I had the surgery at Sonimodul in Switzerland in Feb 2021.
Short story:
Before PTT, I took 3 x Levodopa Carbidopa CR daily. Now, I take 5 and my symptoms are a lot worse. Progression rate has increased.
Long story:
I never had resting tremors. I have rigidity, dystonia, bradykinesia, akinesia, masked face, bad voice and speech. My symptoms were worse on the left side, so they operated my right brain.
The one improvement I had was transient: Left side foot levodopa induced dystonia disappeared immediately after surgery but reappeared after 8 days.
Right after surgery, I developed a major balance problem. Ten days after surgery, I had fallen 10 time, never had fallen prior. I still fall regularly, not as often, because I now ‘’furniture walk’’.
What I thought was rigidity that had disappeared with the surgery, was rather akinesia (a new inability to perform voluntary muscle movements). Right after surgery, the balance problem was thought to be due to newly disappeared rigidity, but it was not; I had an exercise program made to measure by a kinesiologist, I did the program rigorously for months, but it did not help at all. Immediately post op, I also became unable to get up on my own from a lying or sitting position. We had to install a booster seat on the toilet when we came home after the surgery. I could not bathe or shower by myself pre op, but post op, I could not even move enough lying in the bathtub for my husband to assist me: we had to buy a medic bench. I walk more slowly, and am shakier due to post op permanent foot dystonia (only had Levodopa induced foot dystonia prior to op). Climbing stairs also became more difficult.
As soon as I came home after surgery, I noticed a clear worsening of my right side: I dropped and broke dishes. Everything was/is more difficult than pre op.
When I reported all of that at my evaluation three months after surgery, Dr Jeanmonod, who had always been pleasant before, became hostile, saying the surgery was a success, and my emotional brain was responsible for the worsening. He clearly threatened not to follow up with me, saying ‘’unless you admit you are entirely responsible for this outcome, there is absolutely nothing I can do for you’’. That is when I understood how he prevents bad outcome to show up publically: he shames patients into silence, blaming them…
There ARE bad outcomes. There is this case where a patient developed restless leg syndrome right after surgery in 2019. When they told Dr J., he immediately responded it was due to his emotional brain, in an intensive expectation phase. Turned out it wasn’t emotional at all: they redid the surgery on the same side, entire amount paid for by the patient again.
And I find dishonest to advertise in huge, obvious treatment facts on Home Page ''low and transient side effects'', while not mentioning major adverse effects like restless legs syndrome, having to redo same side surgery up to 3 times, significant speech degradation or permanent general worsening like mine, when they know these facts very well…
A HealthUnlocked member private messaged me with this info: ‘’I talked to a lady whose husband after encouraging first procedure quickly regressed and underwent TWO additional surgeries on same side. Additional procedures require the same investment$. And the procedure is definitely not a cure. I talked to the caretaker of one gentleman who said his client got significant speech degradation. When we finished, the man with PD tried to speak and really struggled. The lady whose husband had PD and got 3 procedures had similar comment about his speech.’’
And I strongly suspect that Parkygal’s story (healthunlocked.com/cure-par... is the same as me: she is probably keeping quiet, being told it is all her fault… But that’s only my impression.
How inviting is it to come out in social media while being blamed by surgeon for bad surgery outcome?
Prior to surgery, I explained Dr J. I was seeing a psychologist because of what I had read on Sonimodul’s Web Site concerning emotions. I had printed the factors that could explain the negative phenomena after treatment, for the psychologist to help me prevent post op reaction. I made sure I left no stones unturned. When I saw the psychologist after surgery, he found that my symptoms were much worse than pre op, and no, he did not find anything emotional that would create such results… In fact, just like my husband and I, the psychologist did not believe the emotional excuse for the terrible surgery outcome.
Since nothing in Sonimoldul’s text bothered me, Dr J then strongly insisted that I had a bad outcome because I had received an MSA diagnosis a few months pre op. He said the results were caused by a big, terrible fear that I had MSA. I told him that the MSA diagnosis was made over a 45 min appointment in an office, based on no concrete tests and that I had figured that spending 10 hours at Sonimodul, in a separate trip, months before surgery, doing MRI, Scan, EEG, neuro exam off and on levodopa was way more convincing to me. I had told my husband back then: they can call it what they want, I am going with the one who says he can help. So there went Dr J’s theory of my terrible fear…
But still, just in case Dr J. might be right... After all, I had read such good results in his studies and all the good testimonies here. He was insisting I place my trust in him and that I needed to find another therapist, a woman psychotherapist instead of a man psychologist I was seeing.
So I did: found a women psychotherapist instead of a male psychologist and I decided to go all in. I printed Dr J’s texts again, and even added:
These will be important themes for an adapted psychotherapeutic support, as well as reduction of fear, anger, the processing of traumatic events, the integration of the new situation and the modulation of future goals.
Just in case I had not processed some ‘’childhood traumatic events’’… We dug deep, finding what my husband calls ‘’little girls conflicts’’ with my sister, working through every conflict we ever had. Worked very hard, several hours daily, for months, reading new therapist book recommendations, doing psycho exercises, plus speech and kinesiologist physical exercises. Giving it all I could for months, with absolutely no benefit.
(See continuation in comments section due to too many characters for post)
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Parkie-
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When we got to Switzerland last month for my one year evaluation (rather 16 months due to Covid), they observed the damage, admitted I was way worse than pre op, but insisted that the surgery was a success… said they hit the target, showed me an image of a spot on an MRI image. Dr J. told me my EEG is exactly the same as pre op and that means it’s emotional…. To me, if the EEG showed I was in thalamo-cortical dysrhythmia before AND after surgery, it shows his surgery didn’t do s….t.
What changed everything was his next explanation… He went on to say that once I got the MSA diagnosis (yes, ‘’that’’ again…), I got this feeling of being doomed that is preventing me the benefits of his successful surgery… he said there once was a shaman who pointed a bone at a tribe member, telling him he would die within the next few days and that the belief was so strong (meaning to imply just like me with MSA…) that even a bunch of doctors with all their hi-tech equipment could not prevent the member from dying…
That was it for us. The doctor I kept defending pre op is actually either nuts or finds a very easy solution to explain his unsuccessful surgeries.
And another thing that made me lose the little trust I still had in him… A while back, once I had accepted to change therapists, Dr J. mentioned in an email that he would support me in my future neurological and psychological evolution. After his whoohoo shaman bullcrap, I reminded him of his email offer to support me, thinking he had at least some suggestions for me to get better, but he answered ‘’don’t look at me to find out what you are afraid of, this is your problem, you work it out’’… I am on my own!
What I think happened:
Either they messed up big time playing in my brain, damaging me.
or
They don’t master the selection part of the process. Their PTT works for most patients, but not all, and they cannot differentiate who will come out good from who will come out worse. However, they don’t mention this to the guiney pigs prior to surgery.
Would I have the surgery if I would have known the outcome: ABSOLUTELY NOT.
Do I recommend having this surgery at Sonimodul: ABSOLUTELY NOT.
Thank you for sharing your journey. I am so sorry that you are now dealing with worsening PD issues. Based on your story, I would never trust that doctor. His responses were shameful. However, what shines in your story is your tenacity and commitment to be accountable to yourself and do everything in your power to get the best result. I feel hopeful that you will apply that same drive to recovery of lost function and healing. I wish the best for you. You can do this!
Thank you so much for sharing this side of the story Parkie-. I am so sorry you are going through this. Maybe you could join one of Marc's weekend Zoom calls. Your insight would be valuable (although you have shared it here, so you have definitely done your part!) us02web.zoom.us/j/833522248...
Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)
The Saturday Zoom was set up so people in Australia could participate - of which there are 3. They are mostly different, altho a few people attend both. The Saturday meeting usually has 10 -12 and the Sunday meeting usually has 17 - 22.
The pieces of the puzzle are starting to fall into place for me. If yours was considered a "successful" surgery, then the supposed very high "success" rates suddenly start making more sense. I am left wondering what a "failure" would look like.
Especially if behind the words "success" and "failure" there are sick men and women with their sufferings and hopes with whom it is better not to play with the words to "be right".
Grazie per la coraggiosa condivisione, squarcia il velo di imposta omertà.Mi spiace per quanto stai vivendo dal punto di vista fisico e subendo dal punto di psicologico. Un abbraccio
You really are very brave and I am so sorry that you have to endure this. I also thank you for sharing. Just wish I had at least some words to help. Thinking of you x.
What a horror. So very sorry to hear about your experience and especially the apparently unprofessional, actually shamefully shamanistic self-rationalizing response that you described. So very sorry.
Now the rest of my comment is not for you Parkie, let me request that you are better served by just skipping over to the last paragraph, and let it go there. Last paragraph. You won't gain anything I promise by reading further and you won't lose anything either. Just please skip over to that last paragraph about Dr Erickson.
Unfortunately, it is sometimes possible that some professionals are not immune from progressive egotism, grandiosity and narcissism, or as sometimes we like to say in Texas, chickenshit...the after the fact switch to a convenient new self serving, newly-and surprisingly changed from the scientific-pitched sales pitches up to then, unscientific surprise after-the-fact selfserving retroactive "diagnosis" that says, as unbelievable as it sounds, that it's all your fault, specifically the "imaginary" part of your own auto-suggestion...as if somehow we were back in the early 1900 pseudo-scientific make-it-up-as-you-go nonsense of Freud and early colleagues, whose real problem to solve and quest to pursue, was to be accepted among physicians as part of the community of "real doctors"... Because at the time and for a quite a few years after, they weren't and it bugged them mightily. (Before, when casting about for a new career focus, Freud hit upon psychiatry, he first was responsible for killing his best friend when he concluded that cocaine was a miracle cure for virtually everything, in fact he regularly took it himself.. he got his ailing friend so hooked and deeply addicted that he ended up virtually or perhaps truthfully and factually, killing his friend. This was the great man who afterward captivated three to five successive generations of psychiatrists. In your case, If the surgery worked, then of course it was the science and trustworthy scientific discipline of the physical intervention and the highly disciplined doctor, of course there would be times when it could go very bad regardless of all best efforts. But if it didn't go well, then somehow, retroactively, it must be psychological, and the result of a personal fault, namely "your" "fault." A really unfortunate part can sometimes come when people in desperation, any of us, can be vulnerable to fall into God worship in the process, which, if you've ever been on the receiving end of it, or spent your life encouraging being on the receiving end of it, hard to resist once bestowed... So very dangerous to the scientific requirement that the doctor includes intensively examining himself as rigorously as everything else in the search for error, before committing the elective surgery knife, or else he has without fair warning to his sacred charge suddenly affirmatively shifted himself back with the witch doctors and his patient ought to know it first. Sure it's incredibly risky engaging any of this, this kind of surgery, so of course one has to really understand how very risky it is in the best circumstance.
Up to now it's certainly seemed to me that this procedure and these people particularly were right for nearly all of us, some of the best hope around. I certainly hope you were not subjected to dishonest selection or distorted interpretive bias and promoting, if so, to the point of faulty screening, or faulty diagnosis, the practice of somebody who thinks he's getting out of this life as and with something better than the rest of us.
If you have the time and inclination, I urge you to explore, by reading, the story and biography of Dr Milton Erickson. I've found along my evolution of disabilities a lot of great succor and sustenance from his story.
I felt so sorry to hear about your experience and how absolutely let down you feel. It seems really strange and unprofessional for Dr J to blame the emotional side of your recovery on the lack of success. My husband has PD and I think all our thoughts have been looking towards this treatment in the future( well I have he’s not so keen).
One of the best helps my husband ever had was holistic and exercises and much more at European Parkinson in Italy. Nothing invasive only exercise, personal physios and advice and help! Their principal has PD. It’s probably too far for you to go and you may have something similar near to you.
My thoughts are with you. I hope you can find a way through this.
the entire medical system is just a money grabbing scam...big pharma's pills and dangerous surgeries...you're better off staying clear of the allopathic system...focus on eating a healthy diet... no sugar or alcohol...all organic veggies and grass fed meat...exercise if able...getting out in nature and the sun...research vitamins like 5htp...b-1..hydrogen water...NADH...I dont take ANY pharma pills and have improved significantly in the past 12 months...if its a placebo effect I dont care...I feel better and thats all that counts...good luck
Have a bit of class dude. Basically every comment youve made on this site has been some derivative of 'big pharma' ranting and whilst it usually goes ignored, it ought to have been obvious that this thread wasnt the place for it.
have a bit of class dude? yes saying dude is very classy...I have as much right to state my opinions as you do and if you dont like them dont read them...now go get your COVIDIOT booster shot...big pharma is counting on you
I am doing much better than twelve months ago...its a trial and error approach using combinations of vitamins...C..B1...ashwagandha...NAC...coQ10... hydrogen water...I use Mercola hydrogen pills...liposomal curcumin...NADH...strophanthus...from Dr. Cowans site...fasting 24 hours once a week...3 days 4 times a year...near infra red light therapy...mostly keto diet...NO SUGARS OR ALCOHOL...daily exercises outdoors in the sun...I live in an area with great sun exposure...drink purified structured water...and finally you really need to manage stress as much as possible...that may be the most important thing to do...so far so good...oh and avoid ALL vaccines they are toxic time bombs...good luck on your journey
Hello Solvang53 ~ I was wondering how you’re doing? Have you changed anything this past year? Are you still taking Mercola’s Hydrogen pills? That’s kind of what I’m curious about. Do you think that water helped and if so in what way?
Thank you for your help and have a fabulous rest of your day!
I had shared the bad outcome of a WhatsApp group member on HU forum and consequently I was kicked out of the group for awaring people of that incident. It's really commendable that you came up with your experience and informed people that FUS is not always a fairy tale and the things may turn the other way around. There are some people who advertise it as a miracle which is not true.
I'm sorry you got kicked out. I wanted to wait until I was sbsolutely sure I did everything I could to try and get better, before publically speaking. I didnt read forums nor read any pd info on web for a full year post op.
Hi Parkie, obviously Sonimodul rejected the MSA diagnosis? Otherwise they would not have gone ahead with the PTT for you, right?
I got the feeling that non-tremoring type like you and I tend to show less benefit from FUS and DBS. Trixiedee is another one without tremors and I wonder how she is doing now.
I’m surprised and disappointed by Dr. J’s attitude towards you post-op. To blame the poor outcome on the patient’s emotional state is not only unfair, but also an absurd excuse to dodge responsibility.
Yes Skydome, Sonimodul diagnosed idiopathique PD. Dr J mentioned last month that if he would have thought I had MSA, he would not have operated. I found that to be a very special choice of words... Almost as if, after seeing the results in person for himself last month, he was admitting it could could be MSA afterall... But thats just my impression.
I’m doing well but symptoms on my untreated side are problematic and after Parkie’s experience I don’t feel like returning to Sonimodul. I’m rarely on this forum as I spend more time on Facebook.
May I ask you a couple of questions while you are visiting briefly as I am not on Facebook? Thank you!
1). If you are not going to Sonimodul for your untreated side, are you going to try an alternative?
2). Do you have dyskinesia on the untreated side? How much medication are you on now?
3). How is your balance when walking when you are OFF? My own walk is horribly uncomfortable and difficult when I’m OFF. I remember that you described yours pre-op as similar to that of someone with cerebral palsy. I think I fit that description when I have my end-dose dyskinesia every evening after my last meds of the day wear off (I don’t want any PD meds for sleep yet). The attack of dyskinesia lasts 20-30 minutes so I try not to do anything during that time.
4). Are you very satisfied with the outcome on your treated side? Have you noticed any regression?
Thank you very much! I wish you all the very best!
There’s nowhere else to go for FUS PTT. My main symptom on my untreated side is dyskinesia. I take 50/12.5mg of sinemet every 2 hours, the same as before the procedure. My treated side has no symptoms except a bit of weakness. And my ankle that had constant dystonia is very weak as the ligaments are blown.
Hi Parkie, I too was wondering how are you going now, I'm very sorry for what you have suffered and I hope you can return to the condition you were in before the surgery.
At this point I am more afraid of the attitude of the doctors than the surgery itself.
I hope and pray that you recover soon, I am sure you will improve.
Thank you for sharing your experience, Parkie. I feel bad for you on many levels. It's bad enough to have had a bad outcome, but to be blamed for it makes things considerably worse. Your experience reminds us all that there is not yet a silver bullet.
I’m so sorry for the treatment you got and the results from the surgery. I do hope you can regain your pre-op status. Thanks for taking the time to post your story.
Thanks for the update. I had the impression there were less side effects . It goes to show. All surgery comes with a risk. At the end of the day one should try everything before FUS or DBS. But some day I will have to choose .
I am sorry about your last hope. I would be even more sorry if you got a similar outcome as mine because nobody had warned that bad outcomes do happen at Sonimodul...
When asked preop, Dr. J repeated what is stated on his Web site:
''0 Bleedings
5 Effects on neighboring structures
16 Neurological worsenings
Effects on neighboring structures were partial and mostly transient.
Neurological worsenings were moderate and mostly transient''
As far as I am concerned, playing with words when stating that neurological worsenings were mostly transient...
Not a single word about Restless legs syndrome, having to redo same side surgery up to 3 times, significant speech degradation or permanent general worsening like mine, when they know these facts very well…
Your determination to keep trying and not report back until you had fully explored your negative outcome is not only thoughtful but inspiring. Thanks for sharing this with us. I will be thinking of you and really hope that your strength of will is your salvation x
Very Courageous Parkie to bring your pain and anguish so publicly to make others aware, not an easy thing to do. I have recently started taking PTT-FUS & DBS more seriously as options for my situation, so thank you and I hope you can at the very least get back to where you were prior to Sonimodul. Thoughts & prayers headed your way.
This is so sad... Praying that you be granted peace that surpasses all understanding, healing and strength. Thank you for sharing your experience. The fact that it didn't provide expected outcome and Dr. J's attitude toward you afterwards gives a lot for us to think about.
I’m really sorry that you have had a bad experience. However I guess there are risks to any surgery and outcomes are not what one hoped for and sometimes can even leave you worse than before. . I’m sure I have heard a few bad outcomes from DBS - and some positives. I think you have to weigh up the pros and cons. Most things in life have a risk element to them.
The doctors attitude is a bit of a worry though. However he seems to have done a great job for loads of people.
Just a very quick goodbye note, as I can barely type by now, to let you know that I will receive medical help in dying Monday, January 15, 2024. Legal here in Canada. I am looking forward to being delivrred from all the pain and total depending/ruining of my husbands life...
Wow. I am not in your shoes so all I can say is that I trust that you have given considerable thought to this decision. Thank you for your contributions to this forum. I wish you peace in the days ahead.
I totally respect your wishes, but I totally disagree with this decision. I hope you make the right decisions, whatever they are for you, because that is what you will be accountable to yourself for in your future life. With respect and friendship.
I know this will offend a few, but it's meant as a deflection technique to say something I believe to be important.This was a joke my dad told me. A man goes to the doctors complaining of excruciating testicular pain. "Doc, it's like my balls are being crushed in a vice faced with broken glass". several appointments later,after multiple painkillers and antiinflammatories, antibiotics, icepacks and others treatments the guy is desperate. "Doc, you have to help me. I can't go on. It's like my balls are being crushed in a vice faced with broken glass"
The doctor explains that the only remaining option is surgical removal. "Ok Doc, it's gotta be - it's like my balls are being crushed in a vice faced with broken glass"
After the surgery he decides he needs cheering up and that he will have a really smart suit made by the top saville row tailor. The measurements are complete and the tailor gives a soft cough and asks
"On what side does sir dress?"
*What do you mean?*
"On which side of your trousers do you tuck your testicles?"
The guy is acutely embarrassed.
"That's private .you don't need to know"
"With respect sir, I do"
"Why? It doesn't matter does it?”
,"Oh yes sir. If you get it wrong it's like your balls are being crushed in a vice faced with broken glass"
I haven't suggested this to anyone else directly yet, but if I were to be that distressed I would have wanted someone to suggest trying Peter Tass gloves first.
I wish you peace, and your husband all that he prays for
That's sort of correct. The official gloves are probably going to be a couple of years at least. But there have been more than a few DIY sets made, including my own. Whilst my condition is much less advanced than yours, I none-the-less experienced very painful dystonia this year- which the gloves appear to have relieved completely (in combination with my medication). Of course, it could be coincidence - and I haven't recommended to anyone else that they try them yet, and it was a bit of a roller-coaster learning curve using them, but given the magnitude of your choice, I would have wanted someone to suggest them to me. Of course, they may not be a perfect replica of the original, but they are not that hard to make ( or rather - get someone to make them for you).
And my main point of caution to those who ask about my experience - namely that 4 hours a day is a huge commitment, not easily achieved, is probably not a factor for you. They are not a silver bullet, and whilst many appear to claim mild relief, there are few if any with experiences akin to Kanwar Bhutani. As "poster boy" for the gloves, he appears to be one of a kind. But they might be a lifeline. Or might not.
I don't want to create a suggestion of certainty of relief. Just hope - if the time for hope has not passed
Take care. I wish you peace and freedom from pain.
I just found out about the gloves yesterday, and i am doing research about "do it youself" gloves, please consider this option if its true and your age is 62 keep the hope.
I am not affected by PD myself but my father, and in the last week due to a covid 19 infection his conditions became worse, this one week of visiting in the hospital etc. was to say not easy but i would never say that a loved person is a burden no matter what i would have to give or to do i would try everything, so i guess your husband will also.
If i am done with reasearch and test the first gloves i would be ready to build the same for you i am living in germany , i could send them then to you by parcel or whatever, but i cant really tell you how long it will take. But please think about your decision.
Thank you for tàking the time to Write such a génerous email but i am now an 80 lbs vegetable suffering from horrific levodopa induced dystona for which no one can do anything.... So thanks but no thanks
Thank you, Hannah, for expressing so beautifully what has been on my heart since I first read “Parkie’s” post.
Nicole, everything Hannah said is TRUE! I don’t need to restate it. But I just want to add a a few things. The first is a prayer written by John Henry Newman that gives me strength to face the future:
“God has created me to do Him some definite service; He has committed some work to me which He has not committed to another.
I have my mission. I never may know it in this life, but I shall be told it in the next.
Somehow I am necessary for His purposes. I have a part in this great work; I am a link in a chain, a bond of connection between persons.
He has not created me for naught.
Therefore I will trust Him.
Whatever, wherever I am, I can never be thrown away.
If I am in sickness, my sickness may serve Him; in perplexity, my perplexity may serve Him; if I am in sorrow, my sorrow may serve Him.
He does nothing in vain; He may prolong my life, He may shorten it; He knows what He is about.
He may take away my friends, He may throw me among strangers, He may make me feel desolate, make my spirits sink, hide the future from me still He knows what He is about.”
He knows what He is about. Trust Him! Please don’t give up. Pope John Paul II, who had Parkinson’s like us, said, “I plead with you – never, ever give up on hope, never doubt, never tire, and never become discouraged. Be not afraid.”
I echo his plea!
And like Hannah said, please know you are loved— eternally loved— by the One who gave you life! And by all your friends here. And even by people you don’t know at all (dozens of my friends and family members are praying for you!).
Praying for God to pour out His grace and love on you. He is real. He will do it.
Ohhh, Winnie, I had to snicker over your “balls in a vice joke”, you certainly are a character, I‘ll say! And bringing a little levity to SUCH a dire situation as Parkie’s, and also suggesting HOPE with the Glove to boot. I agree with Winnie, Parkie, you SHOULD at least, TRY the Glove. You had an offer here by someone, if you’re not comfortable with that, I am sure you could find an engineer who could do it. I did for my friend. If you don’t at least try, how would you know? As had been said here time and time again, everyone with PD is different, SO much so, anything is worth a shot! I wish you peace too. Melodi
My heart is full of tender compassion for you. You don't know me from anyone, but my name is Hannah Beth. My symptoms of PD first began when I was just 34 years old (tremors) and steadily progressed for 8 years (I was 41) before I was officially diagnosed. Before my diagnosis I became pregnant with our 4th child. Complications because of my condition caused early labor and we only had 7 days with our son Anthem before he died.
I am so sorry for what you have suffered and what you are experiencing now. Though a stranger to you, if I was with you in this very moment, I would hold you in my arms and cry with you. It probably would not take me but a moment of looking at you to see with my eyes the incredible value that your life has. Not had but HAS. Yes, even now when words spoken to you like "incurable", "progressive", and "irreparable" hang like a curse over your head. I have never felt such an urgent feeling to help someone. I want to hand you a lifeline. Something to keep you from sinking.
First, I want to say that I don't fully understand what you are suffering, but December 14, 2022, I too was in a place of utter despair and anguish dealing with PD that I was sure I wanted to end my life. I was utterly hopeless. I was in the deepest, darkest pit imaginable. In this place, not only could I not see any possible way out, but I felt 100% convinced that I could not tolerate the intense suffering and pain I was feeling both physically and emotionally even one more day.
I came so close...so close to believing that lie. I really don't believe anything could have changed my mind until I heard these words that were not my own whispered in my heart.
"Your life is not yours to take."
Wow! Really? Who said that? My life is not mine to take? How I wanted to argue with those words. But I didn't. I couldn't. Because I believed them. I knew they were true. I knew that it was not me who gave myself life so maybe I needed to ask the one who created me if He wanted me to end it. It did not take me long to find the answer.
"Before I formed you in the womb I knew you, before you were born I set you apart." Jeremiah 1:5.
A little over one year later, on the other side of the darkness, I am immensely grateful that I chose to believe. Miracles have happened to me since I chose life. Everything I had believed to be my undeniable reality and future have been upended and exposed for what they were. Lies. Being unable to walk does not make you useless. Being unable to speak does not take away your voice. And nothing you can do or say or even believe about yourself can take away the fact that you are loved with an everlasting love. Every part of who you are was thoughtfully planned out before you were even formed in your mothers womb. He has numbered all ofc our days. He has also given us the choice to set our own end dates or trust His end date, for He sees all. He sees what we can't possibly see.
Like me, I am sure you have weighed all your options, considered the statistics, and Jan 15 sounds like the only relief you will ever find from your burdens and the burden you think you are to others. Parkie, I believe your life holds many more days of richness and value for your family, friends, and this online community that go beyond January 15, 2024. I believe you have been chosen, set apart for a life that does not end but is eternal. When I shared your post this morning with my precious children ages 17, 14 and 10, through tears they immediately hit their knees with me as we beseeched our Heavenly Father to intervene for you to bring you hope and miraculous healing. I believe this part of your journey will be your powerful testimony that brings hope to many. If I had ended my life that day, I would not be writing this. I would not be able to offer you this hope. This lifeline that you can in turn share with others too.
Parkie.... my lifeline to you is just one word.
"Ask."
It is simple, but it is all that is needed. When you lay down to sleep tonight and all is quiet, in the stillness of your soul Ask.
Ask Jesus to show you what it is you need to know, what you need to believe. That might be that you ask Him if He is real. If that is a question you have, then Ask. He will give you the answers and a hope that does not disappoint like the world does.
I love you Parkie, and I greatly care about your life. And I know the the One who made us and gave us the ability to love is because He first loved us. I am excited for you because He always comes through! I will be praying every single day for the enemy to be silenced and for you to know the Lover of your soul.
I am believing for you.
With all my love, Hannah
P.S. - Look up "Parkinson's Disease completely healed - Peter Scarborough's Story" on Youtube and hold on to hope. Find some followers of Christ and have them lay hands on you and ask for healing in Jesus name!
" am retiring after 37 years of clinical and research activity in the field of functional neurosurgery. My last 14 years were spent in the framework of the SoniModul Center of Ultrasound Functional Neurosurgery, meeting and treating patients together with a great, efficient and dedicated team.
In spite of all our efforts, it has not been possible to find a solution for my succession. SoniModul will thus have to close end of January 2024. We regret very much not to be able to proceed helping patients, who came to us regularly and courageously, from near and far. A number of peer-reviewed publications allow colleagues to read about our experience and maybe develop further the work done.
Patients in close current interaction with us will be contacte..."
He and the staff are looking for another clinic to work out of. (I doubt they will be able to stay together. Mark also is on the faculty at a local college.)
I'll dig out the comment he put on Facebook.
Marc
Here it is.
"Dear patients and families, I apologize for using your forum (where we doctors normally have no part to play). Yes, I did see the messages about Sonimodul's future. As it happens, I'm employed by Prof Jeanmonod's SoniModul neurosurgery practice, so I can't give out any information about the clinic, even as chief medical officer. As information travels very fast at the moment, and as some people are suffering a great deal, I suggest that people who have or will need more information about my future can join a WhatsApp professional list +41774116443 (Ms Rossi, Mr Moser and Dr. Magara will be connected too). I will inform there as soon as I can. At this stage, I can only provide informations via a private channel.
I read another post on FaceBook by Dr. Gallay saying he and the staff made an offer to buy the business, but it was rejected, I am not clear if SoniModul isn't owned by an investor or by Dr. J. I think it was deleted, but I will look.
Making the decision is the hardest part, I believe. I wrestle with this myself, not in seeking MAID but in deciding not to pursue life prolonging interventions.
I understand your love and compassion for your husband and wish to release him from the role of your caregiver. You've touched all of our hearts. I wish you Godspeed on your journey.
first of all thank you for taking those precious remaining moments to share with us, your fellow PWPs, your decision to leave. It takes a lot of courage to do what you decided to do, and for that, you have my great respect. Also, i see your decision as a last act of love for your husband, as paradoxal that may sound. You gave him all you could. Again, huge respect, takes a lot of strength from both of you.
If it is any consolation, go in peace, knowing that you left us with a lesson in humility, courage and love.
Least i can do - I will set alarm for January 15, 2024, 12pm and will pause to pray/think of you.
Thank you for everything. You are leaving loved and remembered.
I’m deeply saddened to hear that you with your husband have suffered so much. I totally respect your decision. Only you know how you feel. But mostly I wish you a gentle passing surrounded by those whom you love.
I am very sorry for you, dear Parkie. I am sad and also very angry over what happened to you. I will never forget your story.I read online dr. J in Switserland retires this months and nobody is taking his job. They will have to close.
Do you have a link for that info,I would love to read that for myself. It is very surprising because dr j has been training dr galley for years to take over.
You did this forum a wonderful service by bravely telling your story. All too often those for whom things didn't go to plan disappear from view, their experiences unrecorded and unavailable for reference for those that go after them.
Being alive but in constant untreatable pain is not living, in my view. I hope the next week provides some comfort to you and your loved ones.
Right: i know of a few people who are not telling the whole story about their sonimodul expérience, telling only the positive... But then again, i cant blame them: they are being shamed by dr j telling them its their fault....
I am relatively new here and I don’t know you but you’ve obviously touched many people on this forum deeply. I hope that knowing this fact, that you have made an indelible impression on the people who care about you, gives you comfort as you make your courageous journey to whatever is next. I’m sending you a big hug. ❤️
I am new to this forum but just happened to see your post about January 15th. You have been such an inspiration to others on this forum. May Yahweh our Heavenly Father direct your decisions. Your life is so important even in sickness, as is evident just from the people here. Please pray again about this and whatever you do may you find peace and healing. Tears now for you 😭 and I will pray.
A brave decision, but please think it over. There is still hope out there. . . My husband and I have been through some very difficult times, and still going through, but we fight! Don't give up on life, Nicole, one day at a time!
I have just re-read with disgust the way you were treated by this Dr J (Jeckyll and Hyde) character in SoniModul.
I am so angry and it saddens me greatly and I am so sorry you have had to endure the last few years after what this shyster did to you. I call him a shyster because of the way you were treated post-op!
One wonders how many others have had this outcome.
I’m sorry but I do not mean to offend anyone who may have had success with his expensive procedures, but one has to wonder if he wasn’t driven by the almighty dollar! Imagine having to pay the same amount again after a botched job when the outcome was a failure! And one would wonder why after so many years he would just shut shop if his work actually meant something!! Hmm… could it be fear of litigation? It will all come out in the future.
Sorry also that I have raved on so much as the last thing I want to do is upset you, but I just want you to know that all your time and effort spent in exposing this self-righteous man has touched us all!
I totally admire and respect your decision but if you awake on the morning of 15th January and you are unsure about your decision, please know that it is ok to cancel or defer to a later date. You’re not locked in! You are in control and it is totally ok to do whatever you want to do, and when you want to do it! There is no pressure!
Sending thanks for the love you have shown to all the HU members in warning us of the very real consequences!
brave and rational decision ... living in constant pain and grief and having the option to have the agency and be empowered to direct your own life is inspiring. I am so sorry to learn what you have been through and so grateful that you spoke up and shared with this community. That is a gift always. I hope others follow your example and continue to speak about their experiences. Your actions inspire me. I imagine this doctor has been tortured by his own choices as well and maybe it is best that the clinic close. Just hope others learn from this. May you go in peace and May your next leg of the journey benefit from all you have learned and taught.
Parkie you are in a place I worry about being someday having this unfortunate disease. Not wanting to have my family suffer and/or be burdened with my care with no quality of life for me, or them, I’m happy to hear of the availability of the option you have chosen under your circumstances. I wonder if one could travel to Canada as a non-resident and have that option?
A difficult decision as I’m sure this was for you and your family, I’m monumentally saddened by your unfortunate experience and treatment by that narcissistic creep in Switzerland. I was under the impression that they had good doctors and a good medical system in Switzerland. Parkinson’s is bad enough without the added burden of all you went through related to your experience there.
I’m always hopeful for the yet unturned stone that will allow PWP’s reversal, healing, relief, something good, etc and never wanting to give up thinking it’s out there I commend your bravery and tenacity, and am so sorry that you have exhausted your list trying. As others have said, there are no words………..but I will say this, I wish for you and your family freedom, peace and comfort as you cross over and thank you so very much for sharing yourself here.
I dont think all swiss drs are narcissic creeps, i was not lucky, probably was misdiagnosed by alot of "specialists" all over ( canada, usa switzerland...)
I don't understand why you added this information to this particular discussion, but just in case anyone is intrigued by your recounting of the New German Medicine they should be aware how it has been debunked prindleinstitute.org/2017/0...
My heart breaks for how you have suffered. You have faced alot of trials with courage. I just want you to know I'm praying for you every day this week!💗
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