Andersen Tawil Syndrome

This is rare one !

Really hope you can find people to relate too here, but it might take
a time to find ones with Anderson Tawil.

Welcome back anyway.

Shellybear,

i’m sorry to hear about the about the struggles that you and your children are having. i was diagnosed with andersen-tawil about 20 years ago, when i was in my mid-teens. i went through years of ups and downs with A-T, long stretches of dealing with varying degrees of paralysis–the worst episode of which was on my 21st birthday, when even my tongue was paralyzed–with the occasional day when things didn’t seems to bad–although, looking back, they were pretty awful.

i tried everything my neurologists suggested–dietary restrictions*, medicine that seemed to to more harm than good, etc.–and none of it seemed to make too much of a difference. my GP recommended that i take a potassium and magnesium aspartate supplement. adding that supplement to the medicine i was already taking was not a quick fix, but lessen the severity of the paralysis and give me enough strength to build up muscles that had weakened due to the A-T.

over the course of a few years, i began increasing the amount of exercise i got and trying different exercise regiments that addressed the muscles that gave me the most problems–legs and arms. i still keep up those exercise regiments today, and it is to those that i give credit for my improvement.

as for penny’s dream of being an air hostess, tell her not to give up on it, ever.

i’ve spent enough time talking about myself thus far, but i will quickly say something about dreams. i grew up skateboarding. i was not just a kid who picked up a skateboard here and there when he was bored, i was obsessed with skateboarding. i practiced constantly, studied the history of skateboarding, and tried to learn as much as i could from watching others skateboard. A-T struck me when i was in my teens, and it took skateboarding away from me–it’s hard to ride a skateboard if you can’t walk! on those many days and nights i spent lying in my bed because i did not have the strength to get out of it, i dreamed of riding a skateboard again. i didn’t want to be the best in the world, i did not want to be a professional. i just wanted to be able to do the thing i loved again.

20 years later, weather permitting, i go out and skateboard either by myself or with my daughter at least a few times a week.

nothing is impossible.

*i’ve never benefited much from suggested dietary restrictions, but i have found that eating large meals trigger episodes.

Hi I know its late and I should be asleep. I have just registered tonight. My name is Mike I have had ATS all my life but was not officially diagnosed until I was 40. I am 45 this year. My father had the same but sadly he died in 2003 when he was 72 and never got to have his MD named. My son is clear of it but has Aspergers syndrome. Has anyone found a diet that works well for them? As I have said I have coped all my life but still I am learning what is good for me and bad for me. Any advice or suggestions would be nice.

Thank you

Mike Howard

Hi Shelly

So Sorry for the delay in replying I have just had to re-register again. It’s funny you should say that about Aspergers & ATS. I have believed for years that I have some form of Aspergers which is why I stick the kind of work I do as a Family Carer Support Worker, also I am very fixed in my views and likes. Maybe it’s just part of me but does make you think. I have looked on the PPA & HKPP site but to be honest have not gained too much as yet from it. I have always had ATS but it took of 40 years to know what type of MD/PP I have. Likewise its nice to know in a weird sort of way there are a few more people with this condition. I shall use this forum more often.

Again sorry for not getting back sooner. All the Best Mike