My latest blog -

[blazyb]

August 2022 Update – “keep up the good work”, a few bumps and a word on insurance (as boring as it is) -

First, let’s start with the big picture – I remain positive…almost all the time!

I met two days ago with my neurologist and we discussed where my Parkinson’s is at. In line with how I feel generally, we are doing well, despite some concerns (see below). The medical reflection of that is the scoring on the standard clinical assessment used by the doctor. For the first time since I have been assessed the score has actually gone down (that is good). With the exception of my tremor in my right hand (which has increased significantly) all else is basically the same or somewhat improved. This is a big deal for me because I also feel it.

This is of course is not a reflection of any reversal of Parkinson’s but it a testament to the collective input of a huge and increased number of medications (which I have written about before) and variety of other measures I am taking and which i keep up religiously – – Daily Yoga (and a weekly PT session), Weekly boxing 1-2-1 session, Daily 4km-5km, weekly Physio weekly Acupuncture, diet and of course work. So the message from the doctor is DON’T STOP – keep up the good work (with a slight increase in two of the meds to reduce the tremor and reduce the need for the bathroom (for which I am already on two meds). As an accountant, it is great to see in actual numbers that I am able to hold progression at bay for now….with a lot of weaponry.

So what else is happening…some points of interest?

Unbelievably – having never run since school – I am now able to run 5km and have done it properly twice (I don’t run every morning because this would be too much – so I mix it with jogging and walking ). My son jokes that my speed (36-37 mins) is not running but walking (he is at 21/22)…but, for me, it is a barrier I have been able to cross and it gave me a fantastic feeling. I learned that proper breathing is the key (as well as decent music).

Another new thing … I finally did a long distance work trip for the first time since PD/C19. In my previous life I was always on a plane (way too much so) so I was dreading the physical side of the trip – 7 flights over 7 days to California. But…I made sure the hotel had a gym, took my yoga stuff, didn’t overdo the agenda and kept up my schedule of exercise and it was good. (Confession – I didn’t fly economy which I don’t think I could have done especially being 6ft 4in)

One new pleasure (not) I got to experience was taking part in my first research project for Parkinson’s. Without going into the detail I was asked to do an MRI for research purposes. The only difference was that this one lasted for a little over 90 mins. It was incredibly uncomfortable but I was at least able to watch, a few times, a looped National Geographic show on Elephants fighting with Lions….good programme but maybe not as often as I watched it…The Lions won.

So that I am not accused of whitewashing – I have to highlight that it has not been a period without negatives and some serious ones. I had a couple of weeks of extreme light-headedness, dizziness and balance problems which led to me falling twice (more crumpling in a very unimpressive way but straight down to the floor) in front of the kids and I narrowly avoiding banging my head on the edge of the table tennis table, and almost falling many more times. I have as mentioned a basically permanent tremor in my right which I hide really effectively (which I am about to start an increase in one of the drugs to try to control), I have ongoing stiffness in my muscles (back, legs, facial, chest, stomach…you name it) and weakness on my RHS, writing is very hard, my voice trails off at the end of a busy day (Siri doesn’t recognize me then) and my startle response continues (see previous edition for info on that). My physio and I joke that for her it is great – she treats me (works on my fascia), does a genuinely awesome job un-stiffening (there is probably a better medical term) the muscles and then I come back exactly as I was and do the same thing again…..maintenance…… a good business model 🙂 but also works for me.

The fact is however, that I can carry on with my life pretty much as normal including an amazing few days away with my wife on our 25th wedding anniversary. I simply can’t thank her and the kids enough for their support, ongoing humour and carrying on with life (and excelling at it). All 3 kids are a tremendous blessing and a huge source of pride which is worth fighting for.

Most people remark that I am looking well which is nice to hear but a few people – largely those I haven’t seen for a while – see and remark that I have changed physically – one former client – actually asked me if I had Parkinson’s (it was towards the end of a long bad day) and colleagues abroad knew something had changed when I met up with them. Clearly this will become more evident and frequent as time moves on and it does scare me but I am getting some practice so hopefully I will acclimatise. The key is to focus on doing all I can to push off these future milestones.

Emotionally…I am good. True, I have negative thoughts especially during the two weeks mentioned above, but this is my battle and as much as I have to worry about the future I know that all I can do is to put in the effort now and do all I can so I keep a short term view on things.

I have to say a word on insurance as dull as it is. In hindsight (yes…it is a beautiful thing) I didn’t follow the words of my late grandmother. Her view on life was to make sure to be covered for all eventualities. I invested in many future plans such as pension and life insurance but I didn’t keep up to date with additional Critical Illness cover nor with ‘long term healthcare e.g. assisted living coverage’. I am now largely out of practical options on these fronts and indeed have been turned down for the long term plan. Insurance is a gamble but I should have done more. It is what it is but I would feel better if someone learns from this.

So basically nothing extraordinary has happened but a lot has happened…but life continues and I share the worries of all of us about Ukraine, the cost of living crisis, climate change and like others I pray that these should resolve themselves. People in the world have far greater problems than me 🙂

[faridaro]

Thank you Blazyb for such detailed update. Hope all your hard work continues to bring improvements or at least to stop PD progression. And you are right - with so much suffering going on in the world it's good to have an attitude of gratitude for the good things and blessings we still have.

[ddmagee1]

Wow, blazyb!! You are, like, really positive, dude! I’ll have to print out your posting, and post it on my bulletin board, for inspiration! In the USA, our insurance, for older people, like me, doubles in premium pay, when one is diagnosed with Parkinson’s ( or a similar disease, like Alzheimer’s, or ALS )! There is tremendous tension, daily living, here in the USA, because our country is divided, politically, and there are a lot of angry, mean, upset people, which results in a lot of crime, and murders. So, like compared to the emphasis, of preventing acquiring COVID-19, someone, like me, with just a silly chronic ailment, PD, sorta falls between the cracks, in terms of care, and concern, at least, in the medical community, where I live. The Doctor sees me for 15 minutes, once a year, talks a bit, writes stuff down on his computer screen, and then, when it’s almost time for him to rush off, and I ask him, about, how to deal with constipation, as an example, or the apathy & coping with declining ambulatory ability, his response is “ I don’t do that “! So, I’m sure you can see why, you are such an inspiration, for me! Good luck! Wishing you, and your family, the best!

[blazyb in reply to ddmagee1]

Thank you for the response … sorry to hear about your experiences. I have so far had great support for which I am grateful. Best of luck and best wishes

[ddmagee1]

blayzyb, having great support, from the medical community, government, friends, and family, makes all the difference, in the world! Again, thank you for your inspirational message!

[Despe]

"I share the worries of all of us about Ukraine, the cost of living crisis, climate change and like others I pray that these should resolve themselves."

All man-made. . .