“I wish my late husband had had the wherewithal to relay his experience of PSP in such rich detail. I can tell you, he was the unconditionally respected center of our family until the end. He never lost his mental faculties, but the physical barriers stole his ability to communicate verbally. There was always love and gratitude in his eyes. Especially when our children were present. I can not speak for him on the matter of dignity, but he never lost it in our eyes. Keep writing it all down. It is the best gift you could give your loved ones and to the PSP community. I hate that you, or anyone, have to experience this.”
This is a comment I received, one of a significant number, to thank me for writing my thoughts and blog.
It is hard to write so publically but it is therapeutic for me, keeps people informed and more importantly tries to give people in similar situations some perspective and hopefully hope about the way forwards.
I never expected it to turn into what appears to probably be PSP and such a difficuly trajectory but even in this situation I am finding hope and optimism, and a whole variety of crazy moments so I will continue for as long as I am able.
On Saturday morning, a friend gave me a book written by an ALS patient who despite their condition continued using his eyes to communicate, write and paint and live a happy albeit physically challenged life. Firstly this gesture of kindness from this person to give it to me and on bogger scale the fact the ALS sufferer was able to do this gives me hope (who would have thought this would have been hope – but there we are :–))
I am aware that a number of people find these posts hard to read – not just because of the volume but because of the occasional less than positive message and for that I apologize. I know for them this makes it hard but honestly I believe it is better to talk honestly and openly than hide these feelings and I hope you understand my need and objectives and forgive me for this slightly less than totally selfless behavior.
I have decided – against the advice of some – that I am. going to try to advocate for PSP here at home and abroad. Awareness is really important in a disease that offers such hardship to its patients and care givers, is often diagnosed late, seemingly flies under the radar of many in the reesearch and medical community and which comes with significant emotional baggage.
I can’t hide how I feel and I think as awkward as it is that people should see this side of what is very much life. As I said in a post last night, I am strangely feeling blessed at the amazing support in the big and little things from people who are showing a way to care in so so many ways, from the prayers for me and from the faxt that I have had such a wonderful life experience to date even taking account of all the negatives.
