I had today my 3 months phone consultation with Prof. J. (one month later). He saw my videos, with and without levodopa e said that i was "very close to normal". Indeed, sometimes i feel close to normal, not everyday, not every hour, but especially in the morning i feel like that. I am able to run again, not as before and only in the morning, but i run. And i have a good mood, and i am hopeful for the future. Still have good and bad days, but so different then 4 months ago. No dyscinesia at all, just that is priceless, no on-off times, tremor is about 90% gone on treated side and about 70% on the untreated side, althoug that i have days that is more uncontrollable. My neck pain is gone and it keep like that. Hand fingers and foot fingers dystonia was completely gone after the surgery, came back 110%, now reduced again to about 30-40%, such as urinary urgency, almost normal now. Rolling over in bed difficulties were vanish, now back 20-30%, been at 50% for some time. New thing after surgery, lack of sensibility, witch i notice especially driving, i press the accelerator but the car doesn't accelerate, because i can't feel it, like i am still relearning the limits of my body. Slower reactions, witch i notice especially driving also on shifting gears up and down. I choke a bit more also, my speech is more intermitent (no brain fog, just as if my mouth could not respond to what i think when speaking) and my voice is softer. All this issues are more noticeable when levodopa wears off, close to normal on levodopa peak. Prof. J. told me those will get better over time. Back to work at about 80%, but previous 2 weeks at about 120%. Moved from house and did the move by myself (almost everything) and i'm transforming an house to make an air b&b (did the drywall all by myself), so considering everything i can say i'm pretty well for a 13 years Parkinson's guy, very glad for the choice i made, even against my neurologist, who wanted me to do DBS (i am going to see him this month). It has been not a walk in the park, still have bad days, but also have very good days, like now, i'm writing and my body is silent, no shaking, no "dancing", calm and peaceful.
47 Years, first simptoms at 34, DX one year later
PTT FUS in January this year
Current:
3 and 1/2 sinemet 25/100 IR
2 amantadine 100
2000-5000 IU D vitamin
500 mg B1 Vitamin HCL
2 omega3 gel capsules
Image from exercises asked by Prof. J.
Written by
Markbit
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My untreated side is now slower then my treated side, more rigid, what impacts in my walking, running, and exercise in general. I love running, but i'm afraid of creating lesions due to the impact in my leg on my untreated side when running.
What great news, so glad your treatment went well and you are continuing to improve. Such a positive outcome and I wish you all the best for the future. Thank you for sharing your journey and results, it’s lovely to hear all about your experiences, and definitely gives people with PD hope for the future.
What is PITT FUS? Why didn't your dr want you in to have it. Will you have the same procedure in the future if you have returned symptoms. Where did you have the procedure done. Any side effects? I hope you have continued success
FUS-PTT stands for Focused Ultra Sound Pallido Thalamic Tractotomy. It is a brain surgery made with ultrasounds, no brain opening, no wires, with me it was a 2 hours procedure. It's a technique developed by Prof. Jeanmonod in its clinique in Switzerland, who has treated some peoples in this forum. It is still a very unknow procedure, my neuro did never ear about it, so we wanted me to go on dbs. It is a single procedure (twice if you treat both brain hemispheres) and according with the doctors experience and data available to date, treated symptoms do not came back. Side effects are for some people speech and voice issues.
Where did you have the procedure done? What was the cost? Do you have to qualify? What were your symptoms? Were all your issues resolved?thanks so much
Search for ptt or fus in the search box and you will find valuable information from others. My surgery was in Switzerland, it costs 35.000 swiss francs per side, plus hotel and trips, google sonimodul. My main symptoms were tremor, dyscinesias and lately dystonia, among a lot of others. It didn't solve al issues, but reduced a lot almost everything.
I never cease to be amazed by how often you're wrong and still you are perfectly comfortable questioning things you obviously know nothing about.
No, my time did not decline even a few seconds and no need to time every run.
Once a runner establishes their speed (over the course of several years,) it is accurate enough to measure distance by it. In other words, I could run for 70 minutes over a course I had never run before, then measure the distance (usually) with a car and it would always be exactly 10 miles.
PD showed up after I quit running.
26.2 miles X 7 minutes/mile = 183.4 minutes or 3 hours and 3.4 minutes, but I've given up on you getting things right - even simple calculations.
"No, my time did not decline even a few seconds and no need to time every run.'
Seriously? LOL. Get real for a change.
#1 Running times decline over 25 years for everyone. You are not the exception. What you might have run when you were 30-35 is not what you ran at 55-60. who are you kidding? I assume you are kidding those who never ran. Average decline for most recreational runners like yourself is at least 1% a year, or in your case, 25% over 25 years. It is a result of aging.
Therefore, your average decline would take your hypothetical one time 7 minute mile pace to an 8:45- 9:00 mile pace by the time you quit, or close to a 25% decline over 25 years. Welcome to reality.
#2 100 kilometers or 60-65 miles a week is HIGH mileage (you were running almost a half marathon EVERY DAY). 25 years of that mileage, day in, day out, and almost everyone ends up a cripple or too injured to run on a daily basis. You are not the exception. Far from it.
#3 You obviously never ever did run consistent 7 minute miles over 25 years because if you did, running a sub 2:45-3:00 hour marathon or sub 1:30 half marathon would be nothing special. You would know that because your were running a 16K every day in 70 minutes supposedly!. Instead, you simplistically looked at a table which gave you a 7 minute per mile pace equivalent of 3:03 for the marathon.
Nice try, but I'm not going down another one of your rabbit holes.
By the way, your PD didn't begin "after" you stopped running. You were down the PD path before that. Trouble is, exercise doesn't do much to mitigate 1) drug induced PD, 2) oxidative stress induced PD, 3) pesticide induced PD, or 4) life style induced PD.
You probably had all 4 at onetime or another.
P.S. Waiting for your Z scores on your pre/post DatScans. Or did they conveniently skip those?
I have written only three posts on this forum and you have responded to two of them. In both it was not to debate or inform, only to criticize. You have a huge curriculum, as is posted in your profile, but there is missing one or two things in there. The first is humility, and the second is empathy. Nobody cares if you are very intelligent, as nobody cares if Marc was a great athlete. This is a supportive forum, where most people are common people WITH Parkinson's disease. You don't even have parkinson, you may live near to someone who has, but you don't experience the despair, and the lack of empathy you have been showing let me think that you can't really feel it as most caregivers do. You came to this forum to show of your knowledge by attacking forum members? We don't need this here. I have a huge respect by Marc, as i have by Lena, and others who had the courage to share their experiences about their personal life and helped me to find my way trough this disease and to make my decisions. They gave me great hope, and that is the hope i try to give when i share my life story here. They didn't have to do it, such as i don't, but they choose to, and that takes a huge amount of courage to expose the personal life and the disease. This is not a medical forum, to show of your medical skills, it is a supportive forum for persons who have a very debilitating disease and are looking for the best way to manage their lives. So if you want to comment my posts, please don't be rude. We already have to many stress in our lives. Thank you.
I responded "directly" to you on one(1) of your posts, but only because YOU first responded to a comment I made to MBA. "I don't see your point" you wrote to me. Correct? So I responded. You never replied back. You asked for a response so please don't play judge and jury with me.
Yes, I don't like the misinformation, the claims of a miracle dug around the corner, the phony clinical trials , shabby case studies, and the nonsensical Youtube videos. I don't play favorites, nor do I wear rose colored glasses. "Support'' doesn't always come in the form of blinding oneself to reality. If that is your decision fine. It isn't mine.
"Caring" takes many forms. One size does not fit all. I f I didn't care, I wouldn't be on this forum or coordinate 2 support groups for the past 11 years on a volunteer basis. You know anyone else who does it? I don't think so.
"Despair" is an individual,INTERNAL CHOICE. As some one who works with stage 3/4 cancer clinical trials for a living, it isn't a universal feeling. It is up to you. You think you have it bad? Believe me you don't. Trust me on this one. You don't. Your time frame to eternity isn't 6-12 months or less.
MBA and I go way back in a series of tit for tat on several issues. Try not not make it into something it isn't. You are blowing it all out of proportion. He's a big boy and can take it. He doesn't need you or someone else to protect him.
Relax and good luck with your FUS intervention. I sincerely hope it helps.
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Increasing my dose of B1 after 4 years and 7 months
PTT - Pallidothalamic Tractotomy
