Me too

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bigmark1954

Very helpful member
Joined
Jan 31, 2014
Messages
1,035
Reason
PALS
Diagnosis
01/2014
Country
US
State
UT
City
taylorsville
Just got diagnosed with ALS yesterday .....I knew in my heart it was ALS, but now I am completely devastated. It is very hard to fight this MONSTER......kinda like bringing a BB gun to a nuclear war.........................
ANYWAY HELLO ALL
 
Welcome. Sorry you needed to find us . There is life after diagnosis. Really. It'll never resemble anything like your "old life" , but still worth living!

I also had my suspicions, before I saw the neuro - but it's hell hearing the words out loud! I think I was in a shock fog for about 6 weeks, my mind going 100 miles an hour and tears ebbing and flowing and ebbing. After a while you will find your center and you will navigate your new reality. You'll even laugh a lot too. Give it time. Be kind to yourself.

You might opt to watch "A B C's of ALS" (Forbes Norris ALS Research Institute) on youtube. Three part series - informative, sensitive and reliable information. My family and friends watched it too - it really helped.

The best advice I received was " one day at the time" and so it goes. It's not a cliche.

So big Mark - we're here for you. 1954 was a good year for me too!
 
So sorry for your diagnosis! It's so very hard to hear. But welcome.
 
Thanks guys......I think I am in the shock phase....seems to be no light at the end of the tunnel, but I can see where the tunnel ends!
 
Sorry to see you, but glad you are here. Check out the "Fun With ALS" thread, it might bring a smile to your face :)
 
Welcome big mark, I too am sorry that you have to be here, but I have to say, any question you may have most likely can be answered here. Stay strong my friend,
Sissy
 
Hello Big Mark and so sorry that you too are joining this group. Ottawa girl had excellent advice. I've been living with the hell of hearing the same news for almost two months now. The first weeks it felt like I would never be happy again. Now I find something to be grateful about every day and that helps. I've already learned to get up each day and do my best to make the most of it and hope you will be able to do so as well.
 
Hi Big Mark and sorry you find yourself here. I have been living with the hell of hearing the same news for almost two months. It's still tough, but the days have gotten a little easier and the black cloud that was hanging over my head has lifted a bit. I decided early on that I could sit around crying all day and being depressed, or I could make the most of each day with the new reality. Ottawa girl really echoed my thoughts and gives good advice, so be good to yourself.
 
Welcome Mark,
It is said only perfect people get ALS.
Man, I hate being so perfect!
Cheers,
Casey
 
Welcome Mark, so sorry you had to hear those words and join our elite group, but this is the best place to be.

I so remember that first month or 2, you are in shock. Please do allow yourself to go through whatever emotions you need to. Elaine has been a huge inspiration to me with her beautiful attitude, and it is true that there is life after diagnosis. I still feel that 'shock' at times 8 months down the track, but it change.

Casey you cracked me up, nearly spilled my coffee!
 
Hello Mark; So you are in the vortex too. This disease is like one of those really scary rides at an entertainment park, with lots of ups & downs, spins, wanting to get off but they won't stop the ride. But eventually the longer you ride it the less scary it is, but then it becomes annoying. There are victories in it as well though, so right now just hang on for dear life, scream and cry but it will get easier.
We spend most of our energy now, just living, but we know who our really true friends are, and we now stop waisting time because we know that it is limited.
The PALS & CALS that I have met are some of the most amazing people that I have ever met, and even though they are going through hell they still seem to have time to support each other.

Casey your crack me up, but I also heard that ALS is the nice guy disease. I must admit, since knowing my husband the last 3-4 years, I have never said "you're right" so many times. I hate it! I thought I was the perfect person.

Paulette
 
Thanks to all for the encouragement.......today is worse for me, all of my friends and family want to be with me, and I just want to be alone because I am so emotional about this. I have had to overcome a lot to get to this point....the hardest was the loss of speech and blowing up balloons for my dog "Harlee".
I did not think I could cry this much, but I guess it is part of the symptoms. I come from a biker background, and it is very embarrassing for me to cry when I am around friends and family. I hope I can get ahold of myself, because this really sucks!
 
.Check with your neurologist. There are drugs for that emotional roller coaster. The shock will wear off in a little while. And no question is too silly we are here to help each other
 
The first week totally sucks and it was impossible to think of anything else. It was like being in a total fog. With time the comfort of friends and famIly felt good. And my dog Is a constant source of comfort. Give yourself some time. It still sucks but it gets doable.
 
Hi, Mark -- welcome from Houston Texas!

Our thoughts are with you as you trudge this path with us.

>...today is worse for me, all of my friends and family want to be with me, and I just want to be alone because I am so emotional about this. I have had to overcome a lot to get to this point....

I am in my 5th month and have the same issues. This is very much a head game. I admire many of the folks here. Also see:

My ALS research: Microsoft's first national Super Bowl ad might just bring a tear to your eye - GeekWire


>the hardest was the loss of speech and blowing up balloons for my dog "Harlee".

Me too. 4 dogs and I can no longer walk them, do field work, et al. :-(


>I come from a biker background, and it is very embarrassing for me ...

ditto, although I have not ridden in quite a while. '47 knuckle, '62 pan hard tail, '73 sporty xlch, and *lots* of desert 2 strokers. as we say, those were the days! :)
 
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