I’ve been feeling blah… apathetic, bundled with a heaping share of pain and stiffness over the last few days. I sit here in my chair with my laptop in my man cave I call the cottage in small rural town Ontario, Canada… my little corner in a great big world. My mind never seems to rest as I try to conceive ways to raise awareness and financial support for rare brain disease PSP, CBD and MSA. These diseases have no treatment or cure with a terminal prognosis and affect people around the world.
I don’t have the means, the media connections and networks to let the world know… hey–we’re here, don’t forget about us. We count too. It doesn’t mean I don’t try… I wrote a book (the only book written from a patient’s perspective) with plans for additional volumes inviting readers to join me and share my journey with PSP, advocating and giving voice to others and their loved ones on the same journey. Donated proceeds from book sales go directly back to the PSP cause–Cure PSP and the PSPA. When I can, I paint–Painting for PSP… again proceeds to PSP.
I have come up a three-part YouTube video (The PSP Triple Crown) challenge as fundraiser and awareness campaign with the hopes of it going viral. I don’t expect everyone to participate, but I do want them to know what PSP is. The Ice Bucket Challenge for ALS, which is in the same family of Parkinsonism as PSP, CBD and MSA, was hugely successful. At the very least, I hoped it would be widely shared on social media. It takes nothing to click on the Share Button. From the beginning of September 2018 to date, the video has received 819 views. Some might say this is sour grapes… nah, but the lemon and lime in the Pucker Up for PSP portion of the challenge sure were.
One of the many casualties of PSP is my personality/demeanour. Empathy has been replaced with apathy… loss of interest or, as I have referred to in my book DGAD–don’t give a damn. Admittedly, it gets the best of me some days… today might be one of them.