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cmax

New member
Joined
Jul 2, 2011
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4
Reason
Loved one DX
Country
CA
State
BC
City
Vancouver
Hi, I just wanted to thank you for being so open with those coming on the first time. My mother passed away from ALS about 7 years ago so I know how this disease impacts lives! My mother was an extremely strong woman and she fought ALS tooth and nail to the end. Even when she could have been confined to bed 24/7, she insisted on being gotten up, dressed, etc and making sure her favorite radio station was playing. She also insisted on spelling out everything on her board as opposed to pointing to what she wanted. She is my hero. And even tho I know that it is highly unlikely that I will develop the disease, I tend to go thru a scare every couple of years being hyper vigilant. I am going thru one right now, and have an apt. to get nerve testing done in a couple of months, but in the meantime, the stickies were really helpful settling my mind. I have some nerve stuff going on in a hand with numbness pain, (which I read is not ALS symptomatic), and have had pain and cramping in a foot and muscle pain in the calf medial outside muscle which I worry is a sign of possible weakness. As well, of course, I have been having fasciculations going on everywhere. I realize that you on the forum must get sick of people writing in fearfully, but it is helpful, and I do want you all to realize it even if you want to give us a slap sometimes. Thanks for reading. The worry wart daughter.
 
My mum insisted on spelling and grammar with full sentences too. Even if I guessed the rest of the sentence she would still continue. I guess it was the only independence she had and I learned to stop finishing her sentences for her. I suppose I wouldn't do it to someone talking in front of me.

As far as I know my mum is the only family member to have been diagnosed with MND but it still worries me when I get cramps or numbness even though they're not the best indicators of the illness. I know its very unlikely but I think I'm hypersensitive to anything and everything and I'm not surprised you feel the same.
 
hi Candle 2014. Yes, it is difficult watching a loved one going thru this, and it always stays at the back of your mind, ready to pop out if anything feels a bit "nervy"! I am still worried about my foot/leg, but there is isn't much to do about that but wait until further testing. Hoping the odds are in my favour that lightening doesn't strike twice in one family.
Cheers cmax
 
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