I had two very different meetings on Friday which gave me a very significant jolt I think for the positive. Firstly our lawyer who is working on the Power of Attorney document came for the signing and I found the act of signing it so hard…it has to be done but I am not ready yet to cede control of my decisions and hope it is a long long way off.
The second meeting was an hour with one of the leading Professors in the field. It wasn’t a formal consultation but a discussion which I am very grateful for, however he assessed me fully. On examination he agreed with the diagnosis that my doctors have given (i.e. it ‘appears to be PSP’) – he agreed that fundamentally I have clear vertical eye palsy and a real balance issue – but was very positive about my cognitive state and condition at this stage and the way I am coping and he fully supported my decisions and actions re putting the brakes on work….so…..
I think it is time to come out of the zone I will now call my crisis window. I have made enormous changes to reduce stress and limit the changes of falling/choking etc, I have prepared for the likely arrival of the future storm that PSP will likely wreak and I have made sure my family is looked after in the event. I now need to get back to living in this adjusted reality.
I have decided to ask the groups set up for me to go walking in the mornings and to say prayers to go on hold. I still welcome the prayers and friends walking with me but I on a very deep and personal level need to feel like a person again and not a patient.
PSP hasn’t changed and I have all the fears for the near future but my brief trip to Dubai with my daughter showed me that if I take precautions and plan ahead and not do too much I can still enjoy life and give meaning to what I do.
So…to all the people who have walked with me, prayed for me and in other ways helped me out in the last few months I say thanks from the bottom of my heart. Still pray please if you can as I still have one of the worst diseases known (probably and if not then a pretty bad form of PD), and I’d love to walk with you as a friend…I think we can just stop the sense of crisis that I know I created (and for good reason).
I intend to fight this new battle having made huge changes but nonetheless in the spirit of positivity and as a person and not as a patient – for now at least and hopefully for a long time.
