March 11, 2020 FUS PTT & Me; 6 mo... - Parkinson's Movement

Parkinson's Movement

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March 11, 2020 FUS PTT & Me; 6 mos report.

MBAnderson
MBAnderson

That’s me about to be wheeled in with the bracket (very) firmly attached to my head. The white diaphragm, which Dr. J is holding up, holds cooling water that circulates around my skull during the sonications.

You gotta not like Parkinson’s to do this.

I remain completely happy with the outcome and am eager to have the other side done which is tentatively scheduled for the week of March 8, 2021.

PD still feels gone from my left side. No tremor at all in my left hand. No back pain on my left side or rigidity/stiffness. No minor dystonia in my left toes. My walk is pre-diagnosis. My left arm swings fully.

I have a jaw tremor which only appears at night when in bed trying to go to sleep and I still apply my home remedies for constipation.

I have no mental or psychological issues, no depression, no hallucinations, nothing I wouldn’t expect from a 74-year-old personage. My memory could be better, but it’s not bad. I’ve been working on it and believe I have improved it over this past year.

A few friends I’ve met which I had not seen since before the procedure said the improvement is immediately obvious (minimal if any facial mask.) My wife feels I am slightly less steady, but that gait initiation is improved. I cannot say for certain, but I think I have not progressed.

My right hand tremor has worsened since the procedure. There is no way to know if this was caused by the procedure or would be in this condition anyway.

Whenever I rest my right arm on something that blocks the tremor’s full amplitude, the tremor is conveyed up my arm, thru my shoulder and across my torso which has caused my right shoulder to become painful severely limiting the range of motion. I cannot reach out for something in front of me or behind me or above me. It’s hard to find a painless position to rest my arm in. My right hand and arm is of little, if any, use to me. I pretty much have to do everything with my left hand now - which I’m hoping affects neural plasticity. (There’s a rationalization.)

I walk 4 miles/75 minutes every morning and do 30 minutes in the gym every other afternoon. On alternate days I do 45 minutes of HIIT calisthenics led by my VA physical therapist via videos, which I’ll post if anybody’s interested.

My tremor appeared in 09, was misdiagnosed as essential tremor in 2010 and correctly diagnosed in July, 2011.

marc

84 Replies
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Great to hear you keep doing well. I have my appointment to October 7th. Can't wait to reach there.

MBAnderson
MBAnderson in reply to Markbit

You, apparently, are not a US citizen because as far as I know Switzerland (along with the rest of the world) wants nothing to do with us now.

Is your appointment for the procedure or for an evaluation?

Markbit
Markbit in reply to MBAnderson

No, i live in Portugal, Europe, and i'm going to evaluation. Hope they do not close borders again, as covid cases are rising again here in Europe, and my flights and hotel are not refundable anymore 🙄

Trixiedee
Trixiedee in reply to Markbit

I’m going for FUS a week after you Markbit. Im going from England and am also desperately hoping that borders stay open. Good luck!

I am so happy for you Marc. Keep it up.

Good luck on your journey! Please keep us posted as we may be following in your footsteps one day.

Stay strong!

That's great news, Marc. Will you go off your medications for PD once the other side has been treated.

MBAnderson
MBAnderson in reply to bepo

I hope to.

Glad to hear you are doing well, Marc and the majority of improvements are holding up well for you!

Does mag oil do anything for your shoulder pain?

Thank you for the update!

Art

MBAnderson
MBAnderson in reply to chartist

I've been using the other stuff you recommended. Anrica. It helps for a little while.

chartist
chartist in reply to MBAnderson

Hi Marc,

Sometimes the mag oil works better and sometimes the homeopathic Arnica rub works better. If neither one is strong enough, the next strongest is a prescription topical ointment /gel called Voltaren which is based on Diclofenac that you can ask your doctor about over the phone. This one can be useful when you are just applying to a small area such as your shoulder, but I would never use it over large areas of the body as too much can be absorbed and that wouldn't be a good thing. If you prefer to stay non-prescription, there are also other homeopathic oral remedies for pain of various types such as Rhus Tox 30 c or Arnica Montana 30x.

I think Voltaren is likely the strongest of the bunch, but that is the nature of these things, what works very well for one person may be just adequate for another person so there can be some trial and error to get the best pain relief for you. The topical ibuprofen or naproxen lotion that I make is also a consideration and is generally fairly effective and easy to test. Just put a few shots of hand and body lotion in a shot glass, take one naproxen softgel and puncture it with a pointed toothpick and squeeze the contents into the shot glass. Stir this lotion/naproxen mix very well with the toothpick and apply to the affected area. I think the naproxen is slightly more effective than the ibuprofen. The advantage of the naproxen topical is that you avoid the risk of damaging your gut as NSAIDs are known to do and you can reach local tissue concentrations that are higher than the highest recommended oral pharmaceutical dose can. In other words you are mostly limiting the naproxen to the area of pain where it is needed. There are stronger topical options, but the above is a good place to start to try and get better control of the pain.

Art

AmyLindy
AmyLindy in reply to chartist

Fabulous concept!

It’s great that you’re doing so well on the side that they treated, Marc. Just unfortunate that the Swiss Docs were unable to treat your right side at the time. Here’s wishing you great success in March 2021.

Bless you my brave friend !!!

Thank you for the update. It is great to hear your reports can't wait for the next one!

Mogul1

Marc,

Was the cooling water that circulated around your skull, during the sonications for your comfort or protection or what?

Von

MBAnderson
MBAnderson in reply to vwolff

It wasn't for comfort. It was for keeping our skull from overheating which would be a health vulnerability.

Thank you Marc! You and Lena gave us detailed info about FUS. I wish other people who had FUS did it.

Thanks for sharing your story, Marc. I probably shared too much of it in response to another post, but I am grateful to live in close enough proximity to you to enable us to visit in person. As a person who has seen you before and after the procedure, I can attest to the amazing improvements you have experienced on the left side of your body. You are a courageous and inspirational role model for many of us! Thank you for being my friend.

So glad things have improved so much!!😊

I must admit that I confused you with Dr. J from your previous post below? Now I must correct my mental image of you. : )

Very glad to hear that there hasn't been unexpected setback. Thanks for the updates.

healthunlocked.com/parkinso...

MBAnderson
MBAnderson in reply to rescuema

yeah, I was spoofing you. A few commenters in that thread called me on it.

rescuema
rescuema in reply to MBAnderson

Yes you got several of us very confused. lol

I'm glad to hear you continue to do well. Thanks for keeping us updated. It's hard to understand why the use of this technology isn't becoming more widespread.

So pleased to hear about your progress, thanks for updating us. I too wish this treatment was more widely available but it sounds so specialised and down to Dr J s long term experience and knowledge.

MBAnderson
MBAnderson in reply to Zella23

It is not something that other neurosurgeons could not easily enough learn. I think it's probably easier to perform than DBS. I suppose it's because the neurologist community in the US don't believe his outcomes. If some enterprising neurosurgeon in US wanted to adopt this technique, he could set up a dedicated clinic and do 1 of these a day for the next 10 years and retire.

Zella23
Zella23 in reply to MBAnderson

And the U.K. too!

Hi Marc

Thank you so much for keeping us posted.

About your memory:

"My memory could be better, but it’s not bad. I’ve been working on it and believe I have improved it over this past year"

what work have your been doing?

Thanks

MBAnderson
MBAnderson in reply to Parkie-

Nothing fancy. Just what you might expect.

I came to realize I had an expectation that I could not remember things I needed to. When I did away with that negative expectation, I found I was remembering a lot better.

I asked my wife to read me a list of of words which I would then repeat back to her. When I could repeat back 15, we quit. I found a couple exercises on YouTube that I played around with.

I don't believe the exercises helped as much as my developing the confidence that if I need to remember something and focus on it, I can.

None of this helps me remember things from the past. When and where was Linda Ronstadt's last concert? (I'll never know. Boo-hoo.) Instead, I have a better memory for the things I'm encountering in the present.

What is a sonication treatment?

When a person is in the MRI machine having the FUS procedure, a sonication is when they turn on the sound waves. They're only turned on for a few seconds at a time so they don't cook the entire substantia nigra. Typically, a person has 6 to 12 sonication's over the course of an hour or 2.

Thnx

Never heard of such treatment.

Is there more experience with it?

Which hospital do perform sonification?

Ruud

Ruud,

Click on my picture and go to my profile. You will find several threads there which provide a lot of information.

I still find it amazing that you wanted your right hand fixed, and got your left side fixed by mistake , due to poor communication about which side of the brain controls which side of the body

Takes me back to my eye surgery experiences where they draw a big arrow in black marker pen pointing at the eye to be operated on to ensure no mistakes. Once, after a stitch replacement op I had driven to myself, I arranged a daring escape, and drove home

Forgetting I had a large black arrow drawn on my forehead!

Glad to hear its going well. Fingers crossed for March

“got your left side fixed by mistake”

I missed this conversation. Is this true?

I thought I read the Dr. simply decided the order of procedure despite Marc’s own preference?

Parkie-
Parkie- in reply to rescuema

That’s also how I recall it.

MBAnderson
MBAnderson in reply to rescuema

You got it right. (It was more matter of expectation then preference. My preference was to do whatever he thought best.)

rescuema
rescuema in reply to MBAnderson

Thanks for verifying. I couldn't imagine such a mishap.

No, it was not a mistake. I must not have been clear.

I expected them to do my left hemisphere because the tremor in my right hand was worse and I'm right-handed, but because the tremor started in my left hand, Dr. J believes that the right hemisphere is mostly controlling the progression and he wanted to stop the progression rather than stop the tremor my right hand.

Dr. J spent 2 1/2 hours with us before the procedure during which time this was discussed explicitly.

It would indeed be beyond amazing for somebody to travel round trip to Switzerland during a pandemic and spend that kind of money to allow that kind of mistake to happen.

Grumpy77
Grumpy77 in reply to MBAnderson

Good, confirmation that FUS procedure actually stops progression (not just symptomatic). Means symptoms won't return even after 5 years

Sure. I was pulling your leg. But now you mention it, how does it work that the progression is controlled more by one side than the other? And how does the FUS control progression?

Kia17
Kia17 in reply to WinnieThePoo

I guess you are right Winnie and the statement by Marc that “progression is controlled by right side “ doesn’t look logical instead the reason for that is because the Hyperdirect pathway which acts as handbrake is functioning in right hemisphere.

sciencedirect.com/science/a...

google.co.uk/amp/s/apackofn...

MBAnderson
MBAnderson in reply to Kia17

The doctor said my progression is controlled by my right side, i.e., he did not say everybody's is.

Kia17
Kia17 in reply to MBAnderson

Your Doctor was right in choosing the Right hemisphere because the right brain has more influence in inhibitory function via hyperdirect pathway than the left hemisphere.

MBAnderson
MBAnderson in reply to Kia17

Thanks, Very interesting. I'm reading your links now.

Kia17
Kia17 in reply to MBAnderson

Hyperdirect pathway’s function become worse when PWPD are under stress or tired. That’s why you feel more clam and have better sleep and have fluid movement after your operation.

Kia17
Kia17 in reply to MBAnderson

See this post Marc;

healthunlocked.com/parkinso...

MBAnderson
MBAnderson in reply to Kia17

It's quite possible the answer to Poo's question - why does FUS stop the progression, is in this link, although it's well above my pay grade. Interesting nonetheless.

Riochard,

I asked him the same question (during our telephone consultation) and at that time he said he didn't have time to answer but referred me to his website so you'll have to ask Dr. J or read his website.

I don't know the answer. I'm just passing on what he said.

I believe, however, that since he has done several hundred of these and does the hemisphere that corresponds to the side the tremor started on and is claiming that it stops the progression, I'm inclined to believe there is a solid rationale for choosing which side and that he is not misrepresenting the data.

marc

PS. 1 of the other things which he says which is also scarce in the literature is that tremor is the result of over excited signaling. I believe I've only read that in one other place.

Well done Marc! Your progress is very impressive. I hope the other side will also be as successful

The great thing about FUS is that it's non-invasive, so there is no blood, no risk of brain infection... and yet as effective or even with better results than invasive surgery

Keep going strong friend

Hi Marc, am so glad you are doing well.I am very hopeful you have excellent outcome when you do the other side, Am i able to p.m. you a question about FUS results or to p.m. you my cell #?. i live in madison,wi. GO packers!! thanks Marc for the FUS reports!!!!!!!!!!!!!!!!

MBAnderson
MBAnderson in reply to Drumme

You are welcome to send me a private message. Or you can send me your email address or cell phone number if you prefer.

Drummer67
Drummer67 in reply to MBAnderson

Hi Marc, mlmorgenthaler@charter.net. 608334 6070.thanks.i learn a lot from your posting.

Trixiedee
Trixiedee in reply to Drumme

Drumme, I have a friend who lived in Madison until a year ago, also with Parkinson’s - do you know Miguel?

Drummer67
Drummer67 in reply to Trixiedee

No sorry.where are you from? When were you dx? I was dx2 years ago.my email is mlmorgenthaler@charter.net. my cell is 6083346070.mike😊😊

Trixiedee
Trixiedee in reply to Drummer67

I’m in the UK and was dx 11 years ago. It’s a shame Miguel moved from Madison as he doesn’t know many PWP. He’s in LA now.

Drummer67
Drummer67 in reply to Trixiedee

Keep in touch Trixiedee

Thank you Mark for the information which Will be beneficial to most of the members here. One thing in your post which nobody has commented on, is your exercise regime. As a young person I feel ashamed of not doing this much exercise. You are inspiration for us!!

I should be doing twice as much as I am.

WOW

God be with you

you are my hero

So pleased for you and I hope the right side is as successful! Cheers!

Thank you Marc for being a voice here also! You right arm/hand sounds exactly how my left one was presurgery and 100% of that is gone so I think you'll be good once side two is done. I'm jealous of your walking - my right leg dystonia has now messed up my knee tendons so usually 10 minute walk is about all I can do (no meds normal walk but get toe dystonia after about five minutes /with meds twisting painful leg dystonia - either way can't win) - still super thankful as I could only do about 100 feet with a cane presurgery. Weirdly enough my worse two limbs were my left arm and right leg presurgery but my convulsive quality tremors were only on the left (no more of those!) so we treated the left even though I am right hand dominant.I see want that border to open for you, me and everyone else! Open, open, open! At this rate you might get back before me. My next attempt is mid November.

And yes since folks will ask - my left side is still awesome! 17 months post surgery.

MBAnderson
MBAnderson in reply to lenamm

Did your tremor start on the left side?

I'm surprised, too, that my walk is as good as it is since I thought walking required both sides of the brain. I am of the impression that movement symptoms that don't show significant improvement are those that require both sides the brain.

"Convulsive." That pretty much describes my right arm tremor.

Mid-November, huh. You know I hope you make it, but were me, I would not buy non-refundable tickets just yet. I believe I said a month or 2 ago, I would give mid-November 50/50. I give it less than that now.

To believe the odds have or will improve, one would have to believe there will be a substantial shift in federal policy from the very top -- enough to cause a complete reversal of behavior of 40% of the populace to cause a significant reduction in the contagion rate in the US and I give that 0 possibility.

John Hopkins University now predicts 410,000 dead by January 1 and says, "the worst is yet to come." If that's true, that means November will be worse than September. Death toll may go from the current 1200/day to 2000/day by Nov.

410,000 is more than the number of American soldiers killed in World War II !!!!!

coronavirus.jhu.edu/covid-1...

I don't mean to be discouraging, but it's better to be pleasantly surprised than it is to get your hopes up and be disappointed.

marc

lenamm
lenamm in reply to MBAnderson

I had nothing in my right side until about October 2018. Yep not buying tickets yet - border has to open first. I figure worse case by spring 2021 I'll get there.

PS - they asked if I wanted a photo right before surgery - I declined as I really didn't want to remember that part. You are braver than me!

MBAnderson
MBAnderson in reply to lenamm

When I look at the picture, even today, it looks frightful.

chartist
chartist in reply to MBAnderson

And here I was thinking you were working on a design for a modern shade hat or a 5G radiation blocker or both in one! 😉😉😉

Art

MBAnderson
MBAnderson in reply to chartist

ha

Thanks for the update Marc, I’m so pleased for you. I’m crossing fingers and toes that I’m able to get there in a month.

MBAnderson
MBAnderson in reply to Trixiedee

Is Switzerland letting UK people in? I think they are.

Trixiedee
Trixiedee in reply to MBAnderson

Yes they are right now but we have to quarantine for 2 weeks on return and I’m not sure I can find anyone to accompany me who can take 3 weeks off work.

MBAnderson
MBAnderson in reply to Trixiedee

Now I do remember -- this next trip for you is for the actual procedure and not an evaluation.

Hi Marc, congratulations for your success with FUS therapy. Will this work for all types of PD? And for how long will the new status last?

MBAnderson
MBAnderson in reply to OREOLU

No, they do not do the procedure for all subsets of PD. Their selection criteria is on their website (SoniModul) and it is in the paper they published which is a thread under my profile. I believe they have some people who've gone symptom-free for 6 years.

OREOLU
OREOLU in reply to MBAnderson

Thanks.

Here is a video for FUS on both sides at one month interval done in Spain.

youtube.com/watch?v=Lt7BINE...

Trixiedee
Trixiedee in reply to ion_ion

They are trialling bilateral FUS in the UK now too but only for tremor.

imperial.nhs.uk/about-us/ne...

This link did not work for me. What is the title of the video?

This is the doctor in Spain.

youtube.com/watch?v=Lt7BINE...

also, I think subthalamotomy is a different target.

ion_ion
ion_ion in reply to MBAnderson

Is working from YouTube if you do a search for FUS in Spain - dr Jose Obeso. For some reason the video cannot be called from an outside link.

So amazing and inspiring to hear... thanks as always, for sharing, Marc

My dog had to wear one of those when he chewed a hole in his butt.

I sent you message a couple of days ago, but have not heard back, Are you collecting emails for Sunday Zoomference?

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