9th year of psp

[AndreEmelianoff]

Hi Folks,

I have been reading everyone's posts for quite a while and have never added anything till now. My husband, who turned 77 today and was an active concert cellist and teacher until 2012, began acting strangely in the summer of 2010. He has always had executive functioning issues, but he was having trouble getting through filling out a check, paying bills, and getting to rehearsals and classes on time. At the time he had no physical symptoms. After 4 neurologists telling us he had Parkinson's, various different dementias, and that we were crazy not to have him on Sinemet, we began a trial of the drug. Within two days he was hallucinating and making no sense. I took him off the drug. 3 more neurologists later, confirmed by an eye tracking test, and the hummingbird MRI, he was correctly diagnosed with PSP. We have found excellent results in slowing the disease and easing symptoms with: Exelon Patch (Rivastigmine), Mucuna Pruriens (plant based l-dopa) and Amino Acid therapy. At 9 years, he can no longer walk or stand on his own, and his cognition is up and down. He loves to eat, has no swallowing issues and no personality changes. He is still a clever wordsmith with a quirky sense of humor, and continues to make interesting connections between the sounds of words, often by passing their meaning. He sleeps most of the day and when he does, he is "in his career" and happy. When he wakes up, he often asks for his cello and wants to know how he is getting to the concert until he realizes he was dreaming. The distance between his "best" and his "worst" in a given day can be vast, but he has way more good days than bad. On a bad day he doesn't open his eyes, doesn't answer questions, is resistant to help, and just wants to sleep. On a good day he is involved in conversation, follows current events, and even if he can't think of simple words, comes up with very colorful and complicated ways of making his point. I guess my point is that PSP presents differently for everyone and maybe what has helped my husband could help someone else. We are very fortunate to have purchased Long Term Care insurance 8 years ago, which, at the rate we are using, it will run out in 4 years. I also am fortunate to have 3 wonderful and supportive siblings, one of whom helps me take care of my husband and my 92 year old mother who lives with me.

[SewBears]

Hi Andre,

Thank you for sharing your experiences. I will look into the suggested medications that you mentioned. It seems like a lot is trial and error. It’s like, hurry up and then wait forever to see if it’s working or not. More times than not it’s back to the drawing board. Like you, we have good days and not so good days. I cherish the good ones! I just wanted to let you know that I appreciate your post.

Thank you,

Hugs from I SewBears

[enjoysalud]

Hi, I appreciate this post. It's encouraging.

My son died of PSP at the age of barely 55 years. He had a BA in Music from UCLA, LLD from UCBerekley (Boalt), passed both the Bar and the CPA exam in California. The love of his life was playing the bass....he was a freelance bass player. He also acquired a secondary math credential to support his night gigs, and taught math days.

HIs first symptoms of DOUBLE VISION and SLURRED SPEECH and DEEP FATIGUE appeared all together on March of 2014 (after a HUGE R&B concert). He was DX with Parkinson's. Jan of 2017 he was re-dx with PSP. He was doing fairly well (lived by himself for three years), until he got hit with aspiration pneumonia. His 2nd bout put him in the hospital and required a PEG (he could NOT pass the swallowing test).

I agree that PSP seems to have different strains or maybe the host has different immune systems. We too used the zandopa (mucuna) and he did better on it than on the sinemet, but we acquiesced to the Neuro's frowns.

You are indeed VERY VERY fortunate to have LTC.

Margarita, Los Angeles, CA, USA

[ncgardener799]

HI Andrea, I am wondering if you could provide more insight regarding the amino acid therapy. What product are you using and how much etc. Also Is the Mucana a prescription item? I live in US so not sure of availability. Its been 3 1/2 years and still no confirmed diagnosis for my husband, but possibility of PSP has been mentioned. We are so frustrated with the inability to confirm a diagnosis.

[AndreEmelianoff in reply to ncgardener799]

The doctor we were consulting with, who educated us about this protocol passed away last year at the age of 89. We now work with one of his students, Chad Oler who has all of our records. He has a number of videos on youtube about his practice and you can call him at ‭[phone]‬ or email him at [e-mail]. The products are standardized and we order them through him. No Rx needed but you would need to have him run tests and and advise you on how to use them. It isn't covered by insurance.

Best of luck.

[AndreEmelianoff in reply to ncgardener799]

I should have mentioned that we are also in New Jersey (US) and Dr. Oler is in Madison Wisconsin. You can look him up online.

[ncgardener799 in reply to AndreEmelianoff]

Good morning Andrea, We are in NC, moved here from NJ 20 years ago. I am wondering if there is a Dr with those skills here. I have heard the term functional medicine practitioner and maybe that is what I should look into for my husband. What type of Dr diagnosed you husband initially? We are still working on having a diagnosis. So many tests!!! We went to Duke Medical Center here in NC which is an amazing facility, as well as a neurologist and a movement disorder neurologist here in NC. Still no confirmed answers. Some Drs have suggested we travel to Mayo Clinic in Rochester Minnesota or JOhn's Hopkins in Baltimore Maryland.

[AndreEmelianoff in reply to ncgardener799]

We had a young neurologist do the eye tracking test and noticed that Andre didn't track below midline, which can be an early indicator of PSP. This lead him to suggest an MRI which revealed the atrophy in the mid-brain indicating a more sure PSP diagnosis. The Dr. had learned about this in recent med school experience and hadn't yet seen it in one of his patients, so he was excited to diagnose it. We weren't as excited when we found out there is no "cure", but it confirmed my suspicions that it wasn't Parkinson's and that we were right not to have him on Sinemet. We haven't been back to him because he had nothing at all to offer, just a correct diagnosis.

[ncgardener799 in reply to AndreEmelianoff]

Thanks for your reply and for posting your story. I have not posted until now on this site. My husband has several eye issues including severe light sensitivity and he had the eye tracking evaluation by a neurological opthamalogist and so far tracking not a problem, MRI inconclusive also . He was on sinimet for 3 months several years ago with no improvement so it was discontinued. He now takes Ritalin to help with fatigue and medication to help with sleep. This has been a roller coaster of emotions and dead ends. We know what he doesn't have but not what he does have.

[AndreEmelianoff in reply to ncgardener799]

We have had the most success with the Exelon patch. In fact if we miss a day by accident he is suddenly in very bad shape, physically and cognitively.