I am new here

[stephie]

Hello! I am new to this site. My husband was diagnosed with ALS just over a year ago. He was 39 at the time, and we have two children ages 8 and 14. My husband seems to be progressing pretty quickly. He is using a walker all of the time and has been fitted for an electric wheelchair. I am wondering if there is anyone else out there with younger children who are dealing with ALS. I worry so much about how this affecting them.
-Stephie

 

[hopingforcure]

Steph,
Hi, unfortunately many of us here have young children, I worry endlessly what the long term effect is going to be on my child. My husband often says that he thinks that children who go through this kind of thing will actually be more kind, sensitive, caring adults. I think sometimes he is correct, some of the biggest advocates for ALS have been children, and young relatives of those with this disease. Welcome to the group. I know Jimmercat, Liz, both have young children also...Hoping

 

[brooksea]

Hey Stephie!

My son will be 8 in July! He's almost as tall as me! LOL

We just take it one day at a time. If you obsess on the disease your kid will feel like the disease is more important than he/she is. IMHO! It does take a lot of patience to get through their heads sometimes about losses that may come about, where the parent is no longer able to "play" and do the things normally done. Like catching a baseball or playing tag. Believe me, they know more than they let on and will push you to the limit. And on the other hand you can observe him with his friends while he expalins why "daddy can't do that any more because he has ASL" (he means ALS)!

So, like I said we take a day at a time and explain as we go along. We all are gonna die someday so why focus on this one particular grim reaper? Sorry - have to maintain the sense of humor or you will go mad...

 

[stephie]

Thanks for your support

Thanks for your support. There are days when I just don't know how I am going to deal with what is coming in the future. As busy as I am right now with work, raising kids, and taking care of my husband, I can not imagine what life will be like once he can not talk or sit up. We are all in good spirits most of the time, but we have our moments.

 

[andyvaughn]

Stephie, my husband was just diagnosed this year, February 20th to be exact. We have 2 children, 17 and 13. They are actually Jim's step-children, but has been the only father either of them have known. As a family we are all adjusting to each change each day. We have had a lot thrown at us, as any family with ALS does. I have to say, my kids are being real troopers about it though. We have sold a lot of our toys, and are down sizing our house, for a cheaper/smaller single story. The kids have been so great about not showing any sign of resentment towards my husband about that, in fact, I don't think they feel any. Teenagers can be quite self centered, so I had kind of thought that might come up,but so far so good. My husband has been progressing rapdily also, in just a few short months he has lost the ability to work, his speech is not very understandable any more.. you know the drill. We have 2 choices in each new loss, accept what is and work around it, try to measure God's grace in our lives as best we can, or fight and cry and lie in self pity. I would be a liar if I told you that I didn't have self pity, that I can't stand the idea of losing my husband to this dreadful disease, but each day I get better at living more in the moment, being content with what we do have, without dwelling on the next thing (meaning his functional status, not literally material things) that we might lose. I go nuts when I am in that place, that fear of what is next. Circumstances dictate that some preparation must be done in anticipation of what is coming, such as selling the house, but I don't have to spend all day there. I have found that my children follow my emotional lead, if I try to live in that graditude for what we have, they seem to follow. I have also found it is a team effort, maybe your little guy can learn to help out, perhaps more than other 8 year olds, but, this is a team deal, you know? My son, who was quite lazy, has learned recently that it isn't so bad helping around the yard, and helping around the house. I think he even feels pretty good about being it!
This disease is so incredibly devastating, but living it first hand sure does teach us about the things of real value, about compassion for our fellows. I am certain that our children are going to be given gifts of wisdom and charachter that wasn't asked for, but can be a positive side effect of living with ALS. I wish you the very best, .... Andrea - wife of PALS Jim.

 

[debby]

I am new too with an eight year old

Hello - funny how life works - I decided to join this evening for a different reason - but the first thread I read was this one. Jeff was diagnosed this Jan officially - tenatively last August. We have been married 25 years. Our youngest is 8. Emily- and daddy's little love. The boys are older - timmy 21 and bryan 16. but it is Emily we worry so much about.
We are a pretty happy upbeat family. And open about what is facing us to a degree.
You can't stop all the chatter around you and eventually the kids hear, but mostly they see. See the changes in his strength, his endurance and his energy. Jeff is(was) a big muscular man - his left side is wasted terribly - now moving to the right. He still can walk - we figure until July.
But on valentines day Emily broke down. Daddy wasn't home yet from a meeting. She crawled in my lap and cried and said she was so worried about him. I told her the truth... And I lied. I told her daddy was sick. I told her he wont get his arms and legs back. But I told her it would be a long long time before Dad wasn't here. Maybe I didn't lie as we all know that the timelines are so variable.

I made a decision though to stop living in the tomorrow and the whens. By doing that I was burying him before I had to. I decided to live in today and each little thing was not a milestone or a major event it was simply something to handle that day - like working out any other issue. So sewing velcro in place of his buttons on his pants becuase he cannot button anymore (and I cant go to work with him and button him up in the bathroom) was nothing big, it just is. Having the guys come out to look at building a ramp was nothing big - just like having the gutters cleaned. Jeff reacts to my mood and my hopefulness. IF I'm up, the world is up (if mom isn;t happy the whole world isn;t happy) so I stay up.

except on business trips I have to go on - then the alone time is rough - sleeping in a big bed alone - too darn hard. I used to travel much more - I have cut it back and now I red eye home - cuts out one more night in a bed alone -

The only thing I have is a trust in God. I know that this path was given to Jeff and I for a reason. I may never know why but I know it is for good. Jeff may simply be a cog in the big research wheel that one day 5, 10 or 20 years from now saves thousands of lives. It may be that our path is to cross someone elses to show them something about truly giving it up and over to God. I do not know. I think God was helping me to learn I cannot be smart enough, savvy enough, read quick enough to fix this. I simply have to bend my back and pray for love, guidance and strength and really, I mean really give it over to him. Trust him that us two girls (Emily and I) will be okay when the time comes. That we will be okay, we will be happy and we are in his hands.

It's nice to meet you Stephie - my name is Debby.

 

[stephie]

It is great to hear from all of you have who have children! My husband and I don't really have any contact with other families dealing with ALS. We are both still working, so joining a support group really hasn't been an option yet. My husband seems to be in about the same place as your husband, Debby. We are lucky that he works for a company who has told him he can work as long as he wants to. I don't think he actually gets anything accomplished at work because his hands have gotten so bad. I think he will probably be finished walking and working this summer.

Andrea- your kids sound great! My kids are very helpful some days and seem to resent having to help other days. We all struggle with taking things one day at a time while planning ahead, which is tough to do. We thought about selling our split-level home but the housing market in Minneapolis is terrible right now. I don't think we would ever sell it. We are looking at at least $20,000 in construction to make just one level of our house accessible.

 

[andyvaughn]

Stephie, I can really relate to your situation. The housing market here isn't too much better, however, things are starting to pick up. We just don't have any other options. My husband is a contractor, and he simply cannot do the work anymore. So, even with SSDI that puts our current mortgage out of reach for just my income alone. We are lucky that we have enough equity that we can still buy something. I also have the good fortune of telecommuting for my job, thank God.... as far as your house, I have seen stair lifts that aren't terribly expensive, I think in the range of a few thousand dollars, that will lift a wheelchair up/down stairs. I don't know if that is an option for you? It certainly is cheaper than 20K.
I really appreciate you writing. This disease feels so lonely. People say things that they mean well by, but they just have no way to possibly understand exactly what we are going thru....I hope we can keep in touch, .. take care, Andrea, wife of PALS Jim.

 

[msde302]

Stephie-
My mom has ALS and is rather advanced. I moved in with her about two years ago from California to be of help. We, too, live in a good ol' Minnesota split-level. We thought about moving, but financially it was out of the question with her stopping work, etc. We have a deck on the back of our house and we were able to construct a ramp that went along side of the house, turning to connect with the deck in the back. It's a pretty long ramp, but it makes it possible for her to get in and out (at the very least for emergency purposes!). It's not attractive, but I'm over that. We then had to widen the door to our only upper level bathroom, tear out the old fat vanity and put in a skinnier profile vanity that would allow for more movement with the wheelchair in there. Not much room!

My mom often talks about what the lower level must look like now that she hasn't been down there in two years! Seems like wasted space, now.

Well, know that there are other Minnesotan around! And take care!

 

[Barbie4]

Hello all

hello Everyone:

My kids were 8 and 9 when their Aunt was diagnosed with ALS two years ago. Since that time I have been worrying about what I should be doing for them and trying to keep the conversation open for them to talk to my husband and I about it. They have watched their very active Aunt quickly deteriorate over the past 2 years and I have been amazed at how they just have seemed to adjust to every step she has taken.

Gail can no longer talk, walk or eat. When we visit, they come and give her a big kiss, tell her their normal stuff and then take off like nothing is different and play with her kids.
The only thing I have done is to try to let them ask questions and I try to initiate a dialogue with them, so that they feel comfortable asking me anything. I also try to keep them informed on what is happening and what they can expect to happen as best I can. ( I read a book that spoke to this, but it also said to speak to your child at the level they are able to understand.) Most of the time when I ask them if they would like to talk about it, they say "no Mom" or "I know".

Gail has three kids, one just turning 8 this weekend, another almost 10 and her oldest is 12. She has done a great job using her natural motherly instincts to do the best she can for her children, but it is heartbreaking for everyone when children are involved.

I am surprised to read how many of you there are with Young children.

Barbie

 

[brooksea]

Yes Barbie! I get the "I know" thing too!

Stephie - The only other suggestion I would have right now is to make sure your children's school counselors are aware of the situation in case anything were to come up during school hours.

We have an excellent school counselor at my son's elementary school and it just so happens her sister had ALS! She has taken my son under her wing and I consider this a real blessing! You never know what may happen when you open up to others...sometimes things fall into place. (But I have to admit at other times things can go to H@## in a hand basket! LOL)

 

[stephie]

Andrea-
I have noticed just in the last couple of weeks that my 8 year is very eager to help his Dad. He has been helping him get dressed in the mornings because I will be out of town for a week at the end of April, and the kids will be in charge. We have many friends and family members that will be checking in on them, but it will be up to the kids to get everyone ready in the mornings and get everyone fed and into bed in the evening. My eight year old decided that he needed to be "ready" for the responsibility, so he has been learning how to do everything. I am nervous to leave them for a week, but I feel a little guilty that I am also excited for a short business trip. Have you had to leave your family alone since your husband has had ALS?
-Stephie

 

[andyvaughn]

Stephie,
I am so happy to hear about your 8 year old pitching in! This is a family disease, I often catch myself saying "Our" doctor, "when we got ALS"... even though I don't have it. My husband was just diagnosed in February, the 20th to be exact. So, no, I haven't been away since then. My husband has a very rapid progression, unfortunately. He started with slurred speech in December, began to have left arm fasciculations in February, now has lost most use of his left arm, is beginning to have a lot of difficulty with his left leg, and, we saw the doctor today, and unfortunately it is going into his right arm, there is now evidence of his nerves being affected, and he is starting to feel fasciculations in his right arm. So.. it is just relentless, we have had to adjust very rapidly. My son, who is 13, is really being a champ about helping the past few weeks. In fact, today he wrote himself a note so that he won't forget to bring the trash in after school... really sweet. On one hand it breaks my heart that they have to grow so fast, yet on the other hand, it IS a family disease, we are all impacted heavily by it, and this is what families do, stand by each other.
On that note,I will say that it is important to not lose our kids in this. I had a friend tell me that her father died when she was young, and her mother buried herself in his care, and neglected the kids, then was so consumed by grief after his death that she remained ineffective. I can see how easy it would be to make everything about ALS, and about the patient's care, and lose each individual in the process. I have to admit that I haven't been too good about that last part. My grief has been overpowering, and I get swallowed up in ALS nealy daily. I am trying to pay individual attention to the kids... will keep you updated on my progress!:?

 

[Tganz]

Wonderful messages here

Hello everyone,

Thank you all so much for your conversation on this thread. My husband was diagnosed in October last year. We have 5 children aged 23, 17, 15, 10 and 7. Each of them have coped in their own different way with lifes little hurdles that MND/ALS throws up on a daily basis. Bill (hubby) to date has been very positive THANK GOODNESS and this has made our jobs so much easier. His progression with the disease has been quite slow. It started in his leg and he now uses a walker permanently and his arms and hands are becoming weaker but his speech and eating are as good as ever.

Frustration is his issue, he had to leave his job of 27 years due to his illness. We had decided when our kids were young before they started school that I would be a stay at home mum, that was our choice then. Now the roles have reversed and I am working part time to help sustain the ever increasing cost of things and if I'm being truthful I absolutely love going to work. 25 hours a week at work is "my time out" from home. He has trouble adjusting to the changed roles not because he doesn't want me to work, but rather because he cant work. And of course our 3 oldest boys just can't mow the lawn or weed the gardens or trim the edges quite like their dad did it.......our lawns and things were always immaculate when he was well......it takes a bit of time to get them done after some gentle persuasion to get his sons motivated to do it......

My job is only 2 minutes from home, so if I need to I can be there quickly. My workplace has allowed me to work my hours off to suit my home life which is absolutely wonderful. I start work around 10am after I've got the kids off to school, got Bill organized for the rest of the day and done all the other 101 things that working parents have to do. As long as my 25 hours a week are done they are happy.....and so are we.

I've been coming to this forum regulary since Bill was diagnosed and have read a lot of things that have helped us with our particular journey but this is the first time I've actually responded to anything....and look at me talking my head off.

All I really wanted to say was THANK YOU to everyone

 

[cukita99]

hi, my son was 13 when i started having problems. he had to grow up realy fast. not only did he have to deal with my disease but also my divorce. i think the hardest thing for him was at 16 when i no longer could get out of my wheelchair to sit on the toilet. he would pull down my panties with his eyes closed. now it doesnt bother him. now at 18 he is having a harder time dealing with my disease. it is very hard 4me not to b able to hold him n care 4 him when he gets sick. i try to write him little notes but its not the same as talking.