Yesterday's post by Jim C. reminds me my 6 mos report re FUS PTT from side 2 is due. (Not as exciting as yesterday's, tho.)

[MBAnderson]

I had the other side done April 28, 2021.

Yesterday's report from Jim C. is certainly encouraging. I felt the same after my 1st procedure.

Not much has changed since my 3 mos report.

My tremors remain gone, as is back pain, & slight dystonia in left foot. My walk has been good until recently I've started shuffling due to what I believe is peripheral neuropathy spread throughout my legs (which is probably unrelated to PD. Does anyone know?) Ugh! (Waiting to see a neurologist for diagnosis.)

My only serious issue remains gate initiation and despite all that has changed for the better, that gets a lot of attention. Makes me wonder if FUS PTT resolved everything but a sniffle, if that wouldn't cause me to focus on it obsessively.

Believe me not having a tremor in either hand is a big deal - I keep having to tell myself.

I consider myself 75% relieved of PD. (Maybe that should be higher, but there is something about the human condition that causes us to focus in what's not working.)

Marc

[Hidden]

"there is something about the human condition that causes us to focus in what's not working." you are right. Thanks for reminding us to be more positive.

[camper1]

I have neuropathy due to B12 deficiency which was diagnosed first a couple of years before Parkinson’s disease, also had a biopsy of my leg which showed small fiber nerve disease. I don’t know if they are related to PD or not.

[MBAnderson in reply to camper1]

Have you found anything that provides relief?

[camper1 in reply to MBAnderson]

Yes, Gabepentin 600mg, i had to take it 4 times per day for a few years and I now only take one a day.

[MBAnderson in reply to camper1]

what allowed you to reduce the dose?

[camper1 in reply to MBAnderson]

When I started taking the Gabepentin I was in horrible pain along with numbness, the doctor kept upping the dose until I had symptom relief, after taking the 600 mg 4 QD for many years I started backing off to see if I could tolerate it, It took a while to get to the one a day I still have the numbness but the pain is much better and tolerable on the one a day.

[jimcaster]

Thanks for the update, Marc! You, lenamm , Trixiedee , Marcomando , and all others who have undergone PTT are a great source of encouragement and inspiration for the rest of us.

[Zella23]

Thanks for posting an update. You are so right about people focussing on what doesn’t work rather than what does. To be relieved of your tremor must feel so good. My husband suffers with his back and that causes him more issues than the PD! Difficult to treat as the cause is related to degeneration. I hope your back issues get sorted.

[chartist]

Hi Marc,

I was just wondering if you feel that FUS PTT had a psoitive or negative impact on your balance?

Art

[MBAnderson in reply to chartist]

My balance is good now. I don't remember how it was before the 1st procedure, but I seem to think it was worse.

[Skydome]

Thanks for sharing, Marc! Music to my ears 😊.

[Rabilo]

How about your stiffness and slowness? Have they improved too?

[MBAnderson in reply to Rabilo]

Stiffness has definitely improved and slowness has too, but maybe a little less so.

[Mapleshade58]

Our neurologist insists that the foot neuropathy isn't caused by PD. A recent MRI shows a LOT of spine degeneration and stenosis which is probably the cause. Foot Dr says no cure for the neuropathy but did prescribe a cream with gabapentin in it that provides relief. Also, finishing up 24 visits to pain clinic for senaxes (electrical stimulation like a very powerful TENS machine) which seems to be helping a lot.

[Drummer67]

So glad things are continuing to improve Marc😊

[Grumpy77]

Thanks for sharing and congratulations! 75% is an A-grade improvement anywhere 👍🏾👍🏾

To what extent have you been able to reduce your medication, totally, partially (what %) or no reduction at all?

What's your trajectory going forward... continuous improvements or stable?

What's the overall cost for both sides in USD?

[MBAnderson in reply to Grumpy77]

Grumpy, Cost for each side was $38K USD (due to exchange rate) and about $5K in expenses per. I don't take a lot of C/L because I'm not responsive to it - so no change. I believe I have continued to improve somewhat over the past 3 mos, but I'm guessing my brain has almost caught up with the changes by now, so minimal improvement from here on.

[Grumpy77 in reply to MBAnderson]

Thank you! 👍🏾