Not open for further replies.


New member
Sep 9, 2007
Hello everyone,
I'm new to this forum - looking around the internet for some moral support and a place to "air" my concerns.

My husband is the love of my life. We met on June 4, 2005 and he told me that he had a doctor's appointment at the end of June due to a pinched nerve in his arm. He was the nicest, sweetest, kindest man I had ever met and I thought nothing of his doctor's appointment.

June 29th, 2005 - 24 days after we first met, he called me on the phone at work - crying, telling me that he couldn't meet me for lunch because he had just gotten some really bad news from the doctor. I booked the afternoon off from work and immediately went to see him - he told me he was diagnosed with ALS.
When "they" say: "ALS, three letters that will change your life forever" - they're not kidding!

We both continued to cling to a wrong diagnosis, after-all he was originally told by more than 1 doctor that he suffered a mild TIA (stroke) and/or had a pinched nerve in his elbow which caused the weakness in his right arm.

September 2005, after several trips to an ALS Doctor, and SEVERAL tests later, it was confirmed, the diagnosis... A.L.S.

Our world spun out of control, and we were faced with having to make decisions that most couples never have to make! We immediately got everything in order and flew to Hawaii (the place in this world that we both wanted to see), and got married.

Life wasn't so bad in the beginning of our marriage... we had to live through some nasty falls, weakness, and a feeling of being tired - but he was still able to get around and do things for himself.

All of that came CRASHING down around us though when I came home from work on Monday, March 19, 2007 and found Wayne unconscious in our bed. He was yellow and his eyes were rolling in the back of his head... he had over-dosed on his pain medication and spent a week in the psychiatric ward at the hospital after that.

This is now 6 months later... he has progressed so quickly now - and it's horrible to watch. I guess I never saw the progression before, but now I REALLY notice every little thing. I think back to our trips and times together when I didn't want him to use his cane or his wheelchair - I wanted him to be STRONG and do it on his own.

I feel like I am being punished (call it Karma) for something that I have done in this life or maybe one previously. I finally meet the man of my dreams and he's being taken away from me. Yes, he is the one with the disease, but it may as well be me who has this terrible disease. The more he loses, the more I lose.

This is one SAD life-lesson that I have to learn... Things will never be the same in my world. Not ever again...
Welcome to the forum. I'm sorry about your husband. He is blessed to have you come into his life at such a time as this.

Many of our members have no husband or wife to provide them love and comfort through this difficult time in their lives. We all experience different emotions during such a time as this. You are not alone. It is not your fault.

Thank you for sharing from your heart and please stay around to see what others have to say about your situation.

God Bless
Capt AL
Hi cdngirl62. I don't think you are the being punished for anything you have done. Life just stinks sometimes. Most of us here have thought as you have at one time or another. You have to take things one day at a time. Thinking too far ahead overwhelms you. Plan for tomorrow but live for today. Glad you found us and hope we can help each other. Take care.

You were very brave to even consider marriage after an ALS diagnosed! You have to believe that everything happens for a reason. ( cliche I know) I am finally coming around to that way of thinking and it's almost been a year since my PALS was diagnosed.

Glad you found this forum so that you may share your thoughts and concerns and perhaps help other PALS and CALS along the way.
Hello Cdngirl62, I am glad you found us but wish it was due to a better reason. I always say ALS affects the whole family and your experience shows why. I am so sorry. i wish it could be different. Please keep in touch! Cordially, Cindy

Thank you to all of you,

For reading "my story" and replying with such positive comments! I really appreciate all of your feedback! Yes, I will be here often - I have so many questions! So many concerns... and so many thoughts!

I'm a writer for a magazine and I've been seriously considering writing a book! A sort-of Chicken Soup for the Soul - Caregiver edition! What do you think? Think anyone would buy it?

Thanks again everyone...

Lou-Anne (I sign my postings with L.A.)
Hi Lou-Ann. I'd say you would get lots of sales since this would fill a huge need, even for caregivers of other terminal illnesses. Go for it! And sign me up for one of the first editions! Cindy
Hello I have been having problems with a pinched nerve in my right shoulder and its been months and doesnt seem to go away. I also have a hard time going up stairs my legs seem to get very tierd easy. Like going up is just a work out. My legs also hurt after working i work in the lunch room at a high school and its lots of running around. When i get home im so tierd ..after sitting for a while they seem to get better. I was wondering if this is something i should worry about fathers sister had als and not sure if this runs in familys. Im going to make an appointment . The problem is the care i get is milatary doctors and not always the best about sending you to the right doctor. Im worried i wont get the right doctor to check to see if this is what it is, What i should say and tell him so that they will send me to a als doctor.
Hi Linda- I hope you get to see the doctor you need and I hope it is not ALS. Cindy
Not open for further replies.