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Author Topic: ALS / Ice Bucket Challenge  (Read 477 times)

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Online cameronj

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ALS / Ice Bucket Challenge
« on: August 19, 2014, 05:06:40 PM »
I've all of a sudden become terrified of ALS. I know it's extremely rare, but I'm terrified that I could develop it since I've read about all of these 20 something year olds suffering from it. I know just reading or hearing about something shouldn't generate this type of response, but I'm honestly scared and don't know what to do or think. Just the thought of being trapped in my body without being able to move or communicate besides through my eyes is absolutely terrifying.
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Online cameronj

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Re: ALS / Ice Bucket Challenge
« Reply #1 on: August 19, 2014, 05:21:35 PM »
and the fact that it seemingly occurs at random makes my anxiety even worse.
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Offline sixpack

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Re: ALS / Ice Bucket Challenge
« Reply #2 on: August 19, 2014, 05:25:07 PM »
yes, als is a tragic and scary disease.   No one wants to get it.

now---what you have to do is KNOW that there are all kinds of scary diseases in the world.  ALS is one of them. the mere facts that there is such a disease and an "Ice Bucket Challenge " fundraiser for it and that you will hear more stories about ALS and it frightens you, does not mean it will happen to you.  fear of a disease doesn't equal causation.

cam-- we live in a world with many frightening things.  We also live in a world with many joyful things.  We have to learn to exist in this world with the good and the bad.    If we choose to only dwell or look for the bad, life is going to be  very grim.

so, again, ALS is a terrifying prospect.  absolutely!!!  What does that have to do with you?


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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline filopastry

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Re: ALS / Ice Bucket Challenge
« Reply #3 on: August 19, 2014, 05:28:08 PM »
I've all of a sudden become terrified of ALS. I know it's extremely rare, but I'm terrified that I could develop it since I've read about all of these 20 something year olds suffering from it. I know just reading or hearing about something shouldn't generate this type of response, but I'm honestly scared and don't know what to do or think. Just the thought of being trapped in my body without being able to move or communicate besides through my eyes is absolutely terrifying.

Its one of my pet terrors as well, which is probably why I have started seeing what feel like symptoms to me as well, even though I know they aren't, its not surprising as its a truly horrible disease

I think its probably one of the biggest fears on here to be honest from my brief time looking around the forum.

All you can do is try to think rationally and remember that it is a very rare disease, it is even more rare to have young onset, and from my understanding even more rare to have young onset without a family history.

Never mind young onset I am 42 and when I said to my sister (a doctor) that I had managed to work myself up worrying about Bulbar onset ALS, she basically said it was laughable to think you had that even at my age.

Like anything it could happen but you would have to be insanely/ludicrously unlucky for it to happen to you, that really you just have to tell yourself there are far more productive things to do with your time than worry about it.
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Online cameronj

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Re: ALS / Ice Bucket Challenge
« Reply #4 on: August 19, 2014, 10:40:49 PM »
Thank you both for responding. You guys are exactly right. There's no point to waste my finite time on this planet over something that is highly improbable. This also really put things into perspective for me:

"If the incidence of ALS is 2/100,000, two in every 100,000 people are diagnosed with Lou Gehrig's disease each year. Comparing this number to the age distribution numbers shortly outlined will tell us that the chance of getting Lou Gehrig's disease any particular year, when you are younger than 38, is about 1:165,000,000. Yes, one in 165 million people a year."
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Offline sickofsickness

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Re: ALS / Ice Bucket Challenge
« Reply #5 on: August 19, 2014, 11:50:57 PM »
I have to admit that my ALS fear is back too, with it being so present in the media now. I've been having this tightness/weakness in my lower leg that has persisted for months. Xrays normal, but we all know that xrays mean nothing with ALS. I had a lumbar MRI with some bulging discs at L5-S1 so my doctor thinks that's what's causing it, but my mind still races.

Doesn't help that I just read about a 30 year football player who just retired last year (!) who revealed his ALS diagnosis today.

I'm really happy that the diseases is getting more attention because it has been woefully underfunded but it really sucks that it's brought my fears back to the surface.
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Offline Raaawr

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Re: ALS / Ice Bucket Challenge
« Reply #6 on: August 20, 2014, 06:54:34 AM »
Thank you both for responding. You guys are exactly right. There's no point to waste my finite time on this planet over something that is highly improbable. This also really put things into perspective for me:

"If the incidence of ALS is 2/100,000, two in every 100,000 people are diagnosed with Lou Gehrig's disease each year. Comparing this number to the age distribution numbers shortly outlined will tell us that the chance of getting Lou Gehrig's disease any particular year, when you are younger than 38, is about 1:165,000,000. Yes, one in 165 million people a year."

Just to put that figure in perspective. Your odds of winning a national lottery (6 numbers 1 bonus number kind of lottery) is 1:8,145,060. So you have approximately 20 times (assuming my maths is correct - Im crap at maths) better chance of winning the lottery than you do of getting ALS.
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Since July 23rd 2014 I have had;
Brain Tumor, 5x Heart Attacks, 2x Blood clots in leg, 1 blood clot in Arm, 2x Appendicitis, Pulmonary Embolism, Brain Tumor, Internal Bleeding, Ebola.

Offline sixpack

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Re: ALS / Ice Bucket Challenge
« Reply #7 on: August 20, 2014, 07:19:30 AM »
I have to admit that my ALS fear is back too, with it being so present in the media now. I've been having this tightness/weakness in my lower leg that has persisted for months. Xrays normal, but we all know that xrays mean nothing with ALS. I had a lumbar MRI with some bulging discs at L5-S1 so my doctor thinks that's what's causing it, but my mind still races.

Doesn't help that I just read about a 30 year football player who just retired last year (!) who revealed his ALS diagnosis today.

I'm really happy that the diseases is getting more attention because it has been woefully underfunded but it really sucks that it's brought my fears back to the surface.


I read an article or heard a news story that says there is a HIGHER % of professional athletes who are dx'd with ALS.  the story that I am referring to listed % and named names of athletes, over the years who have had this.  there is the supposition that some forms of ALS ( I guess there are differing types within the disease) that injuries  (specifically the head) may, somehow, be the cause of this increase.


As an aside:
remember, too, anxious thinking is always going to find a 'reason' why our fears are justified.   which, of course, anytime anxious thinking is making decisions, should raise an eyebrow.   :yes:
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline yesyesno

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Re: ALS / Ice Bucket Challenge
« Reply #8 on: August 22, 2014, 11:19:46 PM »
The 30 yo football player's story really got to me.  Still figuring out how to handle this ice bucket challenge related news stories.
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Offline ShawnW

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Re: ALS / Ice Bucket Challenge
« Reply #9 on: August 23, 2014, 12:23:08 AM »
I have to admit that my ALS fear is back too, with it being so present in the media now. I've been having this tightness/weakness in my lower leg that has persisted for months. Xrays normal, but we all know that xrays mean nothing with ALS. I had a lumbar MRI with some bulging discs at L5-S1 so my doctor thinks that's what's causing it, but my mind still races.

Doesn't help that I just read about a 30 year football player who just retired last year (!) who revealed his ALS diagnosis today.

I'm really happy that the diseases is getting more attention because it has been woefully underfunded but it really sucks that it's brought my fears back to the surface.


I read an article or heard a news story that says there is a HIGHER % of professional athletes who are dx'd with ALS.  the story that I am referring to listed % and named names of athletes, over the years who have had this.  there is the supposition that some forms of ALS ( I guess there are differing types within the disease) that injuries  (specifically the head) may, somehow, be the cause of this increase.


As an aside:
remember, too, anxious thinking is always going to find a 'reason' why our fears are justified.   which, of course, anytime anxious thinking is making decisions, should raise an eyebrow.   :yes:

This is correct.  One of the finest neurologists in the world said something similar.  That in the young...while insanely rare it tends to be more common in the highly athletic...not guys that played a little ball in HS...but college and professional athletes.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

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