Sabine
Forum Replies Created
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Hello Thomas,
what is the daily dose you take?
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My husband had DBS surgery in February 2021. He is doing great. He describes the changes as “I feel like I woke up”.
Of course things are not like they were 20 years ago. But the improvement is significant. After his first programming the tremor was well controlled but he had issues with his gait. His neurologist made him a second program that does not control tremors as good but he can walk. He is now just switching back and forward between the what we call “clinical setting program” and the “walking program”.
Over time he adjust pretty good to the clinical setting program and can walk for hours without a problem. However, when we do a steep hike he uses his walking program. His posture is so much better and he enjoys doing woodwork and shooting arrows again.
He says he would do it all over again. Surgery was not a big deal for him. He had each of the three surgeries on a Monday, came home from the hospital on Tuesday and worked from home as a programmer Wed, Thu and Friday.
Programming is still continuing every two months to get as close to perfect as possible. .
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Mitch,
The first two weeks after programming my husband walked like a stork. I was worried that his DBS was not done correctly but after 2 weeks everything went back to almost normal. I guess the brain had to adjust to the stimulation.
Now, over a year later, he still goes every 4 months for more programming. The tremor in his left hand did not completely disappear and they still try to get it better. It seems that when the tremor goes away he has an issue with his leg or speech. Since he is right-handed it doesn’t bug him too much.
By now he has 3 programs, the first one they did, his special hiking program, and the one with the latest programming. He did not change his latest program anymore and did some strenuous hikes in our beautiful Colorado high country.
Next week we want to try hiking with his first program since we both notice that he leans more to the right after his last programming session. Maybe something that works for his hand is not so good for his pasture.
While DBS is not perfect, his quality of life is so much better. He only takes 1 to 2 Levodopa pills a day compared to 9 before DBS.
Best of luck to you
Sabine