Don't wait too long to get DBS--' if you're Parkinson's gets too severe it won't work as well . Also you might not get accepted into a program - if Sinemet stops working entirely you won't be able to find a program that will take you! There are surgeons around that can do DBS on you when you are asleep (I found one) so don't be misled. Ask a Movement Disorder Specialist today! !
DBS reliably reduces or eliminates tremor and dyskenesia. It can also help with cognition, balance, swallowing, gait, hand coordination , speech and other symptoms. Neurologists say DBS only helps a few motor symptoms, but they haven't spoken with their patients! After having the surgery myself and speaking with other patients, I am convinced DBS can potentially help any symptom affected by the lack of dopamine.
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My near mentioned it to me..but i am afraid of it...I would rather try skin cells that are grown into dopamine cells and injected into you brain. he said he would see if he could get me into the UCLA study.
I've been waiting to have it done over a year now and to be accepted by Sheffield Hallamshire Hospital in the uk. I've had all sorts of tests and only just been told I am a good candidate for dbs. So I would start right away. Don't wait for the next great thing
WDeep Brain Stimulation is a surgical procedure that implants electrodes deep in the brain to stimulate the part of the brain that is dying producing the motor symptoms. It can be very helpful for the correct individual. If you wait too long it is less successful and most surgeons won't do it. It is not a cure but has helped me a buch. I recently went back to my previous home in AZ and people who have not seen me in 3 years where amazed at how well I was. I underwent the procedure 14 months ago.
Find the best team that you can that includes psychologists and rehabilitation as well as expert programmers. Good luck!
Yes-- I agree! I have been dismayed at how few people with PD realize it works best before the disease gets severe. I didn't know that until it was really a bit too late given rapid progression ,lengthy screening time ,and then waiting for surgery to be scheduled -- not to mention complications with an insurance company . Also a lot of people with Parkinson's unnecessarily avoid DBS because they are afraid of the wide awake procedure (entirely understandable) They need to know that you can go to sleep if you find the right surgeon.
So, I'm trying to get the word out to people ---don't wait! Talk to your doctor today!
I would like to add that the current state of Neurology holds that DBS will help a small number of motor symptoms -'but will have no effect on many others and will nothing for non-motor symptoms. I beg to differ. Based on personal experiences and the accounts of others, I think DBS potentially treats any symptom treated by Sinimet--and I think Sinimet-especially when augmented with a dopamine agonist treats everything. This makes common sense. If the problem with PD is a lack of dopamine and Sinamet and a doamine agonist restore normal levels of dopamine to the brain ,then it follows that they could treat everything. Because DBS appears to treat symptoms that Sinamet treats, it also stands to reason that DBS could treat any symptom of Parkinson's. After all, what function doesnt dopamine affect ? It affects everything-- mood, cognition and movements of all kinds. This is consistent with my experience. I noticed right t&at DBS cleared my brain fog and I started to think better and more clearly . My expressed surprise and stated that was unusual but I think not. Others have told me that they experienced the same result
When I first went through DBS screening, I was told that DBS would have no effect on my balance. However when I met with my physical therapist after surgery he said that it did help balance. This seems to be embraced by my neurologists at this point. In fact, Programmers are aware of a scientific article that states there is a certain frequency that ideal for improving balance.
It seems that this is a dynamic field where the truisms are changing constantly.
One of my most debilitating symptoms prior to surgery was "nocturnal urinegency coupled with foot dystonia." I would be up every 2 hours with emergency need to urinate but couldn't stand and walk to the bathroom. I'd crawl to the toilet and sit there for 10 minutes and then crawl back to bed. I would do this 4-5 times a night and could only fall to sleep taking 5 mg of ambien. Needless to say I never felt any energy.
Immediately after surgery these symptoms were gone. I know that the FDA only approves DBS for motor symptoms but there are many other benefits.
That is a wonderful story ---I'm so happy for you ! That dystonia sounds like it was terrible--and a great thing to leave behind. It's a good thing that the doctors don't know everything, but it's a bad thing that apparently they don't interview heir patients and find out what cvs really does! Maybe someday
DBS has been amazing for my love who has had Early Onset Parkinsons for 24 years. Senemet has addictive qualities for him. While the meds are generally reduced once DBS is in place, this did not happen for him. Senemet was continued a n d increased to the point of every hour and a half. At this point, the aggression and carelessness reached emotionally intolerable levels for me and physically dangerous for him with frequent falls from impulsive quick movements, dyskinesea, the consumption of large amounts of sweets all day in place of a balanced diet, etc. The neurologist was of the mindset that increasing movement to this level somehow provided improved quality of life. As a whole person, with relationships, and communities to fit into, the whole person matters over the medical model. Upon being approved for VA services, he was able to see three teams of Parkinsons neurologists over a year and a half who all said to cut the senemet gradually to much, much lower levels. The dyskinesia gradually diasappeared, he became more reasonable, and could execute physical movement without falling again. The argumentative, egocentric, grandiose illusions melted away. They changed the psychiatric meds too. He is presently content, has home health assistance three days a week, goes out into the community once a week, no longer drives, which takes a huge load off my mind and shoulders. He is happy. DBS is wonderful and small changes in settings change personality when combined with Senemet, especially at high levels. A critical balance was lost and more isn't necessarily better. It is important for the treating physicians to see the whole person from a whole life perspective and develop the treatment from there. This is where friends and caregivers can contribute . The VA does an excellent job of this through their Parkinsons Clinic in California.
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