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Evamar Asked September 2022

Running out of options. Any advice on Deep Brain Stimulation treatment?

My husband with PD was hoping to get Deep Brain Stimulations.
Well, it is not going to happen as there are different conditions.
Other options are considered.
The best is patch as it seems to simulate DBS, it is not available in Canada, but in USA, not ruling out going to US .
Any experience or knowledge of this treatment and effectiveness?

NYDaughterInLaw Sep 2022
How old is your husband?

Is he on levodopa?

Who is recommending the patch?

Does he do physical therapy?

Midkid58 Sep 2022
Just last week I spoke at length with a woman whose husband had had DBS done about 11 years ago here in the US. She said, for him, it was a game changer. That, plus the right meds, have given him 11+ years of much better health that would have been expected otherwise.

He is beginning to now experience some returning of the 'old' symptoms, but she said that they are slow and right now, only she notices them.

He is in his late 70's, early 80's, I'd guess, and only very recently began using a cane to help his balance. The man is brilliant and only knowing him for a year, I have been amazed at what he is still able to do. His wife attributes it to the DBS treatment.

I know it's not for every one and every 'type' of Parkinson's--but for HIM, it was a godsend.

Kind of broke my heart b/c my own daddy died from PD and nothing like this was ever discussed with him.

In this particular field, I think the US has the lead, so to speak. And I am sure it's fantastically expensive...but I wish you the best. Parkinson's is awful.

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MJ1929 Sep 2022
I wish had any information for you.

Your situation reminds me of a time I was visiting Scottsdale, Arizona and shared an elevator with a Canadian gentleman who was getting cancer treatment at the Mayo Clinic next door.

He was paying more than $30,000 out of pocket for the treatment. I asked him why, and he said his doctor told him that the proton treatment was still 10 years away in Canada.

"I don't want to die," he told me plainly.

That just broke my heart.

I wish you and your husband the best.

Evamar Sep 2022
Thank you.

SnoopyLove Sep 2022
Bumping up.

Evamar, I sure hope someone else has some experience of info to share.

Best wishes to you and your husband.

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