I am conscious that I have announced to a lot of people about my diagnosis of Young Onset Parkinson’s Disease, as I decided to be as open as possible from the start. Although this was an initial reaction that I now worry was a bit dramatic. It is natural of course but then I am conscious the symptoms I have are not very visible to most. I was diagnosed in November 2017 & doing quite well on my daily tablet of Rasagiline.
I am also conscious this blog may be read by family and friends which might conflict with the need to be honest and get things off my chest in the darker moments. If I take a protectionist stance that is & spare those close to me as much worry as I can – so this comes with a health warning for them.
Will this be a future record that my son will read? That’s more of an issue, as I want to be the biggest fighter , the most optimistic, the most fun loving father I can possibly be with PD, but I know I can’t and won’t be all the time. I will see how I go. As far as this blog goes, I will try and moderate as much as possible while staying honest and real.
After the initial telling people , where you invariably get a reaction of sympathy, people mostly just carry on as normal; especially when there is no outward reminder. This I realise (and hope) will carry on for sometime, as in the first few months / years, and with treatment, the PD should remain, for the most part, neutralised. My walk gives it away the most and people have started to comment about it, so I have realised I am probably going to have to be open about the Parkinson’s more than I had thought. I also realise this means I am going to need to go through a psychological adjustment, as I will start to lose my ‘normal’ outward appearance.
I don’t expect people to stay so concerned & worried at all but I wonder what they really think. It’s hard for family, friends, & colleagues to understand what this all means unless you can see it, or feel it, or research it. This must be a main reason for seeking out support groups which I don’t quite feel ready to do. I can see though it would help to share some of the burden by talking to people who really get it. Having this blog is enough therapy for me for now and knowing it is being viewed and liked is encouragement too; so please comment & share some thoughts!
The hardest bit for me with Young-Onset Parkinson’s Disease is the constant wondering what it will do to me. Will it progress really slowly or more rapidly, will it be mild or have a bigger impact, how will I need to adjust to it, in terms of work & daily life? It is a highly individualistic disease so I am trying to make the best decisions now in the absence of any personalised prognosis. Trying to ascertain this prognosis is still preoccupying most of my free ‘thinking’ time and having a personalised prognosis would be a huge step forward to be able to plan my future with this disease.
Take the case of work, for example. I have a fairly stressful job with a high level of responsibility and accountability. I have been diagnosed for approaching 4 months and nothing has really changed work wise. I am starting to feel the stress impacting more in the last week, so what should I do about it? I can consider reducing to 4 days per week, or perhaps just work from home more, or travel to London after rush hour. But in the end how long will this help, do I just up my medication, or is the underlying disease progression better served by changing job & reducing stress levels? At the moment I haven’t found the time to begin an exercise regime because of work, commuting, and family commitments on the weekend, so should I make a more substantial change to my work life? But if I had a prognosis that put this decision making in context, it would be helpful. I guess a personalised prognosis can only follow a known cause or triggers; I wonder whether stress was a large factor with my YOPD but that is another subject.
No or little tremor may indicate a different prognosis but there is little clarity in the medical research on this. Tremor would present more challenges to me right now so I am thankful for that. The rigidity I have is advancing & changing my gait and posture; that is probably the fastest change in my PD over the last year. I have probably answered my own questions then ……..no tremor isn’t no problem….better make those lifestyle changes and get to that gym 😀
Here’s to learning more about my YOPD as I go.