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New member
Sep 22, 2005
I just wanted to say a couple things about my grandma, who is by far, the greatest woman i know. We have had feeling for a month or 2 that she has als, but we were just given the diagnosis yesterday. this is such a hard concept for me to grasp. My grandma has been a national ballroom champion, a business owner, a jet-setter and a go-getter. A DANCER for gods sake! She's lived a life that has depended on her legs. 6 months ago she was dancing in a show, amazing all her friends at the seniors center, now she's in an electric wheelchair. It scares me how fast this horrible disease is taking over her body. I feel so selfish to even think of how hard this is for me when i know it must be 10 times worse for her. To go from being such an independant person to now needed someone to help you to the bathroom and in and out of bed. She has always been the most amazing woman and my idol. To see her stuck in that chair, it doesnt even seem like who ive grown up with. I would have never pictured this.

I guess im writing here b/c i dont really have any place to vent. My friends dont understand and its hard for me to to talk to my mom. She has been so amazing with my grandma and is so strong for her. But then she comes home and breaks down to me, and i try to be the strong one for her. I just dont think im strong enough to be the strong one. Im in my second year of university and live away from home. Im having a hard time at school so far with this on my mind and i feel awful for not being home enough to spend time with my grandma.

Another thing that is contantly on my mind is - what if i have to go through this all over again with my mom? As i've read through all these postings, no one has mentioned it. In nearly 10% of the cases, als is hereditary. I know there is some test that can determine if you have the specific gene that can pass this along. Has anyone taking that test? What an awful thing to go through. Watching a loved one die of this disease, then waiting for another, or even yourself.

i think i've passed my quota for ranting and raving today lol. its nice to have somewhere to unload and to know that most ppl here are feeling the same things. This is the hardest thing ive ever gone through. My heart goes out to each and every one of you.
- Lin
Hi Lin:
ALS tends to be pretty indiscriminate in who it attacks... the only constant is that people who are affected tend to be decent, fun folk.
I'm sure that your grandma knows how you feel about her and the last thing that she'd want is for this to affect your studies (and your future). It's okay to be upset but when you go home, it's also important for you to "grab a mit and get in the game" to help out.
My daughter was goinginto first year at Queen's when my wife was stricken with ALS. In the intervening 4 years, she ws home very little, and missed the daily grieving process that the rest of us were going through. She's still making up for it... and my wife has been gone for over 4 years.
This is a good place to vent... you'll find strength here... but do yourself and your grandma a favour and try not to let this interfere with your University life.

Lin - it certainly is an aweful experience, but as T said, you can't let it affect your studies. First, remember, your grandma is still the hero you've always known. She is the same, strong person you have known her to be despite her physical limitations. Continue to treat her with love and respect, as I'm sure you are. As for being the strong person, you can only be as strong as you can be. Be real. If you don't have anyone to talk to, consider seeing a counselor through your school or something. You may feel like they don't know what you're going through either (and they probably don't). But, I know from personal experience that they will be able to help you see things more clearly and at least let you vent and cry without judging.

You are always welcome here. This group knows what it is to vent, laugh and cry. You have to let yourself feel the many emotions so you don't explode. Keep posting here! Melissa
Hi Lin. I'm sorry about your grandmother. I see from your posting that you are in Toronto. There is a support group in Toronto. The groups aren't only for patients. Families and caregivers are welcome as well. There will probably be someone there that is possibly in the same position as yourself. Most friends really don't understand and it is sometimes a good thing to talk to people that are directly involved.
The details about the support groups can be found under ALS Ont. on the home page. Good luck.
Lin, I am new to the group today and just read the message you posted. My mother 77 has ALS and lives with me. She has 13 Grandchildren and 9 Great Grandchildren. Since mom can't get out and about much and is unable to do much of anything and likes to sit in her room the most important thing has become visits. She loves it when the Grandkids visit and share what is going on in their lives. It makes her happy to know they are doing well and becoming responsible young adults. I really think the best help you can give to your grandmother is to share your life with her by visiting when you can and sitting and talking with her and writing notes or sending cards when you can't visit. It only takes a few minutes to but a card in the mail with just a few lines but will help to let her know you are thinking about her and love her. It would be nice to send your mom one once in a while too. Even when we see people on a regular basis it is a real cheerup. Another thing I have learned is schedule visits with the caregiver are wonderful. If you know you are going to be there even for a short visit it lets the caregiver plan some time for themselves if they know someone is going to be there. I hate the thought of ALS taking over my mother's life and my #1 prayer is for God to take her home before she has to suffer--I can live with that. Hang in there and cherish the memories of your grandmother before ALS. Marcia
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