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New interesting tool in the physiotherapeutic advice area.
Started Jun 16
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Hello friends.
Given our circumstances, it seems interesting to embrace any option, tool or advice that allows us to cope our disease and our whole existence from a different point of view, always as positive as possible. It is also very importan...
New interesting VISUAL tool in the physiotherapeutic advice area (II)
Dear friends.
Three weeks ago I introduce you a new option to get helped and learn in the physiotherapeutic area, now more intuitive than ever, at the url:
http://webs.ono.co...
From my 3 decades long personal experience with dystonia.
Pain: When you get used to it, and your suffering threshold gets higher and higher with time, you only feel sensitive to twice sorts of people: type A: those who face the slightest pain an...
Dear friends.
Before leaving on holidays in just two weeks, I want to share with you what is going to be the principal distoweb’s novelty in no more than two months.
After sharing with yoy the ‘Physiotherapist advice’ link, created for people su...
Nowadays many big companies all over the world are interested in what is called Knowledge management. This concept, so very close to learning process, comes when the experience value is in addition to information. Many of the results and competenc...
I have been meaning to tell you that I enjoy your website and think it has a lot of unique information for anyone who is new to dystonia and trying to cope with it. I wish I had found it sooner :P
Profile Information
- Location
- 46018
- More about me (my health interests and reasons for joining WEGO Health)
- So this is me trying to share every single detail and experience with other people living with dystonia. I started to live my torsion dystonia when I was about 11. Now I am 43 and I feel I can help other people with my personal experience, my way of facing this illness now and in the past, and so on.
I use to say that, of course, I am not a model of anything, and I also say I trust people who unconditionally help you with an extra bit of understanding (something so really expensive to get these days).
Understanding... maybe the best medicine to deal with.
Comment Wall (2 comments)
- At 9:54pm on May 17, 2009,
Lene said…
- Welcome to the forum. I am sure you have a lot to contribute as do most of us. Personally for myself I just can't seem to put it all down in words or type my understanding as eloquent as others. I certainly understand the dystonia subject, however trying to throw my knowledge out there is minute compared to others. I humbly read and take it all in..Many blessing to you Lene
- At 8:19am on September 29, 2008,
Tracey said… - Hi,
Noticed you were from Europe too : ) How does the torsion dystonia affect you? I have cervical & myoclonus types, but think it's spreading to other parts now. I also have essential tremor, but why it's essential is beyond me?!! I think I have had dystonia as well as the ET since I was very young, as I remember shaking as a child of about 10, though I did ballet from the age of 2 so my body was already twisting into odd shapes then with that. I know they told my Mum I was just highly strung! I used to get episodes of neuralgia as a child too which wasn't nice - I called it 'face ache'. I still get it now from time to time, though have found acupuncture really helped & I haven't had a really bad bout of it for over 2 years now, which is a real bonus.
We are the same age. So when is your birthday then? Had mine in August.
So how do you cope with your problems then? I started going for Botox last year, but use a number of alternative therapies & potions where I can, some of which help enormously.
Yes understanding is the best medicine of all & it's great to have support. I joined our local support group last year, just after I was diagnosed. I went for years with doctors telling me it was all in my head & had no support whatsoever, though I did have a counsellor when I was at uni some years ago, who I still see sometimes now. The support group is wonderful though & I hope you get the support you need too from friends, family or whoever will listen. I just joined this site the other night, so hope we can talk soon.
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