I got to see my GP today, after he had cancelled shortly before we travelled to the UK for the wedding. He reviewed my MRI scans and confirmed that apart from a bit of arthritis in C5 and C6 , which wouldn't account for the pain I experienced, there was nothing to see. I think he was about to tell me it was probably PD dystonia, but I beat him to it. He explained that it is quite common, can indeed be excruciatingly painful, and often there is little they can offer to relieve it.
I explained how it had been building for the last year, and hit with a bang in August, but was now hardly a problem, with the gloves. Except that it's necessary to stay in a "window" between under -medication causing pain, and over-medication causing pain. As far as I am concerned, it does appear to respond to levadopa, although without the gloves, Ldopa on its own was useless.
He googled Peter Tass, Stanford, and asked me to keep him informed about the gloves. He said I was very lucky if they were working for me as they appear to be, since usually there is nothing he can offer, and he has several patients struggling with the condition
The challenge is balancing the meds to get as near as possible the best outcome. I never seem to have it perfect, but it's so much better than it was. Its a question of balancing tremor, bradkynesia, and dystonia . But his advice was basically keep up the good work, and keep him informed
I feel better for having him confirm the plausibility of my broad conclusions. It's not been easy - complicated by the apparently new problem of dystonia starting shortly before I decided to try the gloves. Next appointment with him in 3 months, and with my Carcassone neuro in late January.
Mrs WTP and I have agreed a plan for a mk5 glove. I know we'd said we would stop, but I think we can make it a more robust (less fragile?) system without getting too bogged down. And needs a bit of computer programming too.
Getting there. Pleased with where we are so far. Pretty confident I can make it to 4 months, and the sunlit uplands of 2 hours once or twice a week. Bliss!
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WinnieThePoo
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Ha! - I'm some way off that. But on target to finish 4 months. And if my GP is right, probably very fortunate that the gloves came along in the nick of time to help with the dystonia, because it wasn't fun
Always reassuring to receive a professional endorsement, even though you are the primary manager of your condition..
I can sympathize with the challenge of balancing between under and over medication. Taking an extra 150 C/L last night because of an evening engagement, I became quite unpleasantly shaky and had great trouble sleeping. Fortunately, it's a holiday today, so I get by with less C/L in the system and feel much more stable again.
It will be interesting to see how the long-term effects of the gloves fit into the equation. Very subjective impression of the first sessions with the C-MF tactors, the main difference to the bhpatics is that they are much more spatially focussed, leading to a neat and precise tingling of RFs (the bhaptics by contrast vibrate whole fingertips, also including the RF surround). Other factors, particularly temporal precision, are hard/impossible to judge subjectively.
Ah, and I miss the stimulation of my thumbs that the 5-channel bHaptics provided.. 🙂
You'll love 'em. I am going to tweak mine a bit more. I've ordered 3 spare exciters, cos I know I'm going to break some when I start unsoldering. Bit more robust, and neater cabling, a revised contact screw with a little bump.
Yes - it's nice to have a doctor's endorsement. And have him confirm that what I was experiencing was quite common
Hi, I just joined this forum, and found this post on gloves. Even after searching a bit I am uninformed. Are they available yet? AND since my feet are equal offenders- does it solve foot tremors?
Also, is this a concept that you evolved and designed?
Hi Winnie, you've accomplished an amazing thing and you're reaping the benefits. Dr. Tass would be envious. I'm happy for you and for me because it makes me hope. Were you able to reduce the medication? Ad maiora
Regarding the medication - "probably". As I noted above, it has not been easy getting it right. So I get good days, and the other sort.
But at the risk of jinxing it, so far today I feel like a million dollars - no PD at all, and yesterday wasn't bad either, and that is on 1x10/100 CL 3 times a day and Pramipexole LP 1.05 once a day and gloves 2x2 hours a day
It's not easy in the short term, and without the help of a doctor, to reduce the Pramipexole - so I adjust C/L or glove time
1x10/100 tds is down from my last prescription 2x10/100 qds
That's today. I have been up and down during the last 2 months so it could easily change
FWIW, In this case report of a patient suffering from wearing off dystonia, there's a statement that the patient was helped by COMT inhibitor opicapone, but not entacapone:
Thanks. Good to have some options if I need them. It was a bit scary tbh. With luck, I won't need further medication, but always good to have options. My GP implied that for a significant minority there was nothing that helped. At the risk of jinxing things I seem to have got the hang of things for the last few daysAlthough it did ebb and flow, my recollection was of a more permanent pain problem (hence likening it to a karate injury problem I had about 15 years ago.
I recall my GP asking me how painful it was now, at my 1st appointment, a few days after resuming glove use and me answering "maybe 3 or 4 out of 10"
Something that helps me to loosen up my blocked shoulder and painful upper arm (which may or may not be part of the hemidystonia) are the Smovey rings. And they are fun to use. (Bought them as a treat on the day when I got my Datscan results. Oh, the fun PWP have. )
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