Focused Ultrasound for Freezing of Gait

[ZOOM4522]

Currently, the only Parkinson's symptom that. Is preventing me from leading a normal life is gait freezing. I read somewhere recently that treatment of dyskinesia using focused ultrasound has been approved by the FDA. Does this mean that Focused Ultrasound can be used to eliminate gait freezing?Thanks To All. Who Reply,,

Tom

[pdpatient]

Ironically, I have heard of PwP's who have developed this problem after the procedure. Confusing. I will let others chime in.

[MBAnderson]

Tom, I wouldn't count on it.

I've had bilateral FUS PTT (pallidothalamic tractotomy) and freezing is my worst physical problem.

[nednedned in reply to MBAnderson]

MBAnderson did you develop freezing before or after the fus ptt?

[MBAnderson in reply to nednedned]

well after

[pdpatient in reply to MBAnderson]

Marc, what happens when you freeze. Can you describe it? Mine happens mostly in the bathroom.

[MBAnderson in reply to pdpatient]

Whenever I stop moving, I have trouble getting started. Often, it takes 15 -30 seconds to get started again Pretty embarrassing when in public. It's actually gait initiation.

[Bunny622023 in reply to MBAnderson]

That's identical to my husband. His walking is fine, when he stops it's getting going again. Gait ignition/initiation. Then fall. Sometimes right in the middle of the road if something grabs his attention crossing..... then I become a school zebra crossing lady with all arms flailing STOP !!!!

[Biblelover in reply to MBAnderson]

LSVT big addresses that. Big loud movements.

[lenamm]

Freezing is one symptom focused ultrasound doesn't help at all. Some folks have more issues after.

[eschneid]

Lena,

Can you elaborate a little about others having more issues after PTT-FUS?

Fnedorez70 told us about his unwanted symptoms after side two of the PTT clinical in NY. What else have you heard and would you still travel to Switzerland with Dr. Gallay & team, thanks.

Eric

[lenamm in reply to eschneid]

I am five years out from side one and 3.5 years out side two. It hit my voice after side two but that is my only side effect (my voice is quieter and sometimes my speech slurs slightly) but I am 100% satisfied with both surgeries.I would do it again in a heartbeat! I was housebound , couldn't work, walk, or drive because of severe dystonia and dyskinesia. I have a full live now! I started seeing improvements half way through the surgery and emerged from the machine a new person with both surgeries. I know balance and freezing are conditions that exclude you from surgery in Switzerland. I've heard of those getting worse in a few people post surgery.

[eschneid in reply to lenamm]

Lena,

Thanks so much for details. I've read some of it on the fb site you started for fus. Really glad when one of us finds relief.

Eric

[Allypally49]

I can only suggest seeing a physiotherapist that specialises in parkinsons people to help with the thought process in freezing.

[Bunny622023 in reply to Allypally49]

Good answer Allypally49 but for some, even when the help is excellent and works in the physio appointments, it's getting the pwp to remember to action when out in the real world. Getting habits to form is also not easy and then on top of that any cognitive issues with memory makes it difficult. For some.

[Allypally49 in reply to Bunny622023]

So true, as everyone is different.I read where it says, your brain isn't telling your legs to walk, so you have to speak (tell) your brain to tell your legs to walk.

I observe no FOG ,( Freezing Of Gait) when WWP uses exercise bike.

[Bunny622023 in reply to Allypally49]

I've read that - I totally agree. So your wife gets no freezing of gait when she uses the exercise bike. But she wouldn't surely? Sitting on a bike is not the same as walking along and freezing. Or being stopped and then frozen to get moving again. Cycling is quite different from everything I read and I think it's why my husband has been so fit for so long.

[Rupa88 in reply to Bunny622023]

I think he meant that cycling gas helped tge wife to improve FOG

[Bunny622023 in reply to Rupa88]

Whoops - of course... that was rather stupid of me.. 🐰😄

[Allypally49 in reply to Bunny622023]

But,surely its the same message path that tells your legs to move, perhaps its because its different muscles its telling?

[Bunny622023 in reply to Allypally49]

I don't really know. I only know that my husband can go cycling for hours and then walk normally but as soon as he stops and puts his feet down and gets off the bike, he starts having the balance issue OR gait ignition issue to start walking, and often will fall. It's a very complex thing it seems and doesn't happen all the time. Depends how tired he is also.

[Allypally49 in reply to Bunny622023]

It's so frustrating to see that happening

[Allypally49 in reply to Bunny622023]

My WWP saw the parkinsons physiotherapist last, week, who was very good.

My WWP slowly walked a large room space without aid and without support but knowing the physiotherapist was there behind her, if needed, yet can't manage that at home nor outside.

So, I know she can do it but as the physiotherapist says holding on is the easiest way out.

[kaypeeoh]

I saw a video where someone with PD is frozen in place but when someone slaps him on the back he instantly starts running.