A number of people have asked me what PSP is or isn’t, and I have about as much information as anyone else with Google and Gen AI.
I just watched this video made by Cure PSP about a lovely Canadian family, and in particular the husband/father/grandfather Pierre and his wife Jocelyne. Pierre was initially diagnosed with Parkinson’s but was later re-diagnosed with PSP. According to his obituary, Pierre stopped working in 2014 as a company sales and leasing representative for computer companies and sadly passed away in October 2016.
This video, which must therefore have been made about a year before he passed, is probably the simplest and most human explanation I have seen, as it shows the journey of a patient not too different from the path I seem to be taking (albeit when he was filmed, he was further along). As I have said to myself and to anyone listening, I intend to stay strong and fight the disease I have (whatever name it is ever confirmed to have). Nonetheless, this video is the first real story I have actually seen on the topic and as a result, is that much more meaningful.
It is important to watch if you are involved with PSP or one of its related neurodegenerative diseases.
Like so many cases I have heard, on autopsy he was actually found to have Corticobasal Degeneration (CBD), another atypical Parkinson’s cousin similar to PSP (and covered by the same charity Cure PSP). Exact diagnosis in this field is clearly a major challenge for all patients.
As many of you know, there are so many unknowns about PSP and its related diseases. I am trying my best in the window of time I have to do my bit to raise awareness and have launched a campaign in Israel which I would truly appreciate your help towards raising funds to do my bit for patient support and the start of a clinical trial registry. Please help:
..https://www.jgive.com/new/en/usd/donation-targets/149088
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