Life definitely changes when you find out your parent has ALS. It’s not easy and things may feel different around your house, but the ALS Society of Canada is here to help you feel a little less alone, scared, angry, and confused. Visiting this web site is an important step in learning more about ALS and coming to terms with how your life is changing.
We can’t make the ALS diagnosis go away, or the disappointments that come with it, but we do know this tough situation will reveal opportunities to experience many positive things. It may seem hard to imagine now, but it’s the truth, so stay open to the idea!
You may also find it annoying when people will try to help you or tell you to “stay strong.” That’s understandable, but you may just find some comfort in their efforts which will give you the support you need. Looking forward to a bright, hopeful future for your self is definitely possible.
We hope the als411
web site gives you the support and encouragement you may be looking for. Most importantly, know that:
YOU ARE NOT ALONE
YOU CAN MAKE A DIFFERENCE
It’s hard accepting your parent has been diagnosed with ALS and you will probably feel a lot of different emotions now, and later. And don’t feel badly about feeling angry or resentful at times. That’s normal. But, it is important to manage your feelings in healthy ways. The als411
web site is here for you to learn about other young people like yourself who have had a parent with ALS. They want to share with you what they experienced, how they coped, and give you advice. They are telling their stories to make sure you know you’re not alone. To hear their stories, click on their names under, “Hear Their Stories
To read more stories about teens and young adults living with a parent with ALS, click More Stories
. If you have a personal story you would like to share on this web site, go to the Feedback
section on the site menu to send an e-mail and your attachment to the ALS Society of Canada.
Read more about the real-life stories, and additional helpful information on processing your feelings in When your parent has ALS—a booklet for teens
. This booklet covers the following and can be opened by clicking on the title above:
- Learning of your parent's diagnosis
- As the illness progresses
- Being a caregiver
- Relationships with parents
- Relationships with friends
- Talking things over
- Bereavement (feelings about your parent dying)
To request a hard copy of this booklet contact the Provincial ALS Society in your province. They may also be able to refer you to places that can provide special help if you need it. If you would like to get to know other kids your age living with a parent with ALS, they may be able to match you up. Click on this link for phone numbers, web sites, and e-mail addresses for all the Provincial ALS Societies in Canada
. To “meet” people on your own, click on the “ALS Facebook Support Group
” icon and join today. Additional sources of help can be found in the “Resources
” section of the site.
Doing your part to help your family work as a team can help to make things feel as normal again as possible. Other kids with ALS in their family have found that taking action and getting involved makes them feel they have the power to make life better for their parent, have an impact on the fight against ALS, and shape their emotions and future in a positive way. Helping can take many forms such as household chores, assisting with the care of your parent, doing things to make people more aware of ALS, and raising money to find a cure or provide support programs and services. To learn more about ways you can make a difference, click on “Get Involved