Finn - Rest In Peace
My youngest daughter Emily lost Finn, one of her Rescue Greyhounds, to cancer this month. She was understandably devastated. I have much respect for her advocacy work with trying to not only stop greyhound racing altogether but also to rehome discarded ex racing greyhounds. She is a very dedicated advocate, frequently speaking about the plight of these gorgeous animals at the hands of many unscrupulous race breeders.
RIP Finn - you had a beautiful and loving second part of your life while in the care of Emily and helped her through some difficult times.
A busy couple of months
It has been fairly hectic on the work and Parkinson's fronts over the last couple of months.
Time to preview whats on the agenda coming up for me this month.
I need to knuckle down and deliver on some projects, finalise the system changes that I have begun, update my business website and see if I can actually get the blo-kart out for a run.
2022-09-03
My "step daughter" had her 21st party - was a lovely night to celebrate her progress and achievements to date. A great organiser, everything ran like clockwork. Well done Kaitlyn. Was a great night with the added benefit of some River Fire fireworks thrown in as a backdrop.
2022-09-05
Parkinson Fighters social catch up was on at the Pig n Whistle South Brisbane with the guest speaker Erica-Rose speaking about Dance for Parkinson's. It was a good night to catch up and chat with both boxers and non boxers and partners, supporters.
2022-09-06
Hosted the Young Onset peer support zoom chat again - another good forum to chat amongst a closed group of individuals from around Australia. This month we aimed to get some ideas from the group about what they would like to have had when first diagnosed and sent back into the world with this new diagnosis. There was some great discussion and chat about what would be useful. Hopefully we can take this to PQ to help put in place the real needs of those newly diagnosed.
2022-09-09, 2022-09-13 & 2022-09-19
More research - this one is the TRIP study which is to test the cognitive state & memory. This involved two 2 hour sessions and a follow up MRI scan.
The testing was actually enjoyable - some of the testing included recalling and drawing in the same formation a set of six shapes shown briefly, thinking of as many words starting with a specific letter in a defined timeframe, counting backwards by subtracting a set number from a start number, grouping and justifying a set of six cards and lot more. Recalling words from a spoken list was more challenging as my recall has traditionally been very good if I see something and not as good if only verbal.
Also in this study there is an interview with my partner to get her feedback on the state of my memory. To be honest, memory has always been a pillar of my existence, having a solid recall of facts, figures, codes, passwords and instructions. Once seen never forgotten. But I must say over the past few months as I have heard more and been involved more in the dementia project I have become more aware of the high potential correlation between Parkinson's and memory loss and dementia. This actually scares me. I don't think there will be any harm in having this benchmark done.
The MRI scan was interesting. Noisey but once I got into the process it was ignorable. Basically the process was a 10 minute period where they took a benchmark scan of my brain while I simply relaxed. This was followed by 8 x 5 minute blocks where an image was shown on screen for maybe 10-15 seconds and I had to press one of three buttons. The options were "new" - an image that I hadn't seen before, "old" - an image that I had been shown previously, or "similar" for an image that looked like a previously displayed image. After this was a second baseline scan of about 5 minutes. Hopefully the researchers can make some sense of the data collected. It was good to be involved in this study.
2022-09-21
I was privileged to be invited to participate in an important event at the UQ Centre for Clinical Research (UQCCR) . This was to signify that beginning of a Dementia-Friendly UQCCR Initiative and included many interested parties such as Dementia Australia representatives and other key members of the UQ hierarchy, plus other members of the Consumer and Community Involvement Group (CCIG). It was great to see this milestone as a starting point and due to the strong correlation of Parkinson's and Dementia this was important to be involved in. Well done to Nadeeka for driving this project, and hopefully leads to a more accessible facility at UCCCR leading the way for the whole of UQ and other learning institutions in Australia.
Family and friends
This past few months has made me think more about the influence we have and receive from family and friends. People doing good things for others. I am writing this on Fathers day actually and remembering how community focussed my dad was. I am grateful that both my parents showed humility, and a respect for the more privileged position that we were in compared to others. Not over financial but made do with what they had, and yet still were able show considerable and genuine assistance to anyone not so well off. This could manifest itself in terms of support of community such as the MS Society, through strong church based association, helping out those with mobility issues with a car ride to appointments, meals and other one on one support, and even hosting cattle after a major flood event. Dad and mum showed how not to "big note" what they did, mostly very low key and definitely not self serving. Dad was and still is an awesome role model, always willing to help others and never wanting to make a fuss about doing so. I look around my own group of friends and think that I feel most grateful when I see the community spirit that is part of each of my friends personality.
I look at my own situation. I can advocate and raise awareness on behalf of others who have this condition. I think about my involvement in various activities and hope that I show the same humility and am not perceived as being self centred and seeking the lime light. I hope that the reason I was gifted this chronic disease is because I can do this for others. Not just a financial donation to a worthy cause, but something meaningful that I will be able to look back in years to come and confidently say that what I did helped at least one person. That's it.
What Research am I doing?
As mentioned above - the trip study is this months involvement - will need to see what other projects are in the pipeline that I may be suitable.
Becoming an Aussie.
Yes.. A little more progress. Forms to fill and lodge. Yawn. It's a drawn out process. And expensive.
More help with Parkinson's awareness and advocacy.
YOPD catch up this month was a general chit chat. #thisisparkinsons
Walking.
On going through rain, and shine. Still haven't missed a day . New target 1000. #committed
Medication.
No Change to the schedule or positive impact.
Pilates.
Pilates is back on Wednesday evenings, more challenges being set for me. It has been smaller numbers with just the two or three of us this each week.
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. You can find us at Ballistic on Montague Road from about 4:30 each week.
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.
Waiting for each Sunday to see what's happening at the track.... and have had a few other events happening. Weather conditions mean no sailing. bah.
Membership has taken a bit of a dip and we are still trying to establish the status of the Hamilton track. I hope to get some beach runs in if there is a chance.
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!