#54: MRI guided Focused Ultrasound (FUS) for Parkinson's Disease

hi and welcome back to the secret life of Parkinson's I'm Jessica krauser and I'm very excited to be back with Brian Baker yay you're back welcome back from your DBS clinical trials stuff whatever research yes but um aside from DBS we get to learn about something else today something else yes there is something else out there and we have a special guest with us Mark Whitman hi Mark hello how are you good how are you I'm doing well thank you coming to us from Maryland um but Mark is going to talk to us today about focused ultrasound or Fus um Mark actually reached out to us um via just from the from the podcast and watching and watching um Brian's story and Roz and all of our discussions about DBS and he pointed out that we have not touched on ultrasound which we have not and um and Mark has gone through a clinical trial even though there is it is FDA approved to do the one side um but he's part of the clinical trial that did the bilateral focused ultrasound so again Mark welcome thank you so much for joining us um so let's before we get into the focus ultrasound tell us about yourself about your Parkinson's diagnosis Journey sure I was diagnosed in 2009 so I with a young long said Parkinson's has been quite a few years I'm 60 years old today uh not today but uh I'm it's my birthday today so so you were diagnosed 2009 yes and uh you know it was I progressed my symptoms weren't too bad for many years but uh in 2021 I guess it was I was I had a I exercise has been a big part of my my medication if you will I do and I had a carcinoma removed from my leg and at the time I couldn't exercise so my symptoms got worse significantly worse uh and uh uh it was time that I had to do something and my wife and I had the year before we had decided to change neurologists at the time because uh with the with uh covet and things that were recording with that and it's difficult to get an appointment with by uh with my neurologist and we really liked her but it was a time that uh we've always tried to uh stay with uh you know someone who's on The Cutting Edge Cutting Edge and so we made the decision to make a move and uh I prayed about it and thought to you know what uh you know where should I what should I do who should I go see and and I did a search that I found out about Focus ultrasound at that point and Dr Fishman at the University of Maryland was uh the doctor that I found that could accept me and uh that's that's how it started wow so did you was he happy with where you were on medication or was he the one that brought it up or were you interested in something no I've I've brought it up uh he was okay with sending my medication I was taking uh right and his son and still do uh but uh like I said I was dealing with this uh other issue with the question about my leg and it just really it inhibited me from being able to exercise like I had been so I knew I had to do something because my symptoms had gotten divorced and uh that's what I we talked about uh DBS and focused ultrasound and I just decided that you know DBS is the is the gold standard if you will I mean that's you know that doesn't change focus is a good book it's like a sentence a good alternative I believe in uh you know at the time uh it was I I really didn't feel like I wanted wires uh coming down in my brain and didn't wasn't exciting about having a pacemaker put in my chest and uh so he said to you know which way do you want to go and I decided right away to go with focused Ultra staff that was uh right before Thanksgiving of 2021. and uh you know I came home and uh that day and uh I think it was the next day they contacted me and and and one of the managers of the clinical trial contacted me and I get started uh with preparing for the for the to be to participate in the trial so what is focused ultrasound for those that don't know what the procedure MRI guided focused ultrasound and it's they use the analogy of uh if you're burning a leaf on the on a sidewalk you take a a magnifying glass the sunlight gets creeped out to the through the to the magnifying glass it burns the uh yep burns the leaf so so that's you know using that analogy I guess as an example that's how it works it's they use the focus after Saturday they shave your head uh my hair hasn't come back here as good as pride has but uh you know the uh they put a a Halo of some sorts on your head and they screw that into the into your head or to hold it in place and then you're you're bolted onto the table I guess that fits into the MRI and then they they target a certain area and they do one side at a time my first my first time I my first signed was done January 5th 2022 and uh you know that took it was someone awarded an ordeal me I promise it was took six hours to do the first time which was a little longer than normal but it was because of my blood pressure was cut up and it married a good bit and uh took a while to get it done but it was it was uh you know I was awake through the whole thing and uh sorry so are they like I'm using the burning analogy and I know it's it's probably a little bit extreme but are they doing that for six hours well it's the sonication and they uh they targeted area of your brain that they were certain area that they're targeting they use the MRI to Target and and then they'll they'll still alert you to Taylor's decided we're gonna do a sonication and they they're really numbing your a Target area in your brain okay and you know so they're they're they're targeting that area today these zapier hit you with this medication and then they wheel you out and they'll tell you hey how you know they test the results of that so you kind of go back and forth back and forth exactly does it hurt no it doesn't hurt but it's hot it's you can feel the heat and they also warned me out and I'm curious Brian if you noticed this with the uh with the DBS but uh they uh when they when they Sonic each you get to feeling that and they told me to expect this that you're doing backflips so I kind of envisioned myself doing a backflip in my brain that's that's hard to say that but it's it was a perfect and they told me to expect it because I think it's next to an area of your brain that deals with with uh your equilibrium and you know becoming busy and that sort of thing so yeah I didn't have anything I didn't experience any of that yeah like it made you did it make you like nauseous because it was like that I I it could but I did not I did not get nauseous but uh yes I think some people do and then so you waited so you did the first side and then they didn't do the second side right away and me that's correct they waited six months and they do that because the clinical trials or the safety and efficacy of the procedure and um I guess they they through testing they understand that they take six months to really make sure that you're going to be you know it'll be safe to do the second side so they want to make sure it's safe to do the second side yeah yeah exactly exactly so did you have like with Parkins or with DBS we the first time I did it I had like what they call the honeymoon stage was about a week where I had like no symptoms did you have that yeah same thing yeah I did yeah what was your biggest symptom like what did you see immediately go away well I I was Trevor dominant um for Parkinson [Music] was very prominent for me I had a lot of dyskinesia and uh I this is It's like a a second chance it's really I'm very pleased with the outcome uh it uh I was uh with a friend of mine having breakfast this is a several months ago and and we were talking I said you know it's like when I used to have Parkinson's they're basic I could buy that I don't even think about it Parkinson's disease wow and uh you know that's that's life it's been life-changing for me how long does it last well that's a good question I don't know that because it's new you know there's people who had just one side bilateral it's new but I've I don't know I think it's I'm my expectation is similar to what I've heard about DBS which is about five years uh or longer hopefully um I've also heard from uh clinics that does uh DBS and and uh focused ultrasound for for essential tremor that uh that uh you know they don't they're not doing it uh DBS for essential tremor anymore you're only using Focus ultrasound because they're they've since they've seen it lasting much longer using focused ultrasound the results of it are they is it is focused well actually that's a good question for you too Brian so what is DBS what did they say DBS is for like is it is it four more so like with Tremor or dystonia or like whatever did they say anything I think with the DBS my understanding is that they just they charted different parts of the brain as far as contact points for the electrodite yeah and then depending on what your symptoms are and then what about the focused ultrasound is there a specific symptom then is it Tremor dominant Trevor dominant yeah that's what I'm saying as well as uh now the dyskinesia has been a big issue now part of the thing that went into my decision was the all the the focus Ultron is now reversible correct so once it's done it's done that's correct but because it's something that they as I said they they start out they don't cranked up the heat right away you know they they start slow and they really it's nothing that they talk about there's nothing that they can because they start at such a low you know heat level effect you know that they're it's very safe that way they just and they creep it up until they're they're sure they get the right spot then they do a sonication that's cleaning the they're creating the ablation of the cells in the brain so I know somebody um that um I used to box with he's in Ohio um and he had just I think the one side done and I want to say he was he was actually like in a wheelchair for and he's he's young he's only in his 50s or 60s but I think he was so it was so hard for him to walk um that he was either using a walker or in a wheelchair and he had focused ultrasound done and it was he like walked out that day it was like a miracle wow and I believe he said now he did a couple years later he did get DBS so can you have focused ultrasound and then do DBS yes but you can't do it the other way right so you can't so you're screwed so Brian can't get the focused ultrasound now because he had DPS correct that's my understanding yes okay interesting so how was the second time around much shorter but uh to be quite honest I feel like the the first time which is my right side my brain left side of my my body and talking to this you do uh I felt the first side was the results are better than the second side and I don't know why that is but it just seems like it's I have I still have a slight traveler in my my right side uh but uh it's not near what it was so I'm I'm just really thrilled with them yeah so what activities were you like most excited to get back to doing or doing something that you haven't done in a while because Tremors were hindering you know I didn't know that at the time but my son and I have a my son's grown now and he's he's he played college baseball but we threw all his life as a youngster we would watch Field of Dreams before opening day of baseball and then we'd go out and have a catch and I could throw the baseball I didn't notice it right away but the years have gone by I couldn't throw the baseball or catching baseball like that one time could and after the first procedure I picked up the baseball and I threw it and it was very adorable to me like wow they get so that was really cool so that's one thing that that really I wasn't even expecting it Dr Fishman my neurologist said you know yeah that makes a lot of sense because that's what Parkinson's is you know the way your muscle activity is connected together to majoring in baseball or catching a baseball very easy and we just did uh our our we watched the movie and they've had our catch last week last Saturday for for this year's baseball season so that's awesome that was it was good it's been really a neat blessing for me but I I think of things that I'd like to go skiing again I used to ski a lot yeah it was skied I had to ski this year I don't know if I'll get to that or not but uh I would I wouldn't mind trying that again because I'm a big part of what I did that's great so what do you recommend for people out there because I actually have um you guys probably hear me talk about it a lot but I have a group of young onset women that I talk to and they're actually you know they're all over the United States and uh one of them brought it up actually earlier this week and I'm like ah funny you asked that I'm I'm interviewing somebody this about it so um you know for those that might be interested you know what can you tell them or where can you point them to to maybe for them to learn more watch out first I go to the focused ultrasound organization or Foundation at fuss.org uh or the University of Maryland I don't work for University of Maryland but man they have done a great job and they were such a a great team to work with I just really Dr Eisenberg was the surgeon who did it 85 years old I believe yes surgery this was awesome I'm so glad that you reached out to us yeah it's great because it's not one one thing doesn't work for everybody no so it's right yeah yeah it's an alternative to what you've done and I see you met with some people who've had DBS and they're very excited about the results it's Brian you looked very very comfortable from uh you've done DBS now and I guess you have you've had it turned on correct am I correct there correct yes you've had it on for like six months yeah okay and you no longer have that uh DBS Parkinson's fog I guess is a way to put it yeah the brain fog kind of went away right away yeah yeah is that the same for you like you yeah absolutely yeah I did I to we came there for my first flight I went out for sushi and used Chopsticks nice it's fun to do you know and I sent a video to my to the surgeon and to the doctors and said hey you guys thanks a lot that's great they've done a great job um my last question for you is um with DBS they started saying you know it shouldn't be looked at as a last resort you know kind of get ahead of it type deal is that the same thing with focused ultrasound like if you get it earlier is it better or do you should you wait until you're more symptom yeah you know that's a good question I don't know I've heard that question to ask about PBS I've done I I I'm not sure I would see it I think it would hurt at all to get it done early but uh you know I don't know okay we'll have to we'll have to check into that yeah this is great mark thank you so much um really appreciate you reaching out to us um you know I think it's a huge Testament of you know patients we like to learn from other patients so um you know anybody else out there who has a story or wants to educate us about something please let us know so again mark thank you thank you for having me appreciated it's it's a little bit of hope that patients would have Parkinson's gonna you know they can experience DBS or focused ultrasounded it really is like there are days that I don't even think about having Parkinson which is crazy to think that after you know dealing with for many years like you all have in it right it's a second chance well that's actually a great way to end with our last 30 seconds is you don't have to look at Parkinson's as the end right there's so many things out there we've now talked about DBS focused ultrasound medication exercise other therapies that are out there educate yourself learn from others talk to others and see what's best for you as always consult with your doctor but thanks again for tuning in [Music] foreign [Music]

Channel: The Secret Life of Parkinson's

Views: 12,387

Keywords: focused ultrasound, fus, dbs, deep brain stimulation, tremors, parkinson's, parkinson's awareness, parkinson's disease, young-onset, yopd, dyskinesia, MRI focused ultrasound

Id: FCdIX13DaI0

Length: 20min 6sec (1206 seconds)

Published: Thu Mar 16 2023