MRigFUS in Switzerland - 9 months update

[Markbit]

If i wrote this post 3 days ago, i probably wouldn’t be so positive about it, it was an hard day, with difficult controlling tremor most of the day. But it was a bad day among very good days. Today was a virtually no tremor day. I got used to this roller coaster now, but i had a quite pleasant but also stressful weeks. Pleasant because i’m back to school, working as IT manager after the summer holidays, and also because i have, together with my wife, opened up an hairdresser and fulfilled her more than 20 years dream of having her how space to work. Stressful because all this causes stress, off course, the start of a new school year, the stress of opening a new business, and to add to that the stress of managing the relation with an ex-wife that keeps talking with me as i had no disease and no difficulties. Difficulties that are still very present everyday, my motricity still sucks, still dragging my right foot (my right side is my untreated side), still have slight tremor along the day, usually lasts a few minutes and goes away, still have dystonia, among another bunch of things. I do not have my old life back, in fact i don’t think i wanted it anyway, but i have a much more manageable life now. I can run again (in the morning my foot doesn’t drag), so keeping my 5-10 kms 3 times a week, i can drive, i can work, not the same way, but i’m working, i have just finished one of my goals to this year (the hairdresser), planning to open an air B&B until the end of the year, and have another two things planned that i would like to do this year, so 14 years of parkinson did not take my energy and my will…yet. So more in detail, my left side keeps going very well, almost no tremor, no dyskinesia on both sides, urinary urgency came back a bit, softer voice and a bit messy speech, choke more frequently, doing small manual work is still hard, but i drill holes in the ceiling in the top of a stair, brakidnesia is often boring, i shift gears when driving very slowly, so i don’t drive fast. Apart from that i think i live a pretty normal life now. I plan to go to Switzerland to make an evaluation by the beginning of next year and see if i’m a candidate for side two and start to dig the money to do it. If my untreated side became as my treated side, i would have great life indeed. I keep eating healthy, doing exercise, socializing everytime i can e trying to stay as much positive as i can. Doing things that you love helps a lot. So, hoping to keep this way, or to improve, who knows…

Current 3 + 1/2 sinemet 100mg; 2 amantadine 100mg; 1 mucuna capsule; Vit D 5000 ui; vit B1 HLC 1000mg; 2 omega3 gel capsules

I increased amantadine from 1 to 2 capsules, following my neurologist advice, a seemed to stay more stable.

A video of me working at school, unboxing the new monitors for the IT classroom at 11 am without any meds yet

youtube.com/watch?v=KJCLaUO...(Not working as expected?)

[Seamus6]

Thanks for taking the time to update.

Many will identify with the task in the video. A tricky job for PWP) I thought you managed it really well, much quicker than I could do (with half the years diagnosed!)

A really honest, inspiring story 👍

[Markbit in reply to Seamus6]

Thanks Seamus!

[Grumpy77]

Well done with your progress.

If you don't mind... what age were you first diagnosed?

[Markbit in reply to Grumpy77]

Hi, i was diagnosed at 35 😐

[gginto]

Great to hear you are doing well after the FUS.. Keep up with the exercise , eating well, no stress etc.. Also driving stick..I'm impressed! will keep in touch...

[Skydome]

Thank you for this comprehensive update, Mark! I wish you continued improvement in all aspects of your life. Your movements are faster and more fluid than mine before medication in the morning.

If I may ask, which of your current symptoms are new, i.e. symptoms that have only appeared since your FUS PTT treatment? Thanks!

[Markbit in reply to Skydome]

Hi Skydome, think all the symptoms were here before, but some were gone for good, like dyscnesias, some other like dystonia and tremor are largely reduced, what i notice now more are walking (dragging right foot, but only in the afternoon) and eating some words in my speech (it was happening anyway before the procedure) and softer voice (it also depends on the time of the day), but no really new symptoms that only appeared after the procedure, only some are more noticeable!

[Skydome in reply to Markbit]

Thank you, Mark! Your response is very reassuring to me.

[Rabilo]

Has the procedure effected your speech?

[Markbit in reply to Rabilo]

My speech was affected even before the procedure. It is more noticeable now. Don't know if it was agravated by the procedure or not, probably yes, but i'm able to comunicate like a normal person, most of the times i have to repeat what i say, my voice is softer now, but also, it already was before the procedure.

[Jaygee1 in reply to Markbit]

Yes.

[Zella23]

Thanks for your detailed update. You certainly live life in the fast lane and I m pleased to hear you are doing so well. Impressed with the video no sign of any issues, my husband finds working with those types of jobs very difficult now. All the best with going forward with more treatment if it’s decided you follow that journey.

[Markbit in reply to Zella23]

Hi Zella. Sometimes to me his hard also, mainly when medication wears off, but most of the time i can do my work with low difficulties. But get the coins out off my pocket in the supermarket lane sometimes can be very upsetting. I'm waiting for the one year evaluation to see if will worth the risk off a second FUS intervention. If i could be sure that my untreated side would become as my treated one, i wouldn't think twice, my left side is very very close to normal, but it's a brain surgery anyway. Just knew of someone who got worse after a FUS intervention in Spain (that's why i said before that the team experience was one of the factors that made me go to switzerland, i trust that team).

[Despe]

Wow, Mark! If I didn't know that you are a PWP, I would have never guessed it. You look like a normal IT person as far as I am concerned. Your video is very inspiring.

My husband was an IT Manager (Cyber Security), but he cannot do anything with computers manually now. He had actually built his own computer. He now reads his email and downloads programs and movies, pays his bills and communicates with his doctors via Patient Portal.

Best wishes for continuous improvements.

[Markbit]

Thank's Despe, being better is really encouraging to do new things and don't let be caught by apathy. I went trough a fase like that, although i never quit of searching for pleasant things to make me fell alive. Positive attitude i think that is one of the things that was most valuable in my recovery 😀. And doing things like this

Hairdresser

[Despe]

👍

[MBAnderson]

Congrats Marco. Keep up the good work.

[Markbit in reply to MBAnderson]

Thank's Mark. Hoping that you're better now, and that you can keep improving!