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dukesnider

Member
Joined
Nov 17, 2007
Messages
14
Diagnosis
07/2007
Country
US
State
new york
City
glenville
Hey everyone, I am new to this forum. My wife has ALS and I have no support near me. Noone really understands what I am going through being a caregiver for my wife. I would love to make some contacts ( friends) to talk to too. Thanks to all who answer.
 

l2c

Active member
Joined
Sep 11, 2007
Messages
44
Reason
CALS
Diagnosis
n/a
Country
US
State
Florida
City
Fort Myers
Welcome, we are all in this together and the people here understand you better than anyone else because they have, are, or will experience much of the same things.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Hey duke,

Sorry bud that you've had to find this forum. How old is your wife, if you don't mind me asking? Are you registered with the MDA and have you contacted the ALS Association for assistance? Sometimes they can provide help.

We're here for ya, albeit cyberspace support!:-D
 

freddiesnetty

Distinguished member
Joined
Nov 2, 2007
Messages
239
Diagnosis
12/2006
Country
US
State
Tx
City
Houston
Welcome!

Hey Duke,
Welcome to the forum. I myself am pretty new here, you couldn't tell by the posts. My husband has als and I also am the sole caretaker for him. My prayers are with you, everyone here is so helpful and supportive, I have raised 7 children and numerous others, my house was the house everyone hung out at and have discovered the trick to good caretaking is taking care of yourself, my pals we always sleep in on Saturday. I think he sleeps in so I can get caught up on much needed sleep that is lost due to the work week. So hang around here, it is very helpful. I wouldn't get through the day without it..........not to mention its addicting. There are so many questions to ask, this was never going to happen to any of us just other people, well here we are so WELCOME!:-D
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Duke and welcome to the fourm though I am sorry for the reason you have to be here. Feel free to discuss anything that is on your mind- often the subject has been raised before, and if you use the search feature at the top of this screen you will see what I mean! :-D

Glad you decided to join us. Cindy
 

dukesnider

Member
Joined
Nov 17, 2007
Messages
14
Diagnosis
07/2007
Country
US
State
new york
City
glenville
Thank you for your warm welcome. I feel like I finally found a place where people "get" what I am going through. Thanks again, Duke
 

dukesnider

Member
Joined
Nov 17, 2007
Messages
14
Diagnosis
07/2007
Country
US
State
new york
City
glenville
Thank you for replying. My wife is 48 and I am 40. We have 3 kids 9,11 & 13. My wife is registered with MDA and we have been to our ALS 4 times now. Thanks for the concern. Duke
 

dukesnider

Member
Joined
Nov 17, 2007
Messages
14
Diagnosis
07/2007
Country
US
State
new york
City
glenville
Cindy, Thank you for welcoming me into the forum. I have a million questions that i must sift through. Thanks for the help. Duke
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Hi Duke,
I too am pretty new here, and also have no nearby support. My husband has ALS, we have a daughter 14, and the future scares the you know what out of me! But everyone here is so supportive and helpful. I agree with the others.........it is important to take care of yourself, especially when you have kids! I see a therapist once a week and my minister every 3 to 4 weeks. It helps alot. When things start to feel overwhelming to me, I try to focus on what I need to do TODAY, and not look at EVERYTHING I need to take care of all at once.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hello Duke,so sorry that your wife has als!She is so young to have to go through this but lucky to have you.This forum has been a godsend to me.My husband also has als.You certainly must have your hands full having three children to care for as well.I wish you the best and hope you will stick around and let this be a home for to get the support you need........Gina
 

dukesnider

Member
Joined
Nov 17, 2007
Messages
14
Diagnosis
07/2007
Country
US
State
new york
City
glenville
Linda, maybe because i'm new to the situation but it is so hard to find any free time to take a shower, never mind taking care of myself. I have 3 kids and a wife who is so so angry at the diagnosis that I am the brunt of it all. I am lucky to get 4 hours of sleep. I have no support nearby. My wife is now on a new thing. I'm not taking my effexor anymore. So now, along with all my jobs and duties and responsibilities, I need to deal with her crying hysterically at least once an hour. The kids keep looking at me because its their mom. I keep telling them she is upset with her situation and her frustration is getting to her. My kids don't know that my wife is terminal. I have not found the strength to tell them. My wife unfortunately, is part of the 30% that is declining very rapidly. In july she was able to walk unaided, now she has a walker and leg braces. She still has fallen twice. My wife doesn't want to tell the ALS center about her falls because she is afraid she will be put in a wheelchair. My wife's speech hs deteriorated to slurrs. It is so hard for me when my kids try to talk to her and i literally have to translate and of course thats leads to my wife being more frustrated and then she cries and I now have my wife crying and my kids crying and i'm in the middle. There is no way anyone can understand, outside of this forum, how this disease can affect a family. It is pure devastation and I am the only thing standing between the recking ball and my family. I am thankful though that I have found a place to vent and hope I can get some great advise on how to deal with this all. I look forward to your response and by the way, thanks for welcoming me. Duke.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi, duke! Welcome to our forum, and now it's yours, too! You will never regret that you joined this forum. You have just found a new family! I am so sorry about your wife coming down with als. I don't know if you have read any of my posts or not, but I just lost my son, 38 yrs., to als on June 3, 2007, so I know what you are going through. When was your wife diagnosed'ed with als? It is a hard journey, but God will be there for you and your wife. You came to the right place for support, questions, ideas, help, you name it, you will find it here. Don't be shy, just ask! May God bless you and your family!

Irma
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Hi Duke -

Is your wife being seen at the St. Peter's ALS Center?

Liz
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hey Duke. Sorry about your situation. Have you contacted ALSA or the MDA to see about information and support?
AL.
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Hi Duke,
I'm sorry you're here but welcome to a wonderful place to be in the midst of what you're having to cope with.
It's my mom who has ALS, but watching my dad be her primary caregiver gives me a perspective into what you're going through. My mom sounds a lot like your wife in her staunch desire to remain independent - she's fallen several times too (including today when I was helping her) and refuses to consider not trying to walk. My folks are both 75, and I see that this has really taken a toll on my dad - he's stressed to the point of confusion and hardly eats much at all - I suppose in sympathy for my mom.
With that in mind, take care of yourself and your needs. You need to stay healthy and strong.
Just yesterday, my mom agreed to Hospice, and I think that's going to be a tremendous help to my dad. It may be hard to convince your wife to have help like that but keep that in mind as well.
Take care and may God Bless You while you go through this,
Nicki
 
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