For those of you who don't use Facebook...
Our eighth #GivingTuesday story comes from Tim Brown.
“I'm Tim Brown – Author of The PSP Chronicles Volumes I, II, III, a PSP patient, and global PSP-CBD advocate. My PSP journey began eight years ago, in the fall of 2013, when diagnosed with early-onset dementia at the age of fifty-seven. If that news was not devastating enough, in the summer of 2014, I received a further diagnosis of PSP – progressive supranuclear palsy. My wife Trish and I, well… mostly me, had an earworm named Parkinson's stuck in our heads. The neuropathologist said PSP, a disease in a group of Parkinsonism's, was a progressive disease. Our first Google search of PSP showed up as Play Station Four–hence the tagline; #PSP It's not a game. And no, it wasn't. So, we expanded our search to include progressive supranuclear palsy and landed on the Mayo Clinic's web page. Imagine our jaw-dropping surprise as we read and re-read about this neurodegenerative disease and its poor prognosis with no treatment or cure. The news was surreal. However, that did not stop my wife from further searching out information and support on the disease, which landed her on the CurePSP website. From that night on, CurePSP became the go-to source for all things PSP. The information folder she received has been an invaluable roadmap on a journey neither of us wanted to be on, but we're sure glad it was available. Additionally, there are online groups and forums filled with caregivers and patients who are willing to share their experiences and also provide a measure of support to others for the asking. I will never let PSP define me. That said, no two patients will experience PSP the same way. This does not minimize in any way the physical manifestations one may experience – ataxia, dystonia, axial rigidity, speech difficulty. My nemesis has and continues to be leg issues, and I work extremely hard to maintain the reduced measure of mobility I have with aids. The other side to the physicality issues and equally distressing are mental health concerns such as depression, mood swings, and other personality changes such as apathy. Take heart. Accelerated research, clinical trials, increased PSP-CBD awareness like my Ice Cream Challenge each year in May, are fighting the disease on all fronts and producing positive outcomes. My Faith and Hope… because it matters, tell me the first survivor of PSP-CBD is out there. 'Doing what I can–until I can't'.”
Tim
Add on to my previous post.
Mom with PSP in PA & helpful book
The struggle is over, the fight was difficult the warrior strong.
