Alive and well

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Alive and well

Postby fox2run on January 14th, 2013, 6:13 am

Dear members and fellow twitchers

I just want to make a quick update for reasurrance as I know too well how many of you do suffer - not so much from physics as from psychics.

My travel with the fear of ALS has been hard as I always have been a bit scared of diseases. This time my life took turns I never had imagined. I saw I dont know how many doctors and experts. (Only one neurologist and then an awful lot of psykologists and psychiatrists. THe results have been good and bad. Good in the sence of no ALS - I surviuve. Bad in the sence of dx of hypocondriac. Or as the newest science reveal (directly translated): "Functional suffering", which reveal a complex pattern between body and mind and some ways the brain is affected frokm signals in the body (this is complex physiscs - I dont want to bore you - and Im no expert).

Im really happy that Im not gonna die of ALS. And Im happy that I have a dx. Although Im unhappy that my brain isnt 100% fit for fight. I have to live with this for the rest of my life, and I have to learn how to cope in order not to make it affect the quality of my life too much. To be honest I dont know if this ALS scared just triggered it all or it was "just" the result of a stressfull life with small kids, unhappy marriage, hard work etc.

When I look back, then I met people who gave me reassurance (the neuro) and the opposite (other people with no insight). Just like this and many other websites can do. It all depends on your mental condition. In the end it was up to my day to day mentally state. On good days I didnt take any notice and on bad days I was on the edge of making appointments with the undertaker (so to speak).

Im convinced that almost everyone (except the statistically 0,0000001%) on this board is in the same boat as me. Its not ALS but a lot of other complicated stuff going on. Not deadly but maybe a good reminder of taking a look on the life you are living. Are you overloaded? Can you relax? Do the thought of death and diseases scare you too much, etc.?

After 5½ year of this mess, I now know for sure (200%) that I dont have any ALS or the like. My body is fit and well (I do run regularly) but not my brain. The travel ahead of me is going to be long and hard in some sence, but I do not fear it anymore. Im beginning to understand myself a lot better and I have to learn how to cope. Like getting rid of the fear this next chapter of my life is going to take a lot of time. Perhaps the rest of my life. I dont want to use any time on this board, as I dont want to fuel my brain with anymore of this scary talking. But I think I do owe you fellows some response from time to time.

I still twitch a lot but I have learned not to worry and that is really the most wonderful thing. Hope you all are going to get there some day. :D
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Re: Alive and well

Postby PetrifiedGuy33 on January 14th, 2013, 6:53 am

good post - i'd love to know how we reprogramme our brains not to automatically fear the worst

i know people suggest counselling, exercise, diet, yoga, meditation etc but aren't a lot of these methods just a form of distracting or quietening the mind

how do we convince ourselves or train ourselves towards positive thinking and acceptance of our mortality?
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Re: Alive and well

Postby Yuliasir on January 14th, 2013, 9:21 am

Hi colleague,
same story, yes, and it is good to see that scientists start to understand that we probably really suffer form complex disease involing some (not major) physical deficeinces (mostly in conjunctive tissue) and brain structural/chemical differrence. And same long (I am now sure that mostly lifelong) way to cope with specific brain features.

Good luck to us all on that way.
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Re: Alive and well

Postby mwagner on January 14th, 2013, 11:39 am

Im convinced that almost everyone (except the statistically 0,0000001%) on this board is in the same boat as me. Its not ALS but a lot of other complicated stuff going on. Not deadly but maybe a good reminder of taking a look on the life you are living. Are you overloaded? Can you relax? Do the thought of death and diseases scare you too much, etc.?


This couldn't ring more true. At least for me. I'm overloaded, have a hard time relaxing and a resounding yes to the last question.
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Re: Alive and well

Postby TwitchyDoc on January 15th, 2013, 9:53 am

fox2run, I remember you and thank you for you reassurance in my first days of tongue fasciculations! Also thank you for stopping here, it is always nice to hear about other old timers doing well.
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Re: Alive and well

Postby edado69 on January 31st, 2013, 2:01 pm

Hi Fox, good on you. Always nice hearing from old timers.
Fasciculating from the 25/03/2007 (as accurately as I can recall!...)
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Re: Alive and well

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