Parkinson's never gives up.
I have been reflecting on many things on my daily walks. I have completed 1070 consecutive days walking at the time I write this, so I have pondered a range of topics, and some repeatedly.
A realisation...
I try to be a upbeat and positive. I'm a "glass half full" sort of guy. Sometimes that is a challenge and recently I have become more self aware that perhaps I have not always had my usual level of positivity on show. I feel disappointed in myself for not addressing that and working out why I feel less positive.
I have been pondering a few contributors to this "flatness" of being that I am experiencing. Juggling workload is one. Lack of communication from people dear to me is another. The realisation of what the future potentially holds as I glimpse at that through others with more advanced Parkinson's is another. What I cant do today and therefore what I may not be able to do in future. My future reality
Yet, I still know that I am very fortunate to be in the position I am, yes, with a condition that will worsen over time, but that I have a chance to work around its ongoing limitations.
I walk everyday, and ponder everyday.
Parkinson's is like person rust. It is relentless. It never sleeps. And no matter how much rust stopper you apply it eventually will wear you down and overwhelm you.
But that doesn't mean I will give up. It just means that I need to set goals and keep positive. It could be worse, right?
I have been focused on physical balance in the last few months, quietly aiming to improve my core stranght and I am certain that I have improved over time. I even splashed out and bought a balance board to practice between weekly pilates classes and it seems to have helped. I am going to set a timer to see how I go, but I know that doing this one thing should help in the long term to prevent inadvertent falls issues which is an ongoing risk factor later in progression.
I have also been monitoring what maybe a light internal tremor - it may just be gurgling digestion but lets see.
D-Day 3 Year Anniversary 2023-05-29
Today is 3 years since my d-day.
This was a day that changed the direction of my life in many ways when I was officially diagnosed with Parkinson's Disease.
It was a relatively quick lead up to diagnosis for which I am grateful, and it spurred me in to action to do what I could to fight this somewhat relentless condition in any way that I could.
I must say that I am lucky that I was diagnosed quickly, that my symptoms are very mild, and that they are well controlled at this stage by a simple medication regime. And it appears that I am currently on a long slow path in terms of decline. Fingers crossed that continues.
What it did for me was spark me up. I became focused on my general health and well being, and I actually started to be more mindful of the longer term health implications should I start to deteriorate.
I began daily walking, started clinical pilates weekly and eventually found boxing for Parkinson's which I do weekly also.
I do a lot of reading about Parkinson's related to what is being researched at what works / doesn't work.
Along the way I have met a lot of new friends who share their stories, sometimes heartache, and occasionally a beer.
I have also made a point of being involved in Parkinson's community and events - doing what I can to raise awareness and helping out where I am able, while I am able. A bit of pay it forward I guess.
So over the last 3 years I have
- walked in each of the Parkinson's Qld very big walks, including a 24km stretch as part of my total 160km effort in the first year, a few laps of the city circuit in the second year, and an energy sapping 26.5 km this year ( thanks to Joe Kelly and Vince Kelly for leading the way)
- walked with my friend with PD Sandra Gerschwitz and others on 30km Coast Trek (Beyond Blue) walk from Mudjimba to Noosa raising awareness for Parkinson's especially Young Onset wearing a purple tutu
- walked in two "Lap for Parkinson's" on the Gold Coast clocking up a number of laps and meeting chatting with many folk with Parkinson's and supporters.
- spoken at two Parkinson's Qld "Newly Diagnosed" events in Brisbane and Gold Coast
- spoken at a rugby club fundraiser as a representative of the Parkinson's community and PQ
- become involved in helping to organise Parkinson's Boxing with the PFU group ( Parkinson's Fighters United) weekly boxing and social catchups
- been interviewed for the PQ series of "My Parkinson's" stories
- been interviewed by channel 9 and broadcast locally in Qld
- been interviewed by channel 7 and broadcast across Aus and NZ
- been interviewed by a final year student as part of an assignment for her coarse requirements.
- interviewed / chatted to a group of Care Managers for Home Instead across Australia
- played in a charity fund raiser football match PQ vs Home Instead
- been interviewed on ABC radio locally in Qld
- I facilitate the monthly Young Onset Parkinson's Disease Zoom catchup
- participate in a Community Involvement group for a cognitive project relating to Parkinson's Dementia.
- participated in local research projects including DNA sample, exercise physiology, light for PD, cognitive testing project relating to Parkinson's Dementia and other projects based locally at UQ, QUT and other research facilities.
There are probably a few other things that I can't think of right now, but mostly the important thing is that I am doing something. Something for me and something for others.
I am lucky that I have the ongoing support of family and friends to do some of these things which I appreciate greatly.
My perspective on life changed three years ago, for the better.
I don't take my current good health for granted.
Parkinson's is a body rust, it never sleeps. I just have to keep doing what I can, while I can.
To all my new Parkinson's "club mates" whom I have met over the past three years - Kia Kaha.
PD and Dementia Research.
PD CogniCare has begun. Watch this space
Becoming an Aussie.
As mentioned in the previous post the Australian government is changing the rules for the better to make it simpler to apply for citizenship. From 1 July 2023, kiwis who have lived in NZ for 4 years or more will no longer have to apply for and gain permanent residency first - which was the expensive and time consuming part. I will make sure i have my ducks in a row for 1 July application.
More help with Parkinson's awareness and advocacy.
YOPD catch up this month was an overview of what NDIS Local Area Coordinators can do especially those who are living with Parkinson's informative presentation followed up by a general chit chat. #thisisparkinsons . Again some very open and honest discussion from the group.
Walking.
On going through rain, and shine. Still haven't missed a day even when I was unusually sick and could hardly get off the couch for three days.. Now passed the Norman Invasion of 1066 . #committed.
Coming up is walk #1095....... that will be three full years without missing a day.
Medication/ Health.
No Change to the schedule or positive impact. Scheduled for a mole check this next couple of weeks.
Got a bit of interesting infromation from a relative - Vitamin b1 HCL in high does protocol could help.
Still need to investigate the Voice training options for Parkinson's as I sense I am getting softer spoken. Also need to look into some exercises for my hands - I feel that typing is going to be more challenging going forward if I don't start to address that soon.
Pilates.
Pilates is still on Wednesday evenings with a new physio taking the class - Sing, a Canadian from Vancouver. Seems like a good one so far. I am definitely able to balance better and as mentioned now have my own balance board to practice on at home I can manage that for extended times.
PFU Boxing and more.
Each week there is something new for the warmup. Good to see some of the old regulars reappearing too.
Social Outings.
Lots on the calendar, regular "Thirst-day" drinks with the lads are always good. With the relocation of the office coinciding with Ballistic closing due to administration we have been looking for a suitable new drinking hole. About 4:30 each week we have been heading off in search of a beer, still haven't settled on a new regular spot yet so stay tuned.
Work.
Head down and focus on delivery with more work coming on stream from sometimes unexpected places. Still trying to catch up and complete some existing projects. Many new projects in the pipeline and continuing to clean up existing projects.
Land Sailing.
The track update is not great news - now the home track will be based at Woodgate near Bundaberg.
Otherwise for me its still so far so good.
Same Same.
And that is all for just now - keep a lookout for the next post and thanks for tagging along!