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New member
Nov 10, 2005
Hi. My father was diagnosed with ALS about 5 years ago. Me and my mother are the primary caregivers. Having ALS is just as hard on us as it is for my father. Sometimes I feel like no one else is going through the same thing. I wonder what I did wrong to deserve this? I can be in a room full of people, but yet feel so alone. I have my father on my mind 24-7. Is it only me?, or does every one go through this?

Cape Breton, Nova Scotia
Unfortunately Stacey I would say many people are feeling the same way you are. Once ALS hits any of our loved ones it almost consumes us becasue there are really no answers . All we have right now is support groups like you have joined which make your life a litttle more bearable. As far as thinking you have done anything wrong is absurd. What could you have done to create this disease or be responsible for it? Love your father keep his memories alive and cherish every day with him.
Kim ALS About Loving Someone
Hi Stacey,
I know how you feel. It is a horribly lonely thing to go through. It seem like no one can possibly understand what you are going through. But one thing I have learned in the short amount of time since my mother was diagnosed ( 3 months, and going fast ) is that you cannot let this bring you down. I have some very bad moments! But I force myself to smile and keep going. I beleive this is the only thing that will get me through. Some days it's harder than others, as I love my mother so very much, but I know that she wants me to be happy. Take care.
Hi Stacey:
You are here... take heart and read many of these posts. You are definitely not alone in this. There are people all over Canada and the world, as it seems, that are here, willing and able to listen and provide their best guidance in your struggle with ASL. All you need to do is reach out.
Good Luck

thanks everyone. I feels good to know that there is someone who really does understand how I feel and what I am going through because all of you have been through it, or are going through it. My father will be going to the hospital monday for a check-up because he has been retaining ALOT of fluid and his feet and legs are very swollen because of it. I'm scared that it may have spread to his lungs or heart, so I guess we'll find out monday. Hopefully everything will be fibe besides that. I will keep you all posted. Once again, thank you all for your words...they mean alot to me.

Please let us know how it goes on Monday. Remember, you always have people who understand and want to listen.
Take care, you are in my prayers.
Hi Stacey

I know exactly how you feel. I go anywhere away from my fiance even though I know someone is with him to care for him and I never have a good time because I worry the whole time about what if's, or for guilty if I laugh or smile a little while he is at home.
You are not alone.

I know exactly how you feel. Sometimes when people are talking to me about their troubles I just find my mind drifting away. People don't realize that their everyday struggle with life is something they should be grateful for. You never know when a devastating illness, such as ALS, will strike.

On the other hand, when I start feeling sorry for myself and my family, I think about other PALS and CALS that have it much worse than we do. Some visit this very forum. And I am thankful for all that share their individual stories with us so we can find strength and know that we are not alone.

Please let us know how your father and your family is doing.
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