Turn Left or Turn Right.
In this update some thoughts about life and the choices we have to make.
I have been reading more on the support / chat groups and my realisation is that I am very fortunate to be at the stage I am and can still make some impact on how my next few years may go health wise. I have been thinking about the choices that we have to face in terms of our condition and the path that we choose once diagnosed. For me it is a case of determining everything by reviewing the options available and choosing the left path or the right path. I typically break down problems into a structure like this for my work, so am applying the same logic to my Parkinson's.
For example never having been a dedicated exerciser - more an occasional one to be honest - when informed that the simple act of walking could have some benefits such as balance improvement and potential brain cell recreation I had a choice : either keep my status quo limited activity model, or alternatively try this walking caper and see if it helps knowing that it is a long term strategy move.
I chose the "right" path and decided to start walking. And every morning since, I wake up and re-evaluate and revalidate the decision choice, and everyday I choose the "right" path, roll out of bed put my headphones on and head out for my trek.
And so to other "turn left or turn right" choices with regards to Parkinson's. Should I be open about my diagnoses or keep it to myself? Should I write this all down in case my story helps someone recently diagnosed? Should I actively promote awareness in any way I can? Should I volunteer to have a video done talking about my situation?
I align the options as follows - the easy, but somewhat insular / self denying / woa is me / head in the sand option is typically the "left path" and the harder / put it out there / make an impact / do it for others option is typically the "right path" . And the answer is generally always the same - take the "right path".
And thats all while I am in a position to do so. There may come a time when I don't have the luxury of a left or right option, only time will tell. And the left /right choices I am facing with Parkinson's are relatively minor at the moment - there are many discussion threads of folk contemplating DBS and other treatments to deal with their condition. I am sure in due course I will need to make some choices that will require a lot of contemplation, but for the moment I can research extensively so that my left or right pathways are clear when that time comes.
Being a support for others.
I recently caught up with a new friend at a social event and we discussed a range of topics related to support groups for folk with lesser known conditions. It made me really think about how Parkinson's Disease sufferers have a reasonable network both with formal advocacy bodies and less formal chat / support groups compared to others. As always, more awareness is vital and even though Parkinson's is still behind many other groups in terms of public knowledge and awareness, at least there is a base level of knowledge in the community.
I came to the conclusion in the course of my chat that there are many conditions where there is no local support groups, and my friend is in that position with a condition that due to extreme light sensitivity manifests itself with severe migraines and is quite debilitating. For this condition, being so rare, there is really no local support network and limited publicly available information. Despite this, my friend seems to be very positive and deals with the limitations that this condition brings with it. Being able to be a sounding board and openly discuss things without prejudice or judgement, nor sympathy may help in some small way, and is at least something I can do.
Walking.
I achieved a milestone the other day - 120 days in a row without missing a morning walk. It doesn't sound that exciting I know, but it was significant to me. Thats every day since the Sunday after my diagnosis on the Friday afternoon. Some interesting flowers coming out, with my all time favourite Jacaranda beginning to flower! And with the weather being so dry and not so much green feed, more Kangaroos are about. I have see two in the last couple of days - one hopping across the road and down the next street at pace, and one unfortunately having a long sleep on the side of the road after losing a battle with a car.
Signed up to walk across the Story Bridge at the start of November - now I need to get a Parkinson's Shirt organised to get awareness out in the field while I walk.
Medication.
No Change to the schedule or positive impact. Due to see my Neuro guy in the next couple of weeks and expect it will be a case of "hold the line".
I have noticed lately that I seem to have twitchy feet.....sitting watching tv or relaxing I have observed that I seem to be moving my toes a lot. Not sure if this is new, but once you notice something it seems more to observe and see if is a sign of something.
A minor accident...
Today (2020-10-16 11:05 am) I was involved in a minor car incident. An idiot taxi driver decided to back into me while waiting at the traffic lights. Only damage appears to be to the number plate, but i was so trembling i could hardly hold the phone to take pictures, and was shaking a lot... I have been in car accidents before of a more significant nature but have never had such pronounced shake. Not sure if its Parkinson's related or medication related. My heart rate didnt seem to increase dramatically. I has taken about 30 mins to get the shaking to stop fully. Noting here for informational reasons.
Research.
Am planning to make the research links page a bit more useful, it was a simple list to start with but might expand that to make better use of the info in it.
Joining in with others.
With Covid still impacting the social aspects of day to day - more events and things are opening up. Running a full meet up for Pizza Bugs and Fun Joomla 4 bug squash - 24 hour global event this month at the office. Not sure how many attendees will be there on the day, but have enough overflow space to handle a reasonable crowd. Have rearranged the office a little in preparation to ensure there are desks for one and all.
Pilates.
Still getting the hang of the program activities names but clearly working out the equipment and settings, so much so that I now have additional balancing activities to do to fill up the allotted time. According to Justine, the physio I am the "quiet achiever". I am sure that most of you who know me, know I am the quiet one .
Social Day Out.
Some upcoming events in the pipeline, like Opera in the Reservoir and also scheduled to have a beer with the 4101 crew to wish Keith well as he moves to Sydney shortly. ( he is one of the organisers).
Garden.
Need to plant out the mint and also plant the spuds this weekend. I am also going to plant some more seedlings for ongoing produce plantings.
Have to head to Bunnings and get some fittings for the recycled solar heating panels and some posts to rebuild the pool shed. And some hinges for my "glass" house I better also order the solar powered pump to circulate the water.
Work.
Well its gotten busier - going to have a strong finish to the calendar year I think. Lots of word of mouth referrals which is interesting in itself. Participated in a full day world wide event doing patch testing and bug squashing to help move forward the release of version 4.0 of Joomla!, a web Content Management System. Was good fun and a chance to "give back" for open source software that I use day to day. Meeting new folk from around the world in a virtual way was a plus.
Family news.
My eldest sister is dealing with some serious health issues battling away against a determined pancreatic cancer. I love her to bits and she is always top of mind. I feel a bit frustrated about not having an option to just fly over to NZ and give her a big hug, but thats the way things are just for now. I am sure many folk are in the same position - cant see loved ones and family at a time that is so important, all I can do is send positive vibes and know that she is determined to beat the demon that is cancer. Love you Phiona, stay strong.
Neuro specialist visit.
Mid October was time for another visit to Prof Peter Silburn, with nothing new to report and it was mostly a case of steady as she goes. Medication remains as before and I am to see him again at the end of February unless there are any dramatic changes.
Updates to the website.
Because I can, I added a new custom module that I built to count the days since my diagnosis, just for a bit of geeky fun. By the way this website is built using Joomla 4.x.
Otherwise for me its still so far so good.
Same Same. PARKDIS20 is my new normal.
And that is all for just now - keep a lookout for the next post.