It’s Real – ALS

Posted: October 15, 2015 in ALS, Family, Lou Gherig, Marriage, medical, research, Support, Uncategorized

I have been all over the place…the doctors, the tests. I have worried about a job, disability payments and worried over our home, food, pets, kids. I have ridden this roller coaster for seven months now, all without a single doctor willing to commit to a diagnosis. None of them want to call it, or fill out the reams of paperwork needed for a disability claim. They pass us from doctor to doctor, each one ordering more tests we can’t pay for, each one passing on making a diagnosis.

I was focused on the nuts and bolts. The finances, how to pay the bills, keep the house, make sure my mate has what he needs. Than today it settled in. I am losing my soul mate of thirty-two years. What the Hell? He is losing the ability to speak. He is losing all strength in his hands, his muscles twitch in his arms, chest, legs and face constantly. He is unable to swallow liquid without choking unless it’s thickened. He needs to hold his neck in a certain position to swallow solid food. He could be here one year, or three, five or 10 years, or he could be gone in months. This is not how I saw my old age. I planned on aging with this man holding my hand. I am lost, not sure what to do next. Life is Jane and Ray, not just Jane.

  1. Kathleen says:

    There are arms that will hold you up and help you both to make the decisions you need to make for the future. It’s 5 am and I have had my temper tantrum cry after reading your post this morning. None of us can know your terror, your fears, or the depth of your love as you do, except in our imaginations. You are my sister and my brother’s best choice! In many ways your journey through this is so much more painful than Ray’s. Both Sue and I are here for you. And you know how pushy those nurses can be, and she may even bring a singing telegram!

    • I’m so sorry Kathy, not sure how this blog post hit facebook, I must have clicked, or didn’t click on the right button. I didn’t want any of this pain to wash onto my family. I was just writing things out. As for the nurse and a singing telegram, bring it! Always welcome. She is responsible for dirty dishes in the sink, a quick dinner etc. lol. I get so lost in the music, listening, recording etc. I forget all that is going on for hours. She is an angel.

  2. I feel for you. You will be in my prayers and thoughts.

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