medication

[Starwarsthe]

I woul like to know what medication is helpful to combat psp

Thank you

Glen

[Bergenser]

There are no miracle drugs, but you may find it useful to review available advice about managing symptoms with or without medication.

James Rowe, a leading expert in the UK, has written this article pn.bmj.com/content/21/5/376

CurePSP have published this summary article

doi.org/10.3389%2Ffneur.202...

Both are reliable and you can share with your doctors if needed - so many doctors rarely come across PSP patients.

Hope & hugs 🌻🫂

[Cinephile]

Hi Glen, agree with Bergenser - there are no treatments as such for PSP - my husband has been prescribed medications to ease his symptoms. He finds Hylo ointment and drops help to keep his eyes moisturised due to reduced blinking, he takes Atropine drops (off label) to dry excess saliva (very effective). Therapies such as exercises used for patients with neuro-degenerative conditions are very helpful to preserve as much mobility, strength and flexibility as possible for as long as possible and to help with falls prevention/management and speech and language therapy can help to preserve speech (though my husband’s experience has been a bit mixed) and speech and language therapists have also suggested alternative communication methods and monitor swallow regularly. He has tried Sertraline (mood), Amantidine (fatigue) and Mirtazipine (sleep issues) - all three made him very drowsy and therefore increased his risk of falls so he stopped taking them. He also tried Co-Enzyme Q 10 (paid for privately) for a few months - which made no difference to his condition at all and is very expensive in the doses recommended. I wish you all the very best.

[Starwarsthe in reply to Cinephile]

Thank you for your reply u sound like a very caring spouse I wish I had more help but I’m on my own so u take care of u as well

Glen

[timbowPSP in reply to Starwarsthe]

Glen ...... Just to say I have e very caring partner, to help me. AS I get worse she wil be needed big time, but then the older it hits you the slower it seems to develop. So you and I may be more fortunate!

Suggest you get yourself a partner, unless ur med system is much beter than here , and look into all sorts of avenues of care options.

Speed of worsening is very variable with individuals.

More later when yu ask! Timbow

[timbowPSP]

Hi Star wars, in Canada .... BC or ?? I was married in Vic and now have kids in Lwr Mainland in their 40's!

You have PSP?? How long for and how severe, etc?

I am 82 and have it past 6 yrs. They know a bit more about it now, but there is still no medication!

I have 7 page journal/log of personal findings/ advice needing some revision. If you like a copy pls send ur email address, and I will send soon as I have it ready.

For now , very best wishes TimbowPSP

[Starwarsthe in reply to timbowPSP]

Hi Tim bow l live in Hamilton Ontario is just on the outskirts do Toronto

In 73 yrs young I have two children from my fist mariage my son e is 42and he married and l have a granddaughter and she is 15 yrs old. My son doesn’t speak to me and he has convinced my daughter not to speak to me as well they are stil mad at me for leaving their mom and she had passed away 3-4 yrs ago so I am hoping the come over sorties son ok Timbow I will chat to soon

Glen