PTT 1 year later. This will be my last PT... - Cure Parkinson's

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PTT 1 year later. This will be my last PTT status report.

MBAnderson profile image
30 Replies

For those of you considering this procedure, there is a plethora of posts under my profile.

I had FUS PTT March 11, 2020, on the right side of my brain & had the left side done April 20, 2021.

I learned about the procedure on this HealthUnlocked forum. So much thanks to you Lena and Rebekah. Had it not been for you two, I would not have done it.

Bradykinesia is often, but not always, detectable.

My voice has continued to worsen especially the past few months and is at the point of where I do not quip as much as I otherwise would which is well appreciated by those around me -- I’m sure. At the time, I do not recall the procedure affecting my voice and so do not attribute this to the procedure, but instead to my continuing to progress.

I had been getting weaker, especially noticeable in my quadriceps, which, for the past 6 months I attributed to my continuing to progress, but as my strength is coming back after surgery for spinal stenosis, I now consider it due to that. I mention this because weakness is a situation I’m dealing with and it’s too early to know for sure what is happening. I am getting older (76,) however, I expect to regain strength when I am able to resume going to the gym next week.

Gait initiation is my only real problem, but along with that comes some balance issues and my walk is awkward, although I am working on smoothing it out.

I had serious tremor in both hands. I used to have to spend 45 minutes doing deep breathing exercises every night just to fall asleep. What a nightmare. My hands remain 99% tremor free which, by itself, made the procedures worthwhile.

Back pain was a daily problem which remains gone as does minor dystonia.

At my most recent neurology exam, last week, the neurologist said he could detect no stiffness or rigidity. Wee-ha.

The procedures caused no deficits and relieved me 80% + of my PD symptoms. 2nd best decision I’ve made in 15 years.

Marc

30 Replies

Thank you Marc for sharing your experience. You have decreased my anxiety about my future and I am very grateful.

Fumaniron profile image
Fumaniron

So happy for you, Marc! Thank you so much for sharing your journey with us.

Bolt_Upright profile image
Bolt_Upright

Thank you for this update, and for all of the wisdom you bring to this group Marc.

jimcaster profile image
jimcaster

Thanks for the update, Marc. I am very glad and relieved by the positive experience with PTT which you and several others have had. I also want to thank you for consistently reminding us that we are more than just Parkinson’s patients. Your best decision of the past 15 years was to marry your lovely wife. Beyond that, you have reminded us that not all ailments we have are related to PD. At least some of your issues relate to stenosis and other factors. I really look forward to having lunch with our wives at W.A. Frost & Co. this Spring or Summer! You have been a great role model for me, not just as a PwP, but as a person, since I joined this site four years ago.

MBAnderson profile image
MBAnderson in reply to jimcaster

"Your best decision of the past 15 years was to marry your lovely wife. " You got that right.

Thank you for your kind words. Looking forward to seeing you two in June.

Sydney75 profile image
Sydney75

Thank you glad your spine surgery went well.

Zella23 profile image
Zella23

Pleased to hear how well you are doing. Thanks for your positive update.

xy-zt profile image
xy-zt

Thank you for your support and encouragement. Very glad you are doing well.

jeeves19 profile image
jeeves19

Thanks Marc 🙏

hmm777 profile image
hmm777

That's a very encouraging update, thank you for sharing your experience.

Missy0202 profile image
Missy0202

I’m so glad to read your report Marc. A glimmer of hope for all of us! Continued good health to you!

SAGoodman profile image
SAGoodman

MBAnderson I am so happy to hear a good report, and very much appreciated you sharing as we don't hear enough wins in your community. Truly appreciate everyone on this forum!

PalmSprings profile image
PalmSprings

Thanks Marc for all that you bring to this forum. I personally appreciate your contributions. The Fus PTT sounds like a real success. I would love to be tremor free and with no stiffness. Cheers my friend!

NorskPike profile image
NorskPike

So happy to read your update. I had not seen any postings from you for a while and was concerned about your health. With my best wishes for continued improvements and enjoyment of life. Ragni

Despe profile image
Despe

Thanks for the update, Marc! Glad your PTT procedures have been successful. Best wishes for continued improvements.

You are an inspiration to all HU members.

Redginger profile image
Redginger

Thank you for sharing, Marc. I'm so glad things are going better. Thanks also for all you do for us.

albachiara2 profile image
albachiara2

I may be repetitive, but I too would like to thank you for sharing with us this experience that opens a path of hope. I wish you a speedy recovery

vwolff profile image
vwolff

Thank you for your continued support and encouragement for my upcoming Clinical trial. Your final report is encouraging. I look forward to Thursday (3-31) and Friday (4-1) evaluation and testing. I hope they accept me.

MBAnderson profile image
MBAnderson in reply to vwolff

You're a shoe in.

JANVAN profile image
JANVAN

Thank you very much, Marc !!!

And very useful you mentioned about stenosis, because for me that's also a reason for a lot of strength loss by some of us.....

Marc, I just reread your profile bio. It should be required reading for everyone. For the past month I’ve fallen off the exercise wagon and slipped up on my diet more times than I want to admit. Your bio just gave me a much needed kick in the pants to get back to what I know is best for me. For the sake of privacy, I was going to message you. But Im stating it here instead.

My worst symptom or problem is anxiety, dread and fear. Since your post about your FUS success, when I feel my twitching fingers and toes and I have a wave of dread and anxiety that causes what I believe is a rush of cortisol and subsequent wooziness, I literally tell myself now, “if it gets really bad, I will get FUS like Marc. I can handle this. Golden Years Now!”

My Dad has stage 5 PD. Sadly, he is an example of everything one should not do. Visions of his current state torment my heart and mind daily.

You have contributed greatly Marc to giving me a new vision of what my future will be like.

I am so extremely and sincerely grateful to you!

Despe profile image
Despe in reply to

CC,

May I ask if your dad is on any supplements or just meds? Thank you!

in reply to Despe

Up until recently the only supplement was D and turmeric He always refused

Now he has declined to the point of not knowing what he’s taking so at this very late stage a couple supplements have recently been added. He eats terribly and doesn’t exercise

I want to add that he recently started Citicoline and even at his very late stage it has helped him. He doesn’t know. And my Mom didn’t know. She visited him in the care home and she was surprised by his improvement. The only change was Citicoline

Despe profile image
Despe in reply to

I am so happy to hear that Citicoline has helped him!

MBAnderson profile image
MBAnderson in reply to

cc,

Thank you for your kind words.

I think we all wrestle with our level of self-discipline. I know I do. It sounds, though, like you are well motivated to not follow your dad's example. Good for you.

When were you diagnosed?

Marc

in reply to MBAnderson

November 2020 Mount Sinai in NYC when I was 45. Then Rutgers in spring 2021.

No DAT, I declined.

MBAnderson profile image
MBAnderson in reply to

Oh, just recently. You still have 5 years of the 'honeymoon' period left before you need to think about PTT. It'll be FDA approved and covered by insurance by then.

At your age and recent date of dx, if you take the necessary steps, you'll be fine.

in reply to MBAnderson

Thank you Marc. Sincerely, thank you

MBAnderson profile image
MBAnderson in reply to

How are you?

pdkid profile image
pdkid

So happy to hear, Marc!! Thank you for the update :)

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