Searching for PSP treatment

[anis_attar]

Hi,

My father is suffering from PSP since last 2 years.Gone through Stem cell therapy, 3 months back,but no sign of improvements.Please suggest or share if any medicines recently launched or any hospitals or anywhere in India this disease can be cured?...

Also my dad is undergoing physiotherapy every day.

Current condition..choking while swallowing and neck rotation is big problem..

Please help me..

[Marie_14]

Anis

Sorry to hear this. There is no cure for this disease. It is progressive so will eventually lead to death. I have never heard of anyone having stem cell therapy for this. The problem in with a buildup of a protein called Tau in the brain. There are various trials going on but none have had success yet as far as I know.

At the moment there are medications which help with the various things he may suffer from but no cure!

If you post to this very good site people will suggest various things they have tried and which have worked. People here are very kind too. Sad that you have found us but you are very welcome.

Also the PSPA site is very good. Be aware that nobody suffers all the symptoms but he will certainly suffer some of them. Good luck to you and your family.

Marie x

[Dadshelper]

I am sorry to say but there is no cure for PSP. You may find some therapy or medicine to help manage the conditions for a while as they arise but your father will progress. I understand this is not what you want to hear but it's best to understand it and prepare for his needs as they manifest.

Ron

[sivas]

Hi Anis,

As others have mentioned below, there is no cure for the disease. My father who has PSP is located in India too . Please message me if you have any questions. Good luck.

Sue

[anis_attar in reply to sivas]

Thanks for your reply...can you please share your father details regarding conditions and treatment what you are following now a days...it will ne helpful for me as well...

[sivas]

Anis,

Please send me your email address so I can send you some information. My email address is [e-mail]

[anis_attar]

Thanks to All for your inputs...your inputs and suggestions are always welcome...I will not loose my confidence,I am trying to find a way...I can understand it...but I will keep on trying and searching about new technologies for PSP treatment...

Request all to share the inputs if you get something about PSP treatment..

[Dickwin]

Annis,

Where are you located? My wife, who has PSP, is in a Stage 2 clinical study with an experimental drug from BioGen. It is not meant to be a cure for PSP, but the hope is that it will slow the pace of the disease's progression. The drug is a monoclonal antibody that is designed to attach itself to excess tau, causing the excess tau to be flushed from the body. We are about 8 months in to the treatments, which are given monthly. In my wife's case, they are monitoring her performance of physical and neuorological tests which are administered to her during our monthly visits. They also are periodically performing MRIs to monitor progression in the brain. It is a blind study, so there is a 33.3 % chance that she is getting a placebo. Last month, we were told by the neurologist conducting the trial and the plan coordinator that they 'think' that my wife is receiving the drug, and not the placebo, and that it is showing signs of working. I am pretty much on the same page as the neurologist: I think it is working to some extent but I am so deep in the weeds, I sometimes have trouble being objective to the point of being suspect and dismissive of good news. But I have to say that she has not progressed significantly since treatments began and we are starting to get optimistic about her prospects. Anecdotally, I can tell you that each month, when she receives her treatment, she feels a lift for several hours. She walks without a shuffle, and her speech is clearer. I realize this might be a placebo effect, but given the nature of this disease, a little hope is not a bad thing.

I bring this up because I know that the Hospital we are receiving my wife's treatments at is looking for participants for the Phase 3 Study. And I know that there are hospitals in the US, Canada and the UK (not sure about Western Europe) that will also be looking for Stage 3 participants.

[anis_attar in reply to Dickwin]

Hi Dickwin Thanks for creating and sharing new Hope's....I am from India...please let me know if any point of contact in Bangalore India for the same treatment..

Thanks a lot again

[anis_attar]

Hi Dickwin,

Please let me know if any point of contact in Bangalore India or any place in India for the biogen treatment..

[findingcure]

Hello,

Sorry to hear about this. I can relate how you feel. My father has the same disease.

Like your dad, my father is also going daily physiotherapy.

My father is using red light therapy on the daily basis and drinking hydrogen water. I read some article about this helps to improve PSP condition. I can share all my information with you, if you are interested.