FUS PTT Surgery. 6 months update

[Markbit]

After 6 months things look bit more stable. I still have some issues, and sometimes it is still hard to accept that i still have Parkinson’s. 6 months gone, and gone all my dyskinesia. Still have some tremor, 90% solved on my treated side, about 80% on my untreated side, slowness it is still one of the hardest to deal, especially when off meds, but still not having off times. Fine motricity is also an issue, it seems that my brain is still recognizing the limits of my body. Some lack of strength, but i have been lazy doing my weight lift workout. Also have some small speech issues, but had already also some before surgery, and soft voice remains, but easier and more on the afternoon. Walking it’s not easy also sometimes, except in the morning, that is quite normal, on the afternoon i tend to drag a bit my untreated leg (right one). This are the bad things, but…

No off times, except for some sleepiness after lunch, no dyskinesia at all (this is priceless), dystonia is about 40-50% than my worst, urinary urgency completely gone (except for some random episodes), no brain fog at all, excessive drooling controlled (some random episodes very rare). Rolling over in bed is not a problem anymore, and neck pain and rigidity are completely gone also. One thing that i discovered recently is that my excessive sweating is gone. It’s very hot on the summer where i live (we easily reach 40ºC) and i used to soak 2 or 3 t-shirts everyday and now is gone, back to normal sweating again. Hurray!

Motivation is not superb right now, but my mood is good, i think is a normal adaptation to the situation, after a period of extreme excitation, back to my full time job in a school, working at about 80% (not teaching). Back to running again, after a 3 weeks down because of a fall running (not a balance issue, just distraction, lots of runners fall on that spot) where i probably fractured a rib, but restarted last week and i have been running an average 5-6 kms everyday, one week now. Tomorrow i pretend to go back and try 10 kms…

As i said before, it´s not a cure, but to me is working very well, my life quality has suffer a huge improvement, i do not feel like a DBS cyborg, the felling of freedom is huge also. Dr. J. told me i would feel improvements all over the first year, and so far he was right. Really putting on the table to treat the other side, if i have such a good outcome as on my treated side, i would be a very close to normal person. Very grateful to the whole team.

47 years, first symptoms 14 years ago, DX 13 years ago

Currently on 3x-3,5x sinemet 25/100

2x amantadine 100

Omega3

Vit D 5000 UI

Vit B1 HCL 1g

Mucura pruriens 1 capsule with the first sinemet

[Astra7]

Sounds like a great success. 🙂🙂. Gives me hope.Thanks for letting us know.

[Markbit in reply to Astra7]

Thank you, you're welcome.

[ion_ion]

The speech issue is a little scary and I heard other people had it after the second surgery. I'm anxious to hear Marc Anderson report, too, after his second surgery.

Thank you Mark and I wish you continuous improvement.

[Markbit in reply to ion_ion]

Thank you. Speech is a little disturbed, but it was already before surgery. Maybe e bit worse now, but with little interference in my life. I chew words a bit more, just like i choke also a bit more. Maybe muscles are a bit to much relaxed in my mouth. But i can deal with that perfectly. Does not bother my social life.

[ion_ion in reply to Markbit]

Mark, what about the stress impact over your life? We know the stress is amplifying the symptoms; is it still happening?

Thanks.

[ion_ion in reply to Markbit]

Marco, probably you missed my question above. I'll be very grateful for an answer.

Thank you.

[Markbit in reply to ion_ion]

Sorry, just missed! I try to reduce stress in all i can. Of course it's much easier now because i fear less for the future, and i try to keep an active but calm life. My job is not stressful, i went trough a divorce that was a bit stressful and still causes some tense situations and then my tremor skyrockets, but i try to manage it. But Dr. J. told me that ocasional stress is a good thing, probably is a way to test our reactions to life problems, he told me to avoid long term stress, i think he means a stressful job, a stressful relationship, those who keep us under stress all the time.

[hindle1245 in reply to ion_ion]

Hi mark uo had the second surgery in y

[hindle1245 in reply to hindle1245]

Sorry about that I pushed the button to sone I was saying that I had the second surgery in February and my voice is very week but the overall outcome is great and I heard they have rehab for that plus I’m going in for what I call a tuneup. Thanks

[Markbit in reply to hindle1245]

Hi Hindle. Did you have it at Sonimodul? What did improve in the second surgery? What were your main symptoms? Thank you?

[hindle1245 in reply to Markbit]

UCLA is where I had it done there a very good hospital as far as my symptoms I had a list of things going on like no strength on my left side , dragging my foot tingling in my foot when I drove now the only thing I really have is a stutter step which is annoying and my voice is going and a little fog in the head all this after my second surgery but I think the specialist can work some of that out so thanks for letting me ramble on.

[Juliegrace in reply to hindle1245]

Did you have DBS?

[Hidden]

Your example is inspiring and uplifting to me! 13 years post diagnoses and you are returning to working. That is incredible! And running 5-10k! I’ve had a rough morning and you just lifted my spirits so so much!

[Markbit in reply to Hidden]

Thank you cclemonade! I never stopped working, althoug that in the last years i was probably doing 30 to 40% of my normal tasks! Be patient and strong do not stop believing and searching and you will find your way, just like i did mine!

[Hidden in reply to Markbit]

Your attitude and tenacity are an excellent example.

[Missy0202]

so encouraging to read! Wishing you continued successes Mark!

[Markbit in reply to Missy0202]

Thank you!

[MBAnderson]

Thank you, Marco. Congratulations on your continued improvement.

[Markbit]

Hi Mark! Thank you! fingers crossed for you also!

[Kwinholt]

Markbit, Sounds like a success and better quality of like. I am on my last appointment evaluation to be approved for DBS , and my neurosurgeon plans to do both sides at the same time . I am more positive about the outcome after my appointment with the neurosurgeon, I was focusing on the negative stories , which you have to be realistic. It is awesome the FUS was a success for you. Hopefully I won’t feel like a DBS cyborg if I’m approved. We will see. I’m very optimistic. I also look forward to doing my marathons again. Take care. Karen

[Markbit in reply to Kwinholt]

Hi Karen. Really hope that everything goes well with you. I choose this way because i have considered that was my best option available, but i am perfectly aware that is not possible or available to everybody, and we have to make our decisions with what we have in hand. DBS probably would have be my choice if i were not aware of FUS or if my parents didn't help me to finance, and i'm also aware that is still a very new procedure and very experimental, with some risks, but even so i'm glad i did it. Never did a marathon but hope to do some day 😀

[Seamus6]

Thanks for taking the time to share - a nice, balanced summary.👍

I'm impressed with the running, it's given me a fresh impetus 🏃

[ConnieD]

Do you have a bit of dyskinesia and is that why you still need amantadine? Thank you

[Markbit in reply to ConnieD]

Hi Connie, I do not have any dyskinesia at all. I keept amantadine because my neuro advised me to and because when i tried to reduce it my braquidnesia got worse... I'm trying to cut from 2 to 1 now... again.

[ConnieD in reply to Markbit]

Thank you for the reply!

[Despe]

Mark, best wishes for continued improvements! You sound very excited and you have all the reasons to be. Attitude is everything.

Please keep up us posted.

[Markbit in reply to Despe]

Hi Despe. Thank you. You are right, attitude i think it has been my biggest weapon!

[Zella23]

So pleased to hear this, you must be so thrilled at the improvements that clearly are continuing. I saw your post on FB it really gives all people with PD such a boost to hear of your success with FUS. Thanks so much for your detailed post and hoping to more hear about your progress in the near future. Brilliant 🤩.

[Markbit in reply to Zella23]

Thank you Zella. I will try to keep an update of my situation 😀

[PalmSprings]

Really happy for you!

[Markbit in reply to PalmSprings]

Thank you!

[Art_lover45]

Maybe I am a tad obtuse but what is FUS PTT surgery please. Very happy for you nonetheless!!!!!

[lenamm in reply to Art_lover45]

pallidiothalamic tractotomy by focused ultrasound - it is an ablation surgery for PD.