My journey with Parkinsons and FUS

[cheryldc]

The folks on Health Unlocked seem so much more knowledgeable than I could hope to be but I feel I should share my recent experiences with Focused Ultrasound with this dedicated group.

I was diagnosed in 2011. I lived in Washington DC at the time but couldn’t find a Movement Disorder doctor in the DC area. My husband and I had a friend who was on the board of Mt Sinai so at her recommendation I scheduled an appointment with an MDS specializing in Parkinson’s. He was very conservative and didn’t want me to start on C/L until my tremors became intolerable. I started on C/L in 2014. I suffered through the initial nausea but eventually I was able to tolerate it. At the same time I began my C/L I participated in a trial at Feinstein Institute for Medical Research. The purpose of the 5 year study was to see how PD alters cognition in brain regions and how current therapies (C/L) affect those regions as well. The method used to measure was PET scans, neurologic and psychologic exams as well. I never heard the conclusions related to this trial.

During the past 1 ½ years I was a participant in a trial of Bilateral Focused Ultrasound of the PTT area of the brain. The FDA’s procedure used was very similar to the one used at Sonimodul in Switzerland. My right side was completed in April of 2022 and my left side was completed 1 week ago. The FDA had paused the trial from going forward because they were concerned about the negative impact on speech. They studied 1 person from each of the trial sites and concluded the impact on speech was transitory (less than 3 months) so they gave the go ahead to resume the trial involving the 2nd side in September of 2023. I am so pleased with the results. My right hand had significant tremors and my right leg had developed dystonia and I had developed dyskinesia as well in my right foot. I also had developed rigidity making it difficult to turn in bed. On the left side I had tremors in my left hand and foot. When I came out of the procedure I no longer had tremors in my left foot and hand. I can turn in bed without the pain that goes along with rigidity.

The Focused Ultra sound is not an easy procedure to go through but I am ecstatic with the results. My trial will be completed 1 year from now. I’m sure the FDA will approve the procedure. I want to encourage everyone with advanced Parkinson’s to seriously consider this life-altering procedure. If anyone has questions about the details of the FUS procedure please feel free to contact me via Health Unlocked or via email.

[JohnPepper]

It's a pity you have been through all that and are still suffering with the PD. Have you notheard what FAST WALKING does for us? I was diagnosed in 1992 and i 1994 I was worse and started doing FAST WAKJING and by 1996 I was FREE of my PD! Trty it, it really works!

[JohnPepper]

It's a pity you have been through all that and still have PD. I was diagnosed in 1992 and after taking meds for 2 years I started doing FAST WALKING and in 1996 I was free of my PD. Others have done this so it really doies work but, you have ot put something into it!

[JohnPepper]

It's a pity you have been through all that fore nothig! I was diagnosed in 1992 and took pills for 2 years and then I started doing FAST WALKIG. After 2 more years I was PD-FREE! TRY IT! You only have to walk for a maximi=um of 1 hour, every second day. NO MORE & NO LESS!

[JohnPepper]

Ir's a pitry you had to go to asll of that trouble and not be PD-FREE. I did fast walking for two years and was then PD-FREE and have continued doing it, every second day foor one hour, which is no problem. I am still fit at 89 years old and was diagnosed with PD in 1992,

[cheryldc in reply to JohnPepper]

Hello John, yes I've followed your posts over the years and commend you on your recovery. I was an avid runner from 2009 until 2017 ( I ran 4 to 5 miles each day). In 2017 ended up with a fracture in my greater trochanter and was forced to give up running. I have Osteopenia and was taking bisphosphates at the suggestion of my doctor. My orthopedic doctor took me off of the medication as he believed the medication was creating brittle bones.

I've been walking 4 miles each day now but I do believe the running and the walking have slowed the progression,

[JohnPepper in reply to cheryldc]

You MUST LEAVE ONE DAY between strenuous exercise sessions, otherwise you don't give your muscles time to recover and you are burning them up. Be patient! do waerm-ops and gentle exerccise on other days!

[healthabc]

Thank you so very much, Cheryldc, for providing your rich experience with FUS. Much appreciated. Keep us updated please!

[cheryldc in reply to healthabc]

I'll be happy to keep you updated.

[PalmSprings]

Thanks Cheryl for sharing your story! I so appreciate you taking the time to write about this journey. I wish for continued improvement and for a healthy tomorrow. Cheers Christie

[cheryldc in reply to PalmSprings]

Thank you, Christie. I hope your efforts to participate in a Stem Cell trial materialize.

That's the next big horizon of hope for all of us Parkies.

[lenamm]

I am so happy it looks like PTT will pass trials in the US! And so happy for you! I had surgery one 4/19 and two 12/20 in Switzerland and am still doing super well! I hope it is available to more people in the future! Are you in the facebook group? If you are - would you be willing to post there or can I share your post if you are not?facebook.com/groups/6095308...

[cheryldc in reply to lenamm]

Hi Lenamm, I sure hope the bilateral PTT procedure will pass the FDA's scrutiny.. More important is that it is covered via Medicare. 2 big hoops to jump through. Thank you so much for offering to share my post with your facebook group. Please feel free to do so. I'm hoping my hair grows faster this time and I am happy to hear your plosive results are still holding strong.

[cmc2 in reply to cheryldc]

Thank you Cheryl for spreading your good news and encouraging others to take the plunge. Best wishes for your recovery and a long and healthy future. Chrissy

[cheryldc in reply to lenamm]

Hi again Lenamm, can I ask you a question ? Did you feel a little unbalanced after your 2nd procedure and if so, how long did it last? Also was your speech affected?

It seems my speech is a little slower and my diction is not as sharp. If you had the same experience how long did it last? My doctors keep reminding me that my brain is rewiring and these problems won't last forever.

[lenamm in reply to cheryldc]

I had no balance issues but I do have some speech issues. I did a month of speech therapy which helped. I still have the issues three years later but a small price to pay for the improvements. Almost everyone I know has speech issues after side two.

[cheryldc in reply to lenamm]

Thanks so much, Lenamm, AT least I know what to expect. I'm sure I'll end up needing speech therapy. I agree...the benefits outweigh the aggravation of having to attend speech therapy.

[Erniediaz1018]

thank you for sharing. Most encouraging testimony. I’ve heard in a while.

[ZOOM4522]

Cheryl, I am so very much interested in the FUS procedure you recently experienced. I am 77 years old and extremely frustrated with trying to get some relief for my Parkinson's. I have not walked on my own in about three years.

Thanks In Advance for Replying, Tommy

[cheryldc in reply to ZOOM4522]

Hi Tommy, please feel free to get in touch with me directly. There is a messaging capability within the Health Unlocked umbrella that we can use. I'm happy to answer any questions you may have.

[seamusw in reply to cheryldc]

Where did you have it done?

[seamusw]

how are you doing ? I had bilateral treatment in Switzerland with mixed results, have significant vocal issues

[cheryldc in reply to seamusw]

So sorry to hear that. I’ve had speech issues as well. Going to speech therapy