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 06-21-2007, 07:58 PM   #1
Artoo
Mom to a beautiful African Grey
 
Artoo's Avatar
 
Join Date: Jun 2007
Location: Southern Illinois
Posts: 503

Dad has ALS

Hi everyone...I'm pretty new to the board here, but I'm a HUGE Disney nut (My husband-to-be and I will be going to WDW on our honeymoon on October 1st).
I was wondering if any of you out there have gone through or are going through ALS, or if you have any loved ones who have it. I just found out a week ago that my dad (he's not even 61 yet) has it. I'm really scared and upset, and I'm just trying to find other people out there to talk to about it! I registered on the board and browsed around, pleasantly suprised to find this "Coping and Compassion" forum. So, I thought I would try and see if there was anyone out there who I could talk to about this.
__________________
WDW: 1985, 1987, 1990, 1994 (offsite), 2007, 2010 (POFQ)...Disneyland: Too many times to count...Tokyo Disneyland/Disney Sea: 2002



Artoo is offline   Reply With Quote
Old 06-21-2007, 11:59 PM   #2
barb/nl
Earning My Ears
 
Join Date: Jun 2007
Posts: 3

ALS Information

Hi,

I have experienced ALS through my husband and am willing to listen to your concerns and tell you anything I know that might be helpful to you and your dad. A very good place to get a lot of excellent input combined with support and compassion is in the Yahoo Group "Living with ALS"--check it out and let me know what you think!!

-Barb
barb/nl is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 06-22-2007, 10:42 AM   #3
Artoo
Mom to a beautiful African Grey
 
Artoo's Avatar
 
Join Date: Jun 2007
Location: Southern Illinois
Posts: 503

Thanks so much. It's good to know that there are people out there who will understand (organizations, too!). My family has always been healthy and this has been just such a shock to all of us.
__________________
WDW: 1985, 1987, 1990, 1994 (offsite), 2007, 2010 (POFQ)...Disneyland: Too many times to count...Tokyo Disneyland/Disney Sea: 2002



Artoo is offline   Reply With Quote
Old 06-22-2007, 12:00 PM   #4
barb/nl
Earning My Ears
 
Join Date: Jun 2007
Posts: 3

Do you have any questions?

Hi,

If you have any questions, feel free to ask them? By the way, are you sure of the diagnosis? Did he get it at an ALS Center? What are his symptoms? Did you get a chance to take a look at "Living with ALS"?

-Barb
barb/nl is offline   Reply With Quote
Old 06-22-2007, 12:12 PM   #5
Artoo
Mom to a beautiful African Grey
 
Artoo's Avatar
 
Join Date: Jun 2007
Location: Southern Illinois
Posts: 503

My dad saw a doctor who specializes in ALS at a nearby hospital. They did a whole bunch of tests on him (blood tests, a "muscle biopsy", spinal tap)...they have ruled out everything else and have pretty much told us it's ALS. He had been walking with a limp for about a year. We thought it was due to a very minor stroke he had, a little over a year ago. It turns out it's more than likely due to this ALS. Plus, now my dad is walking worse than before
__________________
WDW: 1985, 1987, 1990, 1994 (offsite), 2007, 2010 (POFQ)...Disneyland: Too many times to count...Tokyo Disneyland/Disney Sea: 2002



Artoo is offline   Reply With Quote
Old 06-22-2007, 12:47 PM   #6
barb/nl
Earning My Ears
 
Join Date: Jun 2007
Posts: 3

It sounds like your dad has been getting the right screening. Did he have an EMG, too? Since ALS is actually diagnosed by trying to eliminate everything else, there is always the possibility of error. More than that, there are so many different types and rates of progression within ALS that what you read about ALS can turn out not to apply. The people who seem to do the best are those who actively reach out to the ALS community and find out/contribute as much as they can. They are generally very spiritual and positive-thinking. Some people progress very, very slowly and live for a long time. The positive thinking and joy in the moment helps whether the progression is slow or fast and there is a great deal of very helpful technology available for every stage. So don't be scared--take each day as it comes, enjoy it to the maximum and encourage your dad to do the same! And who knows--there is a lot of ALS research being done and a cure may come at any time!!

-Barb
barb/nl is offline   Reply With Quote
Old 06-22-2007, 01:19 PM   #7
Artoo
Mom to a beautiful African Grey
 
Artoo's Avatar
 
Join Date: Jun 2007
Location: Southern Illinois
Posts: 503

Thanks for all the help.
I believe my dad had the test you mentioned done just recently...I guess it was the last one done, just so they were sure that is what it could be. I've been doing some research about it on the web and when I was at my parents' house for Father's Day, my dad had a whole mess of books about ALS sitting on his table.
I know that every case of ALS is different in terms of how fast it progresses and how bad it could be. When I first started reading about it, I freaked out because it said that the person was expected to live for another 3-5 year (of course, this is Wikipedia). Then, my fiancee reminded me about Stephen Hawking and how he was diagnosed YEARS ago and is still alive and writing books and giving lectures. That made me feel better.
__________________
WDW: 1985, 1987, 1990, 1994 (offsite), 2007, 2010 (POFQ)...Disneyland: Too many times to count...Tokyo Disneyland/Disney Sea: 2002



Artoo is offline   Reply With Quote
Old 06-27-2007, 04:48 PM   #8
catsrule
Mary Jo
 
catsrule's Avatar
 
Join Date: Jan 2001
Location: Cincinnati, Ohio
Posts: 29,347

Hi! My nephew has ALS, he is only 35. He is right now getting a tube put in his throad to help him breath and eat. He has had it since Feb 06. He has 3 little ones and won't see them grow up. It is a stinky disease and can strike anyone. There is no history of this on either side of his family. Why do some get it? Who knows?
catsrule is offline   Reply With Quote
Old 06-27-2007, 04:50 PM   #9
catsrule
Mary Jo
 
catsrule's Avatar
 
Join Date: Jan 2001
Location: Cincinnati, Ohio
Posts: 29,347

Also, the person with ALS must decide if they want to live like Stephen Hawking. I'm sorry to say this, but most don't.

I am very sorry about your Dad. Prayers too.
catsrule is offline   Reply With Quote
Old 06-27-2007, 09:05 PM   #10
onesadduck
Not so sad right now
 
onesadduck's Avatar
 
Join Date: Mar 2007
Location: California
Posts: 106

I'm so sorry about your dad. I wish I had some positive news for you, unfortunately, my only experience with ALS was the father of my friend, who died only six months after diagnosis. I truly hope things go much better for your father. Sending good thoughts your way.

-Alisa
__________________
RIP, my dear li'l sis' (1990-2007) My angel. The only real princess I've ever known.
onesadduck is offline   Reply With Quote
Old 06-28-2007, 04:55 AM   #11
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

Hugs to you and prayers for your Dad... Sounds like you got some help here from our very generous giving posters and hopefully you can continue to get your questions answered by these posters...
__________________
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 06-28-2007, 01:33 PM   #12
catsrule
Mary Jo
 
catsrule's Avatar
 
Join Date: Jan 2001
Location: Cincinnati, Ohio
Posts: 29,347

My nephew now lives in a handcapped apartment. Your Dad will eventually need to make his house handicapped accessible. Also there are many support groups you can join. My nephew is also on prozac now. There are also daycare places and physical therapy that he will need.
catsrule is offline   Reply With Quote
Old 07-10-2007, 11:44 AM   #13
pha1226
Mouseketeer
 
pha1226's Avatar
 
Join Date: Jan 2007
Location: Southern NJ
Posts: 406

No real advice here just hugs and prayers. My dad died 2 years after his ALS diagnosis. It started with a foot drop and trouble walking along with weakness in his hands and when he died, he was bedridden on a ventilator with a feeding tube. He was 55 when he died (and I was 7 months pregnant with my first daughter). I hope you find support here and through the suggestions other have made. I wish I had something positive to say to help you. It is a horrible disease and sadly, there is no getting better.
__________________
Patti
1976 Off site; 1980 Off site; 1987 Cruise/Off site; 1994 Off site; 5/04 POR; 3/07 POP; 8/08 POP; 8/10 POP;8/12 CBR ; 8/14 CBR and Universal! dd14 dd12

pha1226 is offline   Reply With Quote
Old 07-19-2007, 12:28 PM   #14
huckster
DIS Veteran
 
huckster's Avatar
 
Join Date: Nov 1999
Location: northern michigan
Posts: 3,521

hello,
sorry to hear about your father. My mom had ALS nasty thing it is.. she found out when she was 57 died at 59..God rest her soul. many go for a long time, my mom slipped fast she lost her abilty to walk and talk first, she could write for a while , then she had a glass stand with letters that we would watch her eyes spell things out.she had a feeding tube within the first year , any questions i would be glad to try and help it was 24 years ago, my heart goes out to you and family.
__________________
Disney is my home away from home

hold on tight to your dreams!
huckster is offline   Reply With Quote
Old 07-20-2007, 12:28 AM   #15
catsrule
Mary Jo
 
catsrule's Avatar
 
Join Date: Jan 2001
Location: Cincinnati, Ohio
Posts: 29,347

I'm sorry to hear that your Mom had this too, huskster. It is very hard watching my young and once vibrant nephew losing his ability to walk and talk.

There is also walk to d'feet ALS. It is a walk for ALS every year. They have one in our area, they may have one in your area also.
catsrule 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 10:53 PM.

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

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

You Rated this Thread: