Has anyone here with non-tremor dominant PD undergone Deep Brain Stimulation? Did it help w/ balance? Couple of weeks ago, my neurologist suggested DBS to ease the dystonia in my arm and help my balance.
This stunned me b/c I had thought that while DBS was good for reducing tremors and dyskinesia, it was not an option for those of us with non-tremor dominant PD and that balance could actually get worse.
This DBS recommendation comes after some bone-breaking falls in the past few months. The rigidity in my arm a factor. Amantadine helps with that dystonia but I'm told dosage shouldn't be increased. DItto for the C/L (without which I cannot move) Neuro says more L-dopa (I take 6 a day) would worsen the dystonia or bring on a more typical form (outward) of dyskinesia. And so the suggestion that I talk with a DBS specialist, sooner rather than later.
Am investigating. Would be great to hear the experience of anyone with non-tremor dominant PD who used DBS to target dystonia / balance issues.
Thanks, y'all.
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Motal
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I was at a support group meeting on Friday and met a friend who has had DBS about 3 or 4 years ago. I had not seen him for quite a while and was shocked to find that I could no longer understand a word he said. He did not have a speaking problem before and he did not have a tremor either. So why his neurologist told him to have DBS is a mystery.
I have met DBS patients who were no longer able to speak at all and I have met one who lost his sight. I go to lots of support group meetings and meet lots of Pd patients.
I would love to be able to talk to you and see what I am able to do to help you. I do not charge for what I do and am not in it to make money. Please look at my website - reverseparkinsons.net and contact me.
Thanks for that, John. I've heard about - and just plain heard - the speech side-effect for some who get DBS for tremors*. I already notice some deterioration in my voice w/o DBS. Some idea of whether that means DBS would hasten the decline would be helpful - though there doesn't seem to be enough of a track record (re: DBS among non-tremor dominant PWPs) to pull such data from.
*One friend, post-implant, was told that she had a choice: she could walk or she could talk. We all face choices in life, I know, but yeesh, PD presents some stark ones.
Hi Motal. I am no expert on DBS. I cannot think that taking some part of the brain away can improve a person's health. It does not make any sense to me.
Why should you even consider choosing between speech and walking? I want both.
DBS has never claimed to improve the progression of Pd, whereas fast walking does. Why would you want to choose DBS if you haven't even tried to get up to one hour of fast walking, three times a week?
I was at two support group meetings last week. At each one of them I was asked how to overcome speaking too softly. The answer is simple; SPEAK LOUDER! That is not a glib statement. We can all shout loud, but some of us can not speak loud. The reason for that is the same as why we can no longer walk properly. We normally control both of those actions with our subconscious brain. That part of our brain has been compromised.
If you were to sit in your car, on your own, where nobody can hear you and shout as loud as you can, you will find you have no problem at all. So, all you have to do now is learn how to shout at a normal speaking level. When you speak, you can speak quite fast bit you cannot shout fast. That will mean that if you start shouting your words you will speak slower. Is that a problem? At least everybody will understand what you are saying.
DBS rig can be removed with attendant surgical risks, and doesn’t necessarily cause speech degradation, for me it improved speech slightly, the new directional electrodes help minimise the undesirable side -effects
Yes it can affect speech but that is not such an issue now as the tchnic improves. Choose your surgeon carefully - The moral of Johns post seems to be dont have DBS in Sth Africa!
Today we saw the neuro-psychologist who did a lot of testing on my 79 year old husband. One of the things he said was that he was sending the results up to Stanford to see if he is a candidate for DBS. My husband has very little in the way of tremor. The Psychologist felt he could well be helped by DBS. A man in our Parkinson's support group was very glad he had DBS.I don't know f he was a non-tremor, I can ask him, but he is happy with the results and I don't notice any tremor now.
I had DBS 5 years ago for PIGD... the non tremor type of PD. PI stands for postural instability. GD is gait disorder. I’m certain that I would probably be in a wheelchair if I had not had it performed. I have some degradation of my speech but most of the time it is not an issue. I had it performed by DR Kim Burchiel at OHSU in Portland OR under full anesthesia with GPI placement of the electrodes.
I would make sure that you are a good hands and that the team of surgeons and screening are the best available...
Also, my foot dystonia was so severe that I was crawling to the bathroom 5-6 times a night to urinate despite taking c-l dopa every 2 hours. My balance has not suffered from the DBS.
Hi etterus, how are you doing, well I hope. Was particularly interested in yr DBS experience as a PIDG patient. I ve been diagnosed 5yr ago, and am now having the Severe mobility problems you describe. My Neuro is making noises about DBS, but as many people I was under the impression that non tremor PD were not to expect Such good results? Question how much LDopa were you taking when you operated, and now?
I opted for DBS nearly 6 years (age 62) ago to address Tremors. It was highly effective in treating this symptom. Today I am having speech and voice problems (age 68). Balance has become an issue though I have not fallen. Fatigue has become the most concerning of my present situation, making it very hard to plan my daily activities . I have been physically vital most all of my life, loving to work hard whether in the garden, the gym, etc. Understand ,from my neurologist that fatigue comes with PD and "learn to live with it". I have met others with PD who have not had DBS who have not spoken of this challenge so it's hard to know cause and effect.
Let us know what else you learn in the course of your investigation.
Motal. Hi. Long time no hear. Sorry to hear you’re considering DBS relatively soon after dx. We used to discuss cycling a lot. I presume that intense activity didn’t slow the disease down for you as effectively as you’d have liked eh? Bummer. Hope all goes well with your plans.
Hi from UK. Yes, I had bilateral implantation of the STN almost a year ago, 9 years after dx. I'm primarly bradykinetic, dystonic and non-levodopa responsive. The rig is a Boston Scientific 'Vercise' with the directional, tuneable electrodes, positioned by peri-operative MRI. It is, quite frankly, fantastic. I'm 9/10ths most days, on reduced meds, walking improved hugely, balance a little better, I can move both sides voluntarily now, speech is louder, only a bit of transient dystonia. Before surgery I could barely move my left leg, left arm was useless, couldn't stagger far without falling, was barely audible.... any neuro who adheres to the dated 'only applies to levodopa responsive, tremor dominant' etc. is living in the past. I can't commend the team at the National in London highly enough, and of course, being in the good old UK, the whole thing cost precisely zero; unless one counts the cost of a box of biscuits for the nursing staff......
Andy... did you have the option of being asleep during the surgery? Where were the electrodes placed? Subthalamic nuclei or globus palladius internus? How about speech? Thanks
I was diagnosed with PD in 2009, never had tremors, but bradykinsea, lots of dystonia, and mostly on my right side. Of course, like most PWP, there was a progression. At first, I could get a long with just a dopamine agonist, but eventually I had to use an ever increasing amount of sinomet and nightly doses of neurontin for the dystonia. In 2017, my neurologist suggested that I would be a good candidate for DBS. After a second opinion in December of 2017 confirming DBS candidacy, I started a lengthy process for approval of the surgery. The process involved a team of doctors and professionals evaluating my condition on and off my medications, and a battery of physical and psychological tests along with a couple of lengthy MRI’s. In August of 2018, I was told that I was approved for surgery.
At the end of November 2018, a St Jude/Abbott Infinity unit was implanted in my chest with bilateral leads placed in my STN. Each lead has a combination of complete and segmented electrodes that are tuned by my neurologist. My neurologist creates a combination of currents and electrodes to address my symptoms. After a tuning session, my neurologist advises me of the additions of programs to my controller, which I can access through a dedicated iPod.
I suffered from moderate dyskinsia for the first month after surgery. I never had any speech issues. My gait is almost normal, and I am able to sustain activities like walking or hiking for several miles without any pain. For now, I am completely off medication, but I do maintain a rigorous elevated heart rate activity at least 3 times a week.
Time will tell if I can continue without medication, but for now I am grateful for this technology and it’s potential for pwp.
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