I had experimental surgery 6 years ago for Parkinson's. The surgery implanted retinal cells into my brain with the hope that they would continue making dopamine as they normally do. (Spheramine or STEPS trial).

Your question was one of my first before I had the surgery. What if I get better enough to override my disability? I was an elementary princnipal, and you don't just walk into those jobs; you work your way up. And what about my insurance? I am on Medicare (for disability) and kept my school insurance as supplemental. If I lost my disability, I would also lose my insurance.

Well, I DID get better, but not enough to go back to work. I was advancing pretty rapidly before the surgery. After 6 years I have not progressed, and in fact have improved. Shortly after my 3rd anniversary with the surgery, I received a questionnaire from Social Security. One of the questions was "Are you better than when you filed for disability?" and like an idiot, I told the truth.

I was "better," but still had PD - and have on/off's, dyskinesia, cognitive problems, and balance issues. That "yes" was all it took; I got a letter from my SS friends asking for a full review for disability. I was devastated!
It took a lot of work and documentation, but I made the criteria for "disabled" again.

I went through and specifically named "how it was" versus "how it is" and compared my symptoms before and after. And I didn't have to lie (but I sometimes think I should have on that dumb ole questionnaire!). Here are some examples given on the review:
1. Before
Cannot get up during the night by myself

After
Able to go to the bathroom at night but sometimes need walker and am very slow and rigid

2. Before
Cannot turn in bed

After
Can turn in bed, but not without great effort and slowness

It did the trick!

So have your DBS, but you still will not be cured; you will just have an improved quality of life. And if you want to work, Social Security has a program where you can try working but only for limited hours without giving up your pension.

Best to you, Mike!
Peggy