In the meeting where he told us I had what appeared to be PSP, he made it very clear I had to put the brakes on working. It is happening as we speak but it was in stark contrast to previous discussions when work was advocated. The strong instruction from the Neurologist who I know and hugely appreciate is that I must rest, reduce stress to a minimum and in his words which I suppose are very open to interpretation “Spend time with your family”. He was clear that this is probably my biggest way to hold off the effects (and every study I have ever seen backs it up).
So a few weeks in and I feel a very significant positive impact. I am healthier, my symptoms are reduced and my episodes induced by rising stress are far less frequent – I have simply put myself into situations where extremes are triggered. I had one exception when I had one very stressful work call which got through the net and it truly transformed me, perhaps because it was so exceptional now and I choked, managed to avoid a truly serious incident and I let it be a lesson.
All good you would think….it is clear and it works.
Of course I still have a fundamental balance issue (when I stand perfectly still I naturally with no assistance fall straight back and the pump seems to have no impact), I struggle at times of the day usually towards the end of the day, strong heat etc to walk without shuffling, still need the cane pretty much all of the time, and my Vertical Eye Palsy is still there. So PSP or whatever it is on the remote possibility it is some form of aggressive PS is still there but there is no question that it has got better since putting the brakes on.
The other part of me however kicks in…guilt….
I should be working after all I am relatively speaking much better
I shouldn’t be enjoying myself after all people are praying for my health
I should do more because…..x….y….z…..
I took two days out of the country to take a quick trip to Dubai with my daughter to spend some quality time with her and it was simply great. We were really careful – we ordered a wheelchair from the airline but in the end I made it with her help and the stick although Dubai airport on the way back was not easy for me and I felt very unstable…but we made it and we relaxed. Unlike previous trips we simply did virtually nothing and I used the spa and when she shopped I sat in the coffee shop…it was such an important time for me and her.
Interestingly after a treatment at the spa – they told me I had the stiffest muscles they’ve ever seen – I guess that says something from an objective source.
Yet here I am a day after and I feel guilty. It defies logic I know – I have a terminal illness which truly no one wants, have been ordered to put the brakes on work, have stopped driving and face in the relative short term a truly horrific period and all I am doing is taking steps to delay as demanded by the medical experts it as there is no treatment…and I still feel guilty.
This is my internal battle and I guess it exists for many people in the same situation who have been workaholics for a long period and are forced to take early retirement due to health.
It is an adjustment, one I know I must make but it doesn’t free me from feeling bad and guilty when objectively by all measures I should be happy I have made some positive steps.
I have to constantly focus on fighting this urge and also accept the positive times I am having as the flip side from the truly horrific scenario I and my family are in.
Ending on a funny note with two funny stories
Firstly, my daughter in her time with freedom to use my credit card bought me an aftershave called ‘Al Sheikh’ which I think is amusing given my PD background as it is pronounced ‘Al Shake’.
Secondly, due to my previous life of constant travel we were upgraded on the way there which made the journey much easier. On the way back for some strange reason she was upgraded. Of course my thinking was to reject the upgrade or steal it from her…she had other ideas. Luckily after a lot of excellent effort on the airline’s part they found me a seat too so we ended up flying back together.
