Recent Posts

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Introduce yourself / Re: Introduction
« Last post by DJC on Today at 03:31:06 PM »
Hi Ken Welcome to the forum!
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Introduce yourself / Re: Introduction
« Last post by KenL on September 19, 2017, 08:33:29 PM »
Hi Jane, I took part in the clinical trial of MRI-guided focussed ultrasound in June.    Treatment took place at St. Mary's Paddington and was supervised by Dr. Bain.    Currently, just 1 side of the brain is treated and for me, the treatment has been a great success.    My left hand (I am left-handed) continues to be tremor-free and, as you can imagine, it is such a freedom to eat and drink without spillages and to feel that I can carry a full mug from  A to B confidently.    The treatment is fairly painless - the most painful part is the fitting of the water-cooled helmet to keep your head cool during the time that the ultrasound is being fired at your brain.    The treatment does involve having your head shaved so you would need to investigate wigs beforehand.     Side effects were:    * feeling more tired especially after busy days     * some loss of balance - I have not risked riding my bike since the treatment.
Contact me if you want to know more.    Ken
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Introduce yourself / Re: Essential Tremor
« Last post by Jackie on September 14, 2017, 05:53:46 PM »
Hi Kitty,
I'm taking part in a live radio interview next Tuesday for BBC radio Solent. Talking about ET and how it affects people. One of the areas I will be mentioning is that this disorder affects children as well as adults.,I'll also be giving NTF details. Jackie (London & South East Support Group) xx
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Hi Ben,

Thank you for your post!  With technology advancing and its uses becoming an integrated part of life it is wonderful to hear you are developing things to help those with tremor.

I'd love to hear more about what you do.

Kind regards

Kitty
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Introduce yourself / Re: Essential Tremor
« Last post by Kitty on September 14, 2017, 02:40:34 PM »
Hi,

I am Kitty and I am a Trustee for the NTF.  My son was diagnosed with ET when he was 5 years old.  Life is quite often a battle to get people to understand ET and recognise the impact it can have on day to day living and education.

As a result I am now the Children Liaison Officer for NTF and aim to raise the profile of children with ET and in turn this with raise the profile of ET in adults.

If I can help in any way please feel free to give me a shout.

Take care

Kitty
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Introduce yourself / Re: Introduction
« Last post by Kitty on September 14, 2017, 02:36:38 PM »
Hi Jane,

There is some information on the NTF website about Ultra-sound guided MRI that might answer any questions you have.

Take care

Kitty
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Introduce yourself / Re: Hi everyone
« Last post by Kitty on September 14, 2017, 02:34:24 PM »
Welcome Gav,

Thank you for sharing your post.  If you find any useful tech ideas please share them as we'd love to hear what's out there!

Kind regards

Kitty
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Introduce yourself / Children's Liaison Officer
« Last post by Kitty on September 14, 2017, 02:32:29 PM »
Hi All,

Welcome!

I am Kitty and I am the Children's Liaison Officers for the NTF.  My son who is almost 13 was diagnosed with ET when he was 5 years of age however I noticed it around 18 months of age.

My role is to help raise the profile of ET in children in health and education and to help provide support to parents and children with the condition. If you have any ideas or request please feel to contact me to discuss.

Take care

Kitty


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Introduce yourself / Re: Introduction
« Last post by DJC on August 23, 2017, 01:51:45 PM »
Hi Jane

Welcome! I will find out in more detail :)

D
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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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