PSP Association

Parkinson's to PSP

Parkinson's to PSP

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.....................

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Your post has brought back so many memories for me, my husband was initially diagnosed with PD and was trialled with medication for it which had no effect. I remember researching online and found a link to the PSP site, I read it and thought to myself there's no way he could be that unlucky to have such a rare disease and tried to push it to the back of my mind. But I kept going back to it as deep down I suspected that PSP was the cause of his symptoms, I remember Keith saying to me "You want me to have Parkinson's don't you?" and I remember thinking to myself "Please let it be that rather than PSP, the lesser evil of the two!"

I'm so sorry you and your son are having to suffer this awful illness, it's a tough road and my heart goes out to you.....

Love....Pat

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Thank you, Pat. I think you will be seeing more shares from me as the PSP progresses. I think my son has a very virulent PSP. I would rather lose him to death than see him suffer the insufferable. He has already signed a DNR form and told his MD when pneumonia revisits him he does not want to return to the hospital. We shall see what the future brings.

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Hi, your post bought tears to my eyes. It was bad nursing my husband through to the end of PSP but I don't know how I could have coped if it was my son. Reading his story, he has achieved so much in his life and you must be so proud of him. One of my sons is also a self employed bass player. This month I went to a CD launch, the first one I've been to as I was nursing my husband before. I was amazed at the pleasure the band was giving the hundreds of folk, dancing and singing along with them. Think how many thousands of people your son has given pleasure to.

When the neurologist told us C didn't have Parkinson's, we looked at each other with relief and smiled. Our smiles turned to tears when he described PSP which we had never heard of so I can understand your son's feelings about which condition he would rather it be.

Aspirational pneumonia is not inevitable although I understand, likely. I nursed my husband at home and had a suction machine to clear the saliva, a bit like the dentist does. He never had any aspirational pneumonia or chest infections during the 6 years I nursed him.

My thoughts and prayers are with you both and I thank you for telling us your son's story which must have been hard to write.

Best wishes

Nanna B

X

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Welcome to our group... sorry the circumstances weren't better. Thank you for sharing your son's story with us. As difficult as it is, sharing your experiences will be "therapeutic" for yourself. It will not change your son's PSP but know this much, this group is made up of the most dedicated, non-judgemental family caregivers... usually spouses and others with PSP who are still able to communicate. Read all the posts and comment or post as often you feel comfortable with... you are not alone on this journey.

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Thank you!

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What a sad sad story of this vicious illness affecting someone with so much promise, and lots more living to have enjoyed. He has the gift of such a dedicated parent as you have been, and still are, and I wish you both much comfort in the future. We are all desperately looking for a cure and must never lose hope - thank you for your beautiful picture, God bless you.

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Thank you! I plan to write one more posting on his death, but no time at present.

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So completely sad for you~

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My heart goes out to you. What an amazing son. "Too good for this earth " wishing you love and strength 💛🙏

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You were blessed to have such a talented and beautiful son., and he was blessed to have you as a mother. Peace be with you Margarita.

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I hadn't seen this pic and read the whole story before, Margarita. I realize it's now almost a year since your beautiful son passed away. He really did sound like a very special man. I'm glad jpc1335 brought this post back.

Hugs to you: May 4 will be hard. XXX

Anne G.

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Thank you raincitygirl. I was in the midst of writing a draft for a future post of my son's journey between his PSP DX and his death.....a short period of 4 months. It will also include my journey over this past year (following his death), a photo of me and my son (If I remember how I posted the other photo). When my son was ill I had little time to read the sharing. It has been since his death that I have read them carefully and have learned sooooo much about PSP. It's one thing to experience it and another to understand it for what it is........

My sister who lives in Austin, Texas, and my daughter who lives in Portland, Oregon, will be here with me between May 3-7th.

Today has been difficult, and yet I spent the afternoon with my Scrabble group. You would think their company made it easier. It was difficult before they arrived and after they left.

I have attended two grief groups. Kaiser health insurance offered an 8 week session which I attended, very close following his death, and and my church offered a 6 week session. They were both helpful, but in both sessions I was the only mom who had lost a child. Everyone else were mourning a parent or spouse. I was married only once, and have been legally divorced since 1974. My ex-husband died in 2002. I have lost both parents, being 77 years old. I was very close to my dad and was his caretaker, but the heartache is much much greater with my son. He lived close by. He was my companion for the theater (musical, opera, plays), my intellectual sparing partner. He easily made me laugh. I miss our laughter and his company. When he was well I use to call him "my Renaissance son". I remember vividly his birth. His father and I were far away from family (New Haven, Conn) but supported by fellow student friends.

My grief is unpredictable. It attacks me without any triggers or forewarning me. I do know the attacks come less frequently (not my constant companion) but when they come....much more acute.

Well enough, thank you for reaching out to me, and I give thanks to Jpc1335 (DonnaSue).

Margarita from Los Angeles, CA, USA......another gorgeous day.

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I understand Margarita, even though I haven't had the same experience. It is a unique tragedy to lose a child. And he sounded like such a very special one.

Hugs to you for May 4th and beyond... :-)

A.G.

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