Progressive Supranuclear Palsy (PSP) Vers... - Cure Parkinson's
Progressive Supranuclear Palsy (PSP) Versus Parkinson's Disease
I am VERY familiar with PSP. My son at 55 years old died of PSP. I have written about him on this site. His first symptoms, March 2014, were double vision, slurred speech, and deep fatigue. We live(d) in Los Angeles, CA, USA, and Kaiser Permanente was my son's health insurance. The first year they did a million tests (I wrote a post PARKINSON'S TO PSP). He was DX with Parkinson's, that's what the neuro called it, and told us he would have at least 20 years ahead. He kept getting worst, while it seemed others were stable. The ParkinSONISM is what should have been DX, but the "sonism" was left off. Perhaps it was best because we blithely and naively did not look past PD,
SiIvestrov, who use to do a number of postings on this site was God sent. I will always be indebted to him. He answered all my private queries, came up with research (always documented), and was ALWAYS quick to respond. God's hands and feet here on earth.
Dr Constani(sp?) has been approached by a person or two regarding using hcl thiamine. I believe in one of his answers he noted seeing some positive effects for CBD. I have wondered if I had been aware earlier if it would have helped my son.
January, 2017, my son was re-dx with PSP. BTW, there is a PSP site on HEALTHUNLOCKED. After a 2nd bout of aspiration pneumonia which put him in the hospital for 7-8 days, he died at home, May 4, 2017.
Like PD there is no test for PSP, but since 2014 I believe that Neuros are becoming more adept at seeing it....perhaps after 2-3 years of advancing symptoms. There are clinical trials by Biogen and AbbVie being done in this country to stop it's progress.
PSP is listed among 6 PRIME OF LIFE BRAIN DISEASES:PSP, CBD, MSA, FTD, ALS and CTE.
Sometimes I read the progression of symptoms and frustration expressed on this site, and I suspect that it is NOT PD but one of the Prime of Life Brain Diseases. As PSP progresses it is a horrible horrible brain disease. At least today I do not focus on the "nightmare" but more of the gift of my son up to 53 years of age.
Thank you for the post.......
You have my deepest condolences, in the loss of your son! Correct diagnosing of neuro-degenerative disease can be extremely difficult for neurologically trained health providers. There are so many aspects of symptoms and tests that could overlap into several diagnostic categories. I was having vague symptoms, for a number of years, that neurologists first suspected was demyelinating disease. That was changed, after MRI’s were coming into use, and the neurosurgeon thought I might have a brain tumour. After invasive angiography, an artery attached to the brain stem was found, causing my balance and cerebellar symptoms, so I was diagnosed with Ataxia. Going forward about 20 years, I had developed quite an essential tremor, on both sides, that masked a beginning resting tremor on my left hand side. Finally, after about 6 years of progressing symptoms, such as muscle stiffness/pains, along with the tremors, cogwheel rigidity, several bad falls, due to freezing episodes, facial numbness, different taste and smell sensations, etc. and no other diagnosis, my daughter had me go to a regional center in a city ( we were living in a small town). There the internist, after checking signs, symptoms, and history, referred me to a movement disorders specialist, and he said that he thought I had Parkinson’s. This was confirmed after more testing etc. and a defining trial run of Sinemet, by the neurologist. So, my path has been a long one, over many years, just to show you how challenging diagnostics can sometimes be. It’s most unfortunate when PSP, or MSA, or ALS, and a couple other diseases become the final diagnosis, and the patient and family have to face even more mental and physical strains and/ or challenges. This severely affects family and patient dynamics. I’ve come to the conclusion thst, because of the complexity of the brain and understanding, that it is still an inexact science, and, as some physician’s state, completely knowing what a patient may have been dealing with, can’t be determined until after death, and a biopsy is performed. Sorry for the long rant here, but my experience, along with others, who have had diagnoses changed, over a period of time, uniquely challenges patients and their families, to seek medical researchers to reach out and explore the mysteries of the brain, it’s diseases, and their diagnostics further. Thanks again for sharing your very moving story of your son, and the impact of diagnostics and PSP. Actually, Parkinson’s and Parkinsonism, consists of several diseases, as you found out, so your story would be very helpful for some reading this forum, seeking explanations, and trying to understand what’s happening, when their lives are touched by PD, and/or Parkinsonism, or Parkinson Plus diseases, such as PSP and MSA.
Yes, I am very aware of the inexact science of DX brain diseases. MS seems to be further along in this aspect. MY LAMENT was that UNTIL several years have gone by to see the progress/direction, the diagnosis (DX) should be ParkinSONISM.
Thank you for your condolences.
There is a drug trial for PSP going on right now. I will have to search my emails for the info.
There are several trials going on right now. I think the two promising are the Biogen and the AbbVie trials.
the Abbvie was the one I just read about.
Write in CLINICAL TRIAL INFORMATION on the "search healthunlocked" bar. It is a post written by Katras. She is in a AbbVie trial. If you scroll down to "DonnaSue" share you can read about DonnaSue's husband experience.
thanks
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