4 ms·

I’m 38 and I’ve had essential tremor for as long as I can remember. For most of my life it wasn’t much of a nuisance but it’s slowly and progressively worsened

by kbos87 3y ago

I’m 38 and I’ve had essential tremor for as long as I can remember. For most of my life it wasn’t much of a nuisance but it’s slowly and progressively worsened over the last 5 or so years. I won’t dare try to pick up a full drinking glass anymore, and a forkful of food is unlikely to make it to my mouth without jiggling off. Glad to hear that early onset isn’t implicated here but it’s still surprising to me how little is known and how quickly it’s dismissed whenever I’ve brought it up with my PCP.

relyks 3y ago
Have you tried using Liftware? https://www.liftware.com/steady/ https://www.liftware.com/steady/ It's surprisingly owned by Verily which is owned by Alphabet (The parent company of Google).
- jrpt 3y ago
  If you're going to go look for devices to help, you should consider something like the Cala kIQ: https://calahealth.com/ https://calahealth.com/ It is covered by some insurance and there are also clinical trials that you could get in which would provide it for free.
pedalpete 3y ago
Have you seen this research? https://www.nature.com/articles/s41467-020-20581-7 https://www.nature.com/articles/s41467-020-20581-7 Have you looked at implants or other treatments for essential tremor?
stubish 3y ago
We were quite surprised to learn recently from an unrelated HN article that there is now an essential tremor cure through ultrasonic brain surgery. FDA approved 2016 and now available in various countries. https://www.fusfoundation.org/diseases-and-conditions/essential-tremor/ https://www.fusfoundation.org/diseases-and-conditions/essent...
- southernplaces7 3y ago
  The word cure that you use seems pretty certain, and even your link doesn't use it to describe how the treatment affects the condition. Just curious, what made you say that it's curative? Do you know of people who've been cured by this therapy?
  - throwaway10987 3y ago
    My dad suffered terrible ET from age 40 on. At 65 he became terribly depressed and isolated as he couldn't do basic things like write or hold a fork. Fearing for his wellbeing I researched anything I could get my hands on and called doctors around the world. Finally found a research hospital in S Korea and a clinic in Florida willing to meet him. In 2018 they did the non-invasive surgery in SK and the ET stopped completely in his dominant hand and has been good since.
  - stubish 3y ago
    It seems a cure rather than a treatment. If the correct neurons can be found via MRI and the condition deemed suitable for treatment, the neurons get destroyed and I think no ongoing medication or repeat treatments are required. I believe they treat one limb at a time if you have the condition in both hands. All this is my initial impressions because we only learned of this recently and my relative won't be able to chase this up until later this year. I have second hand feedback about people who have undergone the treatment successfully in Australia. I don't actually know anyone outside of my family with the condition at all, so no first hand. https://news.ycombinator.com/item?id=39551457 https://news.ycombinator.com/item?id=39551457 was the HN article where I picked it up. Buried in the middle of the video is a minute or so talking about earlier successes with ultrasound, the essential tremor treatment. HN commenters indicate successful treatments.
    - throwaway10987 3y ago
      yes, I can confirm the doctor told us only one limb can be targeted so we picked his dominant arm.
Llamamoe 3y ago
Essential tremor is a potential marker of prodromal Parkinson's, which has been fairly conclusively linked to gut microbiota alterations with evidence of dysbiosis, transmission to animals via PD feces, and improvement following FMT: https://www.mdpi.com/2673-8007/3/3/67 https://www.mdpi.com/2673-8007/3/3/67 Gut - and oral - dysbiosis have been linked to other neurodegenerative diseases as well, so I'd really encourage you to look into this avenue.

by kbos87 3y ago

relyks 3y ago

Have you tried using Liftware? https://www.liftware.com/steady/ https://www.liftware.com/steady/ It's surprisingly owned by Verily which is owned by Alphabet (The parent company of Google).

jrpt 3y ago
If you're going to go look for devices to help, you should consider something like the Cala kIQ: https://calahealth.com/ https://calahealth.com/ It is covered by some insurance and there are also clinical trials that you could get in which would provide it for free.

pedalpete 3y ago

Have you seen this research? https://www.nature.com/articles/s41467-020-20581-7 https://www.nature.com/articles/s41467-020-20581-7 Have you looked at implants or other treatments for essential tremor?

stubish 3y ago

We were quite surprised to learn recently from an unrelated HN article that there is now an essential tremor cure through ultrasonic brain surgery. FDA approved 2016 and now available in various countries. https://www.fusfoundation.org/diseases-and-conditions/essential-tremor/ https://www.fusfoundation.org/diseases-and-conditions/essent...

southernplaces7 3y ago
The word cure that you use seems pretty certain, and even your link doesn't use it to describe how the treatment affects the condition. Just curious, what made you say that it's curative? Do you know of people who've been cured by this therapy?
- throwaway10987 3y ago
  My dad suffered terrible ET from age 40 on. At 65 he became terribly depressed and isolated as he couldn't do basic things like write or hold a fork. Fearing for his wellbeing I researched anything I could get my hands on and called doctors around the world. Finally found a research hospital in S Korea and a clinic in Florida willing to meet him. In 2018 they did the non-invasive surgery in SK and the ET stopped completely in his dominant hand and has been good since.
- stubish 3y ago
  It seems a cure rather than a treatment. If the correct neurons can be found via MRI and the condition deemed suitable for treatment, the neurons get destroyed and I think no ongoing medication or repeat treatments are required. I believe they treat one limb at a time if you have the condition in both hands. All this is my initial impressions because we only learned of this recently and my relative won't be able to chase this up until later this year. I have second hand feedback about people who have undergone the treatment successfully in Australia. I don't actually know anyone outside of my family with the condition at all, so no first hand. https://news.ycombinator.com/item?id=39551457 https://news.ycombinator.com/item?id=39551457 was the HN article where I picked it up. Buried in the middle of the video is a minute or so talking about earlier successes with ultrasound, the essential tremor treatment. HN commenters indicate successful treatments.
  - throwaway10987 3y ago
    yes, I can confirm the doctor told us only one limb can be targeted so we picked his dominant arm.

Llamamoe 3y ago

Essential tremor is a potential marker of prodromal Parkinson's, which has been fairly conclusively linked to gut microbiota alterations with evidence of dysbiosis, transmission to animals via PD feces, and improvement following FMT: https://www.mdpi.com/2673-8007/3/3/67 https://www.mdpi.com/2673-8007/3/3/67 Gut - and oral - dysbiosis have been linked to other neurodegenerative diseases as well, so I'd really encourage you to look into this avenue.