This will give you hope. Check out this ... - Cure Parkinson's
This will give you hope. Check out this amazing TEDTalk: Yoav Medan: Ultrasound surgery -- healing without cuts http://on.ted.com/a01aj
PD is a disease so I am not clear on what Yoav was reducing/cutting out with this surgery that alleviated a PD symptom.
the device is being tested to target an area deep inside the brain, the thalamus, to relieve tremor, a common symptom of the neurodegenerative disease.
This area is one of the same targets of deep-brain stimulating devices, surgically implanted, pacemaker-sized items that send frequent jolts into the brain to relieve Parkinson's symptoms
Thank you for your explanation. Great web site too.
us.insightec.com/Dyskinesia...
January 7, 2014
The Focused Ultrasound Foundations has released a special newsletter issue informing that a major milestone in the evolution of the field of focused ultrasound has been achieved. The first treatment has been successfully performed in a 20-patient pilot study assessing the feasibility, safety and preliminary efficacy of MR guided Focused Ultrasound for dyskinesia in Parkinson’s disease (PD)
Is there a way to be a participant in the study?
Eligible participants include patients, age 30 or older, with tremor-dominant Parkinson’s that cannot be managed by medication alone.
Hi RoyProp. Dyskinesia is not a symptom of Parkinson's disease. It is the result of over-medication using the drug levodopa.
John
Hi John, sorry to bother you again, but after reading your book, and realising how much effort and research went into it, I would like to know what you think of this new treatment. After being diagnosed a few years ago, my symptoms are tremor-dominant. Very few other symptoms, except loss of smell. I know you are not a doctor, I would just like to have your opinion. Thanx
Hi Anid. Thanks for this. I don't know anything about it! What do they intend to laser? If you believe that killing an area of the brain is capable of fixing your tremors, then it is up to you. To me, it sounds like the old palidotomy opperation, which burned the intended area. Sometimes that worked and sometimes it didn't. There is no going back! Once it is done, that is the end of it!
Excuse me asking this question, but I ask it of every 'Resting Tremor' patient. "Why are you prepared to damage your brain in order to get rid of something that is neither painful nor inconvenient?" The moment you start to use the limb, the tremor stops. If it is an essential tremor, then there are ways of overcoming it in most instances. I mention in my book about holding a a glass tightly, while drinking out of it. In that way, you use the conscious brain to control the movement. If you have not tried to do this or you are unable to get it to work for you, then let me know by email, johnpepper@telkomsa.net. We can discuss it together. If you are embarrassed by your tremor, that is perfectly understandable, but would it not be healthier for you to explain to everybody you know, that you have Pd and you are neither an alcoholic nor mentally retarded. A small area of your brain has been damaged but other than for that, there is nothing wrong with you. In a way, it is a badge of honour. Look at Michael J Fox. It does not stop him from going on air to the whole nation with it.
I hope this helps.
John
Yoav Medan: Ultrasound surgery -- healing without cuts
on.ted.com/a01aj Hi John, this is were I read about it. Thanx again for the quick return. I see in one of your postings you are talking of your wife-to-be. Wonderful, I wish you many happy years! Regards
Hi Anid. 79 might not sound to be the time to start a new life, with a new partner, but it is no life being alone, after having been married for over 50 years. We are looking forward to many more years of happiness together. My new wife was married for 49 years to a man who had Pd for the last 20 years of his life. He choked badly, 3 years before he died and had to be fed through a tube in his stomach after that. She knows all about Pd and how to deal with it and is a wonderfully plucky woman to want to marry another Pd patient.
Thanks for your wishes.
John
Congrats to you and your new wife !
John Pepper, I am responding to your question "why are you prepared to damage your brain in order to get rid of something that is neither painful nor inconvenient?" I am not interested in the surgery at this time, but.....I have had pd for over 25 yrs with no tremor at all until Jan, 2013. Is it painful? No, but it wakes me up from a sound sleep which on a good night is only 3 or 4 hrs. It is very inconvenient and it's only in my left hand. Opening and closing my hand several times stops it for about 30 seconds. I then get up to take sinemet and there is no going back to sleep. Then, i'm up for 3 hrs.....then take a 1 hr nap. I am not saying surgery is the answer. I won't have it done......not dbs either, just thought you would like another point of view. As far as embarrassment.........that's not a problem. Looking forward to reading your book.....
Hi Jo. This is the first time I have heard of the resting tremor waking patients up. I was under the impression that it only happens when the patient is awake. Do you know that the moment you clench your fist, the tremor disappears? If yours does not then please let me know. I hate telling others something that is not true.
I am now of the opinion that patients with resting tremor have a different form of Pd to those that don't. There are several forms of Pd, but nobody has ventured to say what the distictions are. I have slept badly since 1974, when the insomnia first started. I made up my mind in the early eighties not to let it upset me. I either get up and do some work on my computer and then go back to bed, when I feel drowsy again. Otherwise, I read a book until I am able to go back to sleep again. In this way, I have been able to overcome the stress caused by not being able to sleep. I no longer worry about it!
John
JohnPepper, Yes, making a fist does make the tremor disappear. but only works for a few minutes and starts up again...also, it is very hard to make a fist when I first wake up. I actually have to concentrate to get my hand to move. It feels like I don't have the strength. But I keep trying until I can do it.
I don't stress about my lack of sleep either....but, I may take 1 or 2 naps during the day.
Hi Jo. I have to remind you, and everybody else that I am not a doctor. I also have to remind you that I never had a resting tremor, so everything I ask is asked in order to get an undertanding of that symptom. Having said all this, may I ask you if you have persevered in clenching your fists? Many years ago, a patient with the same problem said that he used a squash ball in the palm of the affected hand and continually clenched his fist. The last time I saw him, he said that the tremor had almost disappeared. He was a lot older than I and has since died. Others have also said that it helps. Why not try it?
John
JohnPepper, I will try it and let you know how it (squash ball) works for me. Thanks!
True, but
Dyskinesia is what I experience.
I have Parkinson's.
I take no drugs.
I have involuntary movement, shaking, tremors, jerking.
Interesting reply. Do you use a natural levodopa such as flava beans or mucana pruriens?
no
Hi RoyProp. My sincere apologies! I should have said, too much levodopa produces dyskinesia. Yes, Pd can also give you unwanted movements but most occurrences of dyskinesia come with high dosages of LDopa medication.
John
That's incorrect. Dyskinesia refers to a category of movement disorders that are characterized by involuntary muscle movements,[1] including movements similar to tics or chorea and diminished voluntary movements.[2] Dyskinesia can be anything from a slight tremor of the hands to an uncontrollable movement of the upper body or lower extremities. Discoordination can also occur internally especially with the respiratory muscles and it often goes unrecognized.[3] Dyskinesia is a symptom of several medical disorders that are distinguished by their underlying cause.
Join the queue
healthsystem.virginia.edu/f...
Thank you so much for your help. What is your opinion about this procedure?
The procedure is safe and common and only uncommon for PD. I have no problem with submitting to this/ I filled out and submitted application. In my case, for later test groups or information sharing as I do not feel my condition is not capable of being "managed by medication alone".
I was to participate in a clinical trial where magnetic resonance was used to alter the brain. Used successfully for depression. However my dyskinesia (sinemet induced) was too much and I was dropped. I was eager to be zapped too!
