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My husband with Parkinson’s got this week the best news ever. He got approved for DBS.
He is beyond elated, but realizes all the risk, which, he is willing to take. I am cautiously optimistic, but, I just envision our lives before or rather at beg of PD, we ignored the disease, apart from taking meds or seeing neurologist on regular basis.
DBS can potentially reverse PD 10 to 15 years, in other words we go to the beginning and then it start progressing again, yes, the disease will not go away.
All the extensive tests showed he is as heathy otherwise as very healthy 30 years old.
All cognitive tests, extensively detailed he passed with 100%.
Any comments, experience with this procedure or knowledge, or criticism of DBS would be appreciated.

Evamar, Since DBS in 2013 my husband has no tremors. This is amazing. However, as you know, every case is different.
Backstory - he had symptoms, slight limp at age 50, slight hand tremor at 55 when he was diagnosed. He will turn 80 this year. So it has been a long slow journey and decline.
He is now wheelchair-bound and has physical and occupational therapy 3x a week on average, via Fox Rehab services who are marvellous. As Jim exercised (weight-lifting champ in National Guard!) all his life he has a good basis for retaining muscle tone with this help.
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My husband had DBS surgery in 2013. Tremors stopped immediately so our quality of life back-pedaled several years. We could go out for lunches again, because he could manage utensils, did not spill his drinks, and did not have involuntary spasms. So our life was much better for a few years. We are so grateful for that.
He was hoping for more mobility, but this did not happen. As you know, each PD case is unique and different from others. However he was able to attend the BMW (Center for Balance, Mobility & Wellness, Wenham MA 01984) at Gordon College for several more years, which kept him as fit and strong as he possibly could be.
Re the surgery for DBS. It is a tough experience and the patient needs to be mentally prepared. Jim had both wires inserted in his brain in the one all-day procedure, i.e. two holes drilled through his skull and he was conscious throughout with only his skin numbed so he had no pain. I was aghast that I brought him home the same evening! All went well, he was out of it for a couple of days, no surprise, and we were grateful for Visiting nurses who began coming immediately and continued to monitor him at home for several weeks.
I am happy to answer any other questions you may have ... :)
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Evamar Aug 4, 2022
Cherrycherrito,
Thank you so much, I realize this will give my husband some time back and then disease will progress somewhat but slower, that is my understanding as per neurologist. The brain manipulation scares me, but, my husband is so independent, he will do anything to improve his quality of life. He has no one doubt! None!
May I ask how is your husband doing now after 9 years?
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My husband had DBS six years ago. It stopped the tremors, however he had seizures after the procedure because the lead in his brain had caused swelling. He had the procedure at UVA and I was very unhappy with his care. After the procedure he was sent home from the hospital the next day. We lived 75 miles away. When he began having the seizures (a few days later) we called an ambulance and he was taking to the emergency room of the local hospital. After several additional seizures I wanted him sent back to UVA but UVA did not want him back at their hospital. I finally got an ER doc to put him in an ambulance and he was sent to UVA.

I would ask the doctor how long your husband will in the be in the hospital to recover and what will the plan be if he has complications after the procedure.
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I worked for a woman as her 'personal assistant' (read: paid caregiver) and along with everything else under the sun to treat PD, she did have the DBS. I know it helped her tremendously for about a year--maybe more. I did not go to work for her until 10 years later, and she was totally fine, mentally, it was the tremoring and falling that was hard for her.

She was in her 50's when she had this done. I know she had a bald spot on her head where they had to shave her hair and she is wearing a scarf wrapped around her head in her daughter's wedding pictures. She looked better than I ever saw her looking, when I worked for her.

I know she wanted it done a 2nd time, but the drs refused.

My heart goes out to you--you are so young! I hope you can find the info you need and make the right decision for you.

I have a sweet neighbor in my new neighborhood who has had PD for 30 years. He must be a lucky one--you really cannot see much 'wrong' with him. He gets a little bit 'frozen' when it's time for his meds, but he is an active and vital part of our church community and we love him to pieces! It helps that his wife is an upbeat, very determined and connected lady. She takes care of him, but also 'allows' him to be very independent. He's in his early 80's!!
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Evamar Aug 4, 2022
Midkid58,
Just read your reply. Thank you. Good stories.
Such different experiences with each person.
But that is PD, so unpredictable.
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Evamar,
Have you explored on AgingCare your questions about Parkinsons?

Here are just a few:


Deep Brain Stimulation for Parkinson's Disease - AgingCare.com
www.agingcare.com › Caregiving Topics › Parkinson's Disease › Articles

Apr 6, 2010 ... Deep brain stimulation (DBS) is a surgical procedure used to treat a variety of neurological symptoms. It is a common treatment for motor ...

Parkinson's Deep Brain Stimulation (DBS) Brings Relief - AgingCare ...
www.agingcare.com › Caregiving Topics › Parkinson's Disease › Articles

Aug 11, 2011 ... Parkinson's deep brain stimulation (DBS) offers previously unknown long-term relief to people afflicted with tremors, movement and physical ...

What Treatments are Available for Parkinson's Disease ...
www.agingcare.com › Caregiving Topics › Parkinson's Disease › Articles

Mar 26, 2012 ... A therapy called deep brain stimulation (DBS) has now been approved by the U.S. Food and Drug Administration. In DBS, electrodes are ...

Deep brain stimulation Yes or no? - AgingCare.com
www.agingcare.com › Caregiver Forum › Parkinson's Disease › Questions

Jul 7, 2016 ... I've read several studies about the use of DBS on Alzheimer's and the results have, so far, been positive. It should be available for AD in ...
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Evamar Jul 29, 2022
Sendhelp,
Yes, I read them. Thank you.
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Hello,
my father had Parkinson’s and had the DBS surgery. It is extremely important for anyone who is about to undergo the surgery to not have any beginning signs of dementia. Dementia with Parkinson’s is not extremely common (I think 30% if I remember correctly) but so important to the outcome to the patient’s after surgery quality of life. My father had to go to the hospital for a few days worth of testing most of which was to check for dementia. He had a good sense of humour and passed the tests without issues. His surgery was delayed quite a few months due to emergencies at the hospital etc and had the surgery I think about 8 months after the testing. They did not redo the tests and he had the surgery. The surgery, at least as per my father’s surgeon will not completely get rid of all the symptoms but should cause the medications to work better and for longer at hiding the symptoms. There was nothing that would’ve caused my father to delay or refuse the surgery. Sadly we think that after the tests months before my father started to develop dementia. We didn’t really know or perhaps we didn’t want to see it. The reason it is so important to not be in dementia or beginning dementia before the surgery is because it is stressful enough on the brain that it can really increase the dementia symptoms. Sadly that is what happened to my father. He went into the surgery seemingly perfectly fine aside from Parkinson’s tremors and came out of surgery in major dementia. It was the first time this happened to this surgeon where at first the surgeon was convinced it was delirium and not dementia. My father was so far into the dementia that the nurses couldn’t believe us when we were saying he was fine before surgery. After surgery it took him months to recognize me. He sadly never was able to return home due to the intense level of dementia he was in and ended up passing about about 10 months later.

did the DBS work? Cannot really say since his dementia was so extreme so suddenly that we could only focus on trying to keep him safe and calm.

i wish I could tell you it went amazingly well and it is like my father was on a vacation from his symptoms but in my case his quality of life went from not great to hospitalized. I am sure my story is the exception and not the rule but please be careful about any dementia symptoms etc. There is a very good reason the doctors will not do the surgery on those with dementia please be careful. My father’s quality of life after surgery was no where near what it was before surgery. Sorry again for the negative story but I would rather you know going into this that it is a possibility that the surgery could kick dementia in full force and if that is a risk a person is willing to take who am I to stand in their way and again I am sure my fathers reaction was the exception but be careful. Of course we were advised that because he went into dementia from the surgery that it shows that the natural progression of his specific Parkinson’s would have put him in dementia in a few years. Not sure if that helps but it at least made me feel like all that happened was we sped up the inevitable and at least we were in a hospital at the time so now stress of what to do with my father at home with dementia.

sorry again for the not great experience with DBS.

i pray that your family’s experience is an incredible joyous one with DBS being successful for many years.
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Evamar Jul 29, 2022
MTL1974,
No, don‘t be sorry about giving me realistic and truthful story. So sad about your Dad. Thank you for sharing.
I am very sure about my husband not having any signs of dementia, he is interested in history, geography, politics and many subjects, he has 2 degrees, CPA, can work on any complex tax problem, speaks fluently 3 languages, if watching jeopardy he will answer almost any question, but, we are aware dementia can show up, for him and only him this decision is absolutely about taking chances but having a shot at better life means everything. I would be rather reluctant to do it, but, respecting his choices is my only option.
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Thanks Becky04489,
This is very sad. Losing 2 brothers must have been horrible.
I read this is not always successful and there is significant danger involved, like with any procedures.
My husband being fiercely independent, he feels his quality of life is more important and having a chance of improvement will outweigh any risks.
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sp19690 Jul 29, 2022
So far those with experience in this have not shown any positive outcomes for this procedure. Has husband given any thought to the fact that his quality if life may greatly be diminished? I assume he has and gas decided the risks outweigh the possible negatives. Have you both discussed what hapoens if this creates a bad outcome. With him having to be placed in a facility etc? I think a person should only do this if they have thought about both the best outcome and the worst outcome.
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Both of my brothers had Parkinson's and had deep brain stimulation. Brother #1 was 66 when he had the procedure. His movement disorder was fairly pronounced, and he had beginning dementia. The treatment did little for him and he died about 18 months later. Brother #2 was 58 when he had the procedure. his motor problems diminished slightly. He died of a brain aneurysm about six months later. Both had their treatments at a large university based neurosurgery center. Brother #1's family did not want him to take the risk, but he went ahead. Brother #2 was single and did not tell us that he was having it done. I honestly do not know what I would have advised him.
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My husband has been talking about a woman in his church who's supposed to go through this in the next few days. I'll be interested to hear how it goes.
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Evamar Jul 29, 2022
MJ1929
I will be very interested to know how it goes and hoping.
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Thank you.
I did post it again. There is much I read, however, real stories are much more of interest to me.
Could you elaborate on good and especially bad?
I know nothing will convince my husband not to do it, he will jump on operating table today and say do this now!
He trust science and so on, I am a little hesitant, but, I am dreaming of life we had before and spend every penny on travelling the world.
Well, we can dream right?
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I saw your first question on this and was hoping someone would respond.
I have heard good and bad.
Since I have no idea what advice to give other than:
Obviously you have talked to his doctors and since they have approved this procedure he falls within guidelines.
I think for better answers contact any of the following
American Parkinson's Disease Association Central DuPage Hospital
1-800-223-9776 (www.apdamidwest.org)

National Parkinson's Disease Foundation 1-800-473-4636 (www.parkinson.org)

Northwestern University Parkinson's Disease and Movement Disorders Center. -312-503-4397 (www.parkinsons.northwestern.edu)

Parkinson's Disease Foundation 1-800-473-4636 (www.pdf.org)
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