toowoomba parkinson's support group Meetings

 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.