I am impatient and impulsive – it is me… I move quickly and I am stubborn as hell. I am not going to change now.
It seems from the messages that we have received that I have given some people the impression that I am at the door of the World to Come.
I can categorically say that I don’t believe that this is the case. I am in for a long, long fight if G-d permits.
I can’t deny that I have an awful likely diagnosis on top of the already pretty rough one I had before. For that reason, we have asked for your prayers and thoughts. It is also true that I am completely driven now to help those who have PSP and PD in the hopefully very many years I have left. To have meaning in life and to do what I believe is something positive I have to be open. To the extent that this causes upset I ask forgiveness but it simply isn’t possible to hide. It is what it is.
PSP is a very dangerous disease and there is so much support missing. I received a probable diagnosis of a highly dangerous terminal condition and there is simply no support in place for the caregivers or the patients, and that is not right. It is not the fault of the doctors or the medical practitioners, but it is unnecessary suffering for people. I want to do what I can to change that, and time is against me – hence the speed at which I am moving.
But please rest assured, I am truly in for the fight and for hopefully many a year. I am also working my day job 🙂
So no more morbid talk – we will deal with the challenges ahead as they come, and I will be up front about the true nature of PSP as I learn more, but it is with a positive mindset and frame of view.
I am conscious that this blog is not easy reading for some people, and for that, I apologize, and yes sometimes I share too much for some people’s liking. However, there is work to be done, and I believe I can help make a difference. I want to do what I can – especially for the caregivers of the future, including my family.
One Response
Thoughts are with you, and also concern for myself as I know I have some symptoms atypical of PD, and have had a few weird balance issues similar to something you described in one of your posts. I will mention these when I next see my consultant.
I would like at some future moment to discuss with you some thoughts I have about the impact of stress and emotion on PD, and fear these stresses can wreak damage on the condition. I have wondered if PD can be triggered in the first place by stress and hurt. Certainly in the last year or so, daily emotional blows have worn me down, and I am experiencing a noticeable deterioration/change in my ability to carry on in a well-functioning way. We share angst over the war, and I wonder how other PD people with the same stresses are faring with the progression of the illness. Or maybe it would just happen anyway because of time marching on.
Meanwhile, I follow your posts with interest, admiration, and concern.