DH has ALS (Lou Gehrig's disease)

[D&DDisney]

to you! You are dealing with this soooo well. You are incredible!!
My father went through this very same scenario last year. (died on 8/20/07) Except, his ALS progressed so fast we bearly knew what was going on. He wasn't diagnosed until 1 month before he died. We thought he had a stroke but he never recovered and the symptoms just kept coming so fast. First his voice was slurred, then he had trouble walking, then holding his head up. Lastly he had breathing difficulty and then he was gone.
Really wish we would have known more and cherrished those last few weeks.

Just keep making your DH laugh because, you're right, that laughter is like a magic wand.

 

[kimis]

Hi Elfstar just checking in. You are on my daily prayer sheet. I hope you are hanging on and getting a couple of minutes for yourself. I know when I have trails my favorite place is my shower. I can talk or cry and no one hears me. Just me and God. Prayers
I am sure everyone is telling you that shingles is from stress so I won't go there. I have had shingles and you get more prayers, I just wanted you to know your friends here haven't forgot about you.

 

[Elfstar]

D&DDisney, I'm so sorry about your dad. This disease is so hard to understand - some people live with it for years; others, like your dad, and maybe like DH, go so quickly it's hard to believe. And thanks for your kind words - I fall apart when I'm alone, like Kimi says, in the shower for example.
But outside, I will keep them laughing! I've got God and my friends here and at work to keep me going!

Kimi, the shingles have shown me the true meaning of the word annoying!! With the medicine I was given, that's all they are now but aargh! If they don't hurt, they itch; when they stop itching, they hurt. And don't sweat, then they do both! And Heaven forbid someone tries to hug you!!!

DH loves his power chair; we went for a walk when I got home from work, and reveled in doing such a simple thing that we used to take for granted. His regular wheelchair was not comfortable. The power chair is made to live in 24/7. Then he supervised while I put down pavers from the driveway to the ramp. The feeding tube is great - the procedure went well, he's tolerating it well, the incision pain is already gone. The stress this took off of us all - his mother and I to prepare food that would tempt him to eat, then run it all through the food processor and take 1-1/2 hours to feed him at each meal; the pressure on him was to eat enough to keep him going, and that's very tiring when your chewing and swallowing muscles don't work well. Now we just pour his "formula" in the tube and it's done with in a few minutes. And, we can make sure he gets enough water now, too. And he can still eat, or just taste, food for pleasure if he wishes. What a relief!

Thanks for checking up on us!

 

[diz8297]

I just want you to know that you and your husband are in my thoughts and prayers. Noone can understand how you feel, but know that others -people you don't even know care.

 

[zalansky]

I just found this thread tonight and Elfstar, you are such an inspiration. What an amazing attitude you and your DH have. I don't know that I could handle a similar situation with such grace. I will keep both of you in my thoughts and prayers, and want to thank you for reminding me that I need to stop and smell the roses every day.

God bless you!

 

[Elfstar]

Diz8297 and Zalansky, thank you. It's tough sometimes to keep our spirits up but we get over the rough spots.

Jim got an unexpected check from a disability policy he'd forgotten about - it was enough added to what we'd saved to get a used van with a lift so we can transport him in his chair. Now he can go with me to visit my dad( also having health issues but he only needs my help with transportation at this point). While Dad will drive to my house as long as it's light out, it's important for Jim to be able to get out, too.

And since the transportation issues are solved , Jim wants to go to Disney World one more time for a few days. We may not be able to do what we used to but just being there will be enjoyable. And he wants to get married before he dies, so it'll be a "honeymoon" as well as probably his final trip. We decided to splurge and see if we can get a room at AKL for three or four nights. We'll be able to see the animals, and see the art in the lodge even if we can't get out and do anything else. I don't care, as long as he's happy, I'm happy.

Kimis, if you're out there somewhere, please pm me or e-mail me and let me know how you're doing - have you had your surgery? Thanks.

 

[diz8297]

I am so hoping that you can have a beautiful trip to Disney. The AKL is a wonderful choice. You are both so inspiring-I know you may not feel that but you guys are. In your posts you show how you focus on the living. Living each and every day to the max. Making sure that you utilize everything you can to squeeze as much out of each moment. God bless you both. Keep us posted on your developments.....and your trip planning.

 

[buf68]

Elfstar,
I'm so sorry you have to go through this. My father passed away due to ALS last year (may '07) from ALS. He had the bulbar form, and from diagnosis to death it was almost 3 years exactly. Unfortunately he was only 44 years old (one week shy of his 45th birthday). Thankfully before he lost the ability to walk we got in contact with the Fariy Godmother Foundation, who put together a wonderful trip for us to disneyworld. It was our first big family vacation (my sister was very young, so she hadn't been to disney every). It was an amazing trip for us.

I will pray for you. My dad firmly believed that as long as he had breath in his body that he could be healed. I never would wish this disease on anyone, ever. It's horrible to deal with....and even worse for a 23 year old to be in the room when her almost 45 year old father dies. It was incredibly hard for all of us. I wish you strength and I hope that if that ending does come it is as peaceful as anyone could imagine.

 

[Elfstar]

buf68, I am so, so sorry about your father. That's much too young to die, and you were much too young to have to see that . But I'm glad you were with him - I bet that meant a lot to him. Watching Jim worsen every day is the hardest thing I've ever done - it's such a helpless feeling...thank you for your prayers and support. That means a lot to us.

 

[Mackey Mouse]

Buf, sorry to read about your Dad, he was so young....it is not fair when we lose them that young, whether it be this, cancer, heart....just not fair.

Elfstar, great that you got the van and he can get out a bit.. I always think how hard it would be to face one of these diseases and be housebound as well, it is hard to keep up your energy if you do not get out and about....

I think it is great that you will go to Disney and get married too... awesome.. live for the moment and just go, keep one step ahead of this disease and enjoy life the best you can..

 

[kimis]

Hi Elfstar just checking on you. How are you doing? Still gotta you all in my prayers! I hope you have a great day.
Hey have you set a wedding date yet?

 

[MinnyGranny62]

I think that a trip to WDW would be great and a honeymoon too.
God Bless you. Shirley

 

[Elfstar]

Hi, friends,

Well, we've got the license and will probably get married next week. The trip may have to wait or not happen - Jim's breathing seems noticeably shallower to me, and he refuses to use the Bipap machine. His checkup is next Tuesday, so we'll see what the doctor says then. His hands are curling up, too, and are almost impossible to open anymore.

Jim's dad is having some trouble coping emotionally these days and has chosen me as the object of his anger and frustration. He's rude and insulting and has even shoved me out of the way a couple of times recently. Jim's mom has no idea what's going on with him, and Jim is understandably upset about all this. I'm not proud of it, but he just wouldn't let up the other day, Jim was agitated to the point where he was in tears, and I lost it and actually took a swing at him (Jim's dad) because he just would not shut up - it seems like he's trying to run me off. Not sure if this is why, but now he's not talking to any of us. At least it's peaceful. None of us need ******* right now.

 

[TheDisneyGirl02]

Hi, friends,

Well, we've got the license and will probably get married next week. The trip may have to wait or not happen - Jim's breathing seems noticeably shallower to me, and he refuses to use the Bipap machine. His checkup is next Tuesday, so we'll see what the doctor says then. His hands are curling up, too, and are almost impossible to open anymore.

Jim's dad is having some trouble coping emotionally these days and has chosen me as the object of his anger and frustration. He's rude and insulting and has even shoved me out of the way a couple of times recently. Jim's mom has no idea what's going on with him, and Jim is understandably upset about all this. I'm not proud of it, but he just wouldn't let up the other day, Jim was agitated to the point where he was in tears, and I lost it and actually took a swing at him (Jim's dad) because he just would not shut up - it seems like he's trying to run me off. Not sure if this is why, but now he's not talking to any of us. At least it's peaceful. None of us need ******* right now.

 

[EMom]

I just noticed this thread. I am so sorry for what you're going through. Our cousin was diagnosed 2.5 years ago after about a year of testing to rule out other things. She actually did pretty well compared to most people for the first 1.5 years, but the last 6-9 months she has taken a severe decline and is now on a ventilator. She tried everything...all sorts of experimental treatments, etc. and was so hopeful and positive. She's a fighter. But this is such a cruel, horrible disease. Her DH has been devoted to her.

One thing we are struggling with is how to tell DD8. It's one thing to explain that an old person died, but how do we explain that a youngish cousin died? She knows this cousin "has had trouble breathing," and I'm scared she'll equate it with my asthma and then become scared that I will die! She hasn't seen this cousin since she went downhill. I opted not to take her around because if DD accidentally took an infection over to their house, it could kill our cousin. And she could be carrying some bug from school and not even know it. To DD, this cousin is a relatively young, cheerful, energetic person. Well.......That is what she was before ALS robbed her of all that.

I wish they could find a cure. This is surely one of the most awful diseases on earth. My heart goes out to you.

 

[mjwolfe]

Elfstar

Do they measure your DH's FVC (forced vital capacity) when he goes for checkups?

My DH refused bi-pap as well. I noticed that when he would breathe his muscles in his upper chest would move up and down, to compensate for his lungs. The Respiratory therapist taught him how to do stacked breathing (taking a series of breaths one after the other) to try to get one big breath into your lungs. He had wanted my DH to practice the stacked breathing daily - especially to get a big enough breath to do a cough.

As for FIL .. all i can imagine is that he is truly hurting, but it comes down to the fact that he is not helping the situation at all.. I would say that it probably needs to be addressed. you are under too much to have to deal with that too.


EMom - my DH died from ALS 3 years ago when my children were 4 and 8 years old. I told my 4 year old that daddy had an illness and that even though there are very smart doctors in this world, they had not figured out how to cure what daddy had. What he had was rare - not many people get this illness. It made Daddy's lungs very weak and Daddy caught pneumonia. His lungs quit working and that is why he died.

There were some kids in my daughter's pre-school class whose parents chose not to tell their kids that their class-mate's father had died. I am not sure about that decision...i think it is better to try to find words to explain something like this. (not saying that you would not tell DD, just telling what happened in my situation).

-marti

 

[EMom]

EMom - my DH died from ALS 3 years ago when my children were 4 and 8 years old. I told my 4 year old that daddy had an illness and that even though there are very smart doctors in this world, they had not figured out how to cure what daddy had. What he had was rare - not many people get this illness. It made Daddy's lungs very weak and Daddy caught pneumonia. His lungs quit working and that is why he died.

There were some kids in my daughter's pre-school class whose parents chose not to tell their kids that their class-mate's father had died. I am not sure about that decision...i think it is better to try to find words to explain something like this. (not saying that you would not tell DD, just telling what happened in my situation).

-marti

That's an excellent explanation. We are very truthful about these things. When my mother died of lung cancer, DD had just turned 2. Over the years, we explained what killed her. She remembered my mother being on oxygen because the visual was strong. (She had emphysema too.) However you slice it, it gets back to a breathing/lung problem. Now this cousin has a breathing problem....in simplified terms. My brother just died and he had lung disease......again it gets back to breathing/lungs. None of these are the same issue, but to a child, it may SEEM the same.

I worry that she may start to associate my asthma as being something that could kill me. I have days where breathing can be difficult and she knows that. I may know it won't kill me and I can tell her that all I want, but with three total deaths from breathing/lung issues and two of them so coming close together, it's not a reach for her to make the leap in logic. She has always been anxious about me when I get sick anyway. Daddy, not so much.

On top of all that, another brother recently had a massive heart scare which alerted us to the fact that a genetic defect runs in our family that can cause sudden death.....as in you drop dead with no warning. He actually DID drop dead, but someone did CPR until the ambulance arrived in just a few minutes. It was touch and go, but he now has an implanted defibrillator to shock his heart into normal rhythm if this happens again. It's a miracle he survived. But it does explain why my father dropped dead at a relatively young age right in the middle of a sentence. Back then, it couldn't be diagnosed. Anyway, the siblings all had a 50/50 shot of having it, so I had testing and am in the clear. Other sibs weren't as lucky, but they are now being treated. However, DD knew about my brother nearly dying and she caught on that something was up when I had all those cardiac tests and had to wear monitors at home, etc. She knows I am "safe" but again....what 8 y.o. needed to be exposed to that? We downplayed it, but she's no dunce.

Poor kid. Oh well. The good news is, my ticker's in nice shape.

 

[safetymom]

My late husband had very very bad asthma. We were always honest with the kids when he ended up in the hospital.

When he was supposed to have this procedure that ended up killing him we were honest about that as well.

Honesty in a way that children can understand is a good thing.

 

[Elfstar]

Hi, everybody, we're praying for you all every day.

Jim's checkup last week went about as I expected - his diaphragm function has gone from 34% to 24% in two months. They gave him two additional meds for his secretions because he swallows very little now. The doctor assured him (as much as he can, I guess) that he'll most likely slip away in his sleep eventually because Jim kept asking.

We're getting married in two weeks and if I can get us a room, going to AKL for a few days soon after that, as another trip to Disney is his final wish, and I want to do it while he can still possibly enjoy at least some of it.

I hate this disease more than I can say. Anyone who's been a caregiver will understand when I say that watching Jim's decline up to this point, and knowing that I'll be watching even more is the hardest thing I have ever done. I'm just praying I can keep on going till he doesn't need me any more - I know I will because I want to but these days I'm as tired mentally he is physically.

 

[Mackey Mouse]

"Anyone who's been a caregiver will understand when I say that watching Jim's decline up to this point, and knowing that I'll be watching even more is the hardest thing I have ever done."

I understand.. hang in there, we are here to listen. it is not easy being the caregiver, not easy at all. Hugs..