Old 06-27-2012, 04:16 PM #1 (permalink)
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Default 27 yr old with ALS

Hello everyone, my name is Daniel and I was diagnose with ALS in Feb. of 2012. The doctors told me I've it for 1.5 years before I found out. Now, I hae two little girls that are 5 and 6. I dont know how to tell them that I'm dying. Please help me with this...
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Old 06-27-2012, 04:38 PM #2 (permalink)
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Default Re: 27 yr old with ALS

Here a a few threads on the subject.

Telling the Kids

Need feedback re: talking to the kids

Talking to the kids - follow up and thank you!

http://www.alsforums.com/forum/do-i-...s-disease.html

Telling a toddler that Grampie is sick
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Old 06-27-2012, 04:50 PM #3 (permalink)
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Default Re: 27 yr old with ALS

Here is a set of videos you need to watch. here is the first one, there are links to the other 2 on there

Director of research at the Forbes Norris ALS Center - Video
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Old 06-27-2012, 05:04 PM #4 (permalink)
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Default Re: 27 yr old with ALS

Hi Daniel,
So very sorry to hear about your dia g no sis. It must be incredibly difficult at such a young age and with such a young family. There are lots of helpful and caring people here who will do what they can to support you and answer your questions. So sorry you have had to find this site but I feel sure you will find it helpful. All the best.
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Old 06-27-2012, 05:11 PM #5 (permalink)
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Default Re: 27 yr old with ALS

I am so sorry for you and your family. I am 59 and have had a full wonderful life for which I am most thankful. I heard about a young soldier here at Fort Campbell who was 24 when he was diagnosed with ALS. My heart goes out to all those in their 20s or 30s who come down with ALS. I have a very good friend named Peggy. She was very young like your daughters when her father was killed in Viet Nam. She is a wonderful lady and she is strong and resourceful, as I am certain your daughters will be. I too have a daughter. She is 35 and she cried when she heard about my diagnosis. Everyone is different and nobody knows exactly how long you will have. The one thing you do know is you have a fatal disease, but knowing that, you can make certain every hour, every day counts to the max. May God give you the strength to fight this and may it be God's will that you live to see your daughters graduate from high school......that is my prayer for you........God Bless.......cheers.....fp
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Old 06-27-2012, 05:52 PM #6 (permalink)
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Default Re: 27 yr old with ALS

Hi Daniel, I'm so sorry to meet you here. Best advice I got here was live each day to the fullest. Embrace your family. Do fun things with your kids. Come here to rant or rave. Get in touch with your local ALS association for information and assistance. We are here for you.
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Old 06-27-2012, 06:05 PM #7 (permalink)
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Default Re: 27 yr old with ALS

REmember, each c ase is different. I had a probable diagnosis in 2009, and I am still walking, talking, breathing and eating. One day at a time. I don't have kids, but I bet a video would be a great idea .

Good luck, as we are all here for you. The only silly question is the one you don't ask, We will help any way we can. After all, Stephen Hawking has lived with this for 40 years!
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Old 06-27-2012, 06:09 PM #8 (permalink)
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Default Re: 27 yr old with ALS

I'm very sorry that you have been d x d with this. How tragic. Our son was six when my husband was told he had ALS. We were honest and told son that daddy was sick and that's why he sounded a bit different and kept dropping things. As son got older, we could tell him more and eventually the inevitable outcome of the disease. Just tell your kids what is appropriate for their age. No need to burden them needlessly.

Enjoy what you can, while you can with your family!
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Old 06-27-2012, 08:29 PM #9 (permalink)
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Default Re: 27 yr old with ALS

Sorry to hear about your diagnosed. I was diagnosed at 28 when my daughter was 1. Now Marley is 6 and has lots of questions which I try to answer but I stay away from the death issue. The ALS clinic and als association have books to help explain what's going on that help. When it comes to talking about all the medical equipment I have found that showing her how it all works helps. Like others have wrote take it one day at a time.
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Old 06-27-2012, 09:48 PM #10 (permalink)
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Default Re: 27 yr old with ALS

So sorry to hear about your diagnosis. Lori has given you some excellent links about talking to the kids. They're pretty sharp, even at such a young age, just answer honestly. My Grandkids are 4 and 6. Usually they'll have a very specific question in mind and once they're satisfied with the answer they're given they move on to other things. They love my lift chair and the PWC.
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Old 06-28-2012, 10:09 AM #11 (permalink)
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Default Re: 27 yr old with ALS

Hi Daniel,

I am sorry to hear of your diagnosis. My Dad was diagnosed with ALS a little more than a year ago, but can trace the onset of symptoms back almost 3 years. We currently live in KS but are moving back to NC in a week to be close to my parents. I have two sons, ages 14 and 8 and this has been a year or many varied emotions for my boys, as well as myself ( as I am a daddy's girl). They are very close to their "grandpa" and we speak openly about what ALS is, though my sons are older than your girls. Both of my sons have experienced a range of emotions this past year from anger to deep sadness at times. Though we are honest with the boys about the realities of ALS, we try and keep our focus positive and appreciate the many blessings we have. For us, our Christian faith has been instrumental in helping our entire family cope with this disease. This has been hardest for my youngest son and we encourage him to not only speak with us, but also his Grandpa at any time.

At this time we are in a place of accepting that it is what it is... but that doesn't mean we always like it. My husband is active duty Army and we were able to be given a compassionate reassignment, as both of my parents are dealing with terminal illnesses. I feel so honored that I can go back to NC and give to my parents at their greatest time of need.

Here are the links to the Triangle Area Support group information if you haven't been already. One is for you and the other is for both you and your caregiver. When I was home visiting last, I attended the group with my Dad and it was a very welcoming and informative group.

Triangle Area ALS Resource Support Group | ALS Association - Jim "Catfish" Hunter Chapter

Triangle Area ALS Caregiver Support Group | ALS Association - Jim "Catfish" Hunter Chapter

Feel free to PM me with any questions or thoughts. Dad is seen at the Duke ALS clinic and I only have great things to say about that clinic and staff.

Will add you and your girls to my prayers.
Allison
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Old 06-29-2012, 04:32 AM #12 (permalink)
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Default Re: 27 yr old with ALS

Daniel,

I too am sorry for your di ag no sis. My 6 children range from 32 down to 12. And as CJ said, explain by age and maturity. Sadiemae is the go to lady when it comes to finding links. All great advice, so it really doesn't need repeating. So I would like to welcome you to the family. I sure wished we could have met somewhere else.
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Old 06-29-2012, 10:18 AM #13 (permalink)
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Default Re: 27 yr old with ALS

Daniel,
I come here often to get advice and not to feel alone in this. It is a such a rare fatal disease. When my Mom was diagnosed, I had heard of it, but I wasn't sure what it did. Now I have done tons of research and have talked to many people, I like coming to this forum the most. Everyone is very friendly and informative. Spend as much time with your babies as you can. I have 3 boys, ages 3 months, 5 years and 8 years. They are very close to my Mom and it was difficult telling them of her diagnosis. We didn't give them too many details, just that she talks differently because she has ALS. They asked, what's ALS, and I told them it is a disease that is not common and there is not a cure yet. But, we are Christians and pray for a healing everyday and a cure. I have told them to ask me anything they want and talk to us about their feelings at anytime. I try to be straighforward as much as I can. It's such a difficult thing....
Very sorry for you and your family.
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Old 06-29-2012, 12:26 PM #14 (permalink)
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Default Re: 27 yr old with ALS

So sorry to hear you have ALS, but welcome to the forum. I was diagnosed last year at age 32 and I have a 5 year old son.
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Old 07-02-2012, 08:08 PM #15 (permalink)
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Default Re: 27 yr old with ALS

Daniel,

My heart sank as I read your post. I was diagnosed just about a year ago at the age of 44 and I'm still struggling with how best to tell my three young children (5 / 8 / 10) about my situation. My wife and I have decided early on to let the ALS set the timing for how much we tell the kids. So we have told them the mechanics of what is going on "daddy's muscles are not working right, not getting correct signals from my brain", and have slowly expanded the impact as my situation evolves. This approach has helped them all talk about what they are seeing in an age appropriate terms. We have avoided giving it an exact name, and now feel, given my mobility issues, that we will soon be sharing more specifics so they/we can all openly embrace the ALS community.

Telling the kids is a tough thing and we will say an extra prayer for you and your family.

Regards,

Tommy in MD.
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