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Grumpy'sWife

Distinguished member
Joined
Aug 18, 2014
Messages
153
Reason
Lost a loved one
Diagnosis
07/2014
Country
US
State
Ohio
City
Southern
That was the day my world was rocked by news that husband had ALS. Ours is a complicated story so I will try to make it short. For the last 4 years we have traveled the country for our job, working together, playing tourist on the weekend and coming home 10 days at Christmas and if we happened to get through close by Southern Ohio.
In January, 2014 my hubby fell coming into our hearing test unit. He hit his forehead and left shoulder. He had some neck pain, a bloody nose and bruised cheek. He refused to go to the doctor, said he was fine and we went on with our work day. I did call the company and fill out our form for work place accidents. In February he began to complain of arm weakness and shoulder pain, still refusing to go to the doctor. By March he was complaining of leg weakness but still insisting that it was nothing. We had a cruise planned for the first of April but by then he was occasionally using a cane and still complaining of shoulder pain and arm weakness.
I finally put my foot down when he fell at the cruise port in Miami, I wouldn't get on the boat unless he agreed to go to the doctor the minute we got home from the cruise. He agreed.
We got home the 2nd week of April and he saw the family doctor who sent him to a neurosurgeon. The neurosurgeon did several MRI's and found that his C6-C7 vertebrae were in need of a repair, this he said, was putting pressure on Grumpy's spinal cord and causing the problem. We then began the fight with workman's comp. What a nightmare!
May began with Grumpy using a walker which turned into June and the by the first of July he was in a wheelchair and I was out of mind with worry and calling our Illinois work comp claims adjuster daily. We had lost our health insurance because I wasn't working and they were in the deny, deny, deny mode. I finally called the neurosurgeon and we agreed to pay for the surgery up front.
On July 28th, Grumpy had the surgery. That afternoon the neurosurgeon was calling for a neurological consult as he was not happy with the results immediately after the surgery. The next afternoon after seeing 5 neurologist's and two EMG's, we got the diagnosis. Since then we have had blood tests to rule out other possibilities, seen another neurologist who specializes in ALS and been given some much info my head is spinning.
Not once did anything other than this spinal cord injury enter my mind. Why? Because I didn't want it too. Because this is my husband, best friend and soul mate. I don't use those words lightly. He came into my life when I was at my lowest. I was divorced with 5 kids under 6, drank too much and cared to little. He made me see that my life wasn't over at 26 but just beginning. I became the person I was supposed to be and more importantly the mother I was supposed to be.There isn't a day that goes by that he doesn't tell me I am beautiful even now. We have been married 18 years and worked together for 16 of those.
All I know now is that I will do anything and everything I can to take care of him and give him the quality of life that he deserves but I am afraid and sad and angry.
Thank you for taking the time to read my post, I know it was long. My apologies for that but honestly I needed to get it written out and tell this to someone who just might understand.
 
Welcome,
First advice here is to read some of the threads you'll find here. Don't try to do it all at once. When I first came here I probably spent more time reading old threads than the new ones. There's a lot of info there that will make life easier for you both.
Secondly, don't be afraid to ask questions. Our CALS have been in your shoes and understand. Us PALS have been in your husbands shoes.
Third, remember that as this affects each of us differently, what works for one, may not work for someone else, don't give up. You'll get lots of possible solutions, one of them is bound to work
 
welcome and so sorry you have to be here-there are sections on this site for CALS like you and some experienced people like barbie affected atsugi and others who can help you.
My advice, for what its worth, is to get your husband into an ALS clinic as soon as possible. They have specialized resources to help people like us.
 
Is Grumpy a veteran? Makes a big difference.

Anger will disappear as you get very busy assisting your husband. You'll get over your fear as you get your questions answers, your ducks in a row, and gain competence in your new "job" as a CALS.

It doesn't seem like it now, but sadness also fades with the years.
 
>Thank you for taking the time to read my post, I know it was long. My apologies for that but honestly I needed to get it written out and tell this to someone who just might understand.

Be assured that we all do understand. Every day is a new battle, but it sure is helpful to have the support and knowledge of this group. Hope we can help you and Grumpy!
 
I'm so sorry. I was diagnosed the same day. Welcome, even though we all wish you didn't need to be here.
 
One of the cruelest things about this disease is that it seems to attack strong, healthy, wonderful people. I had two sons and my husband had two daughters when we married, and he is the best thing that every happened to all of us. I was, and am, devastated, but an unexpected friend put things into perspective for me after describing her lifelong search for Mr. Right: I've "only" had 21 years with him, but she is our age and is still looking. We do understand, so please don't apologize for your lengthy post--understanding and support is why we are all here.
 
Oh my, that story of yours was worth reading every word. Welcome to our elite club. We are an odd bunch - none of us wants to be here, but every one of us knows it is the best place to be too.

All your feelings are so valid. I remember when Chris first said to me that someone had told him that they had a friend who had begun to speak with the same slurring as him and it was ALS. I googled it and was furious and wanted to slap the person who had said this. What did someone think they were doing saying that he could have something as horrendous as this!

I stayed in firm denial until very close to when he was diagnosed (about 5 months after that conversation). He was showing so many symptoms that I knew in my heart by then that this was truly serious, but still it wasn't until the words were spoken to us that I had to start facing it.

We will do all we can to help you through, and help Grumpy.

Dalvin gives excellent advice - just read a bit at a time (I scared myself quite silly the first time I came here reading for several hours). Stick to reading threads that seem appropriate to where you are at for now. We do talk here about details of care and coping in the further stages, and often that is too much information for someone newly diagnosed, so leave those alone. You can read them later when they are needed.

And ask questions. There is a search function in the blue bar at the top which is great for seeing what has been said on something you need to know about. But none of us ever mind doing any conversation over again fresh when someone is at a point in need and wants to ask.

Your husband sounds like a truly wonderful man. You also rose to become the person you are now, the person he saw inside of you. I hope we can help you keep sight of all that as you come to terms with what is happening.
 
I just caught Mike's disease and my post went to mod ... wait for it ...
 
Dang, so sorry. we all understand and have been there. you and your husband sound like great people. It is so shocking to get that diagnosis, even when you are expecting it. for you guys, what a double shock! the best advice I can give you now is get to an ALS clinic, and start talking to family. Also, call your local ALSA and see if they have a rep that can come and talk with you guys. most of all, be kind to yourself--be gentle and do not expect to much as you are grieving. everything is overwhelming, but as you move forward things will sort them selves out and the most important issues will rise to the surface.
 
Thank you all so much for the words of encouragement and support. My Grumpy is a wonderful man and I want what is best for him. You are right Tillie when you say some of the posts are a little overwhelming, I started out reading everything and had to stop, too many tears.
Yes Grumpy is a veteran and we had a meeting today to fill out paperwork for his veterans benefits and I have also filed for his SSDI. The Veteran's service office here was very helpful although they seem to not understand anything about ALS, they asked me questions and seemed genuinely upset at his diagnosis.
Our first appointment with the ALS clinic is September 5th and I both dread it and look forward to it. I think once we have it and can get some of our medical questions answered some of my fear will abate.
Grumpy was my hubby's CB handle for many years and all of our friends call him that and so do most of the family. I didn't want you to think I was being mean! He is probably the least grumpy person you will ever meet!
Thank you all again!
Kaye
 
I thought Grumpy was some kind of nickname that probably meant he is an amazing person :)

Day at a time, sometimes hour at a time xx
 
Welcome, this forum has been a real help to me as far as answering questions, even though we are all different, we need others that are facing the same horrible disease. This is a good place to talk about anything or just vent when life gets frustrating.
Janie
 
Hi Kaye,
Sorry you find yourself here. I was diagnosed June 17th of this year. It is like a cold bucket of water over your head or a punch in the gut. It takes a while to gain the equilibrium back. One thing that REALLY helped me was to discipline myself to stay in today. One day at a time. I used to think what will happen next week, next month, next year. That does NO good. First of all we cannot know what will happen in the future and it's probably good that we don't.

I see you live in Chillicothe, we live up north by Cleveland. Hang in there.

This is a good place for support and to learn.

Lynne
 
It's so true as Lynne says - if you let yourself get taken off with what is going to happen it is terrifying and overwhelming. One day at a time, with what you have in that day, is more than enough and does help.
 
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