I have always written my blog largely in the past tense where I report back on events that have occurred and how I have dealt with them. This time based on a whatsapp I had with someone last night going through a similar but yet very different experience I felt I had to write about the present. It is a new but familiar journey and I am reporting LIVE and in many ways speaking to myself. It is also a message to many others living through periods of fear albeit I am in no ways a professional in this realm.
Despite living through a war and things in general being incredibly tough on all of us, three and a half months ago, I wrote the most positive article to date on my PD journey – Just half a tablet – feels great! And it did feel great medically. A few weeks prior, after a bad spell I had changed my prescription and felt a huge surge of improvement. Since I wrote this article on 31/5 it has been something of a golden period – dare I say it – I got a little over confident. Yes – I probably overdid it with travel (US*2, Europe *3), work and I even tried a new sport (Paddle Ball). I also had some very special family time during this period both here and with my wife’s family and all my kids in France. War and tragedy were still there, PD was still there and I had weak days, but all was great from the aspect of PD.
Last week – the brakes slammed seemingly out of nowhere…coming home from a school event for my daughter I reached out to put the keys in the front door and I froze. For those who don’t know what this feels like to me, it means I can hear what my wife was saying – sort of – but I just can’t get my body to move – literally frozen in space and time like a statue. What was probably seconds but felt like minutes eventually ended, and I came back.
From that moment on, I have been freezing a number of times, my balance is off (and the walking cane/stick is faithfully back by my side) and my walking has deteriorated so that often it is back, at times, to shuffle speed (when you can’t walk properly and your feet drag along the surface).
Weirdly I have also developed a sometimes near constant need to hum – yes hum – which has really annoyed me and my kids. It is now a little more under control although as I write I am humming 🙂 I don’t know if this is connected although Dr Google seems to think there is some linkage but that is not the place I go to for medical advice.
I am a glass half full person and yet, it has smacked me incredibly hard – it is genuinely depressing and I don’t use the word lightly.
The reason I am writing this live is that I am in the middle of it and after my own brief ‘wallow’ period I am starting to get my bearings and re-assert myself over this disease.
My friends and family have also helped massively. Three examples.
A friend who is going through treatment for a different illness (I pray for them to have a full recovery) chatted with me and called me ‘inspiring’ for how I have dealt with PD so far. I can dispute this many, many ways, BUT it was probably a miracle I reached out to her because she helped me realize that I have to pick myself up from the precipice of depression and re-engage in the fight.
A second person, a dear friend, urged me to fight back and stay ‘brave, dogged and determined’. I initially resisted and said words to the effect that ‘it won’t get better – the clue is in the description of the disease – “degenerative”‘ but after a couple of days of this I have realized he is right and I am trying to pull myself back to some sort of process.
Other friends who I am very grateful gave me excellent advice and really listened to me and I listened (a little anyway).
At this point, I want to report (to myself) on the steps I have taken to re-engage the enemy and try to assert myself over this disease.
- I emailed my wonderful neurologist – although we meet for our next check up in a month we exchanged emails. We debated last time we met whether to add half a pill to the 4 times a day I take Sinamet (Levadopa – my main drug) or because I am sleeping so little to raise it to 5 doses of the 1.5 drug. We decided to stick to 4. Two days ago we agreed to move to 5 times and it seems to be helping me – at this very early stage.
- I have forced myself to continue with my exercise, yoga, diet regime etc but with a change. I can’t run outside or unaided at the moment (maybe I can but I don’t feel I can) but I am walking inside with Nordic ski poles – it is safer and means I don’t allow a let up in the daily workout. In terms of food – on which I have maintained a healthy diet during my battle – I considered binginig on chocolate something I’ve not touched for 4 years and a snickers bar never looked so good. I held back…but just…
- I have tried to be sensible and honest with myself and others…I am a control freak by nature and I won’t ever be totally sensible and let others tell me what to do, but I am listening a little – not taking risks. I didn’t go to event X, meeting Y in person – I am (semi) pacing myself which is new for me. I was open in the last couple of days with my boss and we are taking some steps to reduce stress at work – although I want and need to work because it is how I am wired and I will still work, probably for more than 11 hours a day but maybe not 12 -(and I came down from 16 a couple of year back)
- I am telling myself – through this blog as well – that Attitude is everything and going back to basics. I wrote some months ago a model for how new patients may want to think about dealing with their PD – ASSERTS2 – the first thing was Attitude.
Regarding Attitude, I looked at what I wrote in the model when I wrote it a long time ago. I said:
“•A glass half full (as positive as possible) but realistic attitude is the key – it is not easy, it requires transition and stamina and there will be ups and downs but you are not alone and there are ways of coping with it
•Life will change – each in a different way – but finding the way to cope with change is critical – putting your head in the sand won’t help long term”
Reporting live I can say it is true…this is genuinely the fight of my life and I can feel that if I let it get to me I will lose everything (I have really seen in the last few days PD for the dangerous and life threatening disease it is). I must must double down and adapt to the changes but fight hard to beat it.
Many people experience moments of acute difficulty – it could be health, finances, family sorrow, or tragedy (as a number of people in my region are facing up close and personally). I am experiencing a moment which is by many standards minor but which to me is full of terrifying fear. I am a person of faith and I believe that I have in me the tools to deal with the situation – I just have to find them.
I hope that by the next time I write, I will have seen the Professor, maybe adjusted the drugs further and report that things are going well. I pray at least that I have not given into PD….I must fight on. As I said this is a message to me and those who may have similar moments. I hope I listen!
I’d appreciate comments – although I will probably not listen to suggestions due to my control freakery so apologies in advance.
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