How effective is DBS and at what stage of PD should it be performed?

Hello @dpgigov71 and welcome to the Parkinson's support group on Mayo Connect. I am so pleased to see that you are advocating for yourself, through research, and consultations with specialists. You are definitely doing your best in trying to find the right solution. That is so important!

I can certainly understand the concerns you have regarding your PD symptoms as well as your concerns about DBS. It can all seem very overwhelming, and it can then become difficult to make a decision. We do have some members who have had DBS.

Here is a link to Mayo Clinic’s website regarding Deep Brain Stimulation in the treatment of Parkinson’s, https://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/about/pac-20384562.

As you have done a lot of research on PD and DBS, you may already be familiar with the Davis Phinney Foundation. This group is a leader in research as well as education in the area of Parkinson's. Here are some videos about DBS that you might find helpful,

When I was first diagnosed, I was having gait problems, a very soft voice, some swallowing problems as well as balance problems. Will you share, as you are comfortable doing so, what your most difficult symptoms are right now?

Thank you very much for the quick response @hopeful33250.
Currently my symptoms are not that strong. My medications compensate them approximately 95%. Sill I have some issues with my left arm. It moves in a strange way and sometimes is getting numb. Same issue with my left leg, but it is not so visible. And I don’t have tremors.
As I said, my medications compensate the symptoms approximately 95%, but this comes on a high cost. I suffer from a lot side effects. I have a severe Insomnia – I sleep no more than 3-4 hours at the most. And this is not a continuous period. During the day I feel sleepy and it affects the quality of my work.
I also have severe seborrhea, which is very annoying.
Very often I have powerful headaches and dizziness.
On the positive side, I do some sports. I run 5 kilometers every second day. Going to the gym 3 times a week and I’m trying to do 10 000 steps every day.
Again thanks for the provided information and useful links.

It is good that your meds are helping with your symptoms, @dpgigov71, but I certainly understand the side effects, especially the fatigue. You mention that you don't sleep well. Are you taking the meds close to bedtime?

I am glad that you are exercising. That is a very important part of PD treatment. As you make a decision about DBS, I would appreciate hearing from you again.

Here are some other discussions regarding DBS on Connect. I'd encourage you to read them but understand that everyone's response to this treatment is different and the need for proper, ongoing DBS adjustments as time goes on is very important.

If you decide to get the DBS I would suggest that they do both sides. My father was only having problems with his right side however he said while he was there that they might as well set up both. If he needs it for the left side now he will just have to get it turned on. No surgery again.

Hello Dina, Your English is excellent! My spouse has Parkinson Disease (PD) for about 10 years since the very first signs before diagnosis. His symptoms are not the typical: rare hand tremor, Much drooling when napping, His first concerning sign was Sudden Daytime Sleepiness (SDS). While talking to you he would drop of to sleep with no warning. He experiences stiffness. He shuffles and is very bent over at the shoulders. Walking is changing slowly. At 75 his cognition is likely not worse than more older aduts.
We live in New Jersey, USA and have another home in Florida. Symptoms are progressing. His worse problem is sleep disturbance. He is up and down all night long and is chronically tired and getting depressed.
He takes Levodopa 3 times daily. If he takes his afternoon dose later than 16:00 hr. he does notice more stiffness and fatigue.
The specialist for DBS in NJ we saw this summer advised that DBS was more beneficial to those with more motor symptoms...tremors, walking.
The Doctors advice for us was to research clinical trials. There may be some studies he could possibly be involved with. This is tedious work to review abstracts and then contacting the group conducting the research.
http://www.clinicaltrials.gov Studies are international.
Hope this helps you.
We have a relative who has DBS and has gained much improvement of daily activities. His age is also 75.
My name is Kathleen. I am reaching out to the organizations for PD. My husband says I read faster and my background has been in Nursing for 52 years. As an older woman I studied to become a Nurse Practitioner (NP) seeing patients in private practice. My last 10 yrs before retiring I became a college professor teaching nurses to higher degrees. I completed all by course work for my Doctoral degree at Rutgers University before my own illnessess required I stop working. I mention all this...I do understand most of the medical literature I read, hence I am the advocate on that level for my husband. This is a very hard disease to live with. As a caretaker for him, I need advise also.
I am hoping I can do any small thing to help you in any way even if it is only to encourage you to move forward. Wishing you success. Kathleen

Dim I have PD. I have been diagnosed with this for about 2.5 years. DBS was offered to me. I spoke with 4 people who had had the surgery. They all strongly recommended the surgery. They wish they had done the surgery earlier when first offered. The one person developed an infection at the site which required treatment. He said he would still do it again. He understands that if the infection doesn't respond to treatment he may need to hae the inplanted deice removed. He stiill thinks highly of his surgeon. I did much research on the pros & cons of the procedure. It would help w/some of my sympoms. DBS is not for everyone and it may not solve your problems. Per my surgeon I don't meet the FDA guidelines for the procedure. I have to wait 2 more years. The surgeon is also concerned that my form of Parkinson does not respond well to the DBS suregery. Good luck

Are you familiar with Focused Ultrasound. I think it is relatively new but it stops the tremors for a period of time. Thank you