Recent Posts

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Introduce yourself / Introduction
« Last post by JANE on August 16, 2017, 02:17:54 PM »
Hi

My name is Jane and I have had essential tremor for at least ten years.  Also have Hashimotos. I have just had a normal MRI and Datscan and have bern told if it gets worse I can have DBS which I dont want.  I have learned that there is a new procedure called MRI guided ultrasound which hascbeen developed by a Dr Bain and others at Imperial Hospital and Charing Cross, London.  They have done trials.  Anyone know about this?

Jane 8)
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Introduce yourself / Re: Essential Tremor
« Last post by Jackie on July 18, 2017, 03:14:09 PM »
Hi Alex and welcome to the online forum  :)
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Introduce yourself / Re: Essential Tremor
« Last post by alex.stone5 on July 18, 2017, 02:54:17 PM »
Hi My name is Alex and I have had tremors in both my hands for as long as I can remember and it's spread to my voice and my left leg in the last few years. It never bothered me until I started in my new job in a chemistry lab where I handle dangerous chemicals and my tremors make it really difficult for me. Looking at different treatments at the moment but any advice is appreciated :)
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Tremor in the workplace / Re: Sickness at work
« Last post by Gav on July 14, 2017, 03:22:45 PM »
hi Marane, I agree with MargaretB.  It's very hard when you don't know when the shakes will come on and your bosses need to understand this.

Hope it gets sorted and you can keep us up to date.
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Introduce yourself / Hi everyone
« Last post by Gav on July 14, 2017, 03:09:56 PM »
Hi all, I'm Gav from Edinburgh. 

I have generalised dystonia since childhood causing tremors across most of my body, some days worse than others. 

Due to muscles trying to control the tremors I keep tearing and rupturing ankle tendons, constantly getting carpal tunnel (Even after 3 surgeries), popping my knees, tennis and/or golfers elbow. 

It can be very frustrating and am always looking for tech or other helpful ways to help me in my day to day life.

Hope everyone's doing well.  I look forward to seeing more on this forum.
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Research / Take part in a phone app study to reduce tremor.
« Last post by DJC on July 13, 2017, 02:37:21 PM »
I am 77 years old and had for three years been suffering progressively from hand tremors. These had developed to a state where I was unable to carry a cup of coffee across a room without spilling it. My son, who has studied Tai Chi for more than 20 years and is a computer programmer combined these two skills to develop 'Smooth Move'.

Smooth Move is an app for Android Phones that has been successful in reducing my tremor to the point that without thinking, I can now carry coffee across the carpeted lounge without provoking the wrath of my wife. This is not quite a 100% fix though. It is still the case that occasionally in stressful situations, for instance while standing, holding a book or piece of paper, and addressing a group of people, I realise that my hand has started shaking a bit. At the point of this realisation though I can now exercise some control and reduce the tremor.

My son and I are looking for volunteers who will use Smooth Move regularly over a period of 6 months to see if this therapeutic approach is a more widespread remedy than just in my isolated case. We are grateful to The Tremor Foundation for allowing us to publicise this approach to what I am fully aware is a quite debilitating condition.

Participants in this trial will need an Android smartphone

Any Android phone from the last 5 years should be fine

The app is available at no cost for download to Android phones on https://play.google.com/store/apps/details?id=smooth.move.live

It takes maybe 30 minutes to an hour to 'play' with the app and get to where you are ready for daily practice

An exercise set lasts around 7 minutes

Video of the type of movements involved : https://www.youtube.com/watch?v=gtXWEDEArY8

Video of the exercise set : https://www.youtube.com/watch?v=3G5Dm07tZAc

The exercise should be practised daily

The set is repeated one, two or three times per day

Users can choose which they feel is best for them according to their daily routines –

I initially practised two to three times a day, and after 6 months switched to once a day

Odd days off are fine, but regular practice is essential

Within a 6 month study time

The first signs of benefit are anticipated after around 3 months

A clearer indication on the level of any benefit should start to accrue at 6 months

Our study seeks to cover sufferers of essential tremor involving the hands

Any other participants would be welcome, but we have no  indication if they would be helped

We have a basic website which volunteers could read more on

http://www.smoothmoveapp.com/

Thus it has no cost to participate, unless a volunteer needs to buy an Android smartphone to take part. It also doesn't take much time. I have no doubt that the time I invested was well rewarded.

We will be supporting volunteers to get started, answering questions as they arise, and gathering results data. We would also be interested if volunteers could help us refine the app to make it as easy to use as possible.

If you would like to participate please contact smoothmoveapp@gmail.com.
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My name is Ben. I have been spared so far, however my grandfather, Dr. James Gottemoller,  has dealt with Essential Tremor due to Parkinson's disease for over a decade now. It has been a long road for him, as I'm sure you can relate.

I'm a software developer at heart, who lives and breathes code, and so starting back in 2005 I developed mouse software you may have heard of, to remove the tremor motion when using a computer. I won't say the name so as to not break the solicitation rules here, but I'm sure you can find it if you like.

Anyways, I'd like to just say hello to everyone here and offer custom software engineering help to improve things for folks. I do what I can to gather up feedback on the "pain points" people have when using their computers so I can then bring improvements to bear in "software land". I will keep tabs on the forum here, so feel free to shoot me a note if there's an area with using your computer that really needs work. Cheers!
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Introduce yourself / Re: Essential Tremor
« Last post by Jackie on July 07, 2017, 01:57:49 PM »
Hi i'm Jackie Farrell, retired dance teacher. Diagnosed with ET 1974 in right hand. Since then its progressed over time to both hands, head, jaw, lips and legs.
Nice to meet you all on this forum.
  :)
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Introduce yourself / Essential Tremor
« Last post by Bingo23 on June 27, 2017, 04:07:22 PM »
Hello - my name is Mike and I have had an Essential Tremor, mainly in my left arm, for approximately five to six years.
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Tremor in the workplace / Re: Sickness at work
« Last post by MargaretB on June 22, 2017, 11:46:22 AM »
I am familiar with the system you are describing, it multiplies the way sickness/absence is seen. If you are in a Union, I would suggest that you see your local Steward, you will find that they will have experience of the system and will no doubt have supported others going through the interview process. Good luck.
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