I have gained much strength from all your shares. A few times I have shared, but only in bits and pieces. I think it's time to formally post.
This is my story. This is my son's story... written from my perspective. I am a 76 year old mom and CARETAKER for my 55 year old son, the most wonderful of sons. Don't all moms think that of their children. We both live in Los Angeles, in the San Fernando Valley. My son is kind. He is considerate. My son graduated from UCLA in Music. My son holds a Law Degree from UC Berkley/Boalt Hall/ passed the Bar. My son passed the Calif CPA exam. My son holds a full secondary math credential, and taught math for 10 years. My son has never been married (came close several times) or had children. My son quotes Duke Ellington, "Music is a jealous mistress." My son LOVES music and for 11 years was totally self supporting as a free lance bass player. 2006 he took up the "day job" of teaching so that he could maintain his night job, his love, of playing his bass. He played BIG concerts, nightclubs, restaurants, outdoors at the Marina, etc. 2010, he purchased a home 10 minutes from my house.
March of 2014, after a BIG gig, I called him to ask how it went. He responded with a slurred speech and said well, but he had woken up with DOUBLE VISION and SLURRED SPEECH. That entire year Kaiser Permanente ran tests, finally deciding that my son had a psychiatric condition, and also fitting him with prism glasses . January of 2015, his Kaiser neurologist referred him for a consult to Sunset Kaiser. January of 2015 he was given a new DX of Parkinson's (PD). My son rejected that DX and paid out of pocket to UCLA where he was told they could not confirm a DX of PD. Because of his skepticism he agreed for Kaiser to give him a Datscan. We never saw the Datscan until January of 2017, but we were told that it confirmed Parkinsonism, but it appeared to be ATYPICAL. From 2015 to 2017 he did all that was suggested for PD. He daily exercised, he took sinemet, he took all the supplements that were recommended by the main PD sites, he went to support groups. His symptoms only got worst. 2016 he was put on Disability retirement from his math teaching position.
His eyes continued to worsen, and new symptoms appeared. He was having difficulty swallowing, he was drooling, he could not walk without a walker, not to mention his first bout with pneumonia November of 2016 . January 2017 he was again referred to Sunset Kaiser, to another neurologist. He was shown his Datscan on the computer, and told he had PSP. Suddenly everything made sense. Where we had been distraught over his PD DX, we now wished if he had to have a neurological condition we preferred PD.
My son is currently on Kaiser Palliative Home Care. He had his 2nd bout of aspiration pneumonia March, 2017. During that bout he failed the swallowing test several times. He lost much weight, now only 126 pounds, 5'10" tall. He opted for a feeding tube (PEG). He has round the clock 24 hour assistance. I stay with him Friday afternoon to Sunday evening. A paid male caretaker comes in Sunday evening until Friday afternoon. My son has no long term care insurance and is using his savings. He does not qualify for medicaid. He is fed thro his PEG every two hours. He is not allowed to take anything thorough his mouth. He has been assured that aspiration pneumonia will revisit him....through his own saliva.
My son says he has no regrets of the choices he has made in his life. He has loved his life (up to late 2016), the road all his choices have led, but like Dudley Moore questions how such a horrible disease could visit him.
This is my son.....................