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    • About Us
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  • Home
  • About Us
  • Meetings
  • Newly Diagnosed
  • Choir
  • Dance
  • Exercise Options
  • Useful websites
  • Special Events
  • For Carers
  • Government Support
  • Travelling with PD
  • Travel Experiences
  • Local media coverage!
  • Personal Stories
  • Members’ Pastimes
  • Links chosen by members
  • Handy Hints from Members
  • Of Specific Interest
  • Contact Us

toowoomba parkinson's support group Meetings

When?

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

First Thursday of each month from February to November


NB      NEXT MEETING: Thursday, OCTOBER  5th, 2023


Our guests will be the following staff members from Parkinson's Queensland:

Miguel Diaz - CEO

Michelle Stafford -  Education and Awareness Manager

Sarah Tagg -  Member and Volunteer Support Officer 


Together they will be explaining their roles to us and  providing an update of current PQI activities and plans.  They will also answer any questions we might have. 


We will share lunch and have a chat from 11.30am with the speakers at 12.15pm.


If you have any queries please phone Carol on 46597646.


Where?

Meeting Rooms

Level 3

Toowoomba Regional Library

Victoria Street

TOOWOOMBA





What happens at meetings?

Our meetings are friendly and informal.  We often have guest speakers with expert knowledge about topics of interest to People with Parkinson's eg Parkinson's Nurse to speak about medications; dietician; physiotherapist; pharmacist; psychologist ...  


Sometimes we invite speakers to provide information about local topics of interest eg local councillor; police ...  


We also organise meetings where knowledge from group members is imparted to others, because no-one knows more about coping with Parkinson's Disease than a collective of People with Parkinson's. 


We share lunch plates and have a cuppa; run a small door raffle; and, enjoy one and others' company. 


We sometimes use the May meeting to fundraise by running a 'Lunch with the Parkinson's Bunch' which has become a very popular event with 160 tickets always selling very quickly.


Our final meeting in November takes the form of lunch out together at one of the local restaurants.

Meetings notes 2023

september 2023

september 2023

september 2023


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.

august 2023

september 2023

september 2023

 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

JUly 2023

september 2023

JUly 2023

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

JUNE 2023

april 2023

JUly 2023

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
 

MAY 2023

april 2023

april 2023

 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

 

april 2023

april 2023

april 2023

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
 

march 2023

february 2023

february 2023


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 



 

february 2023

february 2023

february 2023

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

 

Meetings notes 2022

november 2022

   

Hi everyone


What a great end of year lunch. It was so wonderful to see so many people there – 70 through the door, with 14 specific apologies for not being able to attend. Everyone appeared to have a good time and it certainly sounded like it as well. I was amazed by some of the stories I heard – in fact from four different people at the lunch - about their unexpected ‘blast from the past’,  meeting up with someone they had not seen in years – from schooldays; from teen years; from early work days. What a small world it is!  


It was nice to meet the PQI representatives - Susan for the first time and, of course, to welcome back Fiona.


Thanks to Patricia for her hard work in putting the lucky door gifts together – we hope the winners enjoy them. Thanks also to George for managing to move around the tables and take a few photos for me. I will be updating the website later in the week with some of those photos so you can have a look to see if you can find yourself.  WEBSITE NOW UPDATED WITH PHOTOS FROM LUNCH.  PLEASE SEE 'SPECIAL EVENTS PAGE'.


I mentioned that the committee group would be meeting in December to do some planning for next year. We would love to welcome anyone new and if you fancy joining us, here are the details but please phone me on 46597646 to let me know you are coming so I can sort chairs, drinks etc.


Thursday, December 8th from 2pm to 4pm at 14 Moloney Street, North Toowoomba.


If you can’t make it but want to offer assistance (there are always jobs to be done) or to put forward some suggestions, please do so by return email. We would like to hear of any suggestions for meetings, for guest speakers, for initiatives, for social activities or simple fund-raising.


Be in touch soon by email.


october 2022

   

Hi everyone


Our meeting in October was a very useful one.  We had about 40 members in attendance to listen to our guest speakers from Road Patrol and Main Roads.  Tony and Michelle were able to provide some useful information to us all when it comes time to consider our driver licensing - a hard decision especially for those who do not have an in-house alternative driver.

Some of the main points included:

  • PwP have a range of symptoms that can affect driving competence.  However, everyone with PD has a different length of time that it takes for different symptoms to develop.       In some states, people who have been diagnosed with PD must have a driving test every year from diagnosis, which happens for most well before they are 75 years old.  
  • It is advisable in Queensland that you notify the Main Roads Licencing Department that you have a medical condition that might impact your driving - that includes not just PD but also such things as diabetes etc.  This will assist if you have an accident with regard to insurance.       If an insurance company feels that an undisclosed medical condition precipitated an accident,, or perhaps even not, it is then a loophole through which insurance might not be paid - not something most of us can afford.  This is a very useful point.
  • it might not be as convenient, but don't look upon not renewing your licence as the end of the world.  Money from selling your car plus money saved annually by not owning a car - repairs, registration, fuel, insurance are quite substantial and can go towards taxi and uber fares.  There are other options out there worth investigating about local transport - applying for a Taxi Subsidy voucher;  using local community initiatives; using NDIS funding; using My Aged Care      assessments; using Home Care Packages.
  • listen to others when they might have concerns about your driving and if you are uncertain of your skills there is something you can do to check your skills out - book into a driving school for a lesson followed by an 'practice' road test and ask for feedback from the driving school; book into an OT who checks out your skills and can report back to your doctor.  There is a cost to each (the first possibly less expensive) but it would be far preferable to either: giving up your      licence before necessary, or, driving at risk to yourself and others.    I have also followed this idea up by speaking with a member      whose husband with PD always took a yearly test before eventually handing in his licence. They used Downs Driver Rehab (Janelle Lotz)      0427034261 and were very happy with her in-depth approach and feedback.
  • sometimes, it might be possible to have a restricted licence  which allows you to drive  within a small area you know well so you can go to the shops, the library etc. This is particularly useful in small      towns where there is no public transport or taxis.
  • be proud that you made the decision that your driving is not as good as it should be and you gave up your licence - a sensible decision  is something to be proud of - rather than being forced to do so or putting others at risk.
  • when you surrender your licence at Main Roads, at that same visit ask for an Over 18 Photo ID Card to replace your Driver's Licence Photo ID.  Everyone needs photo ID for identity issues and the Over 18 Identity Card does that for you.  If you have it done straight away it costs nothing but if you wait until you need one and go back, then there is a cost.
  • there is an alternative to Uber called Sheba - this service is the same as Uber but only uses female drivers, which some might be more comfortable with.  I will try to find out more about this in Toowoomba.

Well I think that is all - plenty of food for thought there.  Hope it has helped with eventual decision-making, whenever.

As you all know, our meetings for 2022 are now finished, except for our November lunch on November 3rd.

Looking forward to seeing so many of you at the lunch.


september 2022

   

Hi everyone


Well our September meeting was an early one, being on September 1st.  The first of Spring but it did not really feel like it.


We had Deborah Hawkins address the group on Yoga Therapy.  Deborah is a Certified Teacher for Yoga for Parkinson's.  Deborah's contact number is 0427331075 and she will come to our home if required. She works one-on-one and in small groups.


As PD is a degenerative disorder of the central nervous system that affects movement, balance and coordination, Yoga is definitely a beneficial therapy for People with Parkinson's Disease as the focus of the therapy is on breathing, core strength, improved posture, stretching, loosening tight muscles, flexibility, balance and coordination.  It is a quiet and relaxing therapy which is great for stress and anxiety.  Through these benefits, yoga therapy can also enhance quality of life.  Yoga Therapy would appear to be another activity that can complement exercise and physio to provide some assistance in coping with PD.  The therapy can be practised while seated (on a chair) or standing.  The teaching of it only advances according to the learner's abilities.


During the meeting there was some discussion of the use of Red Light/Infrared Hats and Mats.  Richard, one of our members is presently using the therapy and is happy to chat to others about his experiences.  Please let me know if you would like Richard's details.


Our next meeting will be on Thursday, October 6th, same time and place as usual.  Our guests will be from the Crime Prevention Unit and Main Roads Department and their topic will be 'The Older Driver' and discussing the how, when, where and why of one of the hardest decisions we all have to make eventually - to drive or not to drive! 


august 2022

   

People commented on what a worthwhile meeting we had earlier in August with discussions centring around what an Occupational Therapist can do for us.  Thanks to Grace for providing us with the information and useful handouts.  There will be more information sent to me from Grace later which I will pass on to you.

We had quite a number of apologies but still had 40 people attending the meeting.    Some points from the meeting included:

  • Fred Davies rang to ask me      to say hello to everyone from him and Ros - some of the longer time      members will remember good times with them both.
  • Choir and Dance are both      progressing well with all attendees enjoying the sessions.  If you      want to come along, please just email me back or phone me on 46597646.
  • I want to let you know that      one of our members followed through with the advice from PQI recently of      contacting the local Aged Care Specialist Officer on 1800 227 475 and      was extremely pleased with the assistance she received in her journey      to having a HomeCare Package to assist her and her husband at home.       I notice that these Officers are now being advertised on TV so if you have      questions I guess it is a good idea to get an appointment now as they      might become very busy in the future.
  • Grace reminded everyone that      their access to an OT is either through their Home Care Package or by      contacting My Aged Care.
  • There was some discussion      about equipment available to help to get in and out of bed as well as to      turn over.  Here are some of the ideas.  Wonder Sheets; bed      blocks to raise the bed; above the bed self-help pole; bed sticks to      grab in order to manoeuvre yourself in the bed; leg lifter  - easy      to use; electric adjustable bed.  All of these items are available in      Toowoomba - the main places are ThinkMobility (ILS) in Prescott Street;      Friendlies Societies in Milne Street and Aidacare in Taylor Street.
  • There was also some      information about how to adjust your computer to help with poor eyesight,      shaky hands etc.  I will send more info on that when I hear back from      Grace but there are many adjustments you can make from your settings on      your computer eg a larger coloured cursor.  As well there are stores      in Brisbane that can help - Spectronics and LifeTec which supply eg      assistive keyboards and mouses (is that right - it sounds      wrong).  We will try to have a speaker from one of these early next      year.
  • One of our members was      finding memory a problem and he has been prescribed a fairly new      medication which comes in three sizes of patch.  He feels his memory      is better than it was.  Something to keep in mind when talking with      our doctors perhaps - as long as we can remember to do so 😀!!


Our next meeting is on Thursday, September 1st., 11.30 am.  Our guest speakers will be from Road Patrol and they will speak with us about 'Helping Older Drivers Progress to Life without a Licence' - the why, when and the how ...  This will be a very useful meeting for all of us, not just those with PD.
 

juLY 2022

 Well it was certainly a worthwhile meeting with the address on  Scams being rather timely for everyone.  Thank you to Margaret who spoke  to us about their scam experience and really made us realise it can  happen to anyone and we all need to be vigilant.
A few points were:

  • in 2021 there were losses in excess of $2 billion to Australians through scams
  • top three scams were investment scams, payment redirection scams and romance scams.
  • many scammers use intimidation to undermine victims eg 'you will be fined if you don't ...."
  • NEVER give details of your banking over the phone
  • if  the contact says they are from some company you deal with eg Telstra or  your bank, ask them whether they can give you their name and you will  phone the company and ask for them or ask them to send a letter  detailing their information.
  • most scammers approach you but sometimes you unwittingly approach them by phoning numbers you have found online.
  • scammers are skilled at making their emails look like the company you usually deal with.
  • make sure your use security both on your computer and your mobile phone

Main other point from the meeting:

  • Parkinson's  Nurse now available to full members of PQI by phone appointments.  You  can phone for an appointment with Steph on 1800644189.  She can answer  general questions and discuss general topics but does not replace your  neurologist or GP.

Next meeting: Thursday, August 4th  at 11 30am at the Meeting Rooms, Toowoomba Library.  We have an  Occupational Therapist speaking to us - Grace from BlueCare.
 

june 2022

Our meeting last Thursday was well attended but a number of apologies highlight the spread of both COVID and Influenza in the region, as well as other early winter ills.  We had a number of new members come along, and we hope they got something from the meeting. 


We had a really useful meeting about Parkinson's medications presented by pharmacist, Christine Wise.  Christine had loads of information for us but here are a few points that were mentioned that I will pass on from her address:

  • the usual medication-taking      advice was stressed - take on time every time; do not take levodopa      medications with or near eating protein ie not only meats but dairy, eggs,      etc - take at least half hour before or an hour after eating protein to      gain best effect; swallow meds with a half to full glass of water to      ensure they get down to where they need to be absorbed asap.
  • when a doctor/specialist      gives you a new medication or changed dosage, ask for a printout of the      list of meds you are now on.  Keep a track of where you put it as      this is the best list to take to hospital in an emergency.
  • add a list of times when you      take your medications to the list of meds as it is important for medical      and nursing staff to know your Medications Regime as it varies from PwP to      PwP and you need it to continue seamlessly when you are in a medical      emergency.  
  • Ask questions about your      medications both of the doctor and the pharmacist.  Check that your      medications will not interact with or negate other meds you are on. Some      'normal' type meds people often take, like stemetil or maxolon, are      amongst those that interact with some PD meds and will negate their usual      effectiveness.
  • Think about getting a      Residential Medication Management Review from a pharmacist.  Talk to      your doctors about whether they feel it would be worthwhile to refer you      to this service.  You can ask questions, and suggestions will be made      about how best to manage medications and a report is provided back to your      doctor with any suggestions on dosages, spacing of meds, interactions      etc.  We have handouts about this service - we will have copies at      the next meeting.


A reminder from a new member to put your name down at Wellways Carer Gateway for future needs was given at the meeting.  There is at the moment a chance to win a decent prize, simply by registering (as long as the offer is still open).  Phone 1800 422 737.


We will have Emergency Information Packs from Carer Gateway at the next meeting for members.

Please remind me at future meetings to make use of the microphone if anyone is having difficulty hearing the speaker.


Finally, our next meeting will be on Thursday, July 7th.  Usual time and place.  Our speaker will be Susan Kenyon from the Crime Prevention Unit in Toowoomba and Sue will be addressing Scams.  This will be a useful session for us all.

MAY 2022

We had a very useful May meeting earlier in the month and the weather was even kind to us on the day. Lots of COVID going around though and we certainly hope that those members who have it, have had it or are in isolation are all fine and taking care.  


Report from last meeting: Margie gave an extremely interesting talk on Estate Planning.  It made many of us rethink a few future options and perhaps review what we already have in place.


Do we know where our wills are?  

Do our children know?  

Years on, are we still happy with the person we said should be executor? etc 


Times have moved on - forms and ideas have changed and might be useful - eg Statement of Wishes 


Check superannuation has the correct person\persons nominated as receiving the Super rather than going to your estate; has it changed? has it lapsed?; check with your Super Fund.  


Have we thought about what needs to happen to our cyberspace ownership, our pets - what happens to my social media? 


In Toowoomba Margie would meet people in their homes to discuss issues if they are interested in consulting her.  You can contact her on 0406 174 103 for details about how to manage this and what you might be interested in having Margie, as a solicitor, follow up for you as a client.


There was also some discussion at the meeting re a study being conducted on PD genetics - it is an easy to do online questionnaire plus sending a DNA sample.  Here is the link.

https://www.qimrberghofer.edu.au/apgs/ 

This is a link to an article possibly about the same study - https://www.9news.com.au/national/health-news-new-genetic-study-recruiting-thousands-of-australians-with-parkinsons/e4df9ba2-58f6-4df8-a3e5-e053d746cfe5  

APRIL 2022

Our April meeting was very well attended and members seemed to find some of the items on display from ThinkMobility (Independent Living Specialists)  at 18 Prescott Street of use to them.  

While we discussed the aids available, other information surfaced within the group. 

Some of these points were: 

  • Wondersheets have been found to be very helpful by some members to enable them to move more easily in bed . 
  • Some members have a grab bar in their bathrooms which goes vertically from floor to ceiling, strategically placed for easy use for balance.  This is a bit different to the many grab bars we often have attached to bathroom walls and might be a useful alternative. 
  • A call for assistance can easily be heard within the home by having an electronic door bell button within reach, attached to one's arm or in a pocket - available from Bunnings. 
  • Aldi has some very good disability aids available from time to time - you need to watch the catalogues for them. 
  • Bunnings has an aisle of disability aids and building items at reasonable costs. Ask at second hand stores for used mobility aids as they are often not on display. 
  • A sensor light can be  handy at night rather than leaving a night light on all night.  Available at a range of stores. 
  • Yukana has a regular market for sales of second hand disability and mobility aids.  We need to find out when and will pass on the information.


We shared a great lunch as usual and hopefully everyone enjoyed the catch-up and information that was available.

MARCH 2022

 Well, our first meeting for 2022 was held just over a week ago and was really well attended, particularly considering the weather and road conditions at the time and the apologies we received from regulars who could not make it.  We had 30 in attendance and 14 apologies.    It was a social meeting and we welcomed some new people.  We dealt with some business first:  

• We are making up new Welcome Packs for our new members; we will continue to provide new members with a one-year Associate membership with PQI; attendance sheets now reflect PQI membership dates and when anyone 's subscription is due they can be reminded and we can take continued Membership details to PQ here or members can contact PQI themselves  

• Our 2022 brochures are to carry the PQI logo within the section providing PQI information.  When this is complete we will be able to print up our brochures for members to take their Medical Centres or Pharmacies for display.  We will also post out to the specialists in the area. 

 • We will need to change our local group's email address from the personal one now used to a suggested one from PQI - this is a security of information issue.  This will hopefully happen for our group in April.  The new email address will need to added to our brochures (before printing) and our website, as an option for contact.

• We will start advertising our meetings again as well as our Dance and Choir sessions on a regular basis. • We hope to have a small fundraiser in Autumn, more news about that later. 

• Nutrition Recipe Books for Parkinson's are available from us for $10. 

 • There was a report of  PQI news - walks that are being organised; Newly Diagnosed Forum in April (I am sure everyone will already know of these but please contact me for further information if you want) 

• Patricia gave the Treasurer's Report and our situation is fine for finances we need at the moment. 


The meeting then went on to some sharing of information. 

 • It is always advisable to have an updated list of all medications to take to hospitals in cases of emergency.  What medications and dosage; times taken; include patches; include information of DBS if applicable; name of specialist and GP.  All this is a real help in stressful situations in and emergency.  Taking a couple of copies is useful as you are usually asked medications questions by a few different people - and at least then everyone is on the same page!  

• A reminder to everyone that Levodopa Medications should be taken on time every time; taken with a glassful of water and ALSO A HALF HOUR BEFORE EATING PROTEIN OR AN HOUR AFTER EATING PROTEIN. It is hard to be totally regulated by this but it certainly does ensure every tablet has its maximum effect, which is what we want for PD.  

• The importance of swallowing being kept as good as possible with PD was discussed - don't wait until you have problems; use a speech pathologist; LVST therapy; Expiratory Muscle Strength Training; tilting head forward, not back, to swallow. 

 • Shared ideas for future meetings - discussion and display about mobility aids; estate planning; pharmacist discussion about PD medications; police talk about on the road from drivers' licences to riding mobility scooters; speech pathologist re swallowing.  

• Some discussion re beds, slippery sheets, support triangles and Home Care Packages occurred.  OVER We shared a great lunch as usual and hopefully everyone enjoyed the catch-up and information that was available.   


We shared a great lunch as usual and hopefully everyone enjoyed the catch-up and information that was available.

Meetings notes 2021

 

NOVEMBER 2021

 Our last meeting of the year, as always, was a lunch together - this year at Christopher's Restaurant at the Blue Mountains Hotel.  We had 62 turn up for the gathering and we feel that everyone enjoyed themselves.  Michelle and Fiona from PQI came up to join in.  The sad note was the news that Jan and Ron are stepping down as our Group Coordinators after an extraordinary length of time in the position.  They are not leaving the Group and will be there to assist with their wide range of knowledge - just not taking on an official role.  Thank you both for all your leadership in the past.  Support Groups do not run successfully without the dedication of people like Jan and Ron.

There is an entry under Special Events on this website with photos from our Lunch so why not navigate over and check it out - you might be able to spot yourself in a photo!

OCTOBER 2021

  Last meeting was a very busy one.  Firstly a few items for you to check out.

  1. Someone  left behind a nice oblong glass plate after the meeting. I think (but  am not certain) that the food brought on it was a rather delicious  spinach quiche.  If it is yours, please contact me and we will sort out  getting it back to you.
  2. Our coordinator, Jan, informed the  meeting that she and Ron are stepping down next year from positions in  the group.  Jan has been trying to do this for a number of years now but  we have managed to coerce her into staying.  Unfortunately, we have not  succeeded this time.  Jan and Ron will remain members of our group so  we will not totally lose their expertise.  However, this will leave a  huge gap in our committee of workers.  We are hoping some people in the  group will be interested to take on some roles.  We have broken down  Jan's present position into a number of roles - the following are the  positions available - a)coordinator (liaising with PQI/ attending the  Zoom meetings with PQI/reporting news from PQI to the group/ maintaining  an overall view of the group and its activities); b) meeting  facilitator (running the meetings - this could be done by more than one  person); c) liaison person to contact, book and confirm guest speakers.   
  3. If  you would like to take on one of these positions and earn the undying  gratitude of many of us, please contact me asap as we are sure you might  miss out on this great opportunity if you do not act quickly!!!

Our  guest speaker, speech pathologist Kirby Van Egmond, was excellent -  some very useful information about the voice and swallowing during  Parkinson's Disease.  Some of the main points Kirby made were:

  • We should not underestimate the need for a good voice in terms of communicating with our family and friends
  • The Think Loud Program is a good strategy for maintaining a good voice but it requires regular practice and use.
  • PwP often think they are speaking loudly but actually are not.  Remembering to think loud helps to ensure good posture, breath control and volume as when we think loud our body actually prepares itself to be loud.
  • Difficulties  with swallowing can cause a range of problems for the PwP.  If a PwP is  experiencing difficulties swallowing they should refer themselves, or  be referred, to a speech pathologist in order to learn strategies to  help themselves.
  • For further information Kirby can be contacted at TAG (Therapy Alliance Group) Clinic on 1300 661 945.

We  have had a great response to our end of year lunch.  Two  representatives from PQI - Michelle and Fiona - will be joining us.   There will be a reminder email sent before the lunch on Thursday,  November 4th.




 


september 2021

 Our September meeting was well attended.

Patricia  provided a light lunch for us in order to acknowledge those who  attended, or could not manage to attend for various reasons, Brian's  Funeral and Celebration of Life Service.  Thank you, Patricia, and thank  you for sharing your family's interstate COVID experience with us at  the meeting.
A brief report was given on the choir, dance and website activities.

We finally met in person, our guest speaker, Tony Rehn,  from the Crime Prevention Unit, whom we met last year on our first Zoom  meeting.  His address was excellent and he had some really helpful  information about keeping ourselves and homes safe. Some main points  were:

Yourself:

·  Statistically, older people form a very low percentage of those who are  victims of violence or theft. Always look confident but do not be  aggressive. 

·  If you find yourself in a position where you feel uncertain, follow  your gut instinct and move to somewhere you will be safe, preferably  near other people.

Your home:

· Security lights and alarms around the home do assist as deterrents to robbers.

· Do keep doors locked when you are inside the house.

·  A free assessment of your house with regard to security can be done.  This is performed by Crime Prevention Unit volunteers (former police,  former solicitors etc). If you feel this is necessary for you, email  Tony on Rehn.AnthonyP@police.qld.gov.au or contact me for a phone number.

. Tony also had some excellent handouts which will be available at the next meeting.


The  group had organised a handout about Home Insurance and Common Questions  from Choice Magazine and this will be added to the website for anyone  who would like to read it.


Our  next meeting will be on Thursday, October 7th with a Speech Pathologist  as guest speaker.  This will be our final formal meeting for the year,  as in November we will have our Xmas Lunch on the 5th.  There will be  more lunch details at the meeting but think about whether you might like  to attend so you can let us know at the October meeting.


We  will share lunch at the next meeting at the library as we used to BC  (before covid) so if you fancy bringing a plate to share that is lovely  but if you can't manage it easily then don't worry about it at all, just  come along.  


august 2021

 

We  had a very enjoyable meeting last week, even a bit hectic.   Unfortunately, with the lockdown, Miguel and Michelle could not come up  the hill from PQI in Brisbane but we decided to go ahead anyway as we  were not in lock-down in Toowoomba.
We  arrived to paparazzi for the four couples celebrating their Golden  Wedding Anniversaries and this resulted in a Local News 7 report on  Thursday evening (link below) and then a Chronicle article on Saturday  (attached above).
We  then enjoyed a lunch together and drew the raffle.  Our multi-draw  raffle had been on hold since pre COVID days last year and the  resurrected a couple of months ago.  Some winners were at the meeting  and all others were known by someone at the meeting.  We made $1001 from  the raffle so thank you to everyone.
Discussion during the meeting included

  • a general agreement to sending a cheque to PQI to, hopefully, assist them in supporting other groups around Queensland
  • an appeal to anyone who might know a person who would be interested in leading our choir to contact Carol on 46597646
  • a report that our Dance Group is preparing a special video performance for Dance for Parkinson's
  • a new section will be added to our website in a few months entitled “ Members’ Fulfilling Pastimes”
  • Janette  Hopper is planning to put together a library for the group which will  include books for children about their loved ones getting Parkinson's  Disease

Do have a look at the links below from Local Seven News and the Toowoomba Chronicle about our 50th Wedding Anniversary celebrations within the Group.

https://www.facebook.com/watch/?v=518144605935626



https://www.thechronicle.com.au/news/happy-together-four-couples-strike-gold-hit-major-milestone/news-story/f60252d5e629dd4a01dd8fa2020c48ca


JULY 2021

 

Per kind favour of Patricia-


Ann  Hopper and Cassandra Teale from Lutheran Services were our Guest  Speakers on how to navigate the system for Home Care, Respite Care and  Residential Care.

Ann spoke on the initial steps to access some care at home and she had some good tips.
1  Ring My Aged Care on 1800 200 422 to register. (If you don’t understand  the person,    hang up, make a cup of tea, then ring again. You will  not get the same person.)
2 Have a person with you for all assessments and you can have someone to speak for you.
3  Entry level care is the Commonwealth Home Service Programme (CHSP)  which  includes nursing, cleaning and gardening, 2 hours a week. Levels  of care go up depending on care needs.
4  When more help is needed, ring My Aged Care for a comprehensive  assessment -  ACAT for Approvals for Respite Care, Homecare  Packages and Residential Care.
5 Home care packages are means tested. Centrelink is involved.
6 Respite Care is available for 63 days every financial year. Contact Carer Gateway for      that on 1800 422 737.


Cassie spoke on entry to Residential Care.
1  Ring My Aged  Care. The ACAT assessment will have an approval number  for  residential care. Apply for funding through  Centrelink for an Income and Asset  assessment. (For an  aged pensioner, it is very easy as Centrelink is already involved.)
2  Understand the costs - daily care fees, accommodation fees and means  tested  fees. (The mean tested fee is only for people with  assets and income over a certain amount).
3  Choose a facility. Take someone with you to view each facility and ask  staff and  residents are they happy to work or live there.
4 Apply to the facility of your choice.


Contact Ann on 0428 452 723 or Cassie on 0429 041 023 if you require more information.


JUNE 2021

 Our meeting last Thursday was very well attended even though there was a distinct chill in the air.
Our guest speaker was Kirby Harley who is an Exercise Physiologist from Vision Exercise Physiology, here in Toowoomba.
Kirby  spoke about the Exercise Program she runs for People with Parkinson's.   She can run the program on an individual basis or it can also be  attended in a group.  Each situation has its advantages - many members  enjoy attending the group classes while others have found the need for  one-on-one.  All the support group members who have worked with Kirby  gave very positive feedback.
Kirby  explained that, while her classes focus on the exercise that assists  PwP to maintain a normal movement and improve muscular strength, she  also employs a 'dual-task' approach. The program therefore is one that  incorporates both physical and cognitive activity.
To  explain briefly, unfortunately, over time, the damage to the basal  ganglia that is associated with Parkinson’s leads to a loss of automatic  task generation.  As, for example,  walking becomes less automatic, one  is required to consciously think more about basic actions. This leaves  less attentional capacity to think about other things. It is because of  this that dual–task training, ie performing two tasks simultaneously, is  an important aspect of PD exercise.

Kirby can be contacted at Vision Exercise Physiology, 324 Hume Street - phone 4638 3777.

Other points from the June Meeting include:

  • Red-Light Therapy has again hit the news - links were sent in an earlier email
  • Some advances on Stem Cell Therapy have been made in Melbourne but no human trials for at least 5 years
  • Our  multi-draw raffle will be drawn at the August meeting so all money and  butts need to be back by then - for more tickets or further information please phone Patricia on 45649353.
  • A  handout identifying how to navigate Government help that is available  for our group members was handed out.  Joe and I have tried to put it  together so that you are aware of all the help available and how to get  it.  Hope it is useful for you.  It is attached here or collect one at the next meeting.   https://documentcloud.adobe.com/link/review?uri=urn:aaid:scds:US:0652d318-7b30-4c5d-a8dd-3cb1db19a78d


may 2021

Our May meeting was well attended and proved to be very interesting with regard to information about the Carer Gateway provided for us by Stacey Edwards.

The main points to know about Carer Gateway are summarised below:

  • Carer Gateway provides support for all carers without requiring onerous documentation of what makes you a carer.
  • A carer is SIMPLY someone who helps a family member or friend with administering medicine, grocery shopping, preparing meals, personal care, finances or emotional support.
  • Carer Gateway provides assistance to people of ALL ages.
  • Carer Gateway provides support to carers even if they are on other Government benefits eg Home Care Package; Pension; Carers' Allowance ...
  • Carer Gateway provides planning assistance to get the help you need.
  • CG provides counselling services.
  • CG can provide practical assistance for items that might be required in a caring role by using some funds available to CG.
  • CG can help with short notice emergency or planned respite.
  • CG can provide peer connection to isolated carers.
  • CG can also assist in isolated areas.

The best thing that all carers can do right now is to register with Carer Gateway.  Why we should do this and how to do it are noted below:

  • It will save time later if we are already registered and find ourselves needing immediate assistance.
  • A large base of registered carers will show the Government that there is a need for a service such as Carer Gateway.
  • We never know when we might need some assistance and CG has phone contact 24 hours a day.
  • Even if we have family living close by, if a carer needs emergency help it might happen when the family are away!
  • What happens to the one needing care when something happens to the carer?
  • To register phone 1800422737 
  • or visit https://www.carergateway.gov.au/
  • If we have any difficulties getting in touch to register we can phone our local contact Stacey Edwards on 0423167926.
  • You might see Carer Gateway linked to Wellness as Wellness looks after this Government contract.


Our pre-COVID raffle is again up and running with some great prizes to win.  If you want to buy tickets ($2 each or 3 for $5) or sell some to friends, please contact Carol on 46597646.  Tickets will also be available at our June and July meetings and the raffle will be drawn at our August meeting.



april 2021

No April Meeting due to COVID restrictions.

MARCH 2021

 March was a well-attended meeting and it was great to hear from Elise again.
There  is such a lot to take in about Parkinson's medications and drug  therapies - we all listen for what is pertinent to us personally.  As  Elise said, our specialists/GPs are treating us, their patients,  individually for whatever symptoms are the most concerning to us at the  time.
Everyone  is different in their Parkinson's symptoms so everyone will need a  different cocktail of medications to try to address personal issues.  On  top of that, everyone is different in their tolerance of different  drugs and strengths.  Hence, a talk about PD drugs will always be  complicated.We found it useful to revisit the different groups of medications and why they are helpful.Once again, Elise stressed the following points:

  • A  number of different medications working together on lower dosages of  each is usually better than a single medication working on a high dose  because of the side effects medications can have from long-term use at  high dosages.
  • When taking levodopa, it is important to avoid  eating, particularly protein, at the same time as taking the  medication.  This is so that the full strength of the medication can be  absorbed easily into the body.  Medication should be taken a half-hour before food or about three-quarters of an hour after food.
  • Ensure you know which non-PD medications worsen PD symptoms or can cause interactions with levodopa eg Maxalon.  
  • Medications should be taken ON TIME, EVERY TIME for best results.
  • Explore  different options to oral medications with your specialist so you can  find what might be most suitable for you, now or later.
  • EXERCISE REGULARLY as research shows that exercise can slow the effects of symptoms.

If you want to contact Elise, she is happy for you to send her an email at this address: 
Elise.Tune@stada.com.au

Here is the link Elise has sent to me regarding the Levodopa equivalent daily dose – LEDD: https://www.parkinsonsmeasurement.org/toolBox/pharmacokinetics.htm

Our  next meeting in April will address the tissue of Security around the  Home which is rather topical at the moment considering a recent rash of  break-ins throughout Toowoomba!
A reminder about the meeting and further details will be sent later.
 

february 2021

 Our first meeting for 2021 saw quite a number of faces surface from the  COVID worries - both familiar faces and new.  We touched base with what was happening within the group and discussed plans for 2021.  It was a  very pleasant social meeting. 

MEETING NOTES 2020

novembER 2020

Our final meeting for 2020 was a face-to-face lunch meeting held at Christopher's Restaurant, Blue Mountain Hotel.  We had a great time catching up after so many months of COVID.  There were 53 at the lunch, including Racheal and Cally from PQI and a few new members to the group.  We have booked the  Library Community Rooms for 2021 in preparation for, hopefully, returning to normal meetings from February next year.  Here are a few photos taken at the Lunch.  See if you can spot some familiar faces, sides, fronts and backs!







OCTOBER 2020

 Unfortunately this meeting had to be cancelled due to Zoom problems.  Hopefully we might be able to have someone speak next year about the PQI Telephone Peer Support Program . ,

september 2020

 Great roll up for our Zoom meeting - we had 26 in attendance which is rather special.Jan  welcomed everyone.  Patricia reported that we have a healthy bank  balance as we are not currently spending money as we were pre COVID.  Carol reported that the website is now coming up well on Google searches.    We  watched 4 short videos from Professor Simon Lewis's Video Library and  followed each one with a brief discussion.  Here are the links to each  video and a few words about the discussion we had afterward.  All of the  videos are worth watching and they are only short so if you missed the  meeting you can now watch the videos or you can watch them again for any  specific aspect you noticed first time through. 

  • First video http://www.profsimonlewis.com/covid/ - this is a video that answers questions about PwP and Covid-19.   The  discussion that followed highlighted that some people were managing  home exercise during lockdown; that some couples had found lockdown had a  nice togetherness aspect; that a few had found themselves a bit  apathetic about getting back out into socialising again.
  • The second video http://www.profsimonlewis.com/the-australian-parkinsons-mission/ - this is a video about the opportunities to be involved in PD research  programs in Australia. Prof Simon Lewis is the National Trials Leader  for the newly announced Australian Parkinson’s Mission. These trials are  about medications to help symptoms and to try to find a cure.  If you  are interested in being in a trial after viewing the video here is the  link to the Mission website.  https://theapm.org.au/ -  from the Home Page you can click on 'Clinical Trials' and then fill out  the Participant Information PDF form to register as a possible  participant. There do not appear to be any research projects in  Queensland at the moment within this group but Queensland is identified  as a state that will run trials.
  • The third video http://www.profsimonlewis.com/cognitive_training_-_physiotherapy_-_exercise_-_speech_therapy/  - this is a video that focusses on the non-pharmacological approaches  which are critical for Parkinson’s Disease and related conditions. Dr  Simon Lewis identifies those as exercise, physiotherapy, speech therapy  and intellectual therapy/practice.  His suggestion is to start these  therapies early and to continue regularly with them.   The discussion  that followed included what members are doing or have done with regard  to each of these.  Some points included: BlueCare  Parkinson's Group  covers all 4 aspects of these approaches but is only once a week and  brief at that.  Need more to feel improvement - which means doing some  in between sessions yourself.  Members identified that some have done  speech therapy for many years (and it is noticeable); some have  regularly attended Toast Masters; some regularly ride an exercise bike;  others walk regularly; to stretch the brain - one member has taken up  learning music theory; the suggestion was made to learn a new language;  others play board games daily (both maths and language, and preferably  with a beer or wine in hand).  Another aspect is the cost of activities  and getting the most out of any outlay - or finding alternatives.  Plus,  it is important to plan the activities so you know you are doing  something your body can manage - professional advice can be of  assistance. The key seems to be the passion to keep the activity going regularly and to challenge yourself.  Not always easy to do but those who do feel that they reap the benefits.
  • The last video http://www.profsimonlewis.com/the-evidence-for-exercise-in-parkinsonsrkinsons-2-2/ - this video is about a recent research study carried out on the most  efficient exercise that provides results for People with Parkinson's.   The research, over six months, has shown that getting your heart rate up  to the point where you can just keep a conversation going, at least  30-45 minutes, three times per week, has shown to keep symptoms of PD  level.  The control group did less strenuous exercise and their  symptoms, over the six-month period, continued to increase as one would  ordinarily expect. An exercise bike in the home was used in the research  but any other form of exercise that raises the heart rate to the degree  required can be used.  Do watch the video - it is worthwhile. Discussion  that followed included the fact that some are regularly doing that  presently - they are using exercise bikes and one member uses music to  ride to as a way to enjoy it more and another uses Youtube videos of  virtual bike rides around the world to ride to and finds he looks  forward to 'riding through Paris, London, Melbourne, the Grand Canyon  ...' -  a great motivator.
  • If you would like to view more Professor Simon Lewis videos, his video library is available on this link.  
    • http://www.profsimonlewis.com/video-library/ 
  • If  you are a member of PQI you can find a Q&A session that Simon held  recently in which he just simply answered questions sent in from the  audience - he linked into a Zoom meeting with PQI - some of you might  have seen it.  He covers some interesting material.  You will find it on  this link - https://www.parkinsonsqld.org.au/resources/classes-webinars/
  • Another  aspect mentioned was the support of loved ones, family and friends who  can work with you on your journey with PD.  Being open and discussing  your concerns and problems can help foster this support.

I  will try to chase up some links to the recent research of Parkinson's  and the Gut and Brain that was also mentioned at the meeting.  Here is  one I found but I am not sure that it is the one referred to Bill and  Margaret.  https://newatlas.com/medical/new-evidence-gut-brain-gcase-enzyme-parkinsons-disease/     

AUGUST 2020

We  had great attendance at our last Zoom meeting.  There were probably 20  different sites that linked in so we would have had close to 30 people  involved.  Our  Parkinson's Nurse, Elise Tune, spoke about all of the oral medications  used to assist with Parkinson's Disease symptoms and explained the way  they work in the body and how they also might be used to work together  for better effect. She  also spoke of other alternatives to oral medication - patches;  apomorphine pens or continuous infusion via a small pump; duodopa, which  is a gel  administered with a pump directly into the duodenum or upper jejunum  through a permanent tube like a PEG; and, Deep Brain Stimulation.  A couple of main points were:

  • A  number of different medications working together on lower dosages of  each is usually better than a single medication working on a high dose  because of the side effects medications can have from long term use at  high dosages.
  • When taking levodopa it is important to avoid  eating, particularly protein, at the same time as taking the  medication.  This is so that the full strength of the medication can be  absorbed easily into the body.  Medication should be taken a half-hour before food or about three-quarters of an hour after food.
  • Ensure you know which non PD medications worsen PD symptoms or can cause interactions with levodopa eg maxalon.  
  • Medications should be taken ON TIME, EVERY TIME for best results.
  • Explore  different options to oral medications with your specialist so you can  find what might be most suitable for you, now or later.
  • EXERCISE REGULARLY as research shows that exercise can slow the advancement of symptoms.

Most  questions we sent to Elise were addressed but we noted that a couple of  questions did not get covered.  If you have any, or further, questions  for Elise, she said she was happy for you to email her on   elise.tune@stada.com.auWe hope this information provides a helpful summary of the meeting for you.There will be an email later about our next meeting in Septembe

July 2020

 Because  our Zoom meetings are not attended by the number of members who usually  come to our Library meetings, we thought we would email an update of  the main information from our last meeting - just point form - to keep  everyone in the loop.  

  • Dance  for Parkinson's recommences on Tuesday, July 14th.  Choir is still on  hold until at least September.  The meeting for August will be on Zoom.   We can only reopen our usual formats eg meetings and choir if the  venues can cope with our numbers in a Government accepted COVID safe  environment.
  • Our next Zoom meeting will have as guest speaker,  Elise Tune, Parkinson's Nurse,  Elise will speak about medications.   More info to come, but please consider at this stage, with such an  interesting speaker, to try a Zoom meeting yourself or ask us whether  someone on Zoom is happy to have you come to their house for the  meeting.
  • One of our members is keen to speak to anyone who suffers from the PD symptom, blepharospasm, and is being treated by botox for this symptom.  Please email me back if you have any information and  I will pass you on to the member with the inquiry.  Many thanks.
  • We  chatted briefly about MedicAlert bracelets and medication information.   MedicAlert bracelets provide an emergency phone number and an ID number  (plus there is room on the bracelet to have PARKINSON'S written) which  will alert paramedics or other medical persons to a need to get more  information.  Your actual medications are on a database at MedicAlert so  this is a help to everyone (but you have to keep that info updated).   In our family, when there is a change of medication for Joe, we update a  Medications List and we send that list to our 3 children and I keep a  copy in my handbag.  The main problem for People with Parkinson's is an  accident when their partner is also involved so no-one knows about the  PD and the need for medication and, if that is the case, in an  emergency, drugs might be used that are contra-indicative to PD or the  medications the person is on.  
  • There was a brief discussion  about Fall Alert Devices and 2 were mentioned as being used by members.   Here are some links to websites for the two so you can investigate  further.  https://livelifealarms.com.au/ and https://www.officeworks.com.au/shop/officeworks/p/uniden-emergency-alert-pendant-ssep2-unssep2.  
  • Our  guest speaker was the new CEO of PQI, Miguel Diaz.  He spoke about the  new initiatives at PQI re Zoom meetings, Zoom classes (boxing, body  workouts, dance and pilates), the just-launched Telephone Peer Support  Program as well as some of the upcoming Parkinson's Information  sessions. It is also time to renew (or join) as PQI members.   All of  these items have been mentioned in the recent Connections Newsletter and  are on the website.  Here is the link to the website.  https://www.parkinsonsqld.org.au/
  • I  would love everyone to make another trip (or 2 or 3) to our own website  - apparently, the more people who visit, the more Mr Google will  recognise it as as a site so, if you can find the time, please take  another look at https://parkinsonssupportgroup-toowoomba.com

Hope to see you at the next meeting. Take care everyone.  

June 2020

Our first Zoom meeting during times of COVID-19 for the Toowoomba Parkinson’s Support Meeting went well and the hour session just flew by. We hope some extra members will join in at our July Zoom meeting (more information later). 

Our guest speaker, Tony Rehn, from the Crime Prevention Unit, was excellent and had some really helpful information about keeping ourselves and homes safe. Some main points were:

Yourself:

· Statistically, older people form a very low percentage of those who are victims of violence or theft. Always look confident but do not be aggressive. 

· If you find yourself in a position where you feel uncertain, follow your gut instinct and move to somewhere you will be safe, preferably near other people.

Your home:

· Security lights and alarms around the home do assist as deterrents to robbers.

· Do keep doors locked when you are inside the house.

· A free assessment of your house with regard to security can be done. This is performed by Crime Prevention Unit volunteers (former police, former solicitors etc). If you feel this is necessary for you, email Tony on Rehn.AnthonyP@police.qld.gov.au

Other items from our meeting:

· Jan is attending regular Coordinators’ Meeting with PQI – a new innovation. Very useful for knowing what is going on state-wide.

· Both Dance and Choir classes are still in lockdown for our group until at least July.

· The raffle is cancelled until sometime next year when we hopefully will get up and running again.

· The library is still not available for meetings and would not be large enough for us anyway because of COVID restrictions.

· We now have a website up and running for the group. Still some work to do to get Google to recognise us from a google search but we are working on that. Here is the link so you can have a look. You might like to consider writing and article for the website as some have already. If you do just phone Carol for details on 46597646.

https://parkinsonssupportgroup-toowoomba.com/

March 2020

 This month the meeting was run as an Information Sharing session.Thank you to all the people who spoke at the meeting in order to share information - much appreciated.  It is not always easy.

  • When we were discussing finding information we mentioned the Michael J Fox site and the Shake It Up Australia site which are both easily googled.  We have already sent out  information on the Online Conference Insight into Parkinson's 2020.   
  • The  recent conference in Ipswich which was reported on by Gen, June and  Mary, has the following links which you might find useful (thanks for  supplying these, ladies).

https://www.parkinsonsfightersunited.org.au/  Parkinsons Fighters United | Brisbane | Non Contact Boxing
Parkinson's Disease Blog, Support and Yoga
https://www.talkparkinsons.com/
https://outpaceparkinsons.com.au/ https://www.dandenongneurology.com.au/ 

  • When discussing exercise the following were mentioned:  

  1. Parkinson's  Specific Activities in Toowoomba:  BlueCare Therapy Centre; Park 'n'  Songs Choir; Dance for Parkinson's ( if you want further  information phone us on 46597646)
  2. Other activities available  within the community and found very useful by our members: water  aerobics; swimming; walking; yoga (also seated yoga); boxing; tai chi  ....

  • When discussing helpful hints for symptoms the following were mentioned:

-  using a wireless doorbell with multiple buzzers strategically placed  through the house so that a PwP can press them if requiring help from a  carer who might be out in the garden or elsewhere in the house and  cannot hear their Parkinson's voice calling.  -  eating Golden Kiwi Fruit to assist    in keeping bowels regular. Here is  an article that discusses the active ingredients of the fruit.

http://naturesbestbelfield.com/articles/?ArticleID=1534  

February 2020

 We started 2020 with an influx of new members to our first meeting. We had over 40 attendees.
Our guest speaker was Toowoomba Regional Councillor, now Deputy Mayor, Geoff McDonald. Geoff caught us up on much local planning and easily answered any questions from the members at the meeting.
Some of the issues discussed included:

  • the new hospital to be built on the grounds of Baillie Henderson Hospital, close to easy access to and from the Toowoomba By-pass Highway.
  • community projects
  • disability parking
  • applications for support funding

Everyone found the meeting very worthwhile. 

Toowoomba Parkinson's Support Group

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