1. < Parkinson's Disease

Functional Tremor

Posted by loomisd1988 @loomisd1988, Sep 12, 2023

Has anyone found help for "Functional" tremors. Please, not to be confused with essential tremor. My husband had DBS surgery in January, 2023 and it took his tremors away. BUT then he developed what they call functional tremor and it is horrible. His right hand shakes so bad that he can barely eat. He cannot hold onto things. Difficult to shave, eat, brush teeth, work on his computer, etc...
They said there is nothing that can be done and had him go to cognitive therapy, which the counselor said she cannot help. I cannot image with the medical technology today that there isn't something to help.

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Edward (Ted) Almon | @tedalmon | Sep 13, 2023

Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your husband's, to which i could add a few more, most notably my primary hobby, golf, or certain aspects of it like putting.

Here are some possible solutions I have been watching and conferring with my care team about:
DBS. In your husband's case this was only done once, but it can be performed on both sides to target bilateral symptoms. I assume in his case this was ruled out for some reason?

High intensity focused ultrasound, or HIFU. This relatively new procedure is being aggressively promoted by the manufacturer, Insightec so you can learn all about it on line.

And finally, the "Parkinson's Glove" a very interesting device currently in early clinical trials, I believe at Stanford. This would be the least invasive of all if proven effective. There is a remarkable video on line showing truly amazing results in a single patient. It was dramatic enough, if unscientific, to encourage me to wait to learn more about it, which so far has proven difficult.

Good luck to you and your husband in this quest, and please post anything else you learn.

REPLY
3 replies
elimseoj | @elimseoj | Sep 13, 2023
In reply to @tedalmon "Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your..." + (show)
@tedalmon

Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your husband's, to which i could add a few more, most notably my primary hobby, golf, or certain aspects of it like putting.

Here are some possible solutions I have been watching and conferring with my care team about:
DBS. In your husband's case this was only done once, but it can be performed on both sides to target bilateral symptoms. I assume in his case this was ruled out for some reason?

High intensity focused ultrasound, or HIFU. This relatively new procedure is being aggressively promoted by the manufacturer, Insightec so you can learn all about it on line.

And finally, the "Parkinson's Glove" a very interesting device currently in early clinical trials, I believe at Stanford. This would be the least invasive of all if proven effective. There is a remarkable video on line showing truly amazing results in a single patient. It was dramatic enough, if unscientific, to encourage me to wait to learn more about it, which so far has proven difficult.

Good luck to you and your husband in this quest, and please post anything else you learn.

Jump to this post

I found this video that explained some of Stanford's work: https://www.youtube.com/watch?v=vlqpr-Projw. It is very scientific but I am happy I watched the whole thing. Thank you @tedalmon!

REPLY
loomisd1988 | @loomisd1988 | Sep 14, 2023
In reply to @tedalmon "Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your..." + (show)
@tedalmon

Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your husband's, to which i could add a few more, most notably my primary hobby, golf, or certain aspects of it like putting.

Here are some possible solutions I have been watching and conferring with my care team about:
DBS. In your husband's case this was only done once, but it can be performed on both sides to target bilateral symptoms. I assume in his case this was ruled out for some reason?

High intensity focused ultrasound, or HIFU. This relatively new procedure is being aggressively promoted by the manufacturer, Insightec so you can learn all about it on line.

And finally, the "Parkinson's Glove" a very interesting device currently in early clinical trials, I believe at Stanford. This would be the least invasive of all if proven effective. There is a remarkable video on line showing truly amazing results in a single patient. It was dramatic enough, if unscientific, to encourage me to wait to learn more about it, which so far has proven difficult.

Good luck to you and your husband in this quest, and please post anything else you learn.

Jump to this post

Hi, thank you for commenting. Sounds very similar to my husband. His right hand (primary hand) is the one with functional tremor and golf is his love and hobby. His DBS was on both sides. This did take the "normal" tremor away, but then the functional tremor came on.
I have looked at the glove and HIFU. When I showed it to my doctor she did not have much to say about it. I will definitely look into it again. Although, it sounds like you have had trouble finding the glove (?) At one time, I did see the glove for sale. Possibly it was not the same thing.

REPLY
loomisd1988 | @loomisd1988 | Sep 14, 2023
In reply to @tedalmon "Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your..." + (show)
@tedalmon

Hi, I too have a functional tremor in my right/dominant hand and disabilities similar to your husband's, to which i could add a few more, most notably my primary hobby, golf, or certain aspects of it like putting.

Here are some possible solutions I have been watching and conferring with my care team about:
DBS. In your husband's case this was only done once, but it can be performed on both sides to target bilateral symptoms. I assume in his case this was ruled out for some reason?

High intensity focused ultrasound, or HIFU. This relatively new procedure is being aggressively promoted by the manufacturer, Insightec so you can learn all about it on line.

And finally, the "Parkinson's Glove" a very interesting device currently in early clinical trials, I believe at Stanford. This would be the least invasive of all if proven effective. There is a remarkable video on line showing truly amazing results in a single patient. It was dramatic enough, if unscientific, to encourage me to wait to learn more about it, which so far has proven difficult.

Good luck to you and your husband in this quest, and please post anything else you learn.

Jump to this post

Hello Ed, I just read your reply to my husband and he is requesting if you would allow him to call you to talk with you. You can message me privately if you want on facebook.

REPLY
Edward (Ted) Almon | @tedalmon | Sep 14, 2023

Yes, of course I would be happy to speak with him but I'm not sure how to say how on this forum. I don't do social media for professional reasons but I do have a personal email at tedalmon3@gmail.com I use for such things which I think would be low risk. Let me know if you know of a better method. TA

REPLY
1 reply
Edward (Ted) Almon | @tedalmon | Sep 14, 2023

OK, I just found this:


You may have to cut and paste it into your browser if it doesn't come through as a link. TA

REPLY
1 reply
loomisd1988 | @loomisd1988 | Sep 14, 2023
In reply to @tedalmon "OK, I just found this: https://www.youtube.com/watch?v=t7EX4GgLBlA You may have to cut and paste it into your..." + (show)
@tedalmon

OK, I just found this:


You may have to cut and paste it into your browser if it doesn't come through as a link. TA

Jump to this post

This is so exciting! that was fantastic. I will send this to our doctor. The only thing that I wonder about is that he said essential tremor and my husband has functional tremor.

REPLY
1 reply
loomisd1988 | @loomisd1988 | Sep 14, 2023
In reply to @tedalmon "Yes, of course I would be happy to speak with him but I'm not sure how..." + (show)
@tedalmon

Yes, of course I would be happy to speak with him but I'm not sure how to say how on this forum. I don't do social media for professional reasons but I do have a personal email at tedalmon3@gmail.com I use for such things which I think would be low risk. Let me know if you know of a better method. TA

Jump to this post

Thank you, he will be pleased to hear this. He can email and then you can decide if you want to give him your number privately.

REPLY
Edward (Ted) Almon | @tedalmon | Sep 15, 2023
In reply to @loomisd1988 "This is so exciting! that was fantastic. I will send this to our doctor. The only..." + (show)
@loomisd1988

This is so exciting! that was fantastic. I will send this to our doctor. The only thing that I wonder about is that he said essential tremor and my husband has functional tremor.

Jump to this post

Yes, it's still all a bit confusing I admit, but the most specialized member of my care team, a movement disorder specialist at a major teaching program says it is quite possible to have both PD and essential tremor and either can manifest as different forms of tremor. He expressed no particular opinion about the glove, other than it was "interesting".

I'm sure your husband and I are both most eager to have our functional tremors treated, but while DBS is mature science and practice, it is dauntingly invasive, while HIFU is relatively new and is irreversible since it ablates (kills) brain cells. Potentially, the glove might avoid all these concerns and so far, to me at least, it seems worth waiting a bit to find out if it might be a viable option.

REPLY
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