To anyone out there who has had DBS Surgery

[Mike's Mate]

My husband had DBS Surgery in February 2008. He has had 3 "programming" sessions and so far has seen little improvement. His PD is complicated by neuropathy and almost constant pain. We have tried many different things to relieve all of the above including TENS for pain, Anodine for neuropathy and of course medications. He does not have much of the trembling, but is increasingly having trouble walking and has been falling a lot. He was diagnosed 3 years ago and is on Stalevo. Would love to hear from others who may have similar problems. It is so hard to watch this downhill slide and not be able to help him. We do try to have a sense of humor, but that is tough when you find your sweetie upside down in the closet where he was only trying to help me by picking up something.

[still truckin']

Hi Mike's Mate,

I have had experience with severe pain starting from my hip and going down my leg. I tried several different pain medications and pain killers and nothing seemed to work until I tried a drug named Gabapentin. I took 300 mg capsules twice daily for several months and eventually the pain went away. I highly recommend this drug if you can get some through your doctor. I am now pain free!

I also can't tell you how much music has helped me as well. Both for my mobility and for my mental state. I highly recommend having your husband's favourite music handy, both in the house on a CD player and also on an MP3 player or IPOD to take with him when you go out together. I find that fast marching music helps me get going when I am having troubles walking and also peppy gospel music helps my mood a lot as well. Just some suggestions you may like to try.

I am in my 20th year with this disease and I know it's hard, but we just gotta "keep truckin'" (with the help of friends and family).

One day at a time,

Still Truckin' (Val)

[Mike's Mate]

Thanks for the reply. Wow what a great attitude you have and after 20 years too! Thanks for the suggestions. We are using Gabapentin and the legs are pretty good but the feet hurt still. Maybe it needs more time. Music does help. We do use it sometimes and will have to try it more. God Bless.
Mike's Mate

[bruce]

Originally Posted by Mike's Mate

My husband had DBS Surgery in February 2008. He has had 3 "programming" sessions and so far has seen little improvement. His PD is complicated by neuropathy and almost constant pain. We have tried many different things to relieve all of the above including TENS for pain, Anodine for neuropathy and of course medications. He does not have much of the trembling, but is increasingly having trouble walking and has been falling a lot. He was diagnosed 3 years ago and is on Stalevo. Would love to hear from others who may have similar problems. It is so hard to watch this downhill slide and not be able to help him. We do try to have a sense of humor, but that is tough when you find your sweetie upside down in the closet where he was only trying to help me by picking up something.

I have a lot of pain w3ith knees ,feet,legs and hips. I had to retire early from teaching because of rapid deteration and dementia. short term memory shot and ability to concentrate I take medicine to slow it down but can,t stop it. I believe I fear this more than anything. I agree sense of humor essential!bruce

[bruce]

Originally Posted by still truckin'

Hi Mike's Mate,

I have had experience with severe pain starting from my hip and going down my leg. I tried several different pain medications and pain killers and nothing seemed to work until I tried a drug named Gabapentin. I took 300 mg capsules twice daily for several months and eventually the pain went away. I highly recommend this drug if you can get some through your doctor. I am now pain free!

I also can't tell you how much music has helped me as well. Both for my mobility and for my mental state. I highly recommend having your husband's favourite music handy, both in the house on a CD player and also on an MP3 player or IPOD to take with him when you go out together. I find that fast marching music helps me get going when I am having troubles walking and also peppy gospel music helps my mood a lot as well. Just some suggestions you may like to try.

I am in my 20th year with this disease and I know it's hard, but we just gotta "keep truckin'" (with the help of friends and family).

One day at a time,

Still Truckin' (Val)

I have same pain with hip. I never have discussed with doctor. I guess I should. I am really learning alot about music and pd. I appreciate this info. I keep on truking too!bruce

[dandldairytexasco@century]

Originally Posted by Mike's Mate

My husband had DBS Surgery in February 2008. He has had 3 "programming" sessions and so far has seen little improvement. His PD is complicated by neuropathy and almost constant pain. We have tried many different things to relieve all of the above including TENS for pain, Anodine for neuropathy and of course medications. He does not have much of the trembling, but is increasingly having trouble walking and has been falling a lot. He was diagnosed 3 years ago and is on Stalevo. Would love to hear from others who may have similar problems. It is so hard to watch this downhill slide and not be able to help him. We do try to have a sense of humor, but that is tough when you find your sweetie upside down in the closet where he was only trying to help me by picking up something.

I too have fallen a lot, have had 3 or 4 programming sessions without much improvement. I to go see a different doctor at the end of April. He is better at the programming than my current doctor. I have been told also that the probes may have been placed wrong. This has been quite a let-down since they told me I should have expected a 75% improvement.
Keep that sense of humor, I know how important that is.

[Ettie]

Hi

My name id Ettie and my Dad was diagnosed with PD around 15 years ago. He does not suffer with tremors so much but suffers terrible pain 24/7. Now although he has not had much joy with traditional pain releif even morphine the strange thing is he was advised to try Quinine (usually used for Malaria) which apparently helps with spasms. He tried it and it did indeed help a little, so in case this is of help to anyone else I thought I would mention it.

If anyone has any other pain relief ideas they would be very welcome.

Ettie

[bobct]

Originally Posted by Ettie

Hi

My name id Ettie and my Dad was diagnosed with PD around 15 years ago. He does not suffer with tremors so much but suffers terrible pain 24/7. Now although he has not had much joy with traditional pain releif even morphine the strange thing is he was advised to try Quinine (usually used for Malaria) which apparently helps with spasms. He tried it and it did indeed help a little, so in case this is of help to anyone else I thought I would mention it.

If anyone has any other pain relief ideas they would be very welcome.

Ettie

Ettie,

Thanks for your post. This is the kind of info that can only come from personal experience with PD. It's extremely valuable. Much of PD pain is related to muscle spasms and using a common, inexpensive solution such as quinine is the kind of info that can be a godsend, even if it works only a little.

Thanks again for your post

Bobct

[heather]

Quinine
is very good for circulation and night time leg cramps
i drink one glass a day,and don't get them many more

also very nice with a few drops off Gin added

[Mike's Mate]

Thanks everyone for your responses, thoughts and suggestions. Love the Quinine idea and will try it soon. The muscles seem to be going crazy now. Massage therapist thinks they are "waking up" from the DBS (maybe it is working??) She says the muscles are not so hard anymore. Guess that would explain why he is worse instead of better. Will check at his next appointment and see if this is a possibility.