ALS The pain it brings is hard to cope with somedays.

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hope

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Oct 1, 2005
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Hello everyone, I have not posted for a while. As you know I just recieved my diagnosis in september and my wife and I are still in shock and having a hard time accepting this. As the weeks go by there has been changes in my condition that are hard to cope with as well. It was tough to give up my truck which I loved but I know it was a material thing so it was not so bad but giving up my job was very upsetting to me. I was in managment and alot of my employees are still upset and trying to come to grips with my illness. They said I was a great boss and did not deserve to get this illness. I am finding it very difficult to accept and will for a bit I think. My wife is totally devastated and cries every day. She is a very strong woman and has been my rock all along. She continues to fight hard with me everyday. We have been married thirty years coming up. I am only fourty seven years old. We are trying to cope the best way we know how and we work hard at it. She told me last night she is scared. I held her to try and comfort her, she said to me why does this happen? You live your life being good to people and kind you work hard you would give your shirt of your back to help another human being why?

The first symptoms was twitching in my arm and now in both arms. Then my hand is slowly losing motor skills. Cannot do up my shoes, anything with buttons. We changed alot of things to make life easier. Now my arm is getting weaker. My other hand is started to have a bit of a problem. The fatigue is horrible. My wife fights hard to keep me eating well. We love music so we sing often, and watch movies. We are afraid to talk about the future. My wife says let us live one day at a time, one moment at a time and lets not join any support group, lets try and do this on our own.

Christmas is always a wonderful time for us. My wife decorates our house from top to bottom and she did it this year. She told the doctors they should start telling people they are doing good when they are she said they do not say it enough. It is like you are put out on a clothesline and you fend for yourself. We thank you all here for your kindness that you show to each other. Thank god there is a place where we can come to.

hope.
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Hope. I know exactly how you feel. It is a very depressing disease and you will go through the different phases as well. While I agree with everything you have said I think you and your wife may be short changing yourselves by not joining a support group if one is available. First of all it will introduce you to other patients. . One of the benefits is that you get to talk to someone going through the same thing. You can compare your conditions and sometimes get an idea of how you might progress compared to others. Most cases are different but have a lot of similarities. It is good for your wife as well. She can ask the other caregivers how things are done. I know my wife had a lot of questions that the doctor just couldn't answer. He isn't living it. We are. It is an individual choice. I was contacted recently about the support group and the person was afraid to see someone in a wheelchair. We don't have anyone in our group in that condition. My point is that you don't know until you get there. You don't have to stay if you find it's not for you. Just another opinion. Good luck. Al.
 

Mike27

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Apr 19, 2005
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280
Diagnosis
10/1993
Country
CA
State
Alberta
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Edmonton
Hey Hope!

My wife and I were exactly where you and your wife are now. That was 1993. We cried everyday and wondered "why us?" In the end, I think we'll both find that nobody is 'chosen' to have this disease, so asking 'why' is a bit of an exercise in futility.
I'm not mincing words, I'm trying to show that instead of asking an unanswerable question, why not ask, "Now what?" That is, "OK, I've got ALS, how should I live my life now?"
Life is made of choices, Hope. It starts with the questions we ask ourselves.

You and your wife sound very solid, that's great! I've known people who were diagnosed with ALS and their spouses split. I guess they didn't hear the "for better or worse" part of the vows...anyway, you're blessed with a tough woman! Eventually the pain of hearing the diagnosis will fade. I give you my word on that. Then, with clear minds, you can decide on support group meetings. In the meantime, ask lots of questions on this forum, it's a great launching pad for information.

I might add though, it would be a good idea to contact your local ALS Society. They can help guide you through the red tape of the healthcare system and medical supply companies, should you need them.

I'm glad you're here, Hope. Not for the predicament that brings us together, but still nice to meet you!

Cheers!
 

dana

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Mar 17, 2005
Messages
216
Hello Hope,
My dad also ran his own business, and it has been very hard on him to let his responsibilities go. He goes in and out of depression, and my mom does a great job of picking him up when he is down. A lot of my dad's employees felt the same way as yours...why is this happening to him? He is such a great man and boss. Why would a disease like this take someone like my dad? The only answer I can come up with is because my dad is such an unreal man. If this was happening to Joe Blow down the street, people might feel bad for him, but they would eventually forget about it. People are not forgetting about my dad because he is such a wonderful person. This disease has effected so many people in my town through my dad. It has touched a lot of people and hopefully changed their lives for the better. God works in weird ways sometimes, and we might not understand the reasons for why He does some things. But, I whole heartedly believe there is reason and meaning for why my dad is battling this. Be thankful for your wife (I am sure you are). My mom has been amazing for my dad, and I think her strength will prolong my dad's life. They have an amazing marriage too. They have been married for 26 years...long time. I am so thankful that my dad has my mom. I just told her the other day how great it is that God has given her the strength to go through this. She always thought she was dependant and was the one who needed to lean on my dad. Now she is the rock that my dad leans on. She never thought she could do it, but God is giving her the strength, and it is so neat to see. I hope that you can enjoy this holiday season and enjoy your time with family. It is the most important thing.
Dana
 

jbird

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Joined
Jul 28, 2005
Messages
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I hope this does not sound rude but it is time to face reality. This disease will not go away by not talking about it. Please let your family and friends help you as much as they can. and please don't put things off because there is so much to get in order. I am talking from experience, so I hope that you don't take this the wrong way. I just want to help in any way I can. I will pray for strength and courage for you both. I will always be praying for a cure.

In God's hands...
Jbird
 
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