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Young Parkinson’s – only one part of my life

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World Parkinson’s Day is in a month’s time (April 11). Five years ago, this would have meant nothing to me, nor I suspect to most of the people reading this. In 2020, however, seemingly out of nowhere, having noticed a recent loss of balance, blurred sight, drop in cognition, weakness in my right hand and an inability to write, I received the news that at 45 years old I had been diagnosed with Parkinson’s. I have learned subsequently that over 8.5 million (35,000 in Israel) people have PD, and about 10 to 15% experience symptoms before the age of 50.

I have decided, in this month leading up to WPD, to write about my experiences to do my little bit to raise awareness. Having been open about my journey partly through writing a blog on a regular basis, I have come across many people struggling to cope with the disease, some of whom are trying to cope alone and hiding it, and I am not just talking about the patients… I also refer to the families, friends and other loved ones struggle to cope.

I would like to touch upon a variety of topics — some emotional (some up and down, some funny and some sad) and some factual but overall I want to focus this specific post on a summary of the most important points from my perspective — namely 3 things….  (1) Marathon not a sprint (2) Positivity and keeping active (most of the time anyway), (3) Hope.

As background for those who don’t know Parkinson’s — here is a very brief overview and it will be the only medical paragraph. Parkinson’s – most recognized in reference to Muhammed Ali and Michael J Fox and to tremor as a symptom – is at its basics a progressive, non curable (currently) disorder caused by degeneration of nerve cells in the part of the brain called the substantia nigra, which controls movement. These nerve cells die or become impaired, losing the ability to produce an important chemical called dopamine. It therefore impacts movement and other brain functions in many different ways. Dopamine is well known for its ability to acts on areas of the brain to give you feelings of pleasure, satisfaction and motivation. but it also has a role to play in controlling memory, mood, sleep, learning, concentration, movement and other body functions.

Marathon not a sprint:

My physio and I were joking the other day when she asked me which area I wanted fascia treatment on for my muscle rigidity. I actually asked her semi genuinely if people actually come to see her for a specific limb or body part like a knee. She said “Of course”. My weekly session is a rotation of the most painful areas at that time as my muscles are basically rigid everywhere. In fact I once joked I was her best patient – the pain would be relieved and I’d come back the same way the next week 🙂

Some illnesses seem to me to be a sprint – terrible symptoms but dealt with (or not) quickly. PD has a different flavor – it is (until hopefully science says otherwise) a degenerative disease that moves at a slower speed and the battle is to slow its progression and treat the symptoms for as long and as effectively as possible.

I am almost 4 years in and am on the journey. In many ways I am completely blessed that PD has had limited effect – I can still function pretty effectively without too many people noticing a huge difference, I can still enjoy being with my simply awesome family including my wife of almost 27 years marriage and my three amazing kids but it has been a progression and 4 years later I am still ‘winning’ but am on a significant amount more medication than when I started. Symptoms are wide and varied and include major sleep issues tied to PD (I wake at between 1-3am almost every single morning having tried pretty much every treatment possible), balance, falling and freezing issues (I usually have to walk with a cane which is not something a 48 year old enjoys) and I am prone to choking violently (and am recovering from a recent round now). My tremor – in the right hand – is very weak. When stressed all the above magnifies and recent times have been acutely stressful so lots of falling and freezing!

‘Winning’ however comes with huge effort which for every person is different but for me includes: 19 pills a day (yes 19) a small number of which are supplements, a very specific diet, daily yoga and at least 3-4km of walking or running, a weekly therapy session, weekly physio and often two sessions or an accupunture session and a weekly personal trainer to work on gym strength, balance or boxing. It is not cheap!!!

Therefore my point about it being a marathon not a sprint. Some days are great and some let’s just say are less so (including the mornings I wake up and am simply unable to type until the meds kick in), but it is a long battle not a one time sprint and whether with therapy (as I have been trying) or other forms of acceptance it is critical to still yourself for stamina.

Positivity and keeping active

I will hopefully say more in further posts but briefly….I am not an overly emotional person – one of my friends jokingly told me I was ‘an empty tin can’ but this is an emotional as well as physical journey.

From a purely practical medical perspective, we are talking about a loss of dopamine and a mass of drugs designed to rebalance it – that in itself takes its toll and a few times I have found myself on the borderline of depression. As it is a long term game it is all the more risky.

Faith helps me, and I am lucky to have a generally positive outlook on life but the main thing for me is to keep active. Doing our best to keep the brain engaged with work and the body moving is key. This is a moving target which as the disease progresses will change in levels of capability but the key is to keep pushing.

I should say that before PD I did NO exercise. I have written before that in hospital they told me I must start and recommended Yoga. I laughed and said NO. They suggested Tai Chi and again I said NO. They then recommended Dancing to which I said “I’ll do Yoga”. Since that day I have pretty much done yoga every single day.

I started walking daily and moved to running and last year actually completed a 10k run for charity. I had never run since the days at school when I was last on the cross country efforts. If I can, almost anyone can. I should say that my son (an elite soldier) made the point that: “Daddy – that is not running!” 🙂

Possibly the most important piece of advice given to me was by my neurologist who said, “Make Parkinson’s part of your life, not your life.”. There are days when I wake up and can’t type or have no balance in which I don’t feel that way but his advice is golden and trying to stay active and positive is the key.

Hope

Personally, although a person of deep faith, I am not counting on miracles and progress with research is slow but treatment is advancing and I have seen it and my goal is to stay in the game long enough to benefit from future treatment. I want Please G-d to be around for grandchildren one day so I need to keep fighting!

That last point emphasises why I am seeking to ‘bare all’ to raise awareness:

  1. To those out there who can afford to contribute funds to PD – there are many ways through global and local initiatives – please do so…it is a horrible disease which needs research dollars to help especially those many millions yet to be diagnozed prevent it and to ease/cure the journey for us on it.
  2. To those who have it, it is not pleasant and many have it worse than me. It impacts a person physically, mentally, emotionally and financially in so many ways, but if you are able to fight it and stay active it is to some extent ‘manageable’ at least I have found it so, so far
  3. To others reading this, it is a broader message…all of us are impacted by our measure of hardship in its own shape and form. I have a lot to learn from how others cope but I think there are some universal messages in my experience
  4. Lastly, to the support infrastructure – the family, friends and healthcare workers (who have each in their own way blown me away through their help) – THANK YOU!!!!!!
About the Author
I live in Yad Binyamin having made Aliyah 17 years ago from London. I have an amazing wife and kids including a son in Special Forces and two daughters, one soon to start uni and one in high school. A partner of a global consulting firm and a Parkinson's patient and advocate.
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