My son, Jeff, died almost a year ago on May 4, 2017.
May 4th, 2017, fell on a Thursday. Today is Thursday.
He died at home of PSP (Progressive Supranuclear Palsy). He died just barely attaining his 55th birthday.
His first visible symptoms appeared March 2014. The two first symptoms were DOUBLE VISION and slurred speech. The slurred speech quickly disappeared. The Double Vision never went away....even with cataract surgery and prism glasses. He had a big R&B concert (Art Laboe) on that weekend. He was the bass player in the house band. The following morning he had woken up with the double vision and the slurred speech.
My son was a very kind and compassionate person. He was highly educated (UCLA music major, LLD Boalt Hall, UC Berkeley, passed both the California Bar and the CPA, held a secondary credential in math). His day job as a secondary math teacher allowed him the comforts of purchasing his own home, and accommodated his night job as a musician.
A Renaissance son.
I miss my son terribly.
I read on this site of participants who are actually receiving the gene therapy of the Abb-Vie and Biogen clinical trials. I am grateful for their sharing. It's encouraging. I am looking forward to formal feedback from the pharmaceutical companies. My son died shortly before I heard of those clinical studies.
My son was originally DX with Parkinson's (PD)...nearly a full year after his first symptoms appeared (January, 2015) , and a full three years before he was given the DX of PSP (January, 2017).
I did not start following the PSP support group here on Health Unlocked until four months BEFORE his death. Prior, I had been reading all I could on PD, including the postings here on Health Unlocked. .
This site is so outstanding in the informational sharing that it offers. I believe my son was hindered by MY lack of guidance this site provides. I urge everyone to read ALL the postings. Often the sharing goes off course from the title, and valuable information for the caretaker may be lost.
The Pixar movie, COCO, reminds me so much of my son's quest and determination to achieve professional status as a musician. It has become a favorite of mine.
My daughter (Portland, Oregon) and my sister (Austin, Texas) will be arriving this afternoon to keep me company....spending the weekend sharing stories of the son, brother, nephew sorely missed.
This photo of my son was taken at a New Year's gig before Jeff was taken ill. Happier times.
Blessings, Margarita from Los Angeles, CA, USA