Earlier today, a newer patient member of one of my online groups, asked for the name of a man I mentioned in my book. I liken my short-term memory to that of a basket strainer. Much of what I hear read or see passes through with some things remaining. Even though I wrote the book, I often need to see and read what it is I need to remember – like the name of the man in question. It was easier for me to go the Cure PSP site and scour the personal stories than to remember where I had written in the book. In the time, it took me to find his name and post it to the group site I had already forgotten his name, which was Millard “what do you mean there is no cure” Bachman.
Again, I digressed and began to ramble on and found a way to stop myself. As I scrolled through the personal stories, I reminded myself who these people were before PSP claimed them. They were husbands, wives, mothers and fathers, grandparents, brothers and sisters. They were also aunts and uncles, cousins, in-laws, friends and neighbours. The point being; they were loved and held a special place in someone’s heart. They were the mighty PSP warriors who fought the battle, all the while clinging to the hope for a treatment and better yet – a cure and earned their wings doing so.
It is up to all of us now to carry the torch of hope. We – the patients who are able, caregivers, family and other loved ones, friends, the great organizations like Cure PSP and PSPA. We must work in whatever way we can towards raising awareness awareness that creates understanding, understanding that creates much needed support. The kind of support needed, that works towards research for a treatment-cure.
We all have something to contribute to the PSP, CBD and MSA cause. Mine has become the written word and viral challenges like the PSP Triple Crown. Shelby Locke aka Steve Dagnell – author and from proceeds through his book You, Me & PSP, Julia Warwickshire and Ann Raynor and others who manage online support groups. Verna Gill and her marathon of hope and to all the others who have and continue to find ways to make a difference. No effort is too small.