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Sep 17, 2005
my mom was diagnosed 3 weeks ago with ALS. She has had problems for the last year and a half, the doctors just didn't know what it was until they finally send her to Vanderbilt. I'm so scared, scared of losing her and of how things will be for her until she does go. This seems like such a hopless disease. My dad and I will be her primary caregivers, as I live with them. I hope I can do it right. How do I even start? I just want her to feel as good as she can, and I'll deal with my emotions later. Any words of wisdom or hope?
Hi Jennifer:

Sorry to hear about your mom. It's quite normal to be scared but as you get involved with your mom's care and condition that will dissipate. What your mom needs now is for you to be supportive of her in her fight to stay vibrant and functional. As the symptoms progress (and they will come gradually) you will likely not even notice the changes and how you and your mom have dealt with them.
The best idea is to get involved with a clinic that specializes with care of ALS patients. They'll be able to guide you through this as you help your mom cope with the changes.
Some of us are caregivers... or used to be (CALS) and some of us are people with ALS (PALS). Either way there's lots of help here. You might try reading the Manual for People Living with ALS on the ALS Society of Canada web page (available at the top left of this page)
Stay in touch. Ask questions as you need to. You'll find that most people are here to help.


Hi Jennifer. Sorry that you have to be here and for your mom. If you go to the front page here there is a place where you can download the Manual for Living with ALS. It is full of information for people with ALS and their caregivers. It is more for Canadians where they talk about where to go for support but some of these services may be available in the US. We have a lot of new people on the forum from the US. Feel free to ask questions or rant or do whatever you need to do to get you through this. It is not an easy ride but you have found some good and supportive people here.
Try to be there for your mom. A hug a smile or just a shoulder to lean on can be the best things for you to help her cope. She might not want to talk about the disease right now. Different people handle it differently. Try not to lose your sense of humor. You have to look after yourself because it is easy for caregivers to get run down physically and emotionally looking after their loved ones.
Once again sorry that you have to be here. Take care. Al.
Jennifer - you are welcome here. This is a great place for support too! -me-
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