I am an advocate of my father who has PSP. I have been reading everything that I have found in relation to PSP. He has done a couple of clinical trials. One with CoQ10 and one with TPI-287. Neither seemed to have much effect, but as you know its hard to tell because he has good days and bad ones. They currently have him on Azilect and Amantadine and CoQ10. He is hanging in there. We are thinking about weaning him off those and trying lysine. I read an article about lysine at --> ted.earthclinic.com/cures/p...
Also I have also seen some positive reviews on Tumeric and Prevagen.
Any thoughts? Nice to meet you all. I am a firm believer the answer is out there somewhere and I am not going to quit. What are your thoughts folks, anybody considered alternative medicines? Anybody seen the Dallas Buyers club. The information is out there, we just need to find it.
Matt
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mattgo
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Greetings Matt, I'm sorry to hear about your father having to deal with PSP. my husband has been using C0q10for awhile; its just me giving him supplements. But your dad was in a trial! So you don't feel like its a remedy or even something that can slow it up a bit. I have heard of TPI-287....No luck there either eh? Does he continue to have the same dr's giving him supplements/drugs ? Will they monitor the Lysine as well? When was he diagnosed...and how long before that, did you notice his symptoms.
Right now the most promising thing for B who is still ambulatory with a walker and assistance, is the gym. We try it 3x a week and have just added swimming. He used to lift wts,. and swim daily. So getting back really lifts him up....gets his mood and his muscles in a better place than stuck in the LazyBoy!
Does your dad have much of a physical regimen?
Again I'm sorry to have to welcome you to this site, but I would be most interested in the things you do for your dad or that he does that seems to make a difference in the quality of his life, even if just for awhile.
Dad is going on about 3 years now. I was in the Navy when he first took a tumble so its hard to say if he was showing any signs earlier than that. The TPI-287 is tough to judge. He could have been on the placebo and they won't know until a little later. I will let you all know the outcome. Mom and Dad work out and he is still getting around okay. They are still enjoying life.
Lysine. That is something that I found on my own and I was curios if anyone else out there had heard of it.
Thank You, Matt for your prompt reply. Again , I am amazed at the response to this disorder from patient one to another. My husband was diagnosed in 2013, He was still able enough to build a porch in the summer and drive 1,000 miles to visit his dad and mom. By 2014 he was done driving, by 2015 he was done walking independently. It sounds like your dad is still where my husband was 2 years ago, though he was diagnosed three years ago! Maybe one of those drugs did have an affect ! If Lysine is just a supplement, maybe we will give that a try....B and your dad could compare notes!
Hi Matt, I'm sorry about your dad. He is blessed to have a son who cares so much.
My husband was diagnosed in 2010. Since then he has been given several drugs but if they did appear to make a difference, it was only for a short while. In all cases, there were side effects, making him sleep more, hallucinate, agitated etc. Now he is only on medication for excessive saliva. He also has colitis and an enlarged prostrate so is on medication for those and they work. I tried other things at the beginning, including coconut oil ( remember that long timers?) but when you see diagrams of what is happening to a PSP brain only something very special can sort that out and I think eventually it will be prevention rather than a cure that will help. I hope something will be found to halt the deterioration and to reverse it but having read results of drug trials, I think they will come too late for my husband.
Now I concentrate on making what time he has left as good as possible. We go out as much as we can, I invite folk to the house and talk in the room he is in. He doesn't speak but will do thumbs up and down in answer to questions. I do what I can to stimulate his brain. Family members and friends come to stay. Life is as normal as possible. As AVB has said I also think excersise is probably one of the best things to help keep mobility. C cannot stand or walk alone and I can no longer hold him upright but when his carers or our sons are here, we walk him round the ground floor of our house. He has one of those big rubber bands and excersises his legs himself whilst sitting. I don't know if you live with him. If not, when you go to see him, talk about things that will make him laugh, make him think, make him glad to be alive. Please don't concentrate too much on his illness. He has enough time to think about that himself. When C could speak he said he was fed up with everyone asking how he was and looking glum as if he was on his last legs. He wanted to be cheered up not reminded he was going to die of his illness. All our friends and family know that now and there is a lot of laughter in our house, with or without visitors ( a few tears as well of course).
If you do try other drugs, please note down any adverse changes. You won't want to make him suffer side effects taking something that may not help the PSP.
I will be interested in anything you may find that does help though.
Wow ... your story fits my wife to a T. Also diagnosed in 2010 (well, actually 2010 she was dx with Parkinson's, and then 2011 with PSP). We tried the Daveuntide clinical trial with no success. We also tried Stem Cell Therapy, also no success. Been on lots of different PD drugs that provide very little improvement. Right now, she is on a high dose regimen of Salsalate, a type of NSAID. She takes 1500mg in the AM and 750mg in the PM. Her former movement disorder specialist, Dr Litvan, who moved to San Diego, CA, is about to start a trial using this. So I had her family doctor prescribe this ahead of time. After about 4 months, I really haven't seen a difference. But again, this is such a progressive disease, you never know if it did slow things down. But I also feel she may be too far down the path with this disease to allow anything to improve or cure her. She aspirating more, even though the only thing I give her is thickened water. Everything else goes into her PEG feeding tube, which she has now had for 1 entire year. The PEG truly saved her life, or at least extended for this past year. At times I wonder if I should try anything else, or is this just making things worse. She kind a acts like she's in a coma, although everything now and then she'll try to speak to a level that we can hear her, and it just thrills my soul. And sometimes she will laugh, which also gives me goosebumps.
I know our days are definitely numbered, so we're trying to make each one count. I've planned a beach vacation for the end of the month, including our son and his family, and my wife's mom. I'm sure this will be our last one. After having a rough night last night, I'm hoping she can even make it until then.
I do hope you can make the holiday. We went away 3 times last year but I think last September was our last. I needed a week to get over it. Of course I never got it. We now have day trips out.
C doesn't have a PEG yet. It takes me an hour to give him each meal which I liquidize and add sauce or gravy to make it quite soft. He does cough while eating sometimes but has a strong cough still so manages to clear his throat. He loves his food and will clear his plate even though I sometimes think I have given him too much. He has indicated with thumbs down that he doesn't want a PEG yet. We know it's best to have it fitted while he is well but we will wait a bit longer.
It is amazing when they suddenly do something unexpected isn't it. C will come out with the odd word and it thrills me as well. The other day a friend asked me where the next festival was where one of our sons was going to play with his band. I couldn't remember the name and very clearly the previously silent Colin said the name of the town. It shocked us both.
I hope you have a good day after a peaceful night.
Beautifully said, NannaB. So important to remember they are STILL here and maybe long after WE leave!!!!God only knows that...all we can do is be prepared....
I'm glad you and your husband have a communication system. B still talks but I can usually only understand it on the 2d sometimes third try!
B has not taken many drugs mostly that which is for Parkinsons,,,,not much help. We dropped it.
I agree,, for our generation with PSP, a sure fire drug is will be too late.
But muscle stimulation is probably more the answer than anything. The dr's really need to aim at how to stimulate a muscle so that the brain recognizes it's value? I don't know how to say but I told Heady its muscle dementia. They have forgotten how to use the muscle to get the job done....it doesnt atrophy, it just does not recognize how to do it.Executive Functioning how to solve the problem of getting a fork to the mouth......how to get words out
oh I am rambling and tired so I will go again that was a great post!
That's a good way of putting it, muscle dementia. When I'm trying to get Colin dressed his arms are very stiff but if I say put your arm up, he can raise it, not far but further than if I physically try to move it. Weird!
I'm tired now, it's nearly midnight so I'm off to bed.
Goodnight and I hope you both have a good weekend.
Are u saying that the TPI-287 in large doses did not work. We are set up to be in a study for this in Birmingham, Al this coming Oct. I would really like to know the side effects. They are giving it in injections. What doses are you giving the supplements/drugs to your loved one? We have the CQ-10 and have taken it in smaller doses.
I don't know what doses sorry. My parents did the trial in Birmingham as well. They are great there, I can ask my mother is you need any more information. There is a courtyard right next to the hospital so that was very convenient.
About the trial itself I don't know too much. He is coming down this next week for his follow-up where they tell him if he was on the placebo or not and how well he did etc.
Hi Matt, it's been 8 years, not sure if you are still on here or not. Is your father still alive? I just came across this meta analysis study on all the proven natural supplements and therapies for tauopathies like PSP. It just came out 3/31/23! sciencedirect.com/science/a.... My father has PSP and I've been researching like crazy.
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