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

[MBAnderson]

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

[Hidden]

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

[Fumaniron]

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

[Bolt_Upright]

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

[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 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]

Thank you glad your spine surgery went well.

[Zella23]

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

[xy-zt]

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

[jeeves19]

Thanks Marc 🙏

[hmm777]

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

[Missy0202]

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

[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]

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]

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]

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]

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

[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]

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 in reply to vwolff]

You're a shoe in.

[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.....

[Hidden]

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 in reply to Hidden]

CC,

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

[Hidden 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 in reply to Hidden]

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

[MBAnderson in reply to Hidden]

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

[Hidden in reply to MBAnderson]

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

No DAT, I declined.

[MBAnderson in reply to Hidden]

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.

[Hidden in reply to MBAnderson]

Thank you Marc. Sincerely, thank you

[MBAnderson in reply to Hidden]

How are you?

[pdkid]

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