miércoles, 5 de noviembre de 2014

26 years of Primary Orthostatic Tremor - Primary Orthostatic Tremor (POT) community - RareConnect

26 years of Primary Orthostatic Tremor - Primary Orthostatic Tremor (POT) community - RareConnect


26 years of Primary Orthostatic Tremor

You all know the symptoms, more or less. At the beginning you put up with it, believing it is a stable condition, because you're not told that this is an degenerative disease...
Written by pastop, published 13 days ago.
I remember when I was diagnosed, the doctor told me... it is not fatal; you'll just need to learn to live with it! But 10 years later, it is becoming more and more disabling and nobody ever tells you about the secondary effects, which are even more difficult to accept for physicians and for those who live with us.
So, our only "pleasure" is to walk, but then we start having serious problems with our feet, like fissures in our tendons, which need to be immobilized for months, terrible cramps, burning feet, prurigo mainly in those areas that hurt more, feet that refuse to walk and tremors all over the body as soon as we stand still for one second.
This means there can't be obstacles or persons in our way. Escalators are a nightmare when going down; when going up it's a little better, but nevertheless it's very difficult. Even with a cane we can't stop shaking and it immobilizes one of our arms, which we need to hang on anything that passes by. We are told we will not fall, but that's not true. Because of our gait, any trip, any unevenness, makes us fall.
While we walk, we cannot speak or look around, otherwise we lose our balance. It happened to me and I ended up spending 3 days at the emergency room, with nobody to call, a fracture of the orbital bone with a risk of sinking of the eye, a dead tooth, an occlusion to be re-examined, prohibition to blow my nose for 2 months to prevent the risk of infection to the incision under the eye; waiting one year to regain facial sensitivity and having to buy a new pair of glasses because 6 months later I keep seeing double.
I know this may seem a dark picture, but it is useful to inform doctors and those who ignore us on how things are. But I hold out, I go up and down my 6 stairways every day, I catch the underground and the bus to go to the dentist, the ophthalmologist, the osteopath and to see my doctor; I take the plane and the train for my lonely holidays. It's a hell, but it's my life.

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