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  1. #21
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    Dec 2016
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    867

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Iker20 View Post
    90% of ALS cases start with drop foot, slurred speech or profound hand weakenss, the other 10% are respiratory onset
    Where are these stats from?

  2. #22
    Join Date
    Dec 2016
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    167

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Colicab85 View Post
    One thing I will say is that you have clearly been spending a long time loitering on the ALS forum.

    I'm willing to bet you've never posted but please STAY AWAY. Nothing good will come from hanging around there.
    I did read posts on the ALS forum a month ago when this fear started, mostly because that is where the google searching took me to. I have stayed away since then, and never joined or posted.

    I have been pretty good about avoiding the internet (except for this forum) but I did have a bit of a relapse recently and read some "real stories" on the ALS association website. A moment of weakness :(

  3. #23
    Join Date
    May 2016
    Posts
    417

    Re: How did you get over the ALS fear?

    Quote Originally Posted by emmegee View Post
    I did read posts on the ALS forum a month ago when this fear started, mostly because that is where the google searching took me to. I have stayed away since then, and never joined or posted.

    I have been pretty good about avoiding the internet (except for this forum) but I did have a bit of a relapse recently and read some "real stories" on the ALS association website. A moment of weakness :(
    It's hard. I know it is, I've been there myself.

    I got myself really bogged down in blogs and stories of demise and deterioration and made myself feel a lot lot worse.

  4. #24
    Join Date
    Dec 2016
    Posts
    867

    Re: How did you get over the ALS fear?

    Have any of you ever had consistent muscle soreness and fatigue in your arms? That's what I'm struggling with right now. :/

  5. #25

    Re: How did you get over the ALS fear?

    Quote Originally Posted by darkside4k View Post
    Where are these stats from?
    Its a number frequently quoted on the Do I Have ALS sections of the als forums, if you read most diagnosed cases yourself you will see such trend, considering 70% of PALS are limb onset, 25% bulbar onset and 5% respiratory or atypical onset

    ---------- Post added at 20:30 ---------- Previous post was at 20:22 ----------

    Quote Originally Posted by darkside4k View Post
    Have any of you ever had consistent muscle soreness and fatigue in your arms? That's what I'm struggling with right now. :/
    Thats what im struggling with right now, I seem to get more soreness from working out than normal, and my muscles seem to get fatigued more easily, pretty sure its just mental though, keep in mind anxiety can cause muscle soreness and fatigue trough tension, and the fatigue can be mental, if you have ever worked out you surely have noticed that while lifting weights if you are really focusing on the muscle being worked it gets fatigued or burns more easily, thats simple because you are tensing the muscle subconsciously by thinking about it automatically, nothing to be worried about

  6. #26
    Join Date
    Dec 2016
    Posts
    213

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Fishmanpa View Post
    The ALS rabbit hole is deep and narrow. Many get stuck in that hole and it's sad to see. Of all the fears I've seen on the boards, it's of the most difficult to get out of. At the same time, it's one of the most irrational fears of all the fears I see on the boards. When you come to realize how irrational it is, that will be the turning point. How and when that happens is up to you. I've found that no amount of reassurance helps. It's a self realization on your part.

    That's the point of the "been there done that" threads. Those that have been there came to that realization on their own. Hopefully, you will too!

    Positive thoughts
    COMPELTELY AGREE WITH FISHMANPA!!!!


    To be honest, I almost always refrain from posting on ALS threads because the peeps are really sucked into it and there is precious little anyone can do or say to dissuade these peeps to give up on this basically (and sorry if this is rude of me to say) 'HA fantasy disease'

    HOWEVER. full disclosure on my part: I will say about 20 years ago I briefly latched onto the disease. Thank goodness the shrink I saw literally LAUGHED in my FACE. That was enough to bring me back to my senses.. I went back to MS for a while...but I didn't have that either

    So, again, I agree with Fish.

    Good luck and be well

  7. #27
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Thanks everyone for taking the time to reply. I appreciate all the "pearls of wisdom" in helping me through this struggle.

    I'm no stranger to HA scares but this one seems especially hard to find my way out of (as FMP states). I find it so frustrating because my logical mind is constantly battling this fear driven emotional catastrophic scenario. I just told my therapist last week that I think I may be going crazy. She laughed and said "people who are going crazy don't recognize they are going crazy". I would have thought I would have knocked some sense into myself by now...

    I also think the nature of this disease scares me because I have become a super-worrier the older I get. At 45, I am a single parent to a 12 and 15 year old. My ex (their father) is an alcoholic and unable to care for himself. I am the sole provider for my kids and I worry about what would happen to them if anything were to happen to me. :(

  8. #28
    Join Date
    Dec 2016
    Posts
    213

    Re: How did you get over the ALS fear?

    . also think the nature of this disease scares me because I have become a super-worrier the older I get. At 45, I am a single parent to a 12 and 15 year old. My ex (their father) is an alcoholic and unable to care for himself. I am the sole provider for my kids and I worry about what would happen to them if anything were to happen to me. :(
    Which is why you do this to yourself. You have a great deal of responsibility and feel a loss of control as catastrophic.

    Truth is NONE of us have REAL control over what happens in all aspects of our lives. There is no way you can keep all challenges from crossing your life and trying to is folly. Once you can truly accept this fundamental truth, is when you can start to gain some control over your HA. You will then KNOW this worry of yours solves nothing. It will neither protect you from illness nor cause it to happen.

    ---------- Post added at 18:04 ---------- Previous post was at 17:50 ----------

    I have always felt HA stems from life's challenges or our views of life's challenges. HA is being used as a cover of our real issues in life--a big distraction.. For whatever reason we *think* dying of some disease is easier to deal with than things going on in life. Some of these difficult things we can fix and other things we cannot and we have to learn to deal with them as best as we can. We ALL have such challenges in life. My biggest challenge is properly caring for my eldest daughter who is severly disabled. I am always dealing with some issue with her. It is very difficult.

    Ultimately all you can do in your situation is plan for the worst but expect the best. Toss away the idea of early death or diabilitating diseases. That is simply a lie your mind is creating to distract you from the real challenges (and joys) in your life.

  9. #29
    Join Date
    Dec 2016
    Posts
    167

    Re: How did you get over the ALS fear?

    Quote Originally Posted by Sixpack View Post
    Which is why you do this to yourself. You have a great deal of responsibility and feel a loss of control as catastrophic.

    Truth is NONE of us have REAL control over what happens in all aspects of our lives. There is no way you can keep all challenges from crossing your life and trying to is folly. Once you can truly accept this fundamental truth, is when you can start to gain some control over your HA. You will then KNOW this worry of yours solves nothing. It will neither protect you from illness nor cause it to happen.

    ---------- Post added at 18:04 ---------- Previous post was at 17:50 ----------

    I have always felt HA stems from life's challenges or our views of life's challenges. HA is being used as a cover of our real issues in life--a big distraction.. For whatever reason we *think* dying of some disease is easier to deal with than things going on in life. Some of these difficult things we can fix and other things we cannot and we have to learn to deal with them as best as we can. We ALL have such challenges in life. My biggest challenge is properly caring for my eldest daughter who is severly disabled. I am always dealing with some issue with her. It is very difficult.

    Ultimately all you can do in your situation is plan for the worst but expect the best. Toss away the idea of early death or diabilitating diseases. That is simply a lie your mind is creating to distract you from the real challenges (and joys) in your life.
    Thanks sixpack. Your words of wisdom are always so insightful and helpful.

  10. #30
    Join Date
    Feb 2014
    Posts
    721

    Re: How did you get over the ALS fear?

    Quote Originally Posted by emmegee View Post
    Thanks in advance for your replies.

    I am currently dealing with a HA ALS fear. In reading a bunch of other posts on the subject, I see a lot of responses like:

    "I wasted a year of my life on fearing ALS"

    i.e. it seems there are a lot of you that have "been there done that" when it comes to the dreaded ALS Health Anxiety. Many explain it was a very dark period of time before they got over it.

    So what is your advice? How did you get over it? Does it just take time?

    It almost seems like ALS anxiety should be it's own distinct type of health anxiety!


    It is not a fear I've ever had, remarkably enough. And here I thought I'd had ALL of them. Lol.
    Ex-boyfriend's mom suffered from ALS, but it was coming on very slowly, and she was still capable of doing many things.
    I guess that's not the kind of thing that scares me, nor Alzheimer's. My fear is cancer (every type) and AIDS.... diseases that allow you to keep your cognitive facilities intact as your body rots around you.
    ALS does not scare me.

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