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Topic DBS Go to previous topic Go to next topic Go to higher level

By Caroline On 2017.05.31 20:54
My husband went through this procedure in the spring. I was wondering if anyone had any thoughts or comments on the programming of the stimulator. We are a bit frustrated. Thank you.

By pinki53 On 2017.06.01 22:04
Sorry I can't help. This procedure was never recommended for my husband.

By LOHENGR1N On 2017.06.01 23:26
I've never had it so I don't know too much about the programming of it either.

By lurkingforacure On 2017.06.02 14:29
We haven't had this, and it was never recommended to us either, but I think there is a DBS group on yahoo (or used to be) that probably has answers to a lot of your questions.

If not, there might be something on the Fox Foundation website or similar that could help.

By Checkmate On 2017.06.02 19:36
Carolina, my husband had the DBS surgery two years ago. The programming can take many months to get the maximum benefit. My husband had problems with his balance and had many falls before they got the programming righ
t. It took about eight months. At one point he decreased his meds from 16 each day to five, however because he was falling they had to decrease the voltage and increase the meds again. Overall his days improved and he had less off times. Fast forward two years he now has to get new programming done as the decease progresses. Hold on in there it is a trial and error time until they find the maximum benefit for each patient.

By nanajoan On 2017.06.05 00:31
My husband had DBS in 2012 and it took about a year to optimize the calibration and, yes, it was frustrating. However, the benefits have been worth it. He was able to reduce medication while improving tremor control and rigidity. He has had PD long enough, though, that he has other serious symptoms such as drooling, night terrors, freezing, cognitive issues, apathy, etc. that DBS does not help.

By pinki53 On 2017.06.05 10:36
nanajoan,
I've wondered if it's worth it just for helping the tremors and rigidity.
My DH's tremors have stopped - I guess meds are controlling those. But the rigidity is really bad. Sometimes it's hard to get his knees to bend to get into the van.
He also has the drooling (altho this is helped by botox injections in saliva glands) night terrors, freezing (this is the worst!) cognitive issues (no maybe this is the worst), apathy, etc. etc. etc. etc.
People that don't live with this every day have no idea how hard it is, do they? My family and friends sympathize with me but they really don't know.


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