PSP Association
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And now we have Botox

Yesterday we saw our neurologist for regular quarterly visit. She asked if she could film C walking in her office and did so on her phone and sent video to Professor friend at university in central Turkey who is researching movement disorders associated with Parkinson's. he replied instantly and said C could benefit from botox for dystonia in left arm and foot and we could get this at Izmir University hospital which we can get to in a day - a long day but doable. I am cynical about botox having read so much about how short-lived the effects can be but am currently trying to get an appointment with Prof. in Izmir for next week. However, the teaching hospital in Izmir is right next door to IKEA so if the botox works, even temporarily, and I get to shop and eat in IKEA it will definitely be a win-win situation. Watch this space.

And I was very impressed by efficient use of phone technology.

4 Replies

Ooooooh, ikea meatballs and dime cake!!!!



Yes, DenB, IKEA is definitely the attraction here - botox is a side issue!


Yes, I've heard that botox has to be redone every three months or so. Most common Botox for PSP I've heard of is for the eyes and neck. Never read about it for arms, legs, etc. etc. I'd do some research on the internet to see if others have used it and at what results. Jimbo


I agree Jimbo but have read about it being used for hands which are permanently clenched. We now have an appointment for next Tuesday and will go and give it a try. I am very cynical but it is still being trialled here, and as C is losing mobility rapidly due to dystonic left foot, it's worth a try. Involves an 8-hour drive for me on a day with bad weather forecast, not looking forward to that. But will post on here when we've been so you'll know what, if any, changes take place.


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