toowoomba parkinson's support group Meetings

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.

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.

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! 

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.
 

 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.
 

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.

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  

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.

 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.

 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!

  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.

 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.  

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

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.

 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

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.

No April Meeting due to COVID restrictions.

 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.
 

 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. 

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!

 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 . ,

 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/     

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

 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.  

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/

 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  

 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.