Not open for further replies.


New member
Apr 6, 2006
Loved one DX
Nova Scotia
My name is Alyson and my father has recently been diagnosed - sort of. He told us over supper on Sunday that this is what his doctor expected he had. We, as a family, had an appointment with his neurologist yesterday where we were told that pending an MRI, the doctor is sure that the reasons for my father's weakness is ALS - no other explanation has been found for his symptoms.

This is all new and scary news for my three sisters and I. The oldest, being an RN in LTC facility is taking it the hardest. The next one is researching like crazy and the next is avoiding. Personally, I feel like a deer in headlights and the only thing I can really think of is that I have to take a lot of pictures because my youngest may not remember (she's 6 months old) and my oldest (3), I just don't want her to forget. I'm also preoccupied with finding my father people that he can relate to -- that either have the disease or know someone who does.

The thing that is weighing on us the most is how to tell the grandchildren. The oldest is 16 and we're sure she'll be fine but telling three more, ages 6, 3 and 6 months is going to be difficult. Well, my 6 month old is obviously not something I have to worry about telling. I know to take it slow, let them see when we are upset so they know that it's okay to show emotion. I know not to tell them the end result and to take it one step at a time but what kind of words do you use and what questions should we expect?

I'm lost here and hurt that we have to tell these kids, who adore their Grampie is ill but I just want to know what to expect.

Thanks....sorry this was so long, it felt good to talk.

First of all, I'm very sorry to hear about your dad. Please know that you will find many answers and lots of help here with these kind people in this forum! They have been a God-send for me!

When my sister told us of her ALS diagnosis, I also struggled with how to tell my daughters (8 and 6). For now, they know she has ALS and that it will make her lose the ability to use her hands, arms, legs, and ability to speak. They don't know the WHOLE story yet, but we got very helpful books from an elementary school social worker that will help when my sister is showing more signs of ALS. I can try to find where the social worker ordered the books and get you that info. They are wonderful books that help kids process exactly what is happening and how they are feeling about it.

As for them remembering your dad, keep taking lots of pictures and videos...especially ones with them with your dad. I lost my other sister (not the one with ALS) when I was twelve and the pictures of us together take me back in time and bring me to a very happy place in my life. I'm sure the same thing will happen for your father's grandchildren.

Take care!

I think my pictures issue comes b/c I lost my mother last April to a 30 yr battle with MS. I know how much those pictures mean to me and family. I must invest in a good video camera, put everything on DVD for my sisters and I.

It would be great if you could find out where to get those books. I would really appreciate all the help. We're not planning on telling them until all the results are in from the bloodwork and MRI. Having information in advance would be an asset.

Thank you for the help,
Hi Alyson,
I too am sorry you are here, but as a fellow Maritimer, welcome to you. This is a good place to come.
I have a couple of books on telling children about ALS that came from the ALS Society here in New Brunswick. One is called "Grandpa, what is ALS" written by Benny Gold-Babins. It is a picture book more for younger children, but it says it is for the whole family. The other one is "A Booklet for Young People", which is more for teens. These books were both produced by the ALS society of Canada.
Someone on this forum also recommended a website that tells about ALS to young children. I am sure someone will come on with that website.
Hugs and prayers,
The website has a link down on the left side of the homepage that deals with telling children about ALS. George Goodwin has had ALS since 1990 I believe and runs the site. You can also sign up for his free newsletter.
Last edited by a moderator:
Thank you Leah and Al for the resources. I love knowing that there is somewhere I can go for support and information. It's been a rough couple of days trying to wrap my head around everything but coming here has been great.

Now, if I could only have my sisters join.
Hi Allie,
I am glad this forum is a help to sure is to me.
As you are just getting used to the idea that your Dad may have ALS, you will not want to say anything to your children for awhile, but if at any time you want the book , "Grandpa, What is ALS", and can't find it, just let me know and I will send it to you. I think you have quite a bit of coming to terms with this yourself before you say much to your children, but I think this book, written by a former teacher whose father got ALS at age 72 is good. She had two children and was inspired to write this book in the hopes that it would help children understand ALS. Her son illustrated the book.
Hugs and prayers,
I received this website from another person on this's a really cute "kid way" of getting to know what ALS is in a very non-threatening manner. It should start many good conversations. I will look in the books this weekend and try to find an address (or I will ask the social worker next week) and get that info to you. The books I have aren't specifically for ALS, but can be used for any serious illness.

Hang in there while you're trying to wrap your head around this, as you said. When I first learned of my sister's ALS, I didn't know what to think, how to react, what questions to ask, etc. I'm sure you will find the people here to be extremely helpful and supportive. They're a great bunch!

I just wanted to give credit to Al for hooking me up with that website for kids. It's great for little kids especially!
Hey everyone,
thank you for the support and the help. I have that site tagged in my favorites and when the time is right, I think that's what I'll be using to guide me through explanations. You're right about waiting, it seems everyday that has passed, I feel worse about everything and I have a new question. I don't really want to think too much about it until after the MRI but, on the other hand, I feel like I have to prepare myself.

Anyway, I have work to do and I don't want to get in trouble with my boss.
Thank you again for all your support.
Not open for further replies.