Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Just for Fun > Coping and Compassion
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 06-16-2008, 08:35 PM   #1
Elfstar
Guarded by Dragons, Gargoyles...and Figment!
 
Elfstar's Avatar
 
Join Date: Mar 2005
Location: NC
Posts: 561

DH has ALS (Lou Gehrig's disease)

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.
__________________
When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!

Last edited by Elfstar; 06-16-2008 at 08:41 PM.
Elfstar is offline   Reply With Quote
Old 06-16-2008, 09:26 PM   #2
Mskanga
Can speak and read 4 languages fluently! The TF is impressed!
In need of tube riding lessons for the water slide!
Yo quiero ir a WDW
Prefers reading tags to threads!
 
Mskanga's Avatar
 
Join Date: Feb 2000
Location: The Twilight Zone
Posts: 7,917

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
Mskanga is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 06-17-2008, 06:59 AM   #3
kimis
DIS Veteran
 
Join Date: Nov 2005
Location: Arizona
Posts: 2,826

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!
__________________
2009-POR:
2008-POR
2007- POR
2007-DL Paradise Pier
2007-DL Candy cane Inn
2007-DL Portofino Inn
2006-POR 2005-POR 2005- DL Paradise Pier 1999-Dixie Landings (1st of many trips-I hope!) 1999- DL Holiday Inn and many more DL trips
kimis is offline   Reply With Quote
Old 06-17-2008, 07:04 AM   #4
lyeag
DIS Veteran
 
lyeag's Avatar
 
Join Date: Dec 2004
Location: OK
Posts: 3,237

I am so sorry you are going through this.
__________________
Don't swing on a string, it's much too frail, the best sort of swing is a Tigger's tail!
December 2009 CR Atrium Club
Dec 2006 CR Atrium Club, Dec 2004-CR
lyeag is offline   Reply With Quote
Old 06-17-2008, 06:44 PM   #5
safetymom
Have will travel
ABD trips = clothes optional
 
Join Date: Aug 2001
Location: Now living near the parks!
Posts: 42,081

I am so sorry to hear what you both are dealing with. I will keep you both in my prayers.
safetymom is offline   Reply With Quote
Old 06-17-2008, 08:04 PM   #6
frdeb1999
DIS Veteran
 
frdeb1999's Avatar
 
Join Date: May 2007
Location: Maryland
Posts: 3,193

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.
frdeb1999 is offline   Reply With Quote
Old 06-18-2008, 05:42 AM   #7
Mackey Mouse
Me read the Navigator? I don't think so

tsk, tsk said in my best Bahsten accent

Tommy made Flubber
 
Mackey Mouse's Avatar
 
Join Date: May 2000
Location: MA
Posts: 17,397
DISboards Moderator

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...
__________________
Mackey Mouse, Are you a Tigger or an Eeyore?

Co-Moderator Restaurant Boards
Moderator, Coping and Compassion Board

"Great spirits have always encountered violent opposition from mediocre minds." -Albert Einstein
Mackey Mouse is offline   Reply With Quote
Old 06-26-2008, 09:01 PM   #8
mjwolfe
Earning My Ears
 
Join Date: Mar 2004
Posts: 37

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
mjwolfe is offline   Reply With Quote
Old 07-01-2008, 03:10 PM   #9
Sugarfoot
Earning My Ears
 
Join Date: Jul 2008
Posts: 69

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.
Sugarfoot is offline   Reply With Quote
Old 07-12-2008, 10:31 PM   #10
Elfstar
Guarded by Dragons, Gargoyles...and Figment!
 
Elfstar's Avatar
 
Join Date: Mar 2005
Location: NC
Posts: 561

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!
__________________
When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
Elfstar is offline   Reply With Quote
Old 07-13-2008, 05:36 AM   #11
antmaril
DIS Veteran
The elephant topiaries near MK have a special meaning for me
I'm a girl
 
antmaril's Avatar
 
Join Date: Apr 2001
Location: Michigan
Posts: 6,984

I'm so sorry you are going through this.
antmaril is offline   Reply With Quote
Old 07-13-2008, 01:32 PM   #12
Mrs. M. Mouse
Dreaming of Disney
 
Mrs. M. Mouse's Avatar
 
Join Date: Jul 2007
Location: Calgary, AB, Canada
Posts: 1,276

I'm sorry you are going through this.
__________________
Aug 11-17 '07 WDW Aug 19-Sept 5 '10 SoCal Aug 20-Sep 4 '11 WDWAug 16 -Sep 1 '13 USO/WDWAug 16-Sep 1'14 USO/WDW/DCL
Mrs. M. Mouse is offline   Reply With Quote
Old 07-16-2008, 12:37 AM   #13
catsrule
Mary Jo
 
catsrule's Avatar
 
Join Date: Jan 2001
Location: Cincinnati, Ohio
Posts: 29,347

I'm so sorry Elfstar, this disease stinks. My nephew is 36 and he has it.
catsrule is offline   Reply With Quote
Old 12-03-2008, 03:01 PM   #14
cyndylou
Mouseketeer
 
cyndylou's Avatar
 
Join Date: Jan 2005
Location: IN
Posts: 81

ALS is a monster

Elfstar and Catsrule, my heart goes out to you and your families. My DH first noticed cramping and weakening of his thumb 3 yrs ago. Carpal tunnel surgery did not fix it, and eventually he was diagnosed with ALS. However, since he does not yet have upper motor neuron involvement, it is not a definite diagnosis. He went through some tough treatments and tests to rule out everything else. He now has muscle atrophy, extreme weakness, and constant twitching in both arms. He does to the ALS clinic "just so the symptoms can be monitored." I know we're blessed that the disease has not progressed faster, but I still occasionally panic about the future.
__________________
Cyndylou

2005- FW; 2009 - Pop Century
cyndylou is offline   Reply With Quote
Old 12-04-2008, 08:51 PM   #15
Elfstar
Guarded by Dragons, Gargoyles...and Figment!
 
Elfstar's Avatar
 
Join Date: Mar 2005
Location: NC
Posts: 561

Cyndylou, I'll pray for you and your husband. Be grateful his symptoms are progressing slowly; hopefully they will continue that way. Whatever else you do as things progress, take care of yourself, too - constant caregiving can wear you out if you don't.

Jim went from reasonably okay to totally disabled in about six months. My heart is breaking because he's miserable, trapped in a useless body. I'm unhappy because he's miserable; but when he passes, although I'll be glad his suffering is over, I'll be miserable because he'll be gone. What a cruel, cruel disease. I'm trying to keep life as normal as possible for him as long as possible even though sometimes I almost agree with him when he asks me why I'm bothering. It's getting harder to make him smile and laugh. I'm beside myself with trying to keep up with this, with my elderly father who needs my help, too, my more than full time job, and our home and several pets. There aren't enough hours in my day, and if there were, I'm not sure I'd have the energy to keep going through them. The holidays feel like just another burden right now.

Guess I've been to busy to vent for a while - i just read what I wrote above, and that's not really me -
it's just frustration over having to cope with something totally beyond our control.
__________________
When life gets tough, we go to WDW!!
1991 - CBR ; 1995, '99, 2004 - Off site
2005 - July 3 - 6 off site, 7 - 10 POFQ
2006 - 3 trips this year - all Disney'd out for now.
2007 - another wonderful week at WDW (off site)
2008 - the saddest year of my life - DH has ALS; AKL for his final trip.
2009 - DH passed on 1/3 - "memory trip" 3/5 - 3/9 with his daughter.
Memory trip 6/28 - 7/4 POFQ - first solo trip, a little rough
F & W Festival trip - 9/24 - 9/29 with sister-in-law - AKL
2010 - 6/19-25, DTD hotel - carried DH in my heart, had a lovely trip!
Elfstar is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 10:59 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.