PSP medication

Dear, My father recently diagnosed with PSP at age of 63. Condition becoming worst day by day. Muscle stiffness, eye moment, slow down. Only one treatment tablet. Syndopa ( Carbidopa+Levo dopa) 250 mg prescribed by neurologist.

Kindly suggest me further what to do for more betterment treatment.

Is any ayurvedic treatment will work ?



12 Replies

  • Hi Ghansham

    Firstly I'm very sorry to hear about your father

    Are you in the uk?

    If so, you need a neuro team with physios, speech therapists and continence nurses

    Do you have carers? Do you have chc funding?

    Do the district nurses visit regularly?

    Are you in touch with the Psp association?

    You've come to the right place, the people on here are wonderful and will support you and give you loads of excellent advice


  • Because this is a progressive disease, the things that are happening to your father are going to happen to your father. As of yet, there is no cure. The best thing is a medical care team such as a gp, neurologist, Physical therpaist occupational therapist, and a speech pathologist to help with his increasing needs. Go to CurePSP.prg or PSPA to find more information on the what and wherefores of PSP.

    Make sure house is rugs small tables, furntiure, pets. Set a path for dad to know where corners and walls and doorways are. Assist him with his walking if he needs it. I found that canes did not work for my husband; but a walker was very beneficial...he still fell but probably much less ! You are his greatest and your dad have rights to the best medical care...most likely that means the Dr.s will be listening to you so be attentive to your dads need s and help the doctors provide them by suggesting he needs this or that. Make sure your mom is taken care of. This is as devastating if not more for her as it is for your dad. Make sure she sleeps well, eats right and has something other than PSP to think about. Naturally that goes for you as well . Remember that your whole self must be addressed the physical, mental and spiritual. If you are praying folks then know God provide you with the strength to carry on....And if you scream and get mad at Him...He can take it! just remember not to stay angry at anything including Him too lose sight and ability of purpose....Let me leave you with some words that I find comforting from the Bible...Welcome sadly to this site remember We've been through it all; We are hear for you


    Be of good courage and He shall strengthen your heart, all ye that hope in the Lord.

    Psalm 31:24

    It is God that girdeth me with strength, and maketh my way perfect.

    Psalm 18:32

    For God hath not given us the spirit of fear; but of power, and of love, and of sound mind.

    IITimothy 1:7

  • Hello Ghansham . Sorry you have had to join this site but you will find it invaluable for information and support.

    The PSPA produce some very good literature which you can give to the GP if they don't seem to know very much about PSP. You will also find details of a support group in your area (assuming you are in UK ) There are also some little cards which are good as a very brief outline of the illness - useful to give to people who misinterpret the symptoms.

    Research the financial support and ensure that you get that support team around you.

    Best wishes.

  • Hi Ghansham. You might ask the neurologist if your dad could try Amantadine. I saw people on this site had mixed results with it. It has helped my dad who is now in a very advanced stage. Wishing you and your dad all the best.

  • Thank you Carlam, I will consult neurologist for the same. Is anything for muscle stiffness??

  • Amantadine improved my dad's cognition and speech. It also stopped his drooling. I always wonder if it would have helped his walking if he had taken it before he was wheelchair bound. At this point, it has not helped with muscle stiffness that I can detect.

  • My wife was on Amantadine for about six months. Sadly it did not do much for her. However her hair started falling out very badly. Spoke to the Neurolgist. He immediately took her the drug because her body was not responding positively to the drug. Sadly this one of the possible side effects. She has been off the drug for about 8 months and the hair has starting to grow again.

  • Muscle relaxants are often prescribed. While my guy was able to walk, they were prescribed in an attempt to make walking easier, but they essentially made him feel weaker, so we discontinued them, but now that he is in a wheelchair I will be looking at getting a new prescription for those days when his muscles appear to be locked up.

  • My wife's neurologist typically prescribes for her PSP patients: Sinemet 25-100mg (carbidopa-levaldopa), Amantadine 100mg, and Trihexyphenidyl 2mg (Artane). Sinemet has mixed results and the dosage usually has to be increased to remain effective. Amantadine supposedly makes the patient feel better. It's actually used for people fighting the flu, but has been used off-label for people with PSP. And Artane is supposed to help with the stiffness. As memory seemed to get worse, we tried both Namenda XR 28mg and Donepezil HCI 10mg.

    I'm not really sure if any of these ever did a bit of good for my wife. But I couldn't just stand there and not give her anything. I had read about different supplements that could help with PSP, so we tried them all: Niacin, Tumeric, Lysine.

    Best wishes to you!


  • hi Ghansham, there is a link on nih site that talks about panchakarma improving PSP at a study done in Delhi. We have started an Ayurveda course for my mom which includes panchakarma. This is in Kerala at the moment. We have been doing one year of all sorts of natural remedies, supplements and we believe it has helped slow down the progression quite a bit. I am also not sure if Parkinson's medication worsens PSP. We are on COQ10, turmeric, B12, ribo carnitine, lithium orotate, aswagandha ,shilajit. So far she has not reacted badly to any of this. And yes prayer is a big big part in all of this. keep the hope and dont stop fighting this !

  • I can not express this enough the communication will be come almost none if you dont learn sign language for make up your own for things like tv remote or a potty, something that you two will know what he is saying also you can make up little signs and stick them to popcicle sticks so he can hold them up for you when he wants something worked great for me at hospitals and stuff because no one but me most of the time can understand her

    hugs kryste

  • Yes, that's good advice, I think. Too late for my guy to learn a new way, but perhaps it could have extended his ability to get through.

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