March 2023 – PD…short update…choking, 40 becomes 20 and I really am British

I have started to feel that this blog is a little self-absorbing/self-indulgent and I have debated whether to keep it going, especially with all the other things going on in the country and the world which are all more fundamental. However, based on feedback from others, and the help this has been to me to be open and honest about my condition, I have decided to continue…

There are many positives which I start with (and they outweigh the negatives) and some great tips as well but this last period has been one in which my understanding of what PD is and its impact has started to become real. I am (we are!) beginning to understand the stamina required to fight it – it is a multi-faceted disease which moves at irregular speed and can impact in so many different ways – yet it is manageable…my fight is not a 100m hard sprint, it is a long marathon at slower burn but 42.2km (with occasional slippery ground and mountains up and down).

The good stuff (positive etc) and some great tips I learned

Firstly the day-to-day stuff continues as before… I continue to operate basically normally on most levels (as normal as I ever was), keep up the full routine which I have described too often (except that due to consolidation of medication the daily pills are down to 18.5!!!) and participate in normal activity inside and outside of work. My family is doing great and are awesome support for me and distraction too. This truly can’t be understated and is possibly the main measure of success in the fight against PD.

I have just finished a 6-week outpatient rehab program at one of the large hospitals here (Tel HaShomer Neurological Rehab unit) – 2 mornings a week. I have had intense PT, OT and Speech Therapy and it has taught me a lot. Most importantly it has had good results. One example is a test I did on the first morning of Occupational Therapy. I completed the exercise (dexterity test picking up and putting down small objects with my (increasingly) weak right hand) in +40 seconds. On the last day I did the same test in 20 seconds and was told the average is 21 seconds. It is real genuine progress. It is a long time since I have done anything like that (yes – kindergarten😊)

The rehab program (all aspects) taught me a few key things which I guess all PD people know (these apply to more than PD patients but are accentuated significantly by PD) – unfortunately those who know me will know how these inconveniently counter my basic DNA which I am working to address

1. Be patient/deliberate – in the way I speak, eat, walk, everything….I can’t rush things because my capabilities are not as good as they used to be…rushing will lead to choking (more of later), falling, etc
2. Don’t multi-task – this skill (to the extent anyone does it well) is much harder with PD – if I try to concentrate on two or more things at once it means both get dropped…so stop doing it
3. This item I didn’t believe but I have learnt that breathing is actually very important. I have been told this time and again by many people but it was reiterated….I don’t breath properly and need to master this (I am trying)
4. Big/bold movements are important to keep muscles in shape. This for me was the advice over stretching muscles but also writing which before rehab had ceased to work and which now, I overly write big in a poor attempt to continue to write
5. Lastly the expression “if you don’t use it, you lose it” was stressed. What was happening to me subconsciously with my weak right hand (it used to be my dominant but has got much much weaker) was that I was stopping use it and starting to do everything with my left hand (doing buttons on my shirt, lifting objects, typing on my phone etc)…if I don’t fight this it is a self-fulfilling prophesy.

I need to hard wire these changes into my daily routine as much as I have done with Yoga…it is easy to say but that is the challenge and as I remain ultra-competitive I am going to try the best I can.

So…what is the less than perfect stuff

Choking: This is a major problem for many PD sufferers (see link for more info) and it seems to be my main symptom at the moment – it sadly seems to be my super-hero item. I have choked a lot recently. Once in my sleep (guilty party was a tiny piece of apple which after what felt like an hour of retching came up), once at a wedding (we had to leave), once at a gathering of friends (the guilty party was a piece of carrot that I ended up sending across the room) and a couple of times at the dinner table, last time a few days ago after which I spent most of the coming days and nights coughing violently (and knock on impact on feeling lightheaded, muscle pain in my stomach/chest, loss of voice and headaches). I am waiting for a FEES test (fiberoptic endoscopic evaluation of swallowing) in ten days having seen the specialist and we will take it from there. Until then the goat yogurt and banana producing companies are having a bumper time.

The solution is mainly changes to behavior – being far more careful how, what and when I eat (so apparently eating cereal whilst talking on the phone and running after the dog is not a good idea), chewing is recommended, concentrating on the food and exercise of the muscles involved in swallowing.

My relationship with food has continued to change…..before all of this, my only restriction was eating Kosher (which is a pretty big one especially when travelling)…now, I can’t smell anything, my taste buds are dialed back a large way (I have mentioned these before) and now eating is something I have to do with full concentration and on soft stuff ☹ …

Everyone I speak to says this is “manageable”/”not the end of the world” and it is true….but I will speak for myself only – it doesn’t mean it doesn’t matter…food is one of the true pleasures but as people say to me – it is life 😊

Sleep and sleep talking (The British way):

There is little new … however I am still finding it very hard to sleep – the last three mornings I have woken up at 1:15am (on Friday night I went to bed before 9pm so my fault), 2:40am and 2:40am. Lots of factors behind it (stress etc etc) but it is not good. I even went mad yesterday and spent 2 hours ironing the huge backlog of shirts I had gathered.

The sleep-talking is interesting. My wife has often told me I do it (it happens to people but can be more common and intense with PD). So to this British thing…

In a previous blog I described by Britishness as defined by walking into a lamppost and saying ‘Sorry’ to it. Anyway a few weeks ago I started using a sleep app which also monitors sounds and I found a recording of me … in a very very crisp British manner I said out loud “Make it snappy” which I have never knowingly said aloud before. Guess even after 16 years of living abroad I still have it.

So what is the summary……basically in my personal view I am positive and am doing well physically … I am fighting this hard and my family is helping me considerably … but I can’t pretend it is not taking a toll especially the sleep and the impact of choking. Still I have faith and believe I am only presented challenges I have the ability to overcome so we keep in the game day to day, mouthful by mouthful (of soft stuff of course)