Asking for your stories and help

[garucha]

Hi, I'm new here. Yesterday, after 2 years of searching, my 75-year-old mother was finally diagnosed. We are from Poland, where there is no other treatment apart from amantadine and levodopa. There are also no websites or support groups like yours. That's why I would like to ask if, apart from a physiotherapist, a speech therapist and these two medications, I can do something for her. What is the treatment like in England? Best regards, Marta

[Bergenser]

Dear Garucha, I'm sorry to hear that your mother has PSP. There is "no effective treatment or cure". The medicine and therapies you mentioned are very useful and there are many things that can be done to help the patient live well with this condition. I have recommended several time two articles.

One is James Rowe's article on diagnosis and management of PSP - while it's meant for doctors it's well written and helpful to patients and family also.

pn.bmj.com/content/21/5/376

The other is "Cure PSP's summary article. This is harder to read but has a systematic walkthrough of various symptoms and ways to manage them - with drugs or non-drug methods.

healthunlocked.com/psp/post...

I can only suggest you try to read these and/or share them with your doctors.

For lots of practical hints about specific topics, this forum has a lot of information that you can search e.g. aids for eating, drinking, moving etc.

Feel very free to ask questions that might seem silly - chances are that many of us have had similar experiences.

With hope and hugs 🌻 🤗

[garucha]

Thank for these articles Do you useTPS( transcranial pulse stimulation) in England?

[Bergenser in reply to garucha]

As far as I know, TPS is not offered / used here. I read a book by Dr Branko Lugovic “Hard Days: PSP - My journey” - I seem to recall he tried TPS without noticeable success. The best hope we have had was Atomoxetin (ADHD medication) which was mentioned in the summary article. We were able to try it for 6 months but it’s been difficult to get continued access to the drug. If there are clinical trials available it could be worthwhile signing up to get some hope. I wish you the best 🌻🫂

[garucha in reply to Bergenser]

What dose of atomoxetine and what dosage? was there any improvement?

[Bergenser in reply to garucha]

I’ll reply separately since it’s an ongoing clinical trial

pspassociation.org.uk/resea...

[timbowPSP]

Den dobre Garucha! I am 82 yrs, male with PSP diag 6 yrs ago. The diagnosis was horrible! So I have big sympathy for you and mother. For me it progresses slowly and I am still active and happy.(We are all different) Remember PSP means Please Stay Positive!

I am happy to send you my 6-page 'Update', all about my experiences of PSP with advice and info for newbies. But for this I need your email adddress please. My very best wishes to you both. TimbowPSP x

[garucha in reply to timbowPSP]

Thank you for your reply and willingness to share your story. I appreciate that you want to help me my email is [e-mail] I'm waiting for your message and I wish you a lot of strength and health!

[AnnaPoland in reply to timbowPSP]

Could I have it as well? [e-mail]

[timbowPSP in reply to AnnaPoland]

Probably so, if I can help. What dyou want?!

[PineEater]

Hi, garuchaSorry to learn that your mother has PSP. You have asked is there any medicine other than amantadine and levodopa. What about trihexylphenidyl (pacitane)? Can anyone suffering from PSP write about their own experiences with this medicine? Best wishes

[Bergenser in reply to PineEater]

Dear PineEater - I have been reading about trihexylphenidyl and though it is licenced for Parkinsonism, there are a lot of concerns in James Rowe's PSP article (which I quoted previously) about the use of anticholinergic agents with PSP, and that the unwanted effects could be serious. It is worth asking your medical professional to check, please be prepared the answer may be that it's unsuitable. 🌻

[PineEater in reply to Bergenser]

BergenserHi. Thanks for replying about trihexylphenidyl (artane). The studies done on this extremely cheap medicine, a type of anticholinergic are very few in PSP, scanty indeed. So, it is worthwhile trying this medicine, particularly in PSP for which there is unfortunately no cure yet and the disease progresses rapidly. Moreover, if a medicine doesn't work in some PSP patients, that doesn't mean that it will also not work in other PSP patients.

Has your husband ever used trihexylphenidyl? If yes, please let me know the results.

If others reading this have used this medicine, I request them to please let's know their results about this medicine.

Best wishes and regards to you and your husband

[Bergenser in reply to PineEater]

My husband hasn't tried this drug and his clinic doctors warn against giving anticholinergics of any kind to PSP patients - with the possible exception of patients with PSP-PGF (Progressive Gait Freezing) variant - because of "harmful effects".