April.

There is still some availability of places in the new Wellways Carer Gateway Parkinson's Carer Support Group.  They will meet every fortnight on a Wednesday morning for two hours to discuss many issues carers often wonder about and need answers to.  Why not phone Kate on 0468513746 for more details!

Integrated Living Wellness Centre has funding to run a course for Seniors about how to use a digital tablet - you pay for the course and the tablet (an Apple tablet) at a very reasonable cost.  So, if you feel you are being left behind with technology today, why not give it a go.  Phone Shelley on 1300782896.

I often hear members say they would love help with decluttering, especially when that are shifting house and downsizing.  Blue Lilac is a local group who do this.  Here is a link to their website. https://bluelilac.com.au/

I have heard others at meetings say they really want to do something about collating their memories for the family - such a great thing to occupy you if you are just not as mobile as you once were.  We have members in our group who have written wonderful books but there are also other ways.  A local group that can help with a free 30-minute consultation to give ideas and direction and then maybe you might want to follow through alone or with them.  They also offer workshops to help you leave a lasting legacy.  Phone Lyndall on 0481480808 or visit their facebook page.  Here is the link. https://www.facebook.com/WordFestToowoomba/

BlueCare offers two groups with specialised counsellors.  The first is one about Grief and Loss on the loss of a loved one and the second is one about Grief and Loss when related to Dementia.  You can phone 0417555826 for further information.

I have had a couple of enquiries about Tai Chi.  Apart from the City Council Tai Chi sessions offered at the library, one of our members runs classes at DeMolay House.  If you are interested, you can phone Rosalie on 0499290910.  I will have brochures for our table at the next meeting.

I have had a run of requests about Speech Therapy with therapists who focus on Parkinson's Disease. The two we know who are used by group members are Fiona at BlueCare - phone 0447 462 992 and Dominik at Toowoomba Neurology - phone 46463290.  Fiona will be speaking at our April Meeting about the new speech program called Speak Out. 

We can now confirm that Dr Gange will run an Information Session for us about many aspects of PD on the afternoon of Thursday, June 26th.  This is not a Support Meeting but a special opportunity to hear from one of the most knowledgeable specialists in Toowoomba who has had a lot to do with People with Parkinson's.  More to come, but the session will be at the Library, usual room, and the doors will open at 1.30pm for Dr Gange's address and question time from 2pm to 3.30pm.  Do put it in your diaries!

Please get back to us, if you would like us to approach anyone to speak at a meeting - we presently do plan to have an OT; a Speech Therapist; a display of Complementary Therapies; someone to speak about the changes to the HomeCare Packages coming this year; a visit from PQI; someone to discuss some of the issues of downsizing and also the costs involved for Nursing Homes.  PLUS GARTH HAMILTON, OUR LOCAL FEDERAL MINISTER, WILL BE AT OUR NEXT MEETING TO LEARN ABOUT PD IN OUR COMMUNITY AND SOME OF OUR PROBLEMS.

We still need to plan for the Parkinson's Month of April and follow up on concerns for PwP as inpatients in local hospitals.  Another item brought up was the lack of seating in Grand Central (which might require one of my pleasant letters 😀).

We watched a short video about Parkinson's Disease which covered quite a range of information - just revisiting things most of us already know but we always need to reiterate for new members in case it is new to them.

 Hello everyone


We  do hope that everyone enjoyed the Toowoomba Parkinson's Support Group's  End-of-Year Lunch last week.  We felt it was a lovely get-together and  everyone had a good time - the chat level seemed to indicate its  success.


Just a few things briefly.


Firstly, I want to thank Patricia again  for all the work she does - you have no idea what a relief it is not to  have to be concerned about the financial records of the group and to  know they are kept meticulously by Patricia to ensure we meet the  requirements of PQI and any audits that come our way.  It is often a  thankless job but all I can say is that I AM VERY THANKFUL THAT SHE DOES  IT!!  THANK YOU, PATRICIA ON BEHALF OF US ALL!


Next,  thanks to everyone for coming along to wind up the year with a bang!   Thanks to the helpers on the day and to anyone who donated towards lucky  door prizes.  Do hope those who won something enjoy their spoils!


Now,  I want to thank everyone for the great gift voucher which Joe and I  will really enjoy using to attend a night at the Empire Theatre  together.  Each year I have said to please don't feel any thanks is at  all necessary - like everyone else we wouldn't be involved except for PD  being part of our lives, and the group, for us, is a way of coping and  adding to our quality of life.  However, thank you - it is much  appreciated.


Next, our raffle - what a great success - thank you everyone.  Patricia has let me know that we made $1571.80.   That is simply amazing and totally exceeds our expectations.  It was  nice, also, at the draws, to have one win, a ticket sold to a friend, by  a member at the Lunch, Fiona, and the other to go to one of our  committee members, Bernadette, who could not get to the Lunch that day.   Congrats on the wins!  Nothing better than to win a ham just before Xmas!!  We feel this raffle is worthy of becoming a regular event, ladies and gentlemen.  Just  to indicate how useful that money is in our coffers - we pay about  $2500 per year for room bookings at the Library for meetings and at De  Molay Hall for choir sessions.  This helps to offset those costs in a  dramatic fashion and takes the pressure off so THANK YOU!!!


Just to let you know - our donation to Parkinson's Queensland this year was $300.


Now,  we will be having a committee meeting to review this year, confirm  roles and plan for next year - it will be early December at our place.   As soon as the time is confirmed I will send out a general invitation to  join the planning group.  Please give it some consideration - we would  love you to come along.


Finally,  I have updated the website to add a few words and photos from the Lunch  so the link below will take you straight to the page.  See if you can  spot yourself!!  Being such a big group, it is getting harder to manage  to chat to everyone and to take everyone's photo - so, apologies if I  missed your lovely self.


That is all for now.


Cheers Carol (46597646)
https://parkinsonssupportgroup-toowoomba.com/special-events-2024
 

  Hello everyone
I simply can't believe we are now getting so close to the end of the year.
Hope  you received my two previous e  Hello everyone
I simply can't believe we are now getting so close to the end of the year.
Hope  you received my two previous emails - first one covering some specific  issues I had to get back to members about and the last on about the  Seminar and Expo coming up about extremely pertinent issues for those  who are superior (oops senior) in the community.  It looks very  worthwhile indeed.
Now to review the meeting from October - first one covering some specific  issues I had to get back to members about and the last on about the  Seminar and Expo coming up about extremely pertinent issues for those  who are superior (oops senior) in the community.  It looks very  worthwhile indeed.
Now to review the meeting from October 3rd.
The meeting was attended by over 60 people.
We started with some discussion and handouts - one about Off-Times and Medication and the other about Respiratory Problems and PD.  Those handouts will still be available next year at meetings for anyone interested.
The Raffle is going well.  There will still be tickets available at the Lunch on Tuesday, November 7th at the Blue Mountain Hotel-doors open at 11am.   Also, if you have butts and money to hand in the lunch will now be the  best option for getting those to us.  If you are stuck, then give me a  ring and we will try to come to you.  (46597646).  HOWEVER, THE RAFFLE WILL BE DRAWN AT THE LUNCH ON NOVEMEBR 7TH!!
Only  a few places remain for lunch - very nearly full, so I think if you  leave contacting us to book in until later, you will quite possibly miss  out - so if you plan to come, please phone 46597646 or email me back  ASAP.  First in, first served!
I  am posting letters to Medical Centres and some specialists this week  asking for support of PQI's application for grants to present a proposed  Educational series for medical, nursing and care staff in all settings  in our Toowoomba region.  Hopefully it will gain some support for the  grant application.  I am also posting the letter to our Federal  Minister.  However, I will leave the letters to State politicians until  after the State Election and the letter to community groups for  donations until early in 2025 as most will be changing office bearers  about this time of year.  At least the letters are ready to go.
As  far as I know Carer Gateway is still planning to offer a  Parkinson's-specific Carer Program again but I have not heard from them  recently.  I will follow this up before too long and hopefully that  might be on offer, if not before the end of this year, early in 2025.
Here  are the main points from the speakers at the meeting.  The topics was  FALLS.  The first section is mainly about trying to avoid falls.

• The  information was important for all of us, not just PwP.  Physios,  Susette and Hannah, from BlueCare attended the meeting and Michael from  Friendlies Mobility also came with a Razer Lift Machine to demonstrate  its usefulness.
• There  are many issues that can help cause falls - amongst these are  medications, health including blood pressure, strength, balance, pain,  vision, not eating well, not drinking enough fluids, rushing because of  incontinence, nails on feet hurting, numbness in feet ....
• Keep your GP appts so that your bloods are regularly checked for deficiencies and your blood pressure is checked as well.
• Try to keep up with your Allied Health appointments eg podiatrist, optometrist, dietician.
• Eat well.
• Check  your environment - get rid of mats unless safety mats; have good  lighting and have it available at night as well; avoid clutter; watch  those bed quilts that hang on the floor at the end of a bed .....
• Get  grab bars in appropriate places; use safety non-slip mats for the  bathroom; have alarms available in the home and on your person.
• Do  physical activities that assist with balance and strength - do  something you enjoy so you will keep doing it!  Tai Chi, Yoga, Pilates,  Physio, walking, swimming, cycling ....
• Often  working in groups appeals more as it is then a social activity as well  and there are many options in Toowoomba to do exercise with others.
• If you have a fall, let your GP know so there are some investigations.

Use those people who can assist with suggestions etc eg occupational therapists, physiotherapists, dieticians ....
If you fall and cannot get up or be helped up SAFELY FOR YOURSELF AND OTHERS, call the ambulance.
Have  something that might assist you to get up safely - you could ask a  physio or OT to help you make a plan and use a step ladder or certain  chairs or pillows that are in the house.
Susette  and Hannah demonstrated what to do after a fall - don't panic, lie  still for a while and check your body for pain - if pain is there call  an ambulance; if you are not hurt , you could try getting up and the  different suggestions shown were very helpful - handouts were left with  these suggestions on what to do to get up safely and will be available  at meetings.
Michael  from Friendlies demonstrated the Razer Lift which can very successfully  be used to lift someone lying on the floor to a sitting / standing  position. Susette offered to be the patient.  The Razer was an  eye-opener.  It would be nice if every home could have one - however the  cost is a bit more than most households might consider.  Nevertheless,  there are or could be options for using the Razer in a way that would  bring about a speedier service than QAS can presently offer and, through  our approaches, we are hoping that something might be available in the  future.
Well,  that is it for this month, in fact, perhaps for the year!  I will send  photos around from our lunch and announce the Raffle Winner.
Take care everyone!
Cheers Carol (46597646)
 

  Hello everyone

We hear that the September meeting was a really successful meeting.  Sorry we were absent but we did enjoy meeting Joe's brother and his wife from the USA at the Brisbane Airport.

Firstly, thank you to all the members who stepped in for me - there were quite a few who helped out as a few key helpers were away - my sincere thanks to all - especially to Shirley for running the meeting; Kay for sorting the lunch; Patricia for her usual job plus more; and, Edwina for being on the door.

Secondly, I have attached the letters that I wrote and changed according to feedback from the committee and that we are about to send to various politicians and service clubs. Guess we can send the ones to the politicians now and then repeat, for Qld, after the election.  I plan to post early October so if anyone would like to send me a comment to change the letters in some way, please do so before then - very open to any ideas.

Next, I have not, as yet, heard back from the Queensland Ambulance Service with regard to their 'Falls in the Home' procedures and possible use of new equipment available.

Now to our Xmas / End of Year Lunch. This is always a popular occasion.   It is on November 7th and is instead of our usual meeting.  We have some great giveaways ready for the occasion.  Try to get your name in as soon as possible.  We have extended the limit to 100 this year and are already up to half way.  Email me back or give me a ring on 46597646 or get your name down at the next meeting, Dance session or Choir session.

And yes, now, our raffle.  We are drawing this raffle on November 7th at our Xmas lunch.  We would appreciate everyone getting behind us for this raffle in an effort to boost our funds for next year's expenses - why not win a half ham (chump end) for Xmas - two chances with any $5 ticket. Why not take a few tickets and sell to family and friends for us?   If you can't get to us before the Xmas lunch, you can organise tickets over the phone with Patricia, with payment online.  Please phone her on 0427197408.  Otherwise, you can collect tickets at Choir and Dance sessions and at the October meeting.  Tickets will also be available at the lunch but we hope that we will have dealt with most of the ticket sales by then to save a lot of work at the Lunch.

Our next meeting is our October Meeting

Thursday, OCTOBER 3rd, 2024

11.30am to 1.30pm  (Doors usually open about 11am)

Our topic for this meeting is FALLS - HOW TO HOPEFULLY AVOID FALLING; WHAT TO DO IF YOU DO FALL; AND, HOW A CARER CAN ASSIST PEOPLE IN A SAFE WAY, both for themselves and the person who has fallen or needs assistance to stand from sitting etc.

We will also have a demonstration of a very useful mobile lifting chair.

REVIEW OF MEETING - MAIN POINTS

ADA LINK

Cass and Nikki gave the following information at the meeting:

ADA Link is a specialist support service dedicated to helping older vulnerable people to access aged care and other services they might need in their communities. ADA Link is part of the Australian national care finder program.  It is a free service.

At ADA Link, Community Connectors meet with individuals requiring support to help them access aged care services, including My Aged Care, and other relevant supports in their local community. It is a people-focused approach that supports the integration of health, aged care, and other services or systems at a local level.

How ADA Link helps:

Our services cover a range of support for older people, including:

•   talking with Health Professionals and with My Aged Care and arranging an assessment if required (they have a 'special line' to My Aged Care)
•   attending and providing support at My Aged Care assessments
•   finding and short-listing aged care providers in the area
•   completing forms and understanding aged care service agreements
•   conducting regular touchpoints to ensure services are functioning well
•   connecting to community groups and services for issues such as physical and mental health, housing and homelessness, drug and alcohol support and social interactions

There are guidelines to eligibility which can be discussed during the initial phone call.  Self-referral is appropriate and if ADA Link is not suitable for the assistance required, they will refer to other more appropriate services.  There is a local office in Toowoomba.  PHONE 1800 818 338

Brochures were distributed and there will be some available at further meetings.

Well everyone, that is all for now.

We look forward to catching up with you at the next meeting on October 3rd.  

Cheers Carol (46597646)

Hello everyone

We enjoyed a nice change in the weather for our August meeting and it was nice to see sunshine and not feel an icy blast as we went outside. It was certainly a busy meeting – so busy I forgot to put out the sandwiches I always take so I hope everyone had enough for lunch. We certainly had enough for several lunches at home and then we started toasting them – the last few were taken off our hands by family. I won’t do that again!

Our numbers were great again and we had three new faces join us for the meeting. 

Janette spoke about the library books and Patricia brought us up to date with the finances. Thank you both for all the work you do in this area.

While we are presently OK with regard to our finances, we have decided to have a Christmas Raffle - WIN ONE OF TWO HALF HAMS FOR XMAS – ONLY $5 PER TICKET – AND WE WOULD LOVE YOU TO SELL TO FAMILY AND FRIENDS! Tickets will be available at the September and October meetings as well as at our Christmas Lunch in November (or by phoning Carol on 465987646). Our preference is to have ticket butts and money back at the October meeting but are happy to cope with finalising at the Christmas Lunch on November 7th as well. We can provide online banking but only if completed before the Christmas Lunch. Phone us on 46597646 with any queries.

Carer Gateway is presently organising their programs for the next 10 months. Those who have sent me their names as interested in the next PD Care Program – I have passed your names to Care Gateway and they (or I) will be in touch with you as soon as the pre-planning has been done.

Our Dance and Choir Sessions continue and, truly, they are both very worthwhile – why not give them a try!!

I am presently drafting a few letters to our Local Parliamentarians about some issues experienced locally by members and when completed will send to our committee members for feedback. We hope to raise the problems faced by people with the chronic, long term disease of Parkinson’s – eg reducing respite options for PwP carers; PwP not being automatically recorded for government statistics and therefore the Governments not aware of the number of people with PD in the community; challenging them to learn more about PD and to become a PD Friend in the Government. Also we will be writing to local Service Clubs to get on the list of possible donations.

I have contacted QAS with regard to their present approaches to falls in the home and the possibility of using some new equipment options which might improve their services. They have responded; gathered information; and, will get back to me.

I then introduced our speakers and notes are below from their presentations. 

Cheers Carol (46597646)

Our next meeting is as follows:

Thursday, SEPTEMBER 5th, 2024

11.30am to 1.30pm  (Doors usually open about 11am)

We will have guest speakers  from two advocacy groups in Toowoomba - Aged and Disability Advocates Australia (ADALink) and The Advocacy and Support Centre (TASC - now Advocacy and Social Justice Services as well as Toowoomba Community Legal 

Service ).

Each speaker will address us briefly on the services they can offer - while they are both advocates, their range of services do vary.  If you are involved with any government services, as most Older People and People with Parkinson's are, there will be times you might need an advocate - for yourself, your partner, your parent or family members.  Knowing what support is available to you, rather than having to find out in times of distress, is extremely advantageous.

This will be a very worthwhile session. 

MAIN POINTS FROM SPEAKERS:

1. Dominique Sanday from Wonder Sheets

Dominique designed these sheets because her father had PD and chad difficulties turning over in bed. The 'Wonder Sheet' is an effective therapeutic tool because it can make mobility in bed easier.

The satin panel, which is 90cm long, sits under your shoulders, back and hips and allows you to slide your hips over more easily without having to lift them. It's also particularly helpful when getting in and out of bed because you can pivot on your hips without worrying about the friction from normal cotton sheets.

Most mobility stores in Toowoomba carry the sheets or you can order online or by phoning 07 55911 629 to ask questions. You can also purchase through a variety of services like HomeCare Packages and NDIS.

2. David Pearce from HomeGuardian

David also had a father who lived with Parkinson’s so his interest in assisting PwP is piqued. HomeGuardian is a multi-award-winningfall detection assistive technology that helps individuals maintain their independence by automatically detecting falls in the home. With such a falls alarm, individuals at risk of falling can receive prompt assistance, increasing the chances of a successful outcome. The system uses Artificial Intelligence and HomeGuardian is designed to meet the unique needs of different individuals. The system is not worn; does not rely on the person calling for help; no batteries or charging required; provides 24/7 monitoring. You can also purchase through a variety of services like HomeCare Packages and NDIS. Phone 1300 248 324for further information.

3. Country Care Group

Country Care is a relatively new independent living store in Toowoomba. Country Care Group is a family-owned and operated national business of service providers that distributes and sells a large range of innovative healthcare products for the Australian and International markets both independently and through a national group of resellers.

They provide healthcare solutions (products and services) nationwide to the public, aged care facilities, hospitals, healthcare centres, directly and through government contracts including Department of Veterans’ Affairs (DVA), Queensland Government Medical Aids Subsidy Scheme (MASS), Victorian Government State Wide Equipment Program (SWEP), Government of Western Australia Health Support Services (WA Health), Transport Accident Commission (TAC), HealthShare NSW, NDIS and HomeCare Packages.
 

The representatives who came to the meeting brought a variety of useful items for us to look at. To approach the store at 1-233 James Street, you need to be travelling east on James Street between West and Ruthven Streets to turn in left just before Prescott Street. You can phone on 07 4599 7325. Call in and have a look!

   Hello everyone

Another meeting of 70 plus members came along to gather some information about Parkinson’s Disease. Our guest speaker was extremely interesting and I have made some dot points about his address below.

Firstly, we spoke of plans we have to write a few letters which I plan to have in draft form for the next meeting;

1.  A letter which can be sent to any service groups in our area to put ourselves on their list for donations in the future.
2.  A letter we can sign and send to our local members with regard to two issues – supporting PQI (and us) at a government level and also alerting them to the fact that casual respite positions are becoming very scarce.
3.  A letter (or phonecall to make a meeting time) with QAS locally with regard to providing assistance to people who have fallen in their home.

Secondly, we made mention that it is difficult to ensure we cover important issues about PD within a timely manner for new people in the group as every meeting is busy and covers different aspects. We have handouts and a poster board at every meeting to ensure some of the main points many of us have heard time and again are available for new people to learn about.

Thirdly, we always choose one aspect of PD to highlight each meeting with a handout and brief discussion. At this meeting we chose Parkinson’s Pain, which for some PwP is a very real issue. Remember! If you have pain do not assume it is Parkinson’s Pain. Go to the Doctor, get everything checked out – a decision that it is Parkinson’s Pain is a last resort by a GP or specialist.

Next, there is a new phone number for BlueCare – 46369525 no longer works. 

The new phone number is 1300258322 and from this number you will be put through to Toowoomba.

At our next meeting we will have three brief speakers from different areas of retail that we could find useful:– Country Care Group – the newest centre in Toowoomba which distributes and sells a large range of innovative healthcare products; Wonder Sheets – a very useful product that assists PwP to turn over in bed; and, HomeGuardian which distributes Artificial Intelligence Falls Detection technology.

See you there.

Cheers Carol (46597646)

Now for points from our Guest Speaker

• · Harry Claydon from Toowoomba’s PD Warrior Program spoke with us.
• · The PD Warrior Course is available through The Fit Lab Allied Health, 231 James Street, Toowoomba. Phone 46 387645 or email harry.claydon@fitlab.com
• · Some of our members have already done the course and all have found it beneficial.
• · Fit Lab can work with different forms of funding to save on costs of the course – NDIS, My Aged care Home Care Packages, private Health Funds as well as Chronic Disease Management Plans from your GP.
• · Support people are welcome to work with those undertaking the course.
• · No matter at what stage you are with PD, the course can assist you and be adjusted to provide useful exercise. However, the earlier the better in terms of success rate - but at any stage there will be improvements.
• · PD Warrior is all about getting your body to give you the best quality of life while you have PD – to assist in delaying the effects of symptoms for as long as possible.
• · PD Warrior offers a range of options from online to face-to-face to 10 week challenges – there is something that suits everyone.
• · There is an initial assessment to ensure the right exercises are chosen for you, as every person with PD has differing problems.
• · By increasing a person’s effort, amplitude, dual tasking or a combination of all three, PD Warrior uses neuroplasticity (retraining the brain) to think differently about body movement rather than allow PD to be reducing it.

 Hello everyone

Another  busy meeting with more than 50 people attending, quite a lot of  apologies from people with winter ills, and some new people coming to a  meeting for the first time.

Next  meeting will be on July 4th and our guest speaker will be Harry Claydon  who has brought the PD Warrior Program to Toowoomba.  Harry  is an accredited trainer in the course and is now available to support  People with Parkinson's in challenging their bodies to slow the  progression of disease symptoms.   PD Warrior is an advanced exercise program that incorporates both physical and cognitive activity for people.  Come along and hear why this program works and the research that backs it. This will be a very worthwhile session.  We are thrilled to now have this program operating in full in Toowoomba.

 OVERVIEW OF MEETING: 

• I  was very sorry to have to inform the group that one of our members,  Michael Elliott, died suddenly just a couple of days before the  meeting.  Michael’s wife, Joan, died after a long illness earlier this  year so losing their Dad as well, so unexpectedly soon, has been a shock  to the family.  We will send a card to the family and someone will  attend his funeral on behalf of the group.  Our sincere condolences to  the family.
• Alfred  Jensen from Active Medical (11 Grange Street, Toowoomba) brought along  the latest wheelie walker (rollator) to show us.  It looks excellent and  has a number of additions to assist those who have problem with a  freezing gait.  The features act on three senses – see, hear and feel.   It projects a laser line on the floor which you can see and follow; it  produces a beeping sound allowing you to focus on the sound and step  with it; it vibrates at the handles so you can feel the pulse and walk  to the timing of the pulse.  The features are adjustable to suit you.   So if freezing is a problem for you, it is definitely worth having a  look at this new wheelie model.  You can contact Alfred by phoning  1800267267 for information or call to the store to try it out.  

• Our excess funds are now with PQI, earmarked for our group to access when required.

• I  thanked all the volunteers for the work they do – the Government  identifies that community volunteers save the Government $ 49 per hour  of time they give – working on that and the number of people that put  hours of time into our group, our dance sessions and our choir, I  quickly worked out that our volunteers save the Government at least $15  000 per year.  Thanks everyone!
• I  asked the group whether we should ask some representatives to talk to  us next year about Natural Therapies.  I feel there were enough  interested to have a few speak with us at one meeting.  It is really  about checking out different options which might back up medication eg  help with tight muscles; relieve stress and anxiety ……. Not just for  those with PD but also the carers.
• Our Dance and Choir continue strongly.  We are about to take a break over the school holidays.
• We have useful posters and handouts at each meeting for people to read or take home.
• We  could do with some help at the moment with our library.  Janette has  done a great job in building up the library and it is compact in a  pull-along bag.  Janette has commitments elsewhere at present that cut  into our meeting times for a few months.  COULD SOMEONE PLEASE OFFER  TO LOOK AFTER THE LIBRARY AT MEETINGS FOR US FOR A FEW MONTHS PLEASE?   GIVE ME A RING ON 46597646 IF YOU ARE INTERESTED.  WE WOULD MUCH  APPRECIATE YOUR HELP.
• Many  Media Headlines announcing Parkinson’s Cures can be misleading and  bring a deluge of phone calls from family and friends to PwP. The body  of the media articles holds the correct information which is usually  that trials are about to start – so still not just around the corner.   BUT ONE DAY THERE WILL BE SOMETHING!!!!!
• Patricia  and I attended a Zoom meeting about applying for grants.  It led us to  believe that we should write letters to a number of different groups  that might donate money to our group rather than having to apply for a  grant, which requires us to run an event with the grant money (if we  succeeded) and then use the profit from the event.  There is a lot of  work to write a grant application and also in reporting back.  More news  later when we can focus on that
• I  drew attention to the hints and tips given by members which we put on  our website – I have added another since the meeting.
• We  have now had 4500 visitors to our website in the 4 years it has been  available – this shows it is well used and PwP are finding their way to  or group through the website
• Our  Carers Support Group is coming to an end with Wellways Carer Gateway.   It has been a very worthwhile course, based on the needs identified by  the group.  Wellways are happy to start a new one, hopefully in August.   PLEASE LET ME KNOW IF YOU ARE INTERESTED SO I CAN PASS YOUR NAMES ON.  I have 4 so far.

Lisa from PQI spoke to the group:

• She explained her role to the group – it is a part-time position and she focusses on the needs of members and volunteers.
• As  a social worker, Lisa has worked within the hospital environment with  the Older Person’s Unit, and within the community in mental health and  NDIS related roles. Lisa has also studied holistic counselling and has  an interest in creative and expressive therapies.
• Lisa  explained the value of PQI membership to each of us.  Access to the  Parkinson’s Nurse, Connections Magazine and library being only a few.
• The PQI Parkinson’s Nurse is in great demand and a phone appointment with her is free and the wait is about 2 weeks.
• Queensland is the only state that does not provide funding for its state body for PD.
• Joining PQI assists in presenting numbers of PwP to the Government.
• There  is no Government gathering of numbers of PwP and PQI is trying to  change this – those with cancer, diabetes etc are all reportable for  statistics and, while PD information is not being collected, it is very  difficult to get Government Funding for research or support for those  with PD.
• Unfortunately  Miguel has moved on to another challenge in his professional life and  we will hopefully have a new CEO in early July.
• Lisa  is always available to members with any queries about PQI.  To become a  member the best option is to phone PQI on 1800 644 189 and it can be  dealt with over the phone.  The costs are only $35 per year or $50 for a  couple.

I think that is all everyone. Take care and stay warm and hopefully see you at our July meeting. Cheers Carol (46597646)

 

 Hi everyone
Well, I think we all heard something new and useful from our guest, Professor George Mellick, at the last meeting.
I  am sorry the meeting started to run late - there were a lot of  questions handed to me that George addressed and then he took questions  from the floor.  
I  realise, of course, that people can usually only manage to stay until  about 1.15pm given their staying power, car parking issues and that we  only have the room booked until 1.30pm.  It is difficult to close off a  meeting when there are more questions people want to ask.  Fortunately,  George was kind enough to stay back and answer anyone's questions after  the meeting so I think everyone managed to get answers from George - I  hope so.  If you still have a burning question you would like to put to  George, please let me know and I will endeavour to pass it on to him to  gain an answer for you.
World  Awareness Month of April is now over and I have updated the website  with the 6 activities our group did locally in order to help raise that  awareness - so just click on the link below and it will take you to the  page to see these - there is a video to watch as well as a podcast to  listen to.
https://parkinsonssupportgroup-toowoomba.com/special-events-2024

Just  a quick reminder re COVID - it is certainly still about and a few  people we know of have had it recently.  How you manage that situation  is, of course, totally up to you.  The general advice is to

• stay up to date with vaccinations
• keep some COVID tests in the house (check their currency if you have had them a while)
• anti-viral medication is still available to those eligible (please check)
• check,  before you need to, with your Medical Centre about their procedures  when you have COVID and need anti virals, especially what to do over the  weekend

Our next meeting is on Thursday, June 6th and  our guest speaker will be Lisa Bamforth, the 'Member & Volunteer'  Support Coordinator for Parkinson's Q'l'd.  Lisa will introduce herself  and her role;  talk about how PQI can assist us; the benefits of  Membership including, accessing the PQI Parkinson’s Nurse, and answer  any questions we may have.  This will be a very worthwhile session.

I will send more details in my reminders of the meeting as time gets closer.

REVIEW OF MAY MEETING
There  is no way I am going to be able to give you all the details of George  Mellick's address to us.  I was too busy listening to manage many notes  and I was finding it so interesting that I even forgot that I should  have been taking notes.
I  found this youtube video of George Mellick presenting some of the ideas  he put forward at our meeting about research and what interests him  about research and in particular the research into Parkinson's Disease -  so you might like to start with it.  While the video is 7 years old, it  still contains ideas about the process, while we are 7 years down the  track with many things being clarified during that time.

https://www.youtube.com/watch?v=QZwaJLlPRNw&t=897s

Points of interest I did note during the presentation were:

• Parkinson's is a very complex disease and this is one reason why science still has not all the answers about PD.
• Parkinson's  Disease is different for each person - only slowness and stiffness are  common - all other symptoms vary in individuals.
• It  is difficult to research a disease when those who live with the disease  need to stop their medications, which might be quite effective for  their symptoms, in order to trial something new that might not work as  well for them, if at all.
• In  a well-designed trial there is often a placebo that some of the  participants will take.  If the trial has a good outcome, then those who  took the placebo will be offered the new drug, as well those who are  taking the drug.
• Those participating in a trial should always receive the results of that trial.
• The  placebo effect of medications can indeed be very strong and can even  last longer than a year before the person taking the placebo will  realise that things have not really improved for them at all, and they  are back to where they started, without what they imagined might be a  new and successful medication or treatment for them.
• A  research trial should not cost you any money so beware of those who  might seek to make a profit from you and are actually scams.  Like the  old adage - if it sounds too good to be true then it probably is too  good to be true.
• If  you read about something that might help and you give it a go, and it  helps you, then stay with it.  If you feel better, why not?  However, do  be certain that it does not have some side effects that you do not know  about which might make something else worse in your body or interact  with medications you are on.  Tell your GP what you are doing and take  advice.
• Research  into Parkinson's is done on all fronts - into causes; into bio-markers;  into improved medication; into cures; into slowing down the process;  into alternate therapies to medication (Light; Gut; Deep Brain  Stimulation, Stem Cell ...); into use of new drugs; into current drugs  in use for other problems; into new compounds found in the environment  ....
• Parkinson's  Disease is not considered hereditary but if someone has a very close  relative with PD, their chances of developing PD themselves is doubled,  but since there is fewer than 1 person in every 1000 who develops PD  then the chances are still very slim.  The demographics of a region also  need to be taken into account.  Toowoomba, statistically, probably has  about 250 PwP.
• In the late 20th century,  a neurology clinic located a family of Italian origin that encompassed  at least five generations of more than 400 individuals and at least 60  members with PD, and traced their ancestors to a small village in  Italy.  In 1995, there was a research effort made to locate the possible  gene causing PD in this family. The team reported the first Parkinson  disease-causing mutation (PARK1) in the brain protein, alpha-synuclein.   Alpha-synuclein was discovered to be the major component of Lewy Bodies  within brain cells of PD patients.  This discovery changed the  direction of research into PD by providing scientists with an entirely  new protein whose manufacture, function or breakdown could be the key to  the disease.
• It  is an advantage to anyone, and especially to someone with PD, to have a  gut that is working well.  Talk to your GP about how best to achieve  this for you.
• It  is also an advantage to anyone, but especially to someone with PD, to  keep yourself as fit as possible and to EXERCISE - for PwP to improve  balance and strength to counteract the advancing Parkinson's Disease.
• There  will be times when some drugs are available overseas but not in  Australia.  Australia has very strict rules when it comes to medication  availability, mainly because of the PBS system.  If we lived elsewhere  many of these drugs would cost every individual a fortune.  Before  allowing a new medication into Australia the Government wants to be sure  not only of its safety but also whether it is really providing  something new that is not being addressed already within Australia.
• It  is now considered that the sooner a PwP starts on medication the better  it will be for that person - not only that the medication will give  them a better quality of life but that early medication appears to also  slow the onset somewhat.  The older idea that medications lose  effectiveness over time is not about the medication - this happens as  time goes on because the disease simply continues to advance, and  medications need to be adjusted.
• It  has been very difficult to convince the Queensland Government and other  Australian governing bodies of the impact of Parkinsons's Disease on  the community.  There is general misunderstanding about what PD is and  there is a real need to raise awareness.  This issue is like any other -  it takes a very long time within the political system and because it  affects mainly the older population and does not kill people quickly, it  is difficult to make an impact on governing bodies.
• The  incidence of PD might appear to be increasing but, in the main, it  could simply be that people are living longer and PD usually manifests later in life; PD is now being recognised more quickly by GPs; PD is being given more emphasis; and statistic gathering is more effective.

Take care everyone.

Cheers Carol (46597646)

Hi everyone

Well, I really feel everyone heard something at the last meeting with Dr Nisal Gange that they found to be new, useful or of interest – or all three. It certainly was a well-attended meeting – over 90 in the audience.

I have made some dot points below from the meeting but firstly there are a few things I need to pass on to you.

1. PQI have asked me to pass on the following information 

a. PQI is having a Laps for Parkinson’s event to be held on 28th April, and this is their main event to celebrate Parkinson’s Awareness Month.

b. Lisa, Member and Volunteer Support Officer, from PQI sent this link to be shared. It is an interesting and open interview with Allan Border AO. A good read as well as the podcast to listen to. https://www.moversandshakerspodcast.com/post/sport

2. There was an excellent session, also with Allan Border on World Parkinson’s Day which I thought you might like to see as well. Here is the link. https://www.youtube.com/watch?v=6-NYmKJbfls

3. I have updated our website with the Iceberg illustration of PD Symptoms used by Dr Gange as well as some videos specifically about non-motor symptoms. Here is the link to that page of our website.

https://parkinsonssupportgroup-toowoomba.com/of-specific-interest

4. At our last meeting we ran a bit short of time so there are a few things I want to mention :

a) I have some posters of PD facts and figures I was going to draw attention to – I have decided to do a board up with them for the next meeting instead and then if anyone wants one you can let me know and I will send it to you or bring one printed for you to the next meeting as, because they are in full colour, they are a bit expensive to print off if not really needed.

b) The PD Warrior brochures were handed out – I have booked Harry, who is the accredited trainer for PD Warrior in Toowoomba to talk with us at the July meeting.

c) For the month of April we have a few things planned to highlight World Parkinson’s Month – firstly our April meeting with Dr Ganges; then on April 11th World Parkinson’s Day, there will be purple lights illuminating the Council Precinct, the Victoria Bridge and the Toowoomba Anglican School; I will talk about the raising of awareness on local ABC Breakfast session on April 11th; an interview on Megan O’Hara Sullivan’s Big, Little Small Talk on 102.7FM on Tuesday, April 16th at noon with Sally from Dance, Melissa from Choir and me from the Support Group; Purple Day photos from both Dance and Choir groups to send down to PQI to join other photos from around the State; and finally, our speakers at our May meeting on the 2nd.

d) At our next meeting on Thursday, May 2nd, we have Professor George Mellick to talk to us – he will also be accompanied by Miguel Diaz, the PQI CEO. I have not been given a blurb re George’s address but he is an interdisciplinary scientist who works on all aspects of neuro-degenerative disease with an emphasis on Parkinson’s Disease. 

5. There were too many things for me to relate from Dr Gange’s address and so I am really only able to pick a few points he made to mention below:

i. In PD, fast activity reduces. Slowness of movement is known as bradykinesia and it is the only symptom that is common to every case of Parkinson’s.

ii. Bradykinesia, combined with other symptoms such as rigidity and resting tremor, gives rise to a possible diagnosis of PD.

iii. Moving freely and appropriately is one of the main problems for PwP – movement becomes slower as well as uncontrollably faster, in some cases, and can cause falls. 

iv. PD is now recognized to be a complex disorder involving a wide range of non-motor manifestations, not just a movement disorder. There are over 90 features experienced by PwP.

v. More than just a loss of Dopamine in the brain can occur with PD. Other neuro-chemicals that can be reduced during PD include Serotonin, Norepinephrine, and Acetylcholine. With so many areas being affected to differing degrees within PwP, symptoms and severity of symptoms ranges greatly and hence everyone requires different medications and treatments.

vi. Non-motor symptoms can often be the most problematical for PwP rather than the motor disorders. Amongst the common ones are sleep disorders, hallucinations, constipation, fatigue, pain, urinary conditions, sexual dysfunction, body temperature regulation and cognition concerns. Because a doctor cannot see these and other problems it is important to tell your doctor about them and for your doctor to ask. There are ways that can manage these concerns – adding a new medication, changing a medication, changing medication timing etc.

vii. Take medications on time, every time and drink plenty of water!!!

viii. One thing that helps everyone is keeping up with exercise, in order to assist the muscles to minimise the effects of the disease as long as possible – this has been validated by research – aerobic activity; strength training; balance, agility and multi-tasking; and, stretching are all important. PD Dance is a good idea as exercise.

ix. Keeping your mind active is also very important to help combat some of the non-motor symptoms of anxiety, depression, and apathy. Meet up with people eg at support meetings; keep up with social outings; if you can no longer do something you enjoyed doing, find something else to take its place.

x. Build up your Support Network – GP, Specialist, Family, Friends, Support Group, Exercise, Speech Therapy. Speech Therapy is also about swallowing – and strengthening those muscles which can also be affected.

xi. Use Government Support – earlier rather than later eg NDIS and My Aged Care – register yourselves.

xii. Use other Government Support like the Heating and Cooling Subsidy.

xiii. Knowledge about your chronic condition is important. Having a diagnosis of PD is not the end of things – there are always advances being made and there are new options for treatment on the horizon. 

With regard to Dr Gange’s mention of the Heating and Cooling Subsidy, here is the link to the blurb and the form and I will have some forms at the next meeting as well. This is available to you if you have PD, even if you already have the Energy Rebate for pensioners and seniors. The subsidy is presently worth about $480 per year.

https://www.qld.gov.au/community/cost-of-living-support/concessions/medical-concessions/medical-cooling-heating-electricity-concession-scheme#Find%20out%20more

Looking forward to seeing everyone in May. I will send out reminders closer to the date of May 2nd.

Take care everyone.

Cheers Carol (46597646)

 Great roll up again for our meeting - please accept my apologies everyone that I don't seem to manage to get around and chat to everyone as much as I would like.  However, it is always nice to meet you at the door and eventually (and hopefully) put ALL names to RIGHT faces.

Our guest speaker, Tanya,from IAgeWell at the Sunshine Coast, did a great job talking about the changes coming to My Aged Care - apologies to those who are on NDIS but hopefully you gleaned some ideas from her address anyway for NDIS letter, interviews, planning and being an advocate for yourself or loved one. I was not expecting Tanya to cover the My Aged Care as she did.  However, since we originally planned her attendance, she had obtained more information about the new system and so felt it would be useful to pass this on - and it certainly was.

Summary of address:

1. The new system is being introduced over 3 years, starting on July 1st this year.  The main change this year is that the two assessments, initial assessment (referred to as RAS - Regional Assessment Service) for lowest level home support and then a later  ACAT (Aged Care Assessment Team) to access for entry to Home Care Packages will go back to being one assessment only where the assessment can lead to lower level or home care support depending on the circumstances.
2. In mid 2025 the number of levels will change from 5 (presently low level from Commonwealth Home Support Program and  4 levels of Home Care Packages) to 11 different levels that people can move through more smoothly, as required.
3. In mid 2026 the main change will be to ensure that the support one receives in their home is all organised by the one provider rather than being doled out to different service providers thus causing co-ordination problems. Presently, those on lower-level support have to deal with many service providers at the same time.
4. Those already on Home Care Packages in the present system will continue as they are as they have an umbrella over them with regard to the new changes.
5. There are some costs involved for SOME users of the My Aged Care services, depending on circumstances.  Ensure you are only paying what is necessary by talking to someone who knows - eg a care provider.
6. Suggestions discussed to ensure that assessors have the correct picture of the health situation faced by the person being interviewed are as follows:
   

a. Be prepared for the assessment - write down all of your difficulties, especially daily living.
b. Include social needs where you might require assistance to go out to activities.
c. Tell them what it is like on your WORST days and impress upon them that with PD these worst days will increase in number.
d. Project yourself into what your life might be like in 6 months' time as it might take that long for the support or extra support to come             through and explain that to them.
e. If you are having movement and/or balance issues, or they are starting) talk to the assessors about what equipment you need in the              house eg grab rails around the house, ramps around the house, personal alarm, a lift chair, a wheelie walker, a wheelchair, a lift bed. 

f. If the assessor wants to do the interview over the phone and you feel they would get a better understanding from a face-to-face interview,           then ask for one - you can insist if necessary.  Also with PD, fast thinking and talking can be a difficult problem for phone communication.  

 g. Try to have someone with you who can support you at the interview.
h. If you are having difficulties with the person on the phone, ask to speak with their manager or a different person.  Usually these                 phone calls are recorded so it is appropriate to be passed up the line when you ask nicely.
i. If you are the carer or concerned person and the person being interviewed glosses over their actual needs, you can ask for your own                private interview about the situation.
j. Remember that the home support for the person in need is for them alone and the carer should not be part of the equation in terms of            doing everything for the person - yes, some things but not everything.
k. If the assistance, you are receiving, becomes not enough, phone sooner rather than later for more help - either from the person's or              carer's perspective.
In my opinion, and this is just my personal opinion, any Person with Parkinson's being assessed should be in a face-to-face situation.  Communication of correct information is problematic for a PwP.  And even if the carer is with them, the PwP has the right to communicate as well as is possible themselves in such situations.  Plus, observing the person is quite often a different perspective of the assessment.
My other comment to this information, and once again it is just my thoughts, the Government will have to do some tip-top training of many more assessors than we have now.  Some experiences members have had, particularly with RAS assessors, have been verging on the unbelievable, in terms of any understanding of a person with a chronic disease or the stressors on carers and family members, and even the ability to write correct reports, and even interviewing the right person.
However, all the moves are positive ones in terms of making the whole system more manageable I feel.
Tanya has offered to help anyone out who is having difficulties with My Aged Care, which is incredibly kind of her as she is a very busy person.  if you would like to talk to Tanya in a small group or one to one it can be arranged - you can contact me, in case there are other options locally that I can suggest to solve your concerns, and if not, I will contact Tanya on your behalf and get you in touch with each other.

As well, Tanya spoke briefly about the project they have started at the Sunshine Coast, called Kindness Counts, and it sounds like an excellent scheme - they are trialling it now and hope to spread to other areas as time goes on.  Carolyn who travelled here with Tanya started this group up.  I think the best way to tell you about it is to give you the link to the website which explains it very simply - it is really interesting.  I hope eventually it gets going in Toowoomba.  Here is the link.

https://kindnesscounts.com.au/

At our meeting we also cited a recent incident experienced by members of our group who travelled to Brisbane for an appointment with only the medications they needed while down there.  Unfortunately, a fall by the carer meant travelling back was a question mark - but what to do when the PwP needs medications later in the day and the next day - not an easy situation.  

Suggestion - take a good supply of medications whenever out of town - sudden storms can cut roads or accidents can stop traffic.  Be prepared!

Next meeting is on Thursday April 4th - just after Easter, believe it or not. 

 Dr Nisal Gange will be addressing us about Non-Motor Symptoms of PD.  We have been so fortunate to have him actually offer to come and speak with our group.  He is very well experienced with People Living with Parkinson's.  Please try to come along, even though it is school holidays, because we would like to have a really big audience to glean as much as they can from him and ask many questions.

I will be sending reminders.
Meanwhile, happy days to everyone and take care.
Cheers Carol ( 46597646)
 

1. Apologies  for the delay in sending this review of the meeting - no excuses really  - just life (and appointments) getting in the way.
   What  a great start to the year - we had 63 people at our meeting - wow!  I  never know whether to be happy or sad to see so many people - absolutely  sorry to see so many people affected by PD in our area but pleased that  they have found their way to our group - hopefully we can provide  something to ease the burden - whether it be information, support,  someone who understands to chat to ...  Last meeting I remember 2 people  in particular coming up to me at the end - one new person who said 'I  have learnt so much!' and another regular member who said 'Every time I  come, I learn at least one new thing if not more'.  That is very  pleasing to hear, but remember, everyone learns from one another really  because living with PD is an experience everyone feels differently about  and those experiences can be passed on to others - it all helps.   Sharing is learning.
   Thanks to Janette for doing such a great job looking after the library as well as telling us about new books.
   Thanks  to Patricia for the financial report - we are in a comfortable place at  the moment and will not need to do fundraising this year.
   I  want to thank Terry for showing us his new wheelie - walker, sometimes  referred to as the Parkinson's Wheelie Walker.  It has a reverse braking  system - when you let go of the controls it stops (brakes) as compared  to always needing to squeeze the brakes to lock the w/w.  This makes it  easier and safer to sit down on and get up from as well as on a hill it  won't run away from you.  I have put a link at the end of this review so  you can have a look at it online if you want.  It has some other useful  options as well.  It is heavier and a bit bigger when folded but it  might 'fit the bill' for you and your needs.
   Thanks  to anyone who took posters and/or brochures advertising the support  available locally - they will be available again at the next meeting if  you happen to have found somewhere new to display or distribute them.
   As  usual there were plenty of handouts at the meeting and we try to vary  these for everyone to browse and pick up.  We always have out ones from  the previous meeting in case you did not make it.  
   There  are now four places in Toowoomba that offer PwP group exercise and we  had those places on handouts as well.  Contact me if you can't get to  meetings but need to know about the exercise groups.  Doing exercise  regularly is really important for PwP.  For many it is easier if they do  it in a group.  
   Dance  and Choir have now started and numbers at both have been excellent so  why not think about joining in.  At Dance we are presently working up a  sweat with Tina Turner.  Nutbush on a chair is STILL exhausting.  At  Choir we are enjoying a wide range of songs - always some 60s/70s pop  which brings back memories - and plenty of other fun songs.  I think Love is in the Air with it being Valentine's Day this week.
   We  always encourage members of our group to become members of PQI for all  the advantages they can offer all of us, and to also swell the numbers  of their membership when lobbying government groups for support for  PwP.  It costs nothing to come to our local meetings, and it costs very  little to be members of PQI, who have a Parkinson's Nurse available to  members for phone appointments, apart from other services which we  cannot offer locally.  Why not give them a ring and become members - 1800 644 189.
   We  chatted about Safety Alarms and Emergency Help.  We have a handout  available about Key Safes and how to let QAS know how to get into your  house in the case of emergency, like a fall.  One of our members has  recently purchased an alarm (also detects falls) that comes with a key  safe.  The advantage of this personal alarm is that it phones a call  centre that immediately deals with your emergency but also has all the  information of your needs (that you have PD; that you need regular  medications on time etc); your family to contact once they have dealt  with the emergency, as well as the details to access your house using  the key lock box.  It sounded very good and I have put a link below for  you to have a look - it is called safeTwear.  Others available  are BlueForce and LiveLife but I think, not sure, that safeTwear is the  only one with a call centre for wherever you are.  It is more expensive  because of this but it might be what you need.
   We watched a video entitled Managing Hidden Parkinson's Symptoms.   It is a very good video - useful in many ways.  It was a video from the  UK and we need to remember that medical services vary in the UK and  everywhere else to here.  What the video suggested though was that we  need to be aware of problems we have that could be part of the PD  syndrome but because many are hidden from, in our case in Australia, our  GP or specialist, unless we mention them, we might not get the relief  from them that we should.  As well they might not be caused by PD but  something else that requires attention - eg pain, tiredness,  constipation, hallucinations, brain fog, depression, apathy, sweating,  light headedness, skin irritations and many other problems might be PD related or medication related or might  not be related at all in specific cases and need to be followed up by  your doctor.  However, unless you mention what is impacting on your  quality of life, the doctor is not aware.  We gave out a useful  checklist of possible PD symptoms - most of which you will never  experience, but some you might, and then hopefully get some relief.  
   This  video we showed - I have put it on our website and have put the link to  the page below - to watch, to watch again or to show others, like your  family, so they know PD is a systemic problem not just a mobility  problem.  It is the first video on the page that the link will take you  to.  Just go to the page and you will see it, no bother, I am sure.
   We have some excellent speakers lined up for the next few monthly meetings.
   
2. March 7th Our  guest speakers for the meeting will be Tanya Dave, Gerontologist,  accompanied by Carolyn Roberts.  In 2017, Tanya started the I Age Well concept to empower, recognize and celebrate senior community on the  Sunshine Coast. Carolyn is involved in the Senior Service Hub which is  one of the services provided by I Age Well.  It is a personalized  support service to connect people with the right services.  It will be  very interesting to hear of these initiatives at the Sunshine Coast.
3. April 4th  Dr Nisal Gange is a local private geriatrician who sees many Patients with Parkinson's. He also presently  holds the position of Director of Geriatrics, Adult Rehabilitation and  Stroke Services (GARSS) at the Toowoomba Hospital. Dr  Gange has a special interest in the diagnosis and management of stroke  and TIA but also with various geriatric syndromes including Parkinson’s  Disease, memory and dementia, and medication rationalisation.  Dr Gange  spoke to us as a group in 2019 and we are really thrilled he has found  time to address us again.
4. May 2nd  Professor George  Mellick is an interdisciplinary scientist who works on all aspects of  neurodegenerative disease with an emphasis on Parkinson’s Disease. He  has an extensive research track record of grants, publications and  disciplinary engagement, is an active teacher of undergraduates and  postgraduates and is a previous recipient of National Teaching Award. In  addition, George has, for many years, been an advocate for people  affected by Parkinson’s Disease. He is currently the President of  Parkinson’s Queensland and Parkinson’s Australia, the peak State and  National not-for-profit advocacy groups supporting the Parkinson’s  community.  He will be accompanied at the meeting by some  representatives from PQI.  We are very fortunate to have George speak  with us face to face about PD research.
5. Here are the links for you.

https://www.ustep.com/product/standard-model/

https://www.emsas.com.au/safetwear-medical-alert-pendant/

https://parkinsonssupportgroup-toowoomba.com/links-chosen-by-members

Cheers Carol (46597646)

 Hello everyone
What a lovely way to end the year for our group meetings at the Blue Mountain Bistro last Thursday.  Members were still there chatting at 2 pm when we had to leave!  Remember though, both Dance and Choir continue their schedules until the school year finishes.
We had 72 actually attend the lunch with 28 apologies given by members with regard to the lunch.  Quite a number really.  How about clicking on this link to our website to see if you can spot yourself, family or friends at the lunch.  There are some great photos - lots of them.
https://parkinsonssupportgroup-toowoomba.com/special-events-2023

Scroll down further on the same page and you will also see our centenarian member, Muriel!
There are also some new photos in our Dance section from our visit by Erica Rose if you fance having a look under 'DANCE' on the website.
Just a couple of things before I close off.

1. Thank you so very much for the lovely surprise of that very special gift from the group (and especially Janette for her marvellous mosaic work and Patricia for her lovely words).  I would just like to say that I really do get more from being part of the group than I can ever give to it.  Thank you all sincerely.
2. Hope everyone finds the wristbands that the Group purchased for distribution to all our members with PD useful.  It would be nice to think that we will never need them because everyone has a good understanding about PD but I don't think that will happen any time soon.  There are myths as well about PD and it is always best to ensure you check any information you might hear with PQI or your GP or Specialist.  For example, using oxygen is certainly not harmful to PwP - to think that it is harmful is an example of misinformation as are these other seven misconceptions identified in the link below. Take a quick read.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/parkinsons-disease/myths-and-facts-7-parkinson-disease-misconceptions
       3. We have a few guest speakers in place for 2024 including Dr Nisal Gange in April.  Dr                 Gange a specialist in geriatric medicine. His focus is on stroke and  transient ischaemic attack (TIA), Parkinson's Disease and complex geriatric conditions   including dementia, falls and medication management.  Dr Gange will speak in April  and we also hope to have Professor George Mellick who is Chairperson of PQI and an               interdisciplinary scientist who works on all aspects of neurodegenerative disease with                 an  emphasis on Parkinson's Disease speak with us in May.  We are approaching others             including an advocacy service ADA  Australia; IAgeWell speakers; Don Burstow to speak   on grief and death (sounds macabre but is extremely interesting for all).  If there is any aspect you would like us to try to find a speaker for, please let me know by phoning   46597646 or emailing me back.       

 4. Here are details of the ADA contact if you feel you need an advocate to assist you with               problems you are experiencing with eg NDIS, My Aged Care, HomeCare Packages;                   treatment in Aged Care facilities.  Firstly, try lodging a complaint with the provider group               and then if there is no improvement you can go to  ADALink (Aged and Disability                         Advocacy -  Nikki Coombs 1800700600 / 37362017; 47 Bellevue Street).  Another                       avenue is the Aged Care Quality and Safety Commission (1800 951822).       

 5. Just so you know, it is Council parking rules under the Library with fines when             necessary.  Hopefully you are OK to park there in a 2 or 3 hour park and get out from     the meeting in time.  Those with a Disability sticker are fine for however long as long as   you are in a Disability Parking spot or a spot identified as a half hour or longer.  Maybe    if  you have a Disability Parking sticker it is best to take a 1 hour spot and leave the 2       and 3 hour spots for those without a sticker.  You can also park in Grand Central off Little             Street, not too far to walk to the Library.  Some people chance the Swimming Pool                       Parking area but I am not sure of the situation there.
Our next meeting will be on Thursday, February 1st.  It will be a social lunch with discussions about non-motor symptoms.

I am sure to have to send something on to you at some time before our February, 2024 meeting but, meantime, have a wonderful Festive Season.  Take care and be good, or Santa won’t visit you!!!   

Cheers Carol 

  Hello everyone

Another busy meeting for October and we touched on a lot of things in a short time. Here is a brief overview for you. If you want further details, please contact me and I will fill you in further.

1. While our numbers continue to grow, there are some when they make contact, identify that we were hard to find. These are people who do not manage to use the internet. Next year we will go back to advertising our meetings regularly by newspaper, radio and TV community outlets, as we did pre-Covid days.

2. We have paid for a grab rail installation at the front door of the Dance Studio where we attend Dance for Parkinson’s classes.

3. Our Xmas Lunch numbers continue to grow so, if you want to join us, please contact us asap by phoning (46597646) or emailing me back.

4. We again suggested to our Support Group members how worthwhile it is to become members of Parkinson’s Q’l’d. There are many reasons but, for me, mainly it is about swelling the numbers so that when Parkinson’s Q’l’d lobby for Government support for People with Parkinson’s (or together with other states and the national body) the Government can see that there are many, many PwP who need Government assistance in many ways. Also, we have access to a Parkinson’s Nurse through PQI; a useful newsletter 4 times a year (our Group often features); a team that works hard to provide educational outcomes around the State, provides posters and brochures, runs fund raising activities and media coverage.

5. Our Parkinson’s Carers Group, led by Wellways Carers Gateway, has started sessions with a focus on identified topics of importance to the group.

6. We wish Margaret and Mary all the best in their Bridge to Brisbane Fundraiser for PQI later in the month.

7. There has been quite a bit of research into riding exercise bikes when you have Parkinson’s and, while it won’t cure PD, it does appear to help the body manage symptoms for a longer period of time. Research is still ongoing. We provided a handout about this so that perhaps some people might find it a useful activity over the holiday period when many of our usual places for exercise close down.

8. Our group will be getting a new email address, possibly over the holiday season. I will keep you updated by email when this happens.

9. One of our former members is turning 100 in November. We have asked Peter, our in-house calligrapher, to pen a card for her from our group. So you can still live a long time with PD.

10. We have asked the group to think about speakers for next year. We are organised for the first 3 months, hopefully, but would like some more suggestions for later in 2024. We have suggestions for someone from an Advocacy group; someone from Burstows (I know, sounds grim, but having heard their presentation before, it was unbelievably interesting and uplifting).

11. Our guests were from PQI – notes are as follows – 

· Miguel Diaz – CEO from PQI – Miguel spoke about the advantages of being PQI members – not expensive and well worthwhile; the November Seminar for Advances Parkinson’s Disease (I have already sent information on this since the meeting and some of our group are attending); future fund raising efforts; future plans for raising the awareness of PD in the community; hopeful plans to bring Prof Simon Lewis and researcher, Prof Bas Bloem to Queensland; the need for national training for Parkinson’s Nurses. We explained some of the difficulties faced by members in small country centres; when interviewed by people with no knowledge of PD at all; with bureaucracy.

· Sarah Tagg - Member and Volunteer Support Officer – unfortunately Sarah will be leaving PQI shortly but her contact with groups has been invaluable.

· Michelle Stafford – Education and Awareness Manager – Michelle spoke of the work she is doing on training for organisations about PD – the trials and tribulations of having a group for long enough in their busy schedules; the need to reach a range of people who need to know - from assessment interviewers for NDIS and My Aged Care to nurses to GPs to Nursing Homes ….. We talked about the need to be our own advocates in the systems and how difficult that is sometimes. We talked about using Advocacy groups when needed.

Our next meeting is on November 2nd and it will be our Xmas Lunch meeting at Blue Mountains Hotel Bistro, as per information already sent. There will be a reminder of the lunch sent out in about 10 days to try to finalise numbers.

I will also send some other information I did not have time to mention at our last meeting after our lunch – just don’t want to overload everyone with it right now. It can wait.

Thanks everyone.

Hello everyone

Last Thursday was a beautiful Spring day and we had a great turnout for our meeting with over 40 members attending.

Main points from the meeting were that:

· There are always handouts available from past meeting so members are free to take what they want at the end of the meeting.

· I spoke at the Rotary Group who donated so generously to us earlier in the year and they responded very nicely to the address plus the President, who writes for The Chronicle Opinions page regularly, very kindly wrote an article about his experiences of PD with friends and ensured our Group’s contact details were at the end of the article so that was a bit of extra advertising we were not expecting. Thank you, Greg.

· Our Choir and Dance sessions continue to be very well attended. We are donating the installation of a grab rail to the Dance Studio’s new front entrance which will be handy for all and a bit of a thank you to Sally and all she does for our group.

· The Wellways Carer Group Planning Session has full registration numbers and we look forward to it happening on Wednesday, September 13th. We will report back about the planning.

· We have booked for our End of Year/ Xmas Lunch at Blue Mountains Hotel on Thursday, November 2nd.  This lunch is our actual November Meeting.  It is a social meeting. I have attached a flyer with all the details. We do need to know numbers beforehand so please book in with us on the phone numbers provided or by emailing me back.

· I have to thank Deb for doing such a great job setting up a Zoom session with our guest speakers from Sunshine Coast University. It went off very well technically and the information they provided was really excellent and useful for all of us to know. I will give the main points of their address below. 

· Our next and final formal-type meeting for 2023 is on Thursday, October 5th and we will be finishing on a high note by having a number of staff members from Parkinson’s Queensland come up from Brisbane to address us on a range of subjects of interest to us. So put this in your diary!

Cheers Carol  

Useful info from the Zoom meeting!

· Ryan and Rachael described their roles as Neurological Nurse Navigators – there are Nurse Navigators in most areas of large population but there are not as many Neurological Nurse Navigators. Most hospitals in regional areas would have General Nurse Navigators.  

· Because they are neurologically-trained, they see many PwP and their role is both in the hospital but more often than not, in the community, as follow-up from the hospital.

· Rachael talked briefly about understanding what was happening to the body of a PwP so that we could understand why certain procedures are used in therapies for advanced Parkinson’s. She made the link between the gut and the absorption of medication and how important it is for a PwP to clear out their bowel every day, so that the medications can be absorbed to do what they are supposed to do. The window for finding the ‘sweet spot’ for each PwP reduces over time and so other options are looked at when oral medications or patches are no longer working (or never did) well enough for the PwP.

· Ryan went on to explain the different procedures briefly but thoroughly – Deep Brain Stimulation; apomorphine pens and subcutaneous injections and infusions; duodopa pumps. DBS possible patients are referred to Brisbane as the operation is not available presently outside of Brisbane but the two others are done on the Sunshine Coast and in some other centres. With both the apomorphine and the duodopa, it is all about getting the medications into the system by bi-passing the stomach so they work more effectively. 

· A person considering DBS needs to talk at length with the neurologist who is possibly doing the procedure so every question they have has been answered by the person who best knows.

With a patient who has already had DBS and they come into the hospital for any reason, it is important for staff to know straightaway that they have had DBS. This is where PwP, or their supporters, must advocate for themselves – wear alert tags; carry documentation; show the staff; bring any equipment used for the DBS; bring details of the company who provided the DBS. Once staff have that information they contact the company who provided the DBS equipment and get guidelines for everything from the people who know. 

· If a PwP is having a hospital procedure, then all will have been planned by the specialist with a neurologist so that medications used match what is required by the person in recovery. There are many options the neurologist has to provide an appropriate medication regime even if the patient cannot swallow, until the patient recovers. If the PwP is in emergency, the neuro team will be called in to advise on medications that will quite possibly replace those the PwP is already on until the emergency is over. It just depends on the situation.

· Nursing staff are not always fully aware of the particular problems faced by a PwP in a non-neurological ward in a hospital.  In a perfect world they would be aware. However, they usually do not see enough PwP to be able to able to remember necessarily from patient to patient, which is understandable. You will need to ensure you advocate for yourself so things can be noted – your medication regime must be kept to; you need assistance with certain things etc. This is where it is so very important to advocate for yourself or for your loved one to do so – speak up and talk to the right people.

 Hello everyone

We had a very busy meeting as usual. Three new couples joined us. Main points from the meeting were:

1. We discussed our financial situation and explained the need to operate our finances through PQI for compliance. We also explained that we are moving to online rather than cheques.

2. With choir numbers having grown, we are reducing the cost to $2 per session as we will be able to cover room hire costs with that reduces amount.

3. Dance classes are shifting to Railway Street later this month and we will let dance members know when this happens.

4. Carol will speak at a Toowoomba Rotary Inc meeting on August 28th to thank them for their donation and tell them about Parkinson’s Disease and our group.

5. There will be an initial Wellways Carer Gateway Meeting on September 13th to plan for a Parkinson’s carer Program in 2024. When flyers are ready Carol will forward these.

6. We had prepared 2 handouts for the group – Getting the Most out of your Parkinson’s Medications and Avoiding Falls.

7. We reminded the group of the many Government assistance options there are available and had some forms available for people – Disability Parking; Carer Allowance; Taxi Subsidy; Heating- Cooling Subsidy; Companion Card.

8. Mary let people know that she is in the Bridge to Brisbane Fundraiser for PQI and would like supporters – Carol will email the GoFundraising link to everyone. 

9. Val let members know that she is following up on a falls alarm watch that is available through Medicare and will let everyone know what she finds out.

10. Shirley informed the group of a new Package provider now operating in Toowoomba – this group have had a good reputation in Brisbane. They are called Five Good Friends and they can be contacted on 1300787581.

11. Janette informed us of some interesting reading in our library.

12. Our guest speaker was Melissa Forbes, Assoc Professor Contemporary Music, UniSQ. Melissa has been involved in our choir from its initial stages and spoke about the value of singing as an adjunct to speech therapy for PwP, not at all a replacement but a chance to practise the loudness, the enunciation, the breath control that PwP work on during speech therapy. Other points that Melissa brought up included – 

· Some think they can’t sing but only a very few people with a medical condition can’t actually sing – sometimes it is perception; sometimes it can be that you were told by someone you couldn’t sing …..

· Singing also has value for making a person feel happier by stimulating endorphins in the brain.

· Singing raises the spirits and brings enjoyment.

· By combining movement with songs, by singing rounds etc, we are challenging our brains by multi -asking.

· The choir is a great social outlet. It leads to a real bonding and collegiality.

· It is also an outlet for ‘carers’ and something that couples can happily do together.

· A Parkinson’s Choir is a very supportive environment – we are all there for the same reasons and we all understand one another.

· A Parkinson’s Choir is fun and is not judgemental.

· There has been much research done about Singing and Parkinson’s Disease and it is all positive.

Melissa had us sing together and all her points were proven to be true in that single activity – smiling faces and a rise in energy levels as soon as we started singing.

I would like to add here that we are very lucky to have a range of excellent choir leaders who have taken on their roles with gusto; have made it their business to understand Parkinson’s Disease and it symptoms; have read researched information about what works for PwP when singing and what doesn’t; work as a group to improve sessions for the choir – something that we would not have if we only had community groups to sing with, rather than a specialised group as we have with Park ‘n’ Songs Choir.

13. Carol will book the Xmas Lunch in November at Christopher’s, The Blue Mountain Hotel.

14. Next meeting is on Thursday, September 7th. We will be zooming with 2 Neurology Nurse Navigators from the Sunshine Coast Hospital. More information about the topics to be covered will be given when I send a reminder about the meeting.

Take care all.

Cheers Carol

Hello everyone

At this meeting we tried out the larger room which we found much easier for movement. Being spread out, it felt as if there were not as many people at the meeting but we had well over 40, a little down to usual because of the school holidays.

REVIEW

· We extended our sincere sympathy to Sue English on the passing of her Richard. Both were regular friends, members and supporters at our meetings and we will miss Richard, and want Sue to know we are thinking of her.

· We thanked everyone for such successful Luncheons in early July – we made a profit of over $1700 which was wonderful.

· Our Group Library is open for business with some new books that sound very useful. If you want to borrow and can’t get to the meeting phone me on 46597646 and let me know the type of book you want – Parkinson’s Information; Books for children about PD; books to address management of feelings and concerns…

· Alfred from a new mobility shop in Toowoomba came to meet us – Active Medical Supplies, Toowoomba Showroom 11 Grange Street.

· Earlier in the year, we approached the Rotary Club of Toowoomba with regard to a donation to our group when they discuss local support funding and they have just provided us with $1500 as a donation to our group. WOW! We were blown away by their generosity. Thank you so very much.

· Two members were recently featured in the Toowoomba Chronicle – Margaret Curnow for her OAM (congratulations!) and Jennifer Gillan for lighting the flame on the Legacy Walk (well done!)

· There has been an initiative from Parkinson’s Australia / PQI, which might come to fruition in the future, to provide training for GPs to recognise the symptoms of PD earlier, which would be a great step forward.

· Our guest speaker was speech therapist, Rhylle Chandler Polke, who spoke to us about PD and the difficulties it can cause for speech and swallowing. The main points made were:

§ PD affects all muscles and it is easy to forget that the muscles around the diaphragm, neck, moth and face also have muscles which do very important jobs.

§ An early start to strengthening the muscles involved in speech and swallowing the better the outcome can be.

§ LSVT (Lee Silverman Voice Treatment Program) is the speech program which is used by speech therapists to improve voice projection, quality and loudness. It is intensive at first and then requires practice and review. Clients are assessed first to enable improvements to be noted during the course.

§ Swallowing can be an issue when the strength of the cough and of chewing is reduced. As well the epiglottis can be weakened. This means that some food can slip down into the airways and then into the lungs eventually causing pneumonia.

§ There are specific exercises which can help to improve swallowing what a speech therapist will use.

§ EMST (Expiratory Muscle Strength Training) is a useful apparatus which provides home practice in strengthening muscles on expiration and is gaining some good reviews in present research. 

§ There were some handouts at the meeting that Rhylle provided for us. Please let me know if you need copies.

§ You can contact Rhylle at Bluecare on 4636 9525 for an assessment, leave a message and Rhylle will get back to you.

· If you find that BlueCare is booked out with Speech Pathology clients, there are a few other options I know of, so you can contact me for information.

· At the next meeting on Thursday, August 3rd, we will have Melissa Forbes from the USQ who will speak about the advantages of singing for a Person with Parkinson’s and how that actually works. Melissa has been involved in studying this for a number of years.

Take care everyone and stay warm.

Cheers Carol

Hello everyone
Another large gathering for our June meeting and it is nice to know that we can extend the size of our room from next month so that will be much easier for everyone. 
Review of meeting.

•  At the last meeting I forgot to remind members of the table with handouts from the past couple of meetings - just so you know I always have those available for you to catch up on if necessary.
• The Rock Climbing article which caused some hilarity amongst members is discussing rock climbing in gyms with safety belts etc.  I must admit even that still conjures up some amusing situations.  I think Joe would have given it a go 13 years ago when first diagnosed.  
• I have certificates for the businesses who donated vouchers for our raffles - I am carrying them with me presently to all Parky activities so please come and get the one for the business that gave to you a voucher when you were canvassing for support.
• Everyone seemed to agree that articles or videos that were about PwP doing things that showed effort, resilience, adapting to needs were useful positive reading and watching so we will keep on with regard to providing some of these.
• Shirley mentioned that the crayon shaped stylus is available from Amazon very cheaply and that it seems to do the job with both laptops / tablets and mobile phone screens.  Thanks Shirley.
• Val is hoping to bring some pill boxes to share with members who are interested. Thanks Val.
• Our lunches are virtually sold out so we are looking forward to enjoying ourselves on the 5th and 6th - thanks to all for all efforts.
• Jacqui and Ellie gave us some excellent information about the assistance that they can provide to us.  Amongst the main points are :-

1. Contact details are Jacqui, My Aged Care Specialist Officer on 1800 227 475 and Ellie, Financial Information Services Officer on 132 300.  Some of you managed to receive their handouts.  They have sent me the handouts electronically and I will forward them to you all on a separate email shortly as adding too much to this email will possibly cause problems with some email providers.
2. These two roles sound as if they can help us immensely to gain and keep the services we might need as PwP.  They can help check what we are eligible for; approach services for us; provide the right forms and assistance for us; help review any concerns or problems. The services are independent of Centrelink; you don't need to be on any benefits for the advice; it is free and confidential.
3. I have confirmed that the 70 day exchange of unused Home Package funds when changing Home Care Package Providers only affects the accumulated funds, not the everyday funds that keep your services running smoothly.  I will have further info with me at the next meeting .  The key is to choose your new provider and meet with them before deciding on dates of finishing with one provider and starting with the new provider.  Then you can manage it all without missing a day of support.
4. It is good to remember we have Advocacy groups available to us for difficulties we might experience with the government departments, home care packages, CHSP, NDIS and Nursing Homes.  I think we should have a group or two come to talk with us about those services next year.  I will put it on the list.

• Our next meeting is Thursday, 6th July. Our guest speaker will be Rhylle Chandler Polke, Speech Therapist at BlueCare. Rhylle provides the LSVT program to help increase voice volume and also has plenty of other information to impart. 

Look forward to seeing everyone then but also many of you at the lunches this week.
Thanks all and take care.
Cheers Carol
 

 Hello everyone
Another busy meeting with plenty of members coming along to share lunch, have a chat and stay for our display from Spectronics.  We also welcomed some new members.  We are considering booking a larger room.
Thanks to everyone for the great response to our lunches and voucher raffles - there are some limited places left on both June 5th and 6th if you still hope to come to lunch.  It will be a fun lunch on both days!  Our raffle will certainly be a winner with some fabulous voucher prizes - thank you all!
It is not an easy task finding presenters etc for meetings - especially when it is someone, or a topic, we have never had before.  George and Jamie from Spectronics Assistive Technology certainly brought a wide variety of items to display.  We are hoping that many of those items we will not ever have to consider but it was certainly interesting to see what is now available for people with needs to use.  There were some items we were very interested in - the loud, easy-push alarm (we are thinking in our bathroom); the microphone for the soft voice (Joe's obviously, not mine), and the stylus shaped like a crayon to use on the phone and laptop.  If you need to contact Spectronics it certainly does sound as if they would be very helpful and their guarantee to always service or advise on any items bought from them was great.  Their phone number is 38086833. 
Joe and I stuffed up our script to demonstrate our personal alarm - sorry - however I have attached more information about it if you are interested.  The LiveLife alarm is not the only one you can get - I have attached an article from Choice Magazine about personal alarms which might be helpful if you are browsing the internet for what to purchase.  The personal alarm certainly gives us some peace of mind in Joe's and my situation, and if you are the only one in your home it is certainly good to know if you fall you can contact someone.
The other items we showed were

• an Echo Dot for direct voice communication to provide you with music, news, information etc etc
• a Fire TV Stick for voice control of TV and streaming programs.

Both of these, which we happen to have, are Amazon designed but there are others.  JBHiFi has a large range but do talk to some experts about what will best suit you and what you have at home in the way of technology and get someone who knows how to set it up for you.
Our next meeting is on June 1st and I will send a reminder as the time gets closer.
Our guest speakers will be 

Jacqui Hadfield, Aged Care Specialist Officer with  Ellie Mann , Financial Information Service Officer at Centrelink.   Come along to hear about My Aged Care possibilities for assistance and how to navigate the system.

Take care everyone.
Cheers Carol

 

Hello everyone
Well what a busy meeting - we had 58 plus our speaker.  We have sorted how to set up the room in a more comfortable way for the next meeting to accommodate larger numbers from next month.
There were a few things I forgot to mention from my notes which I will mention now.
Firstly, we were discussing the wide range of symptoms people experience with PD, and I wanted to reiterate, as is mentioned on the handouts we provided, that it is always best not to assume that everything that happens to one's body is caused by Parkinson's Disease as many symptoms of PD can be caused by other medical conditions which could well be addressed easily by your GP, and relief found.  So it is best to always get problems checked out rather than just think they are caused by PD.
Secondly, I wanted to thank one of our members, Janette, and her daughter, Bec, for the work they put into producing the lovely tickets for our lunches. And then, having to change them with a new venue just before the meeting.  Your work in doing this is much appreciated and admired.  Thank you both.
Thirdly, I want to thank Patricia for all the work she does as not just Treasurer but also sorting such things as the lunch for seating etc - it takes an ordered mind to handle this and you do a great job, Patricia.  If Patricia wanted to do a TAFE Certificate in Event Planning I am sure her work with us would count as prior knowledge.

Now to look at the main points from the meeting.

•  Luncheon tickets are now on sale even tho' we had an early hiccup with a change of venue to Thai on High - please see the attached flyer for details.  Tickets are selling well so contact Patricia as soon as possible.
• We need some support to gather as many vouchers as possible for our voucher raffle at each of our lunches so if you can approach a business or friend who can supply one or if you would like to donate a voucher yourself, please, if possible, bring them along to the next meeting.
• There was a brief report given about the Support Group Coordinators' Meeting with Michelle at PQI last month.  The main point of interest for us to take on board was the possibility of a Zoom meeting with PQI for them to explain some initiatives they have underway including an online based Advanced Care Plan which can be easily updated.
• April is World Parkinson's Month; World Parkinson's Week begins on April 10 to 17; and World Parkinson's Day is Tuesday, April 11th. With this in mind the following activities have been planned, or have already happened, in Toowoomba.  1. An interview, now turned podcast, with Megan O'Hara Sullivan for her Big Little Small Talk on FM radio with five of our members - now available on our website on the Special Events page and on the 102.7 Facebook page.  2. Special Raffle for our last meeting with two PQI Grab Bags being given away - helpful to have ready for emergencies.  3. Posters given out to group members to put up on display and notice boards.  4. T'w'mba Regional Council lighting up Victoria Street Bridge and the back of the library on the evening of April 11th with Toowoomba Anglican School also lighting up their grounds - all of course in the Parkinson's colour of purple.  Hopefully PQI have had enough time, with all the public holidays, to contact local media for coverage.  Keep an eye on 7 local news on the 11th or 12th - fingers crossed - or take a drive and have a look yourself.
• Kieren Burns from Carer Gateway (Wellways) addressed the group about how their organisation can be of assistance to carers.  Main points that Kieran covered apart from answering many questions from the group were:Assistance can be delivered in-person, on-line and over the phone.
  Best to register so assistance is available asap - phone 1800422737.
  Services include Carer Support Planning and Referral; Counselling; In-Person Peer Support; Facilitated Coaching and Groups; Tailored Support Packages; Planned and Emergency Respite Care.  The services are very helpful to a person who is challenged with caring for someone in their life.

Our next meeting will be on May 4th and our guests will be from Spectronics in Brisbane who supply Adaptive Technology and will be very worthwhile.
Finally, a message that is very important is that People who live with Parkinson's, and their loved ones, are not DEFINED or CONFINED by the disease. We are still the people we have always been, just certain things need to be done differently.  This is brought home by two links that I will pass on to you on the evening of World Parkinson's Day, and then, hopefully, add to our website.  The stories are about 4 PwP (including Michael J Fox) who started with all  initial fears and anger and confusion that diagnosis can bring but find that their lives have actually taken a course that may well be more challenging but also more fulfilling because of their diagnosis.  This sort of view always sounds like 'Pie in the Sky' but it is interesting to hear how people cope with adversity in their lives so keep an eye out for my email on the evening of World Parkinson's Day.

Take care everyone and we look forward to seeing you in May.
Thanks all.
Cheers Carol
 

Hi everyone
Over 40 at the meeting - a bit of a stand-out number - and there was plenty of food for lunch - what a spread!
Main points from the meeting were as follows:

• Our Lunch with the Parkinson's Bunch will be held on two days to allow more people to attend.  It is on Monday, June 5th and Tuesday, June 6th.  Our main purpose is to provide a social gathering for members plus raise some money for our group to put towards other activities and usual costs; as well as donating some to PQI and research (to be decided once profits are made).  Please contact Carol on 46597646 for details.  Please also consider donating or approaching businesses for a voucher for our voucher raffles at the luncheons - this is how we will make our main profit.
• Driving and Parkinson's information was distributed.  While the information from a meeting with the Main Roads and the Police we had last year outlined what we should do, some points needed clarifying and hopefully this handout will do that for everyone.  Handouts available by phoning 46507646..
• Accessible Accommodation was discussed with information about using accessible cabins at Caravan Parks being a good option.  Often one needs to ask when booking as places do not always advertise availability of accessible cabins.  There are some travel agents specifically for accessible accommodation (cabins, hotels etc) and the link below identifies one that we know of but there are sure to be others.  Have a look at the link as we get some useful newsletters from them about possibilities.  I will also try to put their information on the website with others after I have done a bit of research.
• A reminder that Gold Kiwi Fruit contain a natural laxative.
• There will be changes to the HomeCare system in mid 2024.  If you are starting to think that you are needing some assistance at home, you might like to think about asking for a My Aged Care assessment now rather than later on in a new system that will, no doubt, take administrators some time to sort out, as happens with all new systems.
• One of our members has a daughter involved in an Art Exhibition in town at the The Lighthouse Centre, cnr Hume and Margaret Sts.  It is called Intertwined and sounds very interesting.  Please see the attached link below .  Sounds like a pleasant thing to visit.
• Our speaker, physiotherapist, Fiona Sands, gave us an excellent talk about the use of Nordic Walking Poles - for all of us not only PwP.  It provides very useful exercise for a wide range of muscles in the body.  It provides support and balance and a chance to stretch your gait, a chance to look up and straight ahead. Joe and I have actually decided to give it a go and plan to have a session or two to be sure we are using them correctly.  If anyone is interested and fancy doing it with us, please email back and we might be able to set up a group session.
• Next meeting we have a speaker from the Carer Gateway (Wellways) to inform us about what Carer Gateway does and how the organisation can be of assistance to us.  This meeting will be on Thursday, April 6th, usual time and place.  There will be a reminder email about that forthcoming meeting in a couple of weeks.

Thanks everyone.  Take care and let's hope that this humid weather is on its way out.
Cheers Carol (46597646)

https://www.thefieldguidetoowoomba.com/blog/intertwined-mc-363dfgs45-55m98-n8et9

https://mailchi.mp/theaccessiblegroup/oo540n8pmj-17022852?e=cb05329a44 

Hi everyone

Great start to the year.

1. REVIEW

• It was great to catch up with a longer than usual chat over lunch before the meeting proper got started.
• With our numbers as they are, ever increasing, and our brochures and website available for new people, it was decided to not do further advertising of our meetings in local media.
• We have reinstated a voluntary gold coin at the door of the meeting to assist in covering costs of room hire etc.  All attendees are put in for a raffle draw of a platter of fruit at each meeting.
• Our bank balance is quite healthy with regard to covering expenses but as our expenses are about $1000 per year without anything going wrong eg equipment breakdowns or donating to research etc, we feel it is time to look at a few options of topping up the coffers so we are planning a function to raise some money and have a social gathering - more information at the next meeting.  We have also put out feelers with some local charitable groups for some financial support.
• New brochures are being distributed to medical centres and pharmacies by members and mailed out to specialists in the area.
• Our website has now had over 3500 visitors since being launched in September 2020.
• There are many ideas for guest speakers and the committee will endeavour to approach these people.  If you have further ideas please let us know.
• Dance and Choir have recommenced with excellent numbers in attendance.  If you fancy coming along to one or both, please just contact me for more details.
• An initiative this year is to have a range of sessions available for people who are carers/ spouses/partners/supporters of PwP. These we hope will be facilitated through the Carer Gateway with a number of issues, information sessions, help sessions being run specifically for those with Parkinson's in their lives.  The first steps towards this have been made and we are now waiting for responses which so far are very positive by Carer Gateway.
• With a number of new members, we revisited some of the important issues of PD with regard to medications and exercise.  We did this by watching a couple of brief but to the point videos which are noted below (the videos are on our website):                                                                     1. Taking Levodopa - main points - always take on time whenever possible/take a half hour before eating protein or an hour after eating protein whenever possible; take with a full glass of water; try to ensure you are never constipated.  All of this is about the facts that protein interacts with the drug and reduces its effects, and, that to get the most from your medication you need to flush it past your stomach into your upper intestine where it is properly absorbed into your system.                                                                                                                                                                     2. Exercise - main points - start exercising immediately and regularly to improve strength, preferably 30 minutes at a flat out, unable to converse level at least 4  times per week - also use physiotherapy  for balance etc; speech therapy to strengthen voice and swallowing before you start having difficulties; cognitive training activities (which we all need as we get older but especially PwP). 

2. YOGA  
There are not enough members interested in an initial session of Yoga for Parkinson's so we will not be going ahead with that.  If you are interested I can give you details of the Yoga teacher to contact who will run a session for you at hers or come into your home.  Please contact me if you like.
3. OUR NEXT MEETING
Our next meeting is on Thursday March 2nd and I will send another reminder before the date.  Our guest speaker will be Fiona Sands, a physiotherapist, who will talk to us about the use of Nordic Pole Walking for PwP.  I have added a brief video below in the hope of peaking your interest - it is an activity catching on for all - not just PwP but for older people and others.  Some research has been done on a group of PwP taking up pole walking, with positive results.
Take care everyone.  See you early next month.
Cheers Carol
https://www.youtube.com/watch?v=MS6OkFoB9Vk