My mother is suffering with PSP: Hi guys , I... - PSP Association

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My mother is suffering with PSP

prashantbpc profile image
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Hi guys ,

I am from India live in small town my mother is suffering with PSP Since Last 4 years, she is taking treatment (Mumbai Dr. Mohit Bhatt Kokola ben Dheerubhai ambanee Hospital )as her doctor prescribed her, dopamine is her main drug,but now these days she is very depressed about her problem,

any one can tell about new drugs used for this and approval of any drug in future.

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prashantbpc
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8 Replies
easterncedar profile image
easterncedar

Dear prashantbpc, I'm sorry about your mother. There are currently no medicines in general use for psp, although neurologists will often try the various drugs prescribed for parkinson's disease. Sometimes, for some people, there is a temporary benefit from one of those. There are often bad side effects from long-term use of these. People on this site are also experimenting for themselves with dietary supplements. The most commonly used of these is CoQ10. An early study in Germany indicated that there was benefit from this, but a recently concluded more long-term trial here in the US offered no statistically significant proof that it helps. Nonetheless, that is what my guy is taking, and he seems to be holding his ground pretty well. Exercise is the most important element, I believe. There have been some discussion on this site of depression and treatment for it. I recommend you look for those posts as well as those about medications. Anything posted by Strelley will be of value to you.

Good luck, Easterncedar

SWISS_MISS profile image
SWISS_MISS in reply to easterncedar

Hello Easterncedar

What dosage does your husband take. Where do you see the improvement.

Thanks swiss miss

easterncedar profile image
easterncedar in reply to SWISS_MISS

He takes 1200 mgs of Coq10 a day. He has declined in walking and speaking and memory over the past three years, but just not as rapidly as might be expected. Whether he simply has a slow progressing disease - so far - or whether the CoQ10 is helping is impossible to say. I wish I could be more definite.

jimandsharynp profile image
jimandsharynp

Dopamine has long range effects that are very undesirable so be careful. Google "dopamine meds long range effects". If the drug isn't working you should consider stopping it. There are drugs for depression so talk to your medical professionals. PSP is not a one-size-fits-all disease so what works for one patient may not work for another. Jimbo

shasha profile image
shasha

ALSO TRY TURMERIC I TAKE ABOuT 1500 MGS A Day and i certainly notice the difference when i forget it

ultramodern profile image
ultramodern

Namaste, Prasant. First off I am absolutely amazed that someone in India , your Mum, has been diagnosed with PSP four years back . I am very sorry to hear that.

As Jimbo has said there is NO CURE for PSP ...as yet. And the Neurologist at Ambanee Hospital who is prescribing a medication for someone with Parkinsons is doing more harm than good to your poor Mother. Stop now!

PSP is not caused by the same problem as Parkinsons, therefore using dopamine isn't going to help.

Put simply PSP is caused by the TAU protein going haywire.

Maybe Aurevedic Medicine has the answer...because the big worlwide pharmaceutical companies have not yet managed to come up with something.

Prasant, stay tuned to this forum...the collective community of PSP sufferes and carers is raedy to help

you and your Mum.

best b

nidhikadam profile image
nidhikadam in reply to ultramodern

Even today Dr. Mohit Bhatt (who's Head of Neuroscience department in Kokilaben Hospital) and his team gives dopamine to PSP patients ..

Shrey76 profile image
Shrey76 in reply to ultramodern

Any ayurvedic references u suggest

So as per you, across the world Levodopa Is not helping psp patients?

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