PSP specialists

[Kelly55]

Hey all, hope everyone is okay and not dreading another Monday ! Just thought I'd post to say that I managed to get mum a referral to see one of the PSP neurologists in the UK, we saw Dr Rowe based in Cambridge but there are several. Just wanted to say I recommend nagging for a referral to see one if possible, although we were there three hours and mum had to give blood and do cognitive tests etc (more for research than mums benefit I think) when we did get to speak albeit briefly to the professor it proved very interesting. He asked mum what he could do for her and sadly she said 'make me normal' which he said he was unable to do but did recommend a few med changes and OT referral and also mum is going back to see urologist, respiratory specialist and cardiologist ! So worth a try I think ! List of research centres in latest PSPA magazine x

[Hidden]

Thanks for this I also got the same literature!

I am really impressed that you got to see Dr Rowe. I am wondering what med changes he suggested? My lovely Mum is on sinemet and clonazepam. She has recently tried baclofen but it didn't suit her...

Did Dr Rowe suggest anything else that we might be able to try?

Many thanks

Martina

[Kelly55 in reply to Hidden]

Hi Martina, to be honest my mum has a host of other ailments as well as PSP so is currently on a high number of tablets. Mum hasn't tried any of the drugs you mentioned so I'm unable to comment on those but mum is on 600mg (6 tablets) of co-benoldopa a day to help with muscle stiffness and he suggested Stalevo 150 as same effect but less tablets. Also said chest referrals etc to help with cattarh and swallowing issues. He said atropine, hyoscine and mucolytics all not ideal meds but didn't offer an alternative unfortunately. I think a lot of PSP is managing the symptoms as best as possible but I do recommend trying to get a referral if you can. we live about hour away from Cambridge in different county so that shouldn't be an issue.

We've tried several different methods and meds so can try and help with any other suggestions, or if you have a Parkinson's nurse they should be able to help with medicinal tweaks.

Best wishes to you all x

[sammy90210 in reply to Kelly55]

I came across this the other day - I will ask his neurologist today... hindawi.com/journals/crim/2...

[Silverguy888]

I read the same article last year and I've been giving my mom Zolpidem. It has allowed her to enjoy eating solid foods again and muscle stiffness is less noticeable and it improved her ability to speak clearer. Look into an an depressant as it will help her mood as well as reduce the mucus buildup

[sammy90210 in reply to Silverguy888]

Thanks my dad's neuro said there is anecdotal evidence of zolpidem working in some cases e.g. stroke or something else that caused vegetative state so he would like to give it a shot in 2 weeks maybe

[Kelly55]

I'm going to ask mums GP / Neuro about this med too! Sounds interesting and at least seems to offer slightly more relief than other meds .. if nothing else it might help her sleep as the last month or so she's back up to 4/5/6 awakenings a night !