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Topic Still having problems after DBS Go to previous topic Go to next topic Go to higher level

By Maral On 2016.06.02 09:42
Hi, my dad has got PD since 12 years ago. Last year he had the surgery, at the very first days after surgery, everything seemed to be fine, but unfortunately since 2 month ago, his problems began to emerge again. tremour, body rigidity and being unable to walk easily. The problem is that his doctor keeps reducing the devices power (both voltage and frequency) since 2 months ago and he says that the problems should be solved by taking more medications. I must say that the dosage of Levodopa he is taking now, is half of the amount he used to take before the surgery. I dont know how i can i help him. He seems hopeless about his surgery, can someone help me please? that would be really nice of you, if you do so.

thank you so much


By LOHENGR1N On 2016.06.02 14:07
Maral, Unfortunately DBS doesn't work for everyone and anti-parkinson's medication still must be taken though in some cases it can be reduced. Many times it takes adjusting of DBS and meds to find a combination that works. But the underlying disease still progresses making adjusting DBS and or medication a ongoing process. You say he seems hopeless about his surgery? Do you mean he is down in the dumps because it hasn't lived up to his expectations? Perhaps you can talk with your Dad about it, let him know that there will be adjustment in meds and voltage and timing these things are to be expected (maybe this wasn't discussed with him before?) That decreasing his meds while he was able to do that for awhile was kind of a starting point level for the doctors to go by? a reference for the increasing or decreasing drugs or DBS setting and levels. That this may or will happen periodically? Really I don't know what else you can do to help him right now other than understand what is happening and help him to understand these problems and adjustments are expected more often than not. To try to ride it out until hopefully they sort it out and get him on a dose that works for him and evens out symptoms for a time. I don't know if this is of any help to you and your dad, I hope it is. My experience with DBS is limited other here have had it done and can probably provide better answers to your concerns. Sincerely Al.

By Maral On 2016.06.02 15:17
Thanks a lot for your attention. Actually he started having walking difficulties from almost 2 months ago and since then the neurologist started reducing the power of the device and increasing his medications. I think the problem is that i cant figuire out what he is doing! When i tell him that my dad was almost good with a previous setting, he answers that the difference between these numbers is not so much, so its not effective, meanwhile he reduces the device power. I am really confused. I think i need to study more. In fact my dad is a pharmacist and knows these issues better than me. I wish he is one of those for whom, DBS finally works well!
best regards

By moonswife On 2016.06.02 21:24
DBS settings and Rx combinations are like dancing with a new partner. Lots of changes and lots of adjustments. My husband was still working, under 65 and in general great health, except the Parkinsons. The shaking stopped, but it never promises to stop rigidity, or dyskenisia, or the progression towards dementia. BUT THE SHAKING STOPPED. He had lost 100 lbs, in a calendar year due to constant shaking. It is terribly difficult to help Dad see the bigger picture...that it can become better. And I cannot believe a programmer made the comment that the setting change tho small does not make much of a difference. We have gone back just to make his voice louder. Not sure whether it is intensity, location or frequency they change for that, but makes all the difference. One LITTLE wrong change and his voice is louder and his baby finger twitches. ???? Keep your chin up.

By Maral On 2016.06.03 00:54
Thank you so much dear moonswife for sharing your experience. Although his neurologist is the most famous one in my country, recently I have been considering referring to another doctor! If small changes are not effective, then why do you basically change the adjustments each time? Glad to hear that your husband is getting better by the way. I wish that all the PD patients have the chance tp get much better by the development of technology and science these days.
best regards

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