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Debbie54

Member
Joined
Aug 2, 2008
Messages
11
Reason
Loved one DX
Country
US
State
North Carolina
City
Roxboro
Hi,
I am new here. My husband was told almost three months ago that he has ALS. He is losing his voice now and has trouble eating now. He frist started having trouble with his voice back in Sept. of last year. He has been to all kinds of doctors,an finally was sent to a nerve doctor. He goes to the ALS clinic for the first this month on the 25th. I can't believe how long you have to wait to get started in this clinic. We live in NC,the clinic is in Durham,NC,about an hour from our home. They have Great Doctors at Duke in Durham. I know they are going to put a feeding tube in, but I don't think he is going to like this very well. But he is in good sprits. All I do is cry when he is not around. This is the hardest thing I have every faced. I keep saying its not right. He is only 55, an we have only been married for 11 years. He keeps telling me he is going to live for 55 more years.:) I just need to hear how some of you deal with this. I am praying for everyone who has to go through this aweful time of their life. I know the Lord is doing this for a reason, but it is still hard to understand. So God Bless you all. And thanks for reading this.
Debbie
PS. My husbands name is Matt.:)
 

CindyM

Moderator emeritus
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Sep 17, 2006
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3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Debbie- I am sorry to hear about Matt. Most people say the news hits like a ton of bricks at first. You're in good company around here, though. We have lots of caring and kind PALS (People living with ALS) and CALS (Caretakers of a PAL) so I am sure you will find solace. Meanwhile, if you have any questions just fire away, or better yet try a search of just about any topic from the tab at the top of this screen. There is lots of information here! :-D Cindy
 

Debbie54

Member
Joined
Aug 2, 2008
Messages
11
Reason
Loved one DX
Country
US
State
North Carolina
City
Roxboro
Hi Cindy

Hi Cindy,
I am so glad to meet you an thanks for the welcome.I am checking the site out now. I wish I knew more about how long a person has to live with this aweful stuff they have to go through. Do they suffer very much with ALS? I have not heard if they suffer a lot with pain. I know that is a dumb question to ask. But I just hope God will not let Matt suffer a lot. I love him so very much. Debbie:cry:
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Deb- I think it depends upon how you define suffering. Of course, it is not easy to lose abilities, but a lot of PALS around here seem to be enjoying their friends and their families.

One of the first books I read on the subject was "Letting Go" by Morrie Schwartz. ISBN-10: 330371096 or ISBN-13: 978-0330371094 . He is the "Morrie" of "Tuesdays with Morrie," and he decided to focus on the life he was able to live with ALS, as opposed to the life he once had without it. Hope this helps.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Hi Debbie,

I'm sorry for what you and Matt are going through. It sounds like Matt is very lucky to have you and that you love each other very much. Please take care of yourself also it is very important.
You are going to find each person has a different rate of progression. There are stories on the forum
that you can read about people living long and fullfilling lives.
i will keep you and Matt in my prayers.
 

awakinggiant

Member
Joined
Aug 7, 2008
Messages
15
Reason
Other
Country
US
State
LA
City
New Iberia
Lord bless her

I often wonder about my past and the extent of my rebellious ways that have left me facing a plethera of symptoms these past 3 years and live daily with such regret. I also am new to this forum and I see loving people like you and see how this thing doesnt seem to descriminate. That doesnt seem to absolve me in my conscious but it makes me sympathize to you and yours and pray the word's "His grace is sufficient" is evident in your lives.

kris
 

wendy

Member
Joined
Nov 13, 2007
Messages
26
Reason
CALS
Country
CA
State
Ontario
City
Pembroke
Hi Debbie,

I can really relate to your story. My dad is only 55 and his also started with his talking. My mom passed away two years ago so I now live with him too help. It is a very hard thing to hear at first. I think I cried everyday, but now I know that I have to stay strong for him. I think that God will gives me the courage I need to face each day one day at a time. I will keep you & Matt in my prayers.

Wendy
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
I often wonder about my past and the extent of my rebellious ways that have left me facing a plethera of symptoms these past 3 years and live daily with such regret. kris

Kris, I hope you will be able to put all regrets behind you, and realize that none of us "caused" this disease to happen. If you have medical issues ... I'm not sure, are you a PALS? ... you are not being punished ... none of us is. It is really, really hard to learn to cope with a medical condition of this magnitude, but living in the past and holding on to regrets, and blaming yourself for things that can't be changed, only makes it that much harder.

Please be kind to yourself. Forgive yourself for being human and put your energies into getting the most out of today.

Hang tough,
BethU
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
hey there Debbie,

If you look thru some of my posts, you'll find some of the same thing going on with me that is going on with Matt. My ALS diagnosis came on 6/3/08- mainly with the speech thing going on. I tell people I just sound like I've had a lot of margaritas!

Yes, it was like a huge slap in the face the first few weeks. But then I had to put on my big girl panties and deal with it! My hubby retired on 7/31/08 at the tender age of 49, I turned 48 in June. Our boys are 17,14 and 7. They all 3 have very active, busy sports schedules.

My brother was 56 when he was diagnosed with ALS. His was also speech related at first. About 8 months into his, he had a feeding tube put in, mainly because he got choked a lot. Our family history had several of the men dying of strokes or heart attacks at young ages. Our father had a heart attack at 62, his father at 42 and his father at 45. My brother died at 57-don't know if it was a stroke or a heart attack, he chose to have his body donated to science upon his death.

This forum is a great place for you to be. I'm sorry you had to find us, but it's a really great team of folks. ALS has taught me to live each day as if it were my last, and also that I need to get busy living, or get busy dying. I'm actually hoping I have the ALS with the 30 yr warranty!

Write when you need to, laugh often, cry when you need to and try to enjoy each day as it comes. Don't sweat the small stuff, if you can do that! I think that God doesn't give us more than we can handle, He just finds funny little ways to test our faith!

Rest yourself!
Keep the faith,
brenda
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
Just keep on keeping on

My husband Rick is the PALS. He has been a lamb, dealing with his ALS and his leg injury from the explosion. He had successful surgeries to save the leg last year. He is now walking again. We just took a two week vacation to Montana ,cross country from upstate New York... to visit my brother. I had never been anywhere. We went by train (cheaper) and we had a wonderful time in the wheelchair accessable room. Rick just joined the Elk's lodge and is helping with their charitable activities now. He wore his Navy uniform to be initiated in. We bought a new uniform for him to wear when we got married. I was so proud to see him in it. He had to give up his fulltime job, and now just does tax returns during the end of winters. He just loves that. Also, we are redoing our home a little bit since my son just graduated college and moved into his own apartment. We have decided to get a pool table so Rick can moderately exercise his upper body and we can have friends and family in to try to beat him! He still drives, but won't for long. As you can see, we make the most of each day and are just thankful for what he can do. Each month we "moderate" our activities accordingly. We are married only 2 years, but we have known each other for 55 years. We are both 60 now. He follows a diet for his diabetes and to improve his healing.... takes no meds... as he is SO healthy. WE ARE DOING GREAT FOR WHAT WE ARE DEALING WITH> But at 60 anyway, who knows what a day will bring? Please hang in there and LIVE each day you are given.
 

Debbie54

Member
Joined
Aug 2, 2008
Messages
11
Reason
Loved one DX
Country
US
State
North Carolina
City
Roxboro
Thanks

I would like to thank you all for writing me back. You all lifted my spirits. You all gave me hope to take each day at a time. I see some of you have God in your heart by some of the advice you gave me. I do love my husband with all my heart,an he knows that. We were meant for each other. We have 5kids and 9 gkids and one on the was next month. Matt keeps saying he will still be here to watch her graduate,an get married. I am so proud of him. I wish he would learn how to use a computer so he can come her and talk to you all. But that is my Matt,LOL.:) i am so glad I have someone to talk to. Thank you all for being here for me and all of the people who are like us. I know the Lord is with us all,so God Bless you all until the next time I get back on here. Hugs,Debbie:)
 
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