Art says, "When the window pops up that says "Log In" or "Create New Account", below Create New Account is the words, "Not Now". I clicked on Not Now and was able to watch the video."
It may also be on Lena's WhatsApp.
Here is a before and after Switzerland FU... - Cure Parkinson's
Here is a before and after Switzerland FUS PTT video of Summer Copeland. You'll cry - guaranteed. 16000 views. 540 comments - 1 day
Written by
MBAnderson
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58 Replies
•
Thank you for posting that. It is very encouraging. It's nice to have another option besides just DBS. Although I'm not sure if FUS is being done yet in this country but undoubtedly will be soon.
It is being done here, but not exactly the same. Here it is a pallidotomy and it's in clinical trials which means it's free.
There are two process involving FUS they target different areas of the brain. The pallidotomy which I had treats primarily stiffness and rigidly is still in the trial phase. The other I am not sure of the exact name Thalamotomy I believe its called and is being done in Switzerland is for people who are tremor dominate
What is the cost of something like this do you know?
Fr.35,000 in Switzerland .
Wow, that video is inspiring! Parkinsons is such an individualized thing, does it help each person no matter what their symptoms are or does it target specific symptoms? Can anyone have this treatment or are their specific requirements?
Also, youre going soon, yea? All the best! Looking forward to reports 
I believe it is available for people who are no longer responding well to medication, have motor complications and are tremor dominant. Please correct me if this is not the case. I looked on the Sonimodul website and couldn’t find eligibility criteria.
Is it only for tremor dominant? Thanks for response!
You are correct. The pallidotomy is for stiffness and ridgety associated with Pd. The criteria was medicine not working , symptoms dominate one side more and slight tremor. I'm now almost 6 months out from the pallidotomy and feeling great. Still got take the medicine but a much more quality on time . Walking flows much easier .
Is that for just Swiss people or same price for other outsiders?
What a really inspiring video! Her amazing family all supporting her as well as the medical team.
I think they do a very thorough assessment to see if they can treat your symptoms and consider you if meds no longer work. In this case I don’t think she took Parkinson's meds but was clearly tremor dominant.
It is expensive but what an amazing result.
I think in the UK they do FuS for essential tremor only.
Best wishes for your visit to Switzerland Marc. Have a safe journey and a great outcome from the surgery.
Impressive! Do you know what the difference is between this procedure and the US FUS procedures? I think the University of Virginia has a center?
I believe the procedure in Virginia is a pallidotomy, which is the procedure they do everywhere else except possibly Stanford. Someone said yesterday that there doing a PTT trial at Stanford, which is the same as Switzerland.
Virginia, Stafford and Brigham and Woman's in Boston are doing the Pallidotomy study.
Side effects to this treatment??
When you say dominant I am assuming that means the dominant side of the body that you use the most? I am a right hander but I do things with my left hand as well. My doctor said it seemed odd that I had a tremor on my dominant side because he said it should have been more on the non-dominant side. But to me at the end of the day and being the clinician that I am, I think and truly believe that every case is different no matter what the research says.
When you said I would cry, I was very interested, since I cry very easily, and I like an inspirational video, just as much as the next PWP. But I did not cry as a result of this video. I actually couldn't bare to watch most of it. All that I could think of is why isn't this woman on c/l? Did I miss something? I think in the US, most insurance companies would not think of paying for such an expensive procedure when the patient hasn't first tried c/l... and in places with socialized medicine where care is more carefully dished out, I guess it would be a crime to give this lady that treatment when the patient hasn't first tried c/l... Again, sorry if I missed something?
MBAnderson• in reply to
I don't think you missed anything. My impression, too, was that she had not been taking any pharmaceutical. Watch it again -- you'll cry. (I'm sure it was not paid for by an insurance company or government health program as they don't cover procedures and other countries. I got the impression the funds were donated.)
• in reply toMBAnderson
I watched whole thing this second time and did not even come close to crying...
With 200 mg of c/l (maybe 50 cents worth) she would probably be set right, but instead she chose to suffer, for God knows how long, and not to mention the mental anguish she caused her family???
If so, this seems like a stupid and selfish choice...
One positive about the video, I really liked the background music...
MBAnderson• in reply to
Levod,
We don't know her circumstance. There are a lot of PWP on this forum who cannot take C/L because of severe side effects. One person has commented in the recent past that she got dyskinesia within 1/2 hour of a small dose. There may be contraindication issues, who knows what the reasons are. You might consider contacting her and asking her.
Personally, I don't make recommendations regarding pharmaceuticals because I know nothing about the people and their circumstance and in general believe we should have faith that everybody does what they feel is best for themselves, even if we disagree with their choices.
Watch it third time in the context (for whatever reason) she cannot use levodopa therapy. It brings a tear of joy to my eye.
• in reply toMBAnderson
The vibe I get from the text in the video - "whole foods and natural medicines" - leads me to believe (I know, we actually can't be sure) that her avoidance of medicine (actual medicine) is likely due to some philosophical issue with the evil-chemical-drugs-that-kill-you rather than actual adverse experiences.
The line about her Doctors congratulating her (pre surgery) on how well she was doing is also consistent with the natural-therapy crowd, when really to me she looks like a typical 10 year unmedicated PWP of her age.
Nevertheless , pretty amazing outcome. Hope the benefits persist!
MBAnderson• in reply to
May be. If your premise is true, I can understand how many might disagree with her, myself included, but if we suspend judging her, the point of the video, the reason I posted it is to show the miraculous difference between before-and-after.
PS. Were you impressed with what the medical team accomplished in six hours?
• in reply toMBAnderson
Totally. Incredible.
Frankly if benefits like this last even a couple of years it strikes me as being worth it.
MBAnderson• in reply to
Indeed.
Yes, incredible!
lenamm• in reply to
In talking to the woman in the video - she tried drugs but the side effects were very bad. Being someone who got dyskinetic dystonic tremors that looked like seizures from any amount of drugs pre-surgery (I had PTT in Switzerland) sometimes surgery is our only option.
Trixiedee• in reply to
I know the woman in the video. She had to take meds for 6 months to be eligible for the treatment.
Marc,
Were they improvements or not? Can't watch video, no FB account.
• in reply toDespe
I'm amused that you may have been thinking Marc was crying because there was *no* improvement.
Yes, she went from pretty bad and being overwhelmed to very good, effectively normal.
Dr. J took a person who was on the edge of throwing in the towel and gave her, her life back -- as a normal person. As you might imagine, she and her family were over the top happy again.
Thanks, Marc! Hope your results will be even better. Just don't use a FB account to show the outcome because I don't have one.
Okay. I thought I would take my laptop and give you all feedback in real time, while the procedure is underway.
Is it doable?
Despe,
I am able to watch it with no account. When the window pops up that says "Log In" or "Create New Account", below Create New Account is the words, "Not Now". I clicked on Not Now and was able to watch the video.
Art
Art, I did it! Thank you. Indeed the results of her PTT are simply AMAZING! My husband got ways to go to reach her pro-PTT progression and need for PTT.
I am wondering why someone has to wait this long to get PTT? To me, it's logical to "catch" PD progression sooner rather than later. . .
So, no hospital in the USA does this procedure for tremors?
There are three FUS surgeries for Parkinson's. PTT (pallidothalamic tractotomy) in Switzerland is the only one that can be done on both sides and treats tremor, dystonia, dyskinesia, bradykinesis and rigidity and results hold for at least six years (ie halts progression of symptoms). Thalmotomy in the US and other countries is just for tremor dominant PD and is FDA approved and can only be done on one side. Pallidiotomy is US is for dyskinesia and is in trials in the US, Canada, maybe UK but seems to treat different symptoms as well, also only one side can be done. I have less info on the surgeries besides PTT since I did not go through them. At this point only medication resistant folks qualify for FUS surgeries (i.e. meds no longer work or side effects very severe). So if you have never been on meds this is not an option.
I was just on the university of Virginia website, it didn't go into great detail about which one they do. It's very expensive, evidently.
You should go on the FUS Foundation website. They have a list of locations which are clinical trials that are free and a list that are commercial. Often the same location does both.
Just to clarify - it is actually Summer's mother who had the procedure.
I have to admit - I cried and those tears of sorrow changed to tears of JOY !
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