Before I start in earnest the one overwhelming lesson I have learned this period is that being a fool and ignoring all advice from the professionals is a terrible idea…but I will come back to this….
When I came to write this update two fundamental questions crossed my mind…1) Why and 2) What tone to take? ‘Why’ is relatively simple and I have explained it before – it helps me frame my thoughts and take stock and I have seen that an honest, personal perspective is interesting for people who have similar experiences either themselves or within their family, not to mention it is a good way to share practical ideas.
What tone to take is more difficult…I am a positive thinker / glass half full person but I don’t believe in whitewashing my experiences and pretending all is wonderful for me or my loved ones so finding the balance is important and I have given it true reflection so that this article is a real perspective on how I feel.
So following the big ramble above, here is the update:
Let’s start with the FOOL comment…I have paid a fortune for tests (FEES), examinations, doctors appointments to look at how to control my choking and it’s impact in terms of coughing, damage to my muscles etc and the one thing I was told again and again…be careful what you eat, how you eat it, when you eat it etc…I.e. chew, swallow carefully, don’t talk or walk etc….and what did I do…I spied a delicious whole wheat bread roll whilst in London and decided to abandon all training (and my diet plan which calls for spelt sourdough only) and eat it (more like stuff it) whilst walking …. and guess what happened….just over two weeks of coughing, partly lost voice, headaches and muscle pain from the damage my coughing caused…LESSON…don’t be a fool!!
On a serious level the thing about Parkinson’s is you have to be on guard 24/7 from falling, choking etc and one slip up can cost you hard. It is nice in theory to be 100% careful but life is not like that…but I do need to avoid multi tasking or slow down knowing I can’t operate at the same level as I once did.
I just watched (one of the toughest but most inspiring movies …) ‘Still’ by Michael J Fox on his battle with PD in which has has used his skills and energy to literally change the future. He literally falls, breaks bones and bounces back again and again. He is told the same thing again and again…slow it down. Whilst I have to learn from his mental capability to bounce back and stay positive I have to slow it down to avoid the bumps first.
So apart from the choking, this has been a contrasting period but one with some notable pluses and a couple of minuses…
Health wise – apart from the elephant of the choking (and stress/sleep below) I am doing well…I have come off the Dekinet (the withdrawal was not pleasant), have continued to work on my exercise (I completed an 8k run for the first time when in Manchester) and have been focused on building up my core. I am keeping up my daily schedule and have actually added a course of sports therapy sessions (as a Guinea pig for a university course) and new exercises to my routine.
In my old life, I would have laughed at the concept of me doing exercise…now I am planning to do a 10k in November for charity …. more details to come soon and yes I will be looking for support. My youngest daughter is helping me with this so it will be awesome.
I have been fortunate to have had occupational therapy sessions and they have taught me some great tips to deal with practical issues I have…For the weakness in my right hand which makes it hard to type and almost impossible to write coherently at times they have helped me with practical exercises to use my right hand. For my typing difficulty they suggested I increase the size of the keyboard on my iPhone and for my morning stiffness they gave me morning exercises to do on waking up …. These and many more….the point is that there are lots of tips we should be sharing which practically make a difference
Another surprise was that I had the opportunity to do another first – I gave a lecture in Hebrew last week to a Parkinson’s group (my native language is English). Although the Hebrew left a lot of be desired it was a huge step forward for me and one I am a little bit proud of.
Regarding the bumps….
Unfortunately, My sleep is shot to pieces…As always, thankfully, I fall asleep well, but wake up at 1:45, 2:45 sometimes making it to 4am (best for weeks was 4:40) but once I am up I am up and can’t seem to solve it. I have tried pills, CBT, sleep hygiene, alcohol (the most pleasant) etc and haven’t solved it as of yet. Stress and sleep deprivation are probably the two biggest agitators of PD and frankly anyone’s mood, ability to operate and behavior. I will admit that whilst I am a very careful driver I had a near incident caused by lack of sleep and have decided (100% decided) that if any doubt I will take the train and not put others in a dangerous situation again! As all the points above, I need to adjust to a change in my capabilities.
The second danger item above is stress. This is a tough one because we live in a real world where work, family, aging, finances by default contain elements of stress. More than that, work is mentioned by the doctors as a critical part of the fight as it keeps the brain working…so finding the balance is key. All I can say is that I have not nailed it although I have made real progress.… I love work, I pretend I can operate as I used to do and it is a stressful period economically (British understatement) so this is work in progress.
Mentally as said above, I am positive but I have danced with negativity… I (again as a fool) read on Bard AI some studies which were let’s just say negative to long term prognosis. It ate me for a few days until I regained my balance. I didn’t get into a funk but I very nearly did and if I wasn’t a positive person I am sure I could have slipped in….so it is served as a very powerful lesson…
Finally I have in the last few days noticed something I hadn’t seen before. Although my tremor and weakness of my right arm is only minor and often nonexistent, I am beginning to feel a clear correlation between the time from the last dose and the nature of the symptoms…people talked about “on” and “off” and I didn’t really notice it…I am starting to get it now. Hopefully this will not continue at pace.
So overall, where are things…I know that PD progresses and the fight is to hold it at bay…it is progressing but that is not new…my fight continues…. …..bumps some serious and largely self inflicted but I’ve had a generally good period and actually non PD topics such as family and friend challenges, my cute dog being ill, birthdays and of course Coldplay have dominated which is good if you know what I mean.
2 Responses
I like that I was mentioned but I think that you should have wrote “manager”
Hehe