Hi everyone
What a busy meeting - 77 people - we had on July 3rd with 15 new faces. We do hope that those new people got something from their first meeting, and, of course, that everyone else did as well.
We have had to change some of the guest speaker plans, due to people finding themselves unavailable. Presently our plans for the rest of the year are:
August 7th - Our mini expo of local groups who offer exercise options and/or interest options to complement Parkinson's regimes and changing needs. MORE TO COME IN A LATER EMAIL
September 4th - Dietician, Charlotte, from BlueCare will speak to us about the specific dietary needs of People with Parkinson's.
October 2nd - 'To Drive or Not to Drive' with sound advice from the Police and Qld Transport and guidelines with regard to the processes involved.
November 6th - End of Year Xmas Lunch at Blue Mountain Hotel
Anyone who is interested in attending a Webinar about PwP and Nutrition - this link is an opportunity - thanks, Rosalie, for bringing it to my attention.
https://utas.zoom.us/webinar/register/WN_9RPtMt-yRd-amJVe3mJqbQ#/registration
REVIEW OF JULY MEETING
1. Dr Gange's information session will now be on October 16th. MORE INFORMATION LATER.
2. There will be a Disability and Senior Expo on October 17. I will try to remember to send a reminder, but here are the details.
https://disabilityexposc.com.au/exhibit/
3. The West Toowoomba Lions donated a further $2000 to us, kindly arranged by the retiring president with discretionary power over some donation decisions as he leaves office. We would like to thank everyone most sincerely - we are now able to manage our group without having to raise more funds for many years to come.
4. There was a positive response to the signatures we sent down to MOOC with regard to the availability of The Parkinson's Course online. It will be available again before the end of the year.
5. Carer Gateway plans to provide a Care Hub - MORE INFORMATION LATER.
6. Just a reminder that parking for too long downstairs at the Library can still attract Council fines. Perhaps think about applying for a Disability Parking Sticker if you are eligible. Or perhaps park at Grand Central and walk along to the Library if you can, or drop someone off in the Library carpark and then park somewhere else if you can't find a spot. Food for thought!
7. Better Movement Clinic has closed down but might still appear on some our brochures until the new stock takes over.
8. 17 of us met with the group collecting data on the needs of PwP for the Government after the meeting. The main points made were a) the Government needs to collect the statistics on PwP - they will be shocked by how many they need to plan for b) the need for a national media campaign to raise awareness of PD in the community and foster a better understanding c) the need for an advertised central contact number for PwP to phone for support, leading to their being referred the their State Parkinson's body which has been equipped with a good database for referral to places to support the PwP d) EDUCATION of GPs, nurses, hospital staff, Allied Health, Nursing Home staff to properly care for PwP e) Carers require access to flexible Respite Care for their PwP to be able to keep their loved one at home.
9. I played a number of short videos on both exercise and medications for PwP. These videos involved PwP speaking about their experiences as well as professionals providing advice and research. Some discussion followed. The main points were
• Exercise can assist in reducing the effects of symptoms, in particular it will assist with movement but also some non-motor concerns like constipation, mood, breathing ...
• Exercise needs to be something you enjoy so you will keep on doing it.
• Any exercise is appropriate as long as it gets your heart rate up to the point of breathing heavily but still being able to hold a conversation.
• You need to do such exercise at least 3 times per week.
• Ideally your exercise will cover aerobic, balance, strength, big and large, stretching and multi-tasking exercises.
• Exercise simply makes you feel better.
• Movement is medicine.
• Medications are about getting more dopamine into your brain so that messages can be carried more effectively around your body.
• Levodopa is the gold standard of PD medications.
• Research has shown that there is no advantage putting off taking medication. In fact it will probably be better to make yourself feel better rather than put off taking medications.
• Taking meds will make it easier for you to exercise well which in turn helps you reduce some of your symptoms.
• The medications keep working but as the disease progresses you will have to increase and/or change your medications as your doctor suggests.
• If meds are not working, or have side effects, you need to get back in touch with your GP/specialist sooner rather than later.
• You need to be aware of some of the side effects of meds, especially ones that might cause impulse disorders. If this occurs and is a problem, your meds can be altered. Some examples of this are as follows:
Only a month ago our daughter told us that a friend of hers said her Dad had Parkinson’s as well, but had, very oddly started cheating on her Mum which led to a divorce. They had no idea at the time that it might have been the medication causing a sexual impulse disorder.
I only read last week this on the Movers and Shakers website in the UK –
Just found out that my husband had lost £20k dealing in very risky shares...... He use to earn on them and had a balanced approach to trading. Presume it's the meds and PD related compulsive gambling.
He is very poor at communicating and I had trusted him. He now understands and we are closing his share dealing account.
A warning to others. Keep a check on things and please talk about stuff.
I know a member of our group some years ago became obsessed with regard to real estate, arranging appointments with agents etc – fortunately his wife stumbled across his plans.
And Joe read an article about a man who became obsessed with watches and bought hundreds on the internet. We did laugh at the final line of the article – the journalist wrote – He must have had a lot of time on his hands!
• Some of the things to be aware of when taking meds are to avoid eating protein at the time of meds - have meds an hour after protein or a half hour before; dyskinesia is more likely a medication side-effect than a PD symptom so talk to your doctor; your meds wearing off is something you need to talk to your doctor about so that you might be able to alter quantities or timing to make it better.
That's about it until next time everyone.
Cheers Carol