DH has ALS (Lou Gehrig's disease)

[Elfstar]

Last year at this time, we were at WDW - DH had had surgery for a fracture of the cervical spine - he was tired and rented a scooter all week (he wouldn't miss a Disney vacation for the world). He got worse and worse instead of better, and in February we got the news about the real cause of his problems. We got a hospital bed in the house today, and his speech has gotten so slurred even I'm having trouble understanding him but the speech device has been ordered so that will be resolved soon. He's gone from a cane to a walker to a wheelchair in just a few months. No vacation this summer, the heat causes him to have anxiety attacks and every movement has become terribly difficult. Luckily his parents are across the street so there are three of us to take care of him.

My heart is breaking - his symptoms are progressing so rapidly that we're afraid he'll be gone before long. I don't know what I'm going to do without him. I'm so grateful that we took all the trips that we did while we could, he enjoyed them so much. Now, we have our memories to keep us going, and our souveniers. He loves to go over the good times we've had; it seems odd not to be planning more. But he can still laugh and joke, and as long as he does that, it makes me happy.

 

[Mskanga]

Elfstar I am very sorry that you have to deal with this but I will tell you after spending an entire year with my 14 year old fighting cancer , enjoy everyday to the fullest and cherish every moment , make more memories now. HUGS

 

[kimis]

My prayers and thoughts are with all of you! What symptoms did he have before the surgery? How old his he? The reason I am asking is that I have been going through some strange symptoms also and am scheduled for cervical spine surgery to see if that is the problem. The doctors have all told me that they can't rule out any of the other diseases until the cervical spine gets fixed to see if that stops the problem or not.
Remember you can always post here and we will pray for you. That is what friends are for. We care!

 

[lyeag]

I am so sorry you are going through this.

 

[safetymom]

I am so sorry to hear what you both are dealing with. I will keep you both in my prayers.

 

[frdeb1999]

So sorry you are dealing with this. But MsKanga is right, make as many memories now as you are able. You will always have those to hang on to. You'll be in my thoughts and prayers.

 

[Mackey Mouse]

Oh gosh.. I am so sorry.. Another horrible fast moving beast... please know that we are here for you if you need to talk. And as the rest of the posters said, live in the moment, remember the good times and try to make each day count in your memories...

Hugs, hugs, hugs...

 

[jacksonsmom]

I am so sorry

My dad is currently battling ALS. It has been a very rocky road for all involved.
ALS is just a cruel disease.
One thing that has helped me is living one DAY at a time. Enjoy today and try not to think what tomorrow will bring.

My thoughts and prayers are with you

 

[minkydog]

All I have is hugs for you both. This situation is *so* beyond unfair!

 

[Elfstar]

Thank you all - your ears and shoulders are a big help - and to all of you fighting any kind of problem, I have ears and shoulders, too, at the ready.

We will continue to create memories as long as I can keep him going, and I'm a stubborn one!

Jacksonsmom, my prayers are there for you and your father, too. This is a cruel disease - that's a great description. I read in the news today that an upcoming clinical trial has been postponed for more animal testing, it may be a year or so before it's approved for human testing. For every step forward, there are two back at the most trying times!

Mackey Mouse and mskanga, you two are going through some severe trials, too, we'll pray for you and yours, too.

Kimis, Jim is 57. He was knocked to the ground two years ago by a poorly adjusted commercial overhead garage door. Just like a typical man, he shook it off and didn't go to the ER to be checked out (and what's worse, his supervisor was there, too, and didn't' insist he did). He had some minimal speech slurring which began only in the evenings when he was tired (it's now all the time). What caused him to seek help (a year later) was loss of muscle mass and the ability to pinch objects with his hands. He had two fractures in the C spine and had a fusion for repair. After the surgery, he got a little better for about two months but then the slurring increased and he developed multiple constant muscle twitching, limb weakness, loss of function of his hands and nearly unintelligible speech. I can only hope and pray that there's another explanation for your problems.

But... he can and will still laugh so far, and he appreciates everything we all do for him. He complains about being a burden for his family and I but I tell him he's much too important to us to be a burden. A bossy know it all sometimes he can be, but not a burden. (He laughs at that.)

It helps to know we are not alone! Thanks, all!

 

[kimis]

Elfstar thank you for answereing my questions. I am 51 and I too am praying the surgery fixes the problems. I am going into the surgery with the thinking that all the sypmtoms will end.
You and your family are on my daily prayer list. Take a few minutes each day for you. You and your body need it.

 

[breezy1077]

It's a horrible disease. My thoughts and prayers are with you and your family . I'm so very sorry.

 

[mjwolfe]

Elfstar,

My heart goes out to you. I have walked a mile in your shoes. My DH lost his battle with ALS almost 3 years ago, at the age of 45. I know there is little anyone can say with this type of news. I can only encourage you to try to live each moment, each hour, each day as it comes.

There are support groups for you or your DH if think that is something that would benefit you. It is a difficult road you are on, and there are others who might be able to help you with your emotions, how to plan for what might be ahead, etc. My DH did not want to do any type of support group, but in hindsight I think I would have benefited. The kids and I joined a support group after his death. The group we go to also has groups for people with a serious illness in the family.

Your local MDA office should also be some help for you. If you have questions, please ask me. There are difficult things that need to be decided when someone has a terminal illness. It is really hard to consider some of those things, but if you can talk about it with DH, you should discuss things like a living will.

once again, my heart goes out to you...
-Marti

 

[Sugarfoot]

My heart aches for you, as we lost my DH's mother to ALS about 8 years ago. It started very slowly, slight slurring of her speech, as if she were drunk. It took a long time to get a diagnosis. Eventually she lost the use of her hands/arms, could no longer speak coherantly, and near the end she was on a feeding tube as she could no longer eat normally. She never lost the use of her legs, she tried really hard (by riding an exercising bike 10 miles daily) to keep the muscles of her legs from atrophying (not sure I spelled that right). I think she lived about 5 years with the disease, after she had been given 3 years by the doctors so we had her 2 years longer than we expected to.

Her spirit, and her faith in God, and her family were what got her through. She always had a smile, never complained. She was a great lady and I miss her to this day. I loved her very much.

ALS is a difficult thing to deal with, but I hope you have the support of family and friends. They can be so helpful to you, and your DH.

 

[Elfstar]

mjwolfe and sugarfoot, thank you, it's nice to know someone understands how this feels. We are going to support groups, and are tied in with the ALS and MDA offices. Everyone we meet that's to help Jim has been just wonderful.

His symptoms are progressing so rapidly it's frightening. He went from feeding himself and chewing his food to needing everything pureed and being fed completely by us in just a few weeks. We go to clinic on 7/15 again, and he's going to ask for a feeding tube insertion. He's lost probably 40 pounds over the past couple of months.

I had my July vacation last week, and while most of the time I spent working around the house , he did encourage me to take one day and go off and have some fun. I met my daughter for lunch and them tried to go shopping but all I could think of was that Jim and I should be off somewhere (WDW usually) having fun and cutting up !! It made me so sad I just went home. The good thing about it is I can tell him these things without it making him feel bad - he understands that we're both mourning our loss of "normalcy". And the next day, I tried taking him to a movie (he's very restless usually so we weren't sure if he'd be able to sit quietly for two hours) and it was the perfect respite for us both. We're going to try again next week. And, our theatre lets disabled people for free. What a kind gesture!!

So, we're coping as best we can but I dread my next Disney trip because it'll be by myself, and probably Jim will be gone. How bittersweet that will be, loving and avoiding the memories at the same time. There are just times when I hate being an adult!

 

[antmaril]

I'm so sorry you are going through this.

 

[kimis]

Yes Elfstar your first trip may be very hard but just know that there are so many happy memories there with the two of you. That is what memories are all about---the times life is hard and seemingly unfair---to get us through.
I know when I go to places that were special to loved ones that I have lost I actually cry, laugh and "talk" with the loved one all at the same time.
I wish I could talk away your pain for you but than you wouldn't have those wonderful memories together.
Just know that myself and others are praying for you. You hang in there! Laugh when you want, cry when you want and yell when you want. Most importantly talk when you want. Talking helps.
All my prayers and lots of pixie dust.

 

[Mrs. M. Mouse]

I'm sorry you are going through this.

 

[catsrule]

I'm so sorry Elfstar, this disease stinks. My nephew is 36 and he has it.

 

[Elfstar]

Catsrule, our prayers go out to your nephew, you and your families. He's so young for this - it's bad enough that Jim's only 57. Keep his spirits up, there's a drug that was supposed to be approved for human trial this summer (Jim's doctor had hoped to have him participate) but the FDA wants more animal testing first so it's on hold for a year. Too late for Jim (I'll explain why in a second) but maybe in time to help your nephew. I'll pray for that result.

We went to the ALS clinic for Jim's 3 month checkup yesterday. The doctor seemed surprised at how much he's deteriorated since the last visit. Jim asked if he knew how long he had, and he told us that he thinks he may be in his final six months. Startled to say the least, we feel like we've been hit in the face with a board. Tears ran down my face during the entire three hour ride home. I know it's not truly predictable but thinking that I could lose him that soon is devastating. I'll never be ready for that.

Thank you all for your thoughts, hopes and prayers. This is a help, being able to let it out without really "seeing" people.