Medication

[Hotshots81]

Can anyone give me advice please? I have been diagnosed PSP, and been prescribed Sinemet but it doesn't agree with me. The side effects are not good. I am having a review of my medication on 14th January. It would be great to have some suggestions. Thanks.

[David750]

Hi Hotshots81, I am so sorry to learn you have been diagnosed with PSP. I am not qualified to advise on medications, but from experience listening to others there are no medications for PSP. However there are other conditions often associated with it and they may respond to medications. Professional advice from a Movement Neurologisy should be saught. If your current medication is having adverse side effects it perhaps should be discontinued, not suddenly but gradually under medical supervision.

[Hotshots81 in reply to David750]

Thanks for your reply,it has helped me.

[timbowPSP in reply to David750]

Hiya.

Best meds for PSP are please Keep Positive ..... positive, interacting, and taking charge of ur own direction in life. I am male, 83, diag 6-7 yrs, ago and still chugging on but increasingly slowly. THis also includes Diet (Med veg mainly), Supplements, plenty Exercise, Treatments (incl Homeopathy), and more recently a Vielight headset (Google?). .... Must cost a few grand p.a., but keeps me from rapid deterioration.

My neurologist, whether overworked, lazy? or other, said NO MEDICATION INDICATED, incl NOT Levadopa. There's different types of PSP - 10 or so variations - I seem to be on the slowest, which gives time to sort my Will, last wishes, and all that stuff..... and look forward to my final 'Last Adventure' in life.

All best wishes to my fellow travellers. Timbow

[Prius1]

when my wife was diagnosed with PSP the medication she was put on is co-careldopa, and baclofen , your neurologist consultant should be advising you what is the best medication for you, hope this helps

[Hotshots81 in reply to Prius1]

Thanks for your message, it has helped me.

[timbowPSP in reply to Prius1]

Hiya.

Best meds for PSP are please Keep Positive ..... positive, interacting, and taking charge of ur own direction in life. I am male, 83, diag 6-7 yrs, ago and still chugging on but increasingly slowly. THis also includes Diet (Med veg mainly), Supplements, plenty Exercise, Treatments (incl Homeopathy), and more recently a Vielight headset (Google?). .... Must cost a few grand p.a., but keeps me from rapid deterioration.

My neurologist, whether overworked, lazy? or other, said NO MEDICATION INDICATED, incl NOT Levadopa. There's different types of PSP - 10 or so variations - I seem to be on the slowest, which gives time to sort my Will, last wishes, and all that stuff..... and look forward to my final 'Last Adventure' in life.

All best wishes to my fellow travellers. Timbow

[Bergenser]

Dear Hotshots81

I'm sorry to hear you have PSP. Sinemet is routinely prescribed initially - both because a few PSP patients find it beneficial - but also because a lack of response conclusively rules out Parkinson's disease.

So it is quite expected that you will come off Sinemet quite quickly if it doesn't help you.

While there is no effective treatment for PSP, there are other medical and non-medical interventions that can help with the symptoms - it depends what symptoms you find most troublesome. I would recommend you read (parts of) CurePSP's summary article and James Rowe's article on PSP, they are both aimed at medical professionals but bring together the current best practices in working with PSP patients.

In your case I would ask for Amantadine - it may have side effects but is usually tolerated in PSP - it can improve movement and energy.

If you struggle with mood swings and/or sudden crying / uncontrollable laughter (pseudo bulbar affect) you could get a mild antidepressant like Citalopram.

You may prefer to avoid medication - though I would suggest these can make it possible to live "as normal as possible" for longer.

I wish you all the best. 🌻🤗

[Hotshots81 in reply to Bergenser]

Your response is so appreciated, I can't thank you enough!

[Diggerandsam]

Hi, I don’t know what your medication was prescribed to treat specifically but I’m on co-beneldopa which helps the stiffness and I’m finding it ok. May not be what you’re looking for but thought I’d mention it

[Hotshots81 in reply to Diggerandsam]

Thanks very much for that.

[timbowPSP in reply to Diggerandsam]

Hiya.

Best meds for PSP are please Keep Positive ..... positive, interacting, and taking charge of ur own direction in life. I am male, 83, diag 6-7 yrs, ago and still chugging on but increasingly slowly. THis also includes Diet (Med veg mainly), Supplements, plenty Exercise, Treatments (incl Homeopathy), and more recently a Vielight headset (Google?). .... Must cost a few grand p.a., but keeps me from rapid deterioration.

My neurologist, whether overworked, lazy? or other, said NO MEDICATION INDICATED, incl NOT Levadopa. There's different types of PSP - 10 or so variations - I seem to be on the slowest, which gives time to sort my Will, last wishes, and all that stuff..... and look forward to my final 'Last Adventure' in life.

All best wishes to my fellow travellers. Timbow

[timbowPSP]

Welcome to this 'happy gang' of travellers ...... I am 83 with PSP for past 6 yrs. It is a degen neuro disease, so👍 NO known drugs to asssist!

But possible to ameliorate your condition and extend life by diet, exercise, supplements, etc. Wel! that's my belief - so i'm doing it!

"PSP = PLEASE STAY POSITIVE" AND MAKE THE MOST OF YOUR LIFE, in every way you can!

Want more suggestions? Pls ask! All best TimBOWPSP

[Hotshots81 in reply to timbowPSP]

Hi TimbowPSP. I'm trying to stay positive and I am going to the gym on a regular basis, but it's hard the unsteader I get. Any advice is welcome.

[Licquoricelover in reply to timbowPSP]

What diet and supplements do you take. My husband can barely stand up but can do some leg exercises in a seated position but gets very tired.

[timbowPSP in reply to Licquoricelover]

Hello dear LL.

This PSP is setting my memory back, and I forgt your husbands condition! ..... PSP? or other.

I am on many supps, reg exercise, mainly Mediterranean veg diet, homeopathy,and a positive mindset. Reckon ALL are important as a whole.

USED TO BE A THERAPIST, but now struggle to keep it together ..... so have to do whatever helps me to be positive and to suport others in small ways!

I can try send you 7-pagesA4 on what I hve found out, but need you personal email address to send to.

THank and best wishes TimbowPSP

[Ammi-11 in reply to timbowPSP]

Hello Tim,

So heartening to read your post- so much of positivity!

My mum is 75 years old, diagnosed with PSP in 2022 , and went downhill badly, she is completely bedridden, has PEG inserted 6 months ago , poor volume of speech. Do let me please what supplements you take !and if possible share your regimen- my e mail id is [e-mail]

Regards

God bless you

[timbowPSP in reply to Ammi-11]

Thank you Ammi!

I hope to send you my regime, etc, soon but I need ur personal email address, AS TOO MUCH FOR THIS FORMAT.

Best wishes Tim W.

[Licquoricelover in reply to timbowPSP]

Dear Tim

My husband has PSP diagnosed in 2020 but likely symptoms had started a few years before. He will be 75 in April. He has also endured a quadruple bypass heart surgery 22 yrs ago, type 2 diabetes and sleep apnoea. He takes Fish Oils 1000mg and Vitamin D. I was giving him triple magnesium but stopped as not sure if that was irritating his bowels but he is still quite loose so can’t have been them.

My email is [e-mail]

I cook all our food from scratch, lots of fresh fruit veg and a balance of red meat, fish and chicken, porridge for breakfast and whole meal bread.

Thank you

[timbowPSP in reply to Licquoricelover]

Hello Lic Lover (and others), This PSP is a damn nuisance, and now I cant find all my records and PSP info to assist you and others! I hope my 7page info doc will xome up on this laptop, but no guarantee. Keep positive .... I hope to send you the blurb soon!

Best wishes all Tim Willcocks

[Sharsuk in reply to timbowPSP]

Dear Tim

I have your PSP info document and have just mailed it to you.

Sharsuk

[timbowPSP in reply to Sharsuk]

Thanks very much! Did you see that I cannot access my own copy at present?.....Dammit! Tim

[timbowPSP in reply to Licquoricelover]

Hiya.

Sory if this is 'old suggestions for you ......Best meds for PSP are please Keep Positive ..... positive, interacting, and taking charge of ur own direction in life. I am male, 83, diag 6-7 yrs, ago and still chugging on but increasingly slowly. THis also includes Diet (Med veg mainly), Supplements, plenty Exercise, Treatments (incl Homeopathy), and more recently a Vielight headset (Google?). .... Must cost a few grand p.a., but keeps me from rapid deterioration.

My neurologist, whether overworked, lazy? or other, said NO MEDICATION INDICATED, incl NOT Levadopa. There's different types of PSP - 10 or so variations - I seem to be on the slowest, which gives time to sort my Will, last wishes, and all that stuff..... and look forward to my final 'Last Adventure' in life.

All best wishes to my fellow travellers. Timbow