This appears to be his most recent update.
It's dated one month ago and it's his 10th
p.s. He says he has NOT started B1 yet ... but expects to ...
p.p.s. He says he doesn't trust doctors anymore. "Pill pushers."
p.p.p.s. He's cut back his meds from '8' to '4' pills per day and
cut back use of his gloves because he's so pleased with his condition.
I’d like to contact Pat. Anyone have his email?
I am not sure what this is but this is what is on his video site on youtube- obviously not an email address - could it be twitter or instagram? I am on neither of these but here it is:
@patriddleparkinsonsjourney
thank you ❣️
i recall (dimly) that his email was posted in one of my previous posts ... and ... that his email was also posted somewhere in his YouTube videos
he has another video about 2 wks ago
youtube.com/watch?v=psJn5db...
great job posting this! I looked for his 'newest' and only found #10 ...
Hi , As a matter of interest , are you using or building one of the DIY PD Gloves ? And if so, any effects ? Thanks.
I’m in the Synergic lab trial in Eugene Oregon. I got my second pair of gloves today 🙏🙏
I'm sure you've posted - but what do you think of the 1st pair? Eager ears want to know 
I’m nearly certain it was the placebo/control. So … lots of hours, no effects. But now I’m nearly certain I have the effective protocol
pardon me for being so personal, but do you have tremors? (I have THOUSANDS of 'internal tremors' daily/nightly)
yes, i have both debilitating arm tremors and mild internal tremor. I’m hopeful the gloves can help with that
again, pardon me for inquiring further as I'm uncertain as to 'what' I have.... I had my first "visible" tremor with my left thumb on june 20, 2021 -- 99.99999% of all my tremors are "internal" after more than 2 years
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i went to see a neuro/MDS last sept 2022 ... His exact words after his examination:
"The good news is that you don't have Parkinson. The bad news is that you don't have Parkinson."
.... NO explanation from this cold-hearted S.O.B. .... and I was too puzzled/ scared to ask him ... "WTF do you MEAN???"
That was the last time I ever wanted to see that jerk again!
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So if it's not too personal ... How did your tremors begin? Internal or external?
And how long did it take to become, in your words.... "Debilitating?"
Glad you're getting the treatment now! Hopefully it works, not just for the rest of us, but for your sake!!
I'm tremor dominant, so how it works on your tremors will be interesting.
It's a long time to sit each day without being able to do something with your hands.
pardon me for asking this .... (since I have 1000s of internal tremors, virtually no external tremors) ..... Did you tremors start "internally" or "externally"?
my arm tremor begins in my frozen shoulder. I’m starting to have a tremor in my mouth/ teeth. The internal one used to feel like a huge grinding machine inside but it’s actually become quieter, that was the first tremor.
Mine started externally. Very shortly after I had internal too. Even before the hand shaking when I walked that was the start, I had tremor when I sat with a leg unsupported. Desire to twirl my jewelry that I now realize was self-treatment. Some dropping things in the a couple months before.
Do you have any of the other 3 categories needed for diagnosis?
How did the doctor say you didn't have PD? Datscans are good at ruling in some variation of PD. But can be negative for a while early in it's onset. Also can miss some of the variation of Parkinsonism.
Has anyone been willing to give you medication to test it?
thank you for your feedback
i have 'other' symptoms that are not in the other 3 categories (stiffness, gait problems, cognition issues -- fortunately i have none of that)
1. mild and sporadic left face numbing throughout the day -- only lasts a few seconds, usually (like when a dentist injects you before he works on a tooth)
2. foot/ lower leg cramps -- (i can't be certain if that is related to PD or something else)
3. eyelid tremors ... "sensation something is in my eye" ... very sporadic daily, just seconds in duration ...
but THOUSANDS of internal tremors (90% in forearms ... the other 10% in hands and anywhere else in my body) .... usually very, very mild and most noticeable when I try to fall asleep
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my UNcaring neuro/MDS ordered blood work --- which i never did
he also offered a DatScan but said any results would be inconclusive
this was last september ...
i've got worse the last 60 days and i'm trying various remedies ...
i've got about 40 supplements in my stack ... which i cut down to 20 ... then about 6 ...
just to see if that would have any effect .... not really
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the one home remedy which seems to work very well to quiet my internal tremors is my home sauna -- if i'm consistent (at least 2 times a week) my tremors are noticeably ... LESS
it is an infrared sauna that heats at 125 degrees ... I'm in it for 90 minutes ...
after a freezing shower... i'm very relaxed ... and when going to sleep the internal tremors have greatly diminished
Have you tried Neupro patch? It helps my restless legs and probably the tremors. (Maybe the rasagiline that helps the tremors but they were a bit much on R, and adding the patch has made it all more livable.)
Datscans can give definite positives. So it's worth doing. If can give false negatives but that's hardly a reason not to do it.
Can you get to another MDS?
____
My strange history. In late 90's, early 00's I was frustrated by vibrations. The world vibrated. It was worse in spring when the ground was wet but trees didn't have leaves yet. I never found the source at home. It was less at my parents and other places. Neurologist gave it a latin name for 'sensitive to vibrations' says it happens to some people, and offered a beta blocker to calm my system.
Sometimes now it feels just like that. I have more visible tremors too. But some internal or semi-internal that I can't tell if it's me or the ground that's shaking. MDS doctors say it was too long ago. But really?
My thought is you have something. If it's PD, then it's lack of dopamine. Best test is a replacement drug to see if you react. If may be something else or a cross of a few factors. Like can be odd that way.
thanks very much for your thoughtful reply.
i've always hated doctors (most dentists have screwed me as well)
i have very few options regarding a neuro/MDS...
my 2nd choice is pretty far away
as of now... i'm hanging in there and it doesn't affect my life in the least (other than it is worrisome and I know what is "coming")
how far i can delay that.... who knows?
and i certainly don't want to "experiment" with C/L to see if I "respond" since I'm 100% normal in all my activities
Seems like you'll need to take that trip when it becomes time, just to get the proper diagnosis in place. Might be nice to do it sooner than later in case it can be ruled out? But it's really great that it's not affecting your life right now. By the time it does they'll be so many new medications!!!
I had a lot of medical conditions,. I'm finding the MDS field less developed at patient care then some of the others such as lymphoma. It's not whether they have more or less treatments, there's just a lack of information and effective way of communicating your status. It's not you.
thank you for the reply but let me share this about my '1' ... appt with the neuro/MDS
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from June 20, 2021 (the day i got my first visible tremor) I began recording a daily health diary .... (something I learned from my sister when she was the caretaker for my mom)
I put everything on a flash drive and I printed out a 2 page summary.
The doctor was not interested whatsoever!
You've described that. Even if not interested, then there's a reason and up to them to GIVE IT. 2 pages is an easy summary to glance at! I wrote 4 or so pages for oncology appts of my history, and one doctor thanked me very much. I put my lab results into my own charts because the various hospitals' were confusing. My doctor put the hospitals' aside and liked mine. Sometimes they seem to think my lists are too much, but they say 'that data isn't going to apply right now.' I brought a printout of my BP measured at the oncologist for the last year, and that's what the cardiologist used to decide my situation.
I wish it was easier to get to a other resources. Even if poor, sometimes its possible to figure out what works with a doctor and get them to respond better. Not always, but if you do go again, it's worth a big smile, less papers, and looking him in the eye and asking "what is this?" The 1000s of tremors sounds like a lot, so a more general 'tremors here and here and feel like this.' But chances are he doesn't know and that's why he wasn't responsive.
thank you very much for the thoughtful and detailed reply.
We're all in the same boat, one way or another.
And if your last name isn't "Bezos" or "Mush" or "Gates" or "Zuckerberg" ...
then were stuck with 2nd or 3rd or 4th best medical help..
cgreg did my homework and sent it to me 🙏
what's the cost for the gloves?
it’s a trial. The cost is wearing the gloves 2 hours twice daily for 4 months
so how are you doing?
well finished what I’m nearly certain was 2 months of placebo/ control. Wearing the new gloves i got today right now
So the 1st set didn't have any effect and you have a sense it was the control group. Hope this set is the treatment gloves!
Can you identify any differences between the old (hopefully placebo) and new gloves?
Hi Winnie, how are doing with your gloves?
Well construction is coming along. The new exciter holders are (hopefully) on their final version. Partly because I have the working Mk3 gloves, "life" has got in the way of development of Mk4. Probably next weekend at the earliest
I have been trying to use the gloves twice a day for 2 hours a day, but it's hard. I have managed 2x1.5 hours maybe half the time. Some days (yesterday) are a strike-out (I got up at 5 this morning to do 2 hours with the gloves, and this bloody fly kept landing on my nose. In the end I'd taken the gloves off so many times to try and get the little b.... I just packed up and did some work. I started 3 weeks ago, and lost 3 days on holiday due to crap Parkie soldering, and a couple of days after for "life". So , it's a bit of a wishy washy start.
But I think good. Maybe very good. Part of the problem in evaluating was that things deteriorated a fair bit just before I started the gloves - maybe due to a switch from Zifrol to a generic Pramipexole. So I may be referencing the wrong base case. As Sue reminded me, I was pretty miserable for the 3 days I was waiting for a soldering iron.
Happier, much less tired, no neck ache, shoulder heaviness, and nearly not being able to make it up the drive after walking the dog. Arm swings, no left foot drag, but a bit of resting and intention tremor that was part of the new problems just pre-glove.
The really interesting one for me is smell. Periodically since diagnosis, I have smelt one smell or another and thought I was about to be cured. But I have been smelling more and more things - except for dog poo. We were out for a walk the other day and I was smelling flowers, and cooking, but Sue walked up to me and asked "Did Louis poo just then while I was taking photos? It stank". She was 20 metres away - I was right next to Louis - couldn't smell a thing.
But this morning - when I went to let the dogs out first thing, I could smell dog poo before I went in their room (the older dog has a nerve problem in her spine and has lost control of her bowels). The first dog poo I've smelt in 6 years I think. Maybe a sign?
That sounds very encouraging! Interesting that so many glove users observe improved smell (I did, too, even on the bHaptics). I still have some sniffing patches lying around (they were very popular in the pandemic era..), so perhaps should try them more systematically again.
In any case, I think I found a somewhat stable dosing regime to curb the dystonia and had an external UPDRS 3 taken for a little more objectivity during the OFF yesterday. So now I am once again ready for more systematic glove use. And hopefully will get the C-MFs working in two weeks or so, then I can also compare them with the TactGloves.
It's good to hear all of this. Thanks for such detailed information.
I’ve been asked not to discuss the pattern but it’s certainly very different.
Thanks. I'll take that as the pattern that is different - not anything visible on the glove, nor the "loudness" of the stimulation. Fingers crossed it works for you
fingers crossed 🤞, sent you a message
Good luck!
The new design is much slimmer so I won't get cramp from fanning my fingers
My Dad Seems to be Giving Up...
I have no laces in my shoes
Falling out of bed
Anger mood swings physical violence
Swollen feet
