When I last posted a blog article on my Parkinson’s (in June) I had no idea what was the come in the coming months.
On the 3rd October I drafted an updated blog – which I thought at the time was interesting – but didn’t hit send.
Then the 7th October came and with it war in my country. I write a daily blog on linkedin on that topic and I will leave all of my views on this matter out of this blog and instead focus on the PD.
The world before October 7th was very up and down. I have chosen to publish below the draft as I left it a few days before the war and then after to address the 7th October onwards because they are really two worlds.
October 3rd blog: Ups and downs – 10k progress, YK/more drugs and thoughts on therapy
I wasn’t going to write a blog post until I hopefully completed the 10k which I am hopefully PG running on 3rd November but both for myself (I guess it is my blog) and for those reading my journey it is important to see the real (or as real as I am willing to share) journey of highs and lows, and some real lessons learned.
The ups
I am currently on track with my 10k training which involves a structured program of running three times a week according to an increasing schedule. This is of course in addition to daily yoga (and walking on off days). It is going to plan … some days better than others but it is overall good. I even successfully navigated using an energy gel pack mid-run so it must be coming together… 🙂
More importantly I have had great reaction to the fundraising and despite many blips with donation and website challenges we are over 50,000 NIS which is awesome. This blog is not about the fundraising but details are below (I DELETED THE DETAILS FROM THIS ACTUAL POST) if you want to give to what are now one of three charities. (obviously I can’t miss the opportunity for the plug and to thank everyone who has given from the bottom of my heart).
Another high is that I set myself the challenge again of being the chazzan for Mussaf Rosh Hashanah on both days in two synagogues (for those who need translation that is leading prayers on the Jewish New Year prayer services). It was hard and I hope it was ok for the two communities who put up with me but it is a big deal to me that I can still contribute.
Lastly my family continues to be the high….I simply love my wife and kids (and wider family) to bits and am so grateful to them for their support, normalcy around me and putting up weird and wonderful symptoms (some mentioned below) but also on an amusingish note with my shocking cooking (as I can’t smell and have less taste everything has tons of garlic, chili and onion and apparently creates carnage on the senses).
The downs – (1) physical and (2) emotional
Despite all the efforts I am putting into the fight, the condition objectively worsens noticeably (although you have to look carefully). In a recent appointment with my neurologist my objective MDS-UPDRS rose by 9 from 14 to 23. My right hand is specifically clearly worse but not the only issue. As a result the drugs continue to go up but I guess this is not news and this is exactly to be expected (and what the drugs are for).
More scarily was my Yom Kippur. For those who don’t know it is a 25 hour fast (liquid and food). It is the most serious of the year (I am exempt from all others). Anyway having consulted I decided to fast (please don’t comment “I told you so” although you’d be justified.) I didn’t take my pills and it was just unbelievable to see the almost immediate return of all the worst conditions … I fell twice, I couldn’t touch my right hand to my nose with my eyes closed, I couldn’t balance and had to shuffle with a stick. Equally scary was when I took the pills around midday….almost immediately the meds kicked in and the symptoms reversed…the speed of change was something else.
I have seen this in videos of others (eg Michael J Fox) but never actually really realized how dependant on the tablets I am and how ‘Just in Time’ they are. As agreed with the Neurologist – this is not an experiment which will be repeated again.
My sleep continues to be an issue. My average according to my sports watch is 4 hrs 53 mins for the last 4 weeks which I think is a slight improvement but is not enough. The has triggered a much deeper introspection. More than one professional including a top sleep neurologist who specializes in the field and a CBT sleep therapist indicated that the issue is really acute anxiety as the therapist put it related to the ‘closing in’ and dramatic acceleration of aging from PD, implying (as I interpreted it) that I need to recognize that my fight against it is not necessarily the right approach (like ridiculously trying to hold back a tsunami) … and that I need deeper therapy.
Therapy is a very emotive topic as I have learned and people have very differing views on the subject…some passionately in favour and others cynical. For me it is absolutely crystal clear that it makes completely logical sense clear and many people I trust swear by it. As one of my close family said – “You have tried Physiotherapy, Occupational therapy, Sleep Therapy, Speech Therapy, Sports Therapy, Osteopathy, etc….but you haven’t tried the one that may help you the most”. I accept this logically and I have tried with two therapists, neither has gelled or perhaps I didn’t give them the chance. Anyway for me – and only for me – I feel at the moment that despite the losing battle my best way to cope is to maintain the positive approach and to try to hold back to the Tsumani…we will see how it turns out but this fight is one I believe in.
The war
I don’t like writing about the effect of the war on my PD because this is inherently selfish with so much anguish around but as my blog is important to a number of people and as I write daily on war, I have taken the time to write this update.
As context – My son is in the army and on the 7th October was called into fight some of the fiercest battles in terrible conditions losing friends and seeing the carnage of war. Since that day he has been in and out of the fighting often for long periods offline.
Alongside other stresses such as friends with captured children, friends/clients/colleagues who have died and/or lost loved ones and a very weak economy which has made work hard, the stress has been acute.
As a pure barometer the stress (aka sheer terror) when my son is offline hits my PD almost instantly to levels like Yom Kippur above – frequent falls and collapses (not from lightheadedness but from loss of balance), multiple freezing (where my body simply stops mid action for a minute or two) events and terrible muscle pain. In these days I was frequently using a walking stick etc. My sleep has been worse than normal when he is in battle and this compounds everything.
However when my son has been out of action (such as today where he is home for two days) my PD is back to its usual if slightly annoying levels. It is 180 degrees different.
So in essence the war has created a stress monster and yet again it has proven (together with sleep) the single biggest impact factor on my PD.
On the positive side – if there can be one – I kept up my exercise regime largely unaffected and daily yoga and was able to do the 10k which was a huge achievement. I couldn’t do it in an official race because that was cancelled and I didn’t do it with my son because he was in the army but I did it myself one Friday morning and am pleased I did.
I have also tried where possible to stay positive with PD and in doing so to be as strong as I can for my family and those around me…I have to fight…and hopefully this in itself helps
In conclusion
Stress and sleep are so critical and are my top priorities…war has far bigger consequences than my health but I am representative of many others whose health is a secondary factor of times of acute stress terror
Positivity despite all remains my focus as is exercise.
I pray for true peace not just for my son, my country, innocent victims across the board but selfishly for reducing the impact and progression of my PD.
