Vibrotactile gloves

[tiredpuppy]

I have posted before concerning my HWP's gloves that our daughter built for him. I was concerned that he seemed dazed after sessions for a little while, and mumbled a bit, even though he began slowly at first, for several weeks. He has been using them for one and half hours twice a day, with no sign of improvement, for several weeks. Now he is showing an occasional tremor in his good hand and arm, so yesterday he stopped using them. I know it takes a while for some to see any changes, but the tremor scares us. His right hand tremor is violent, so its hard to imagine both hands flailing. The new tremor has not changed since he stopped the gloves. Evidently this new tremor has been going on several days before I saw it. He didn't want to tell me because he wants the gloves to work.

His PD is progressing quickly, so it is hard to assess anything. How can I know if it is the gloves causing things to get worse? Our daughter is in another state working on her Phd, so isn't available much and I understand little about the gloves. I've been able to repair loose wires, but nothing else. They are full size gloves, not the kind I see with little "boxes" on the fingertips. I read something about cross signaling between fingers.... We have not contacted her yet because of her schedule, but she did say once that she could change the program from her computer.

She did say also that she had communicated with pdbuzzboard. I'm hoping he will have advice for us, as well as others. Should we totally discontinue the gloves or try to redo them? TIA for any suggestions. We are very disappointed in how things are going. Wish there was someone near Chattanooga TN who could help us!

[Bolt_Upright]

I can't find the post, but I swear I read some woman posted that she was in the Tass trial and the gloves seemed to have made her PD worse. I would be cautious.

[WinnieThePoo in reply to Bolt_Upright]

She wouldn't have been in the "Tass trial". It would be the Synergic trial, and they appear to have mainly poor results

[eschneid]

I stopped, as some of the motors went unnoticed at less than full speed and I believe the "unevenness " of the hands was not good in any way. Brain is complex and Bolt is wise, caution...

[JacksMomTX]

was there a point where the gloves "felt good"? you may be over "dosing" with them.

[tiredpuppy in reply to JacksMomTX]

He never seemed to notice any positive effects. I only noticed the questionable ones I mentioned. Since he began slowly and only got up to 2 hours at a time a few times, I don't know how to judge the dosing. I'm watching him now that he has stopped them to see any changes.

[Ctime]

Hello TiredPuppy,

I do not have a lot of experience but I have been tracking the glove project carefully. My response would be STOP. If something is not doing any good and you have given it an honest try, just stop. The glove thing is very experimental and some of the best minds in the country are working to figure it out. They are not delaying it out of laziness or malice.

Your daughter should be proud that she used her skill and has showed that she loves her Dad by giving him something that she built. Dad should be proud as it sounds like she is following in his footsteps.

I don't want to be the one who brings this up as it seems sometimes taboo, but have you discussed, with your neurology team or your husband the possibility that he has one of the "Parkinson's plus" diseases? What makes me ask is the ineffectiveness of Levodopa in lessening his symptoms and your comments that things are progressing fast. If this is the case, I can only guess that you need to get care appropriate to those specific symptoms and not spend the remaining quality time fussing with experimental projects.

We are all wishing you the very best outcome. Know that there are strong (virtual) arms around you.

C

[tiredpuppy in reply to Ctime]

Thank you for your kind response. Yes, I have just been reading up on PSP since he has not responded to sinemet or the gloves or cinnamon, etc., and he is progressing so fast. Unfortunately, it doesn't sound like there is much that can help PSP. I'll keep reading. I appreciate your support.