ALS – Arrival

Posted: September 5, 2015 in ALS, Lou Gherig, Support, Uncategorized
Tags: , ,

What a great day. We sat in the yard, drank our morning drinks, fed the dogs, watched the birds at the feeders and enjoyed each other’s company. Fast forward a few hours and you will find my husband, home after a visit with his doctor. My mate and best friend of thirty-two years telling me the doctor said he thinks his has ALS.

Not a shock mind you, as this is what took his mother, and we sort of waited, and feared this day for the past twenty years. But a shock non the less. The signs were there. He choked when he drank or ate. His throat refused liquid or food from time to time. He went for tests, they told him he had too much stomach acid and that was eroding his throat. We took that diagnosis, clung to it and gave him a pill to help.

A month or so later a co-worker took him to the ER because he was slurring his words so bad they feared he was having a stroke. Cue the endless rounds of medical tests and doctor bills. He still works, he feels great. But he is no longer willing to eat in public because it is embarrassed when his throat won’t accept liquid and it rolls down his chin, or he chokes when trying to swallow solid food.

His upper arms twitch and tremble and he can’t sleep for more than a few hours at a time.

The vital man, who spoils me, pumps my gas, pays the bills, wakes me with a drink and tells me how smart I am daily is struggling. It is wrong. He is a good man who works any hours needed, covers for co-workers, drives the kids to appointments and practices and refuses to let me carry groceries is failing. I read a study once where most married couple only communicate, personally and face to face fifteen minutes a day. We shattered that study! We spend hours together with our animals, talking or just sitting together listening to music. We make plans, design new gardens, gifts for the kids or talk about politics. Now he struggles to speak clearly and I must make him repeat himself often. It sucks.

This is a man who backs me all the way. He is there for all my kids in any way possible. He loses sleep to drive them places, attends marching band events, takes our boy to air shows and funds them in any way that will secure their future. He has given the kids gifts of time, money and caring that they may never appreciate. But he did it.

Now, I am faced with losing this man, our whole family is faced with losing him. What will we do? Why are human trials for ALS treatments taking so long to pass the FDA? I am angry, scared, stressed, sad. I am all over the place emotionally. I find myself worrying about how to pay for the house. What will I do when I lose health insurance. Then I am mad at myself for worrying about finances when he can no longer work.

This is living with ALS. It is ugly, it is relentless, it strangles whole families. It forces you to think about living wills, DNR documents and property wills. All things you do NOT want to think about when dealing with a sick spouse. My soul mate it fifty-six years old. One neurologist sent him for more tests, he tossed us a small kernel of hope, saying he was looking for something else.I grabbed that kernel and held on to it like it was life itself. Deep down inside, I feel that is just that, hope. Waiting for the good doc to have time in his busy schedule to tell us results. God forbid he tells us ASAP or via telephone. We have to wait two weeks. Do they know what this wait does to families?

I am just writing this all down as a way to cope with it, get it out. How do you prepare for the possibility of living without your soul mate for thirty or more years?

 

 

 

Advertisements
Comments
  1. billgncs says:

    I’m glad you shared this. When I was facing cancer writing helped, and I found encouragement and inspiration from others.

  2. I was so excited when I saw your name in my emails of blogs to read. I’m so sorry that your life has been turned upside down. I hope that better treatments become available or better yet a cure. I will keep you in my thoughts.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s