ALS – During the Night

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At bedtime Mark carefully picks me up from my wheelchair and gently lays me into our bed. We’ve been sleeping in our bed again not because it’s more comfortable than the couch but because I want to be closer to Mark. Night time can be really scary or lonely with not being able to talk or move. Once in bed Mark rolls me to my side putting one pillow against my back to help support me and one between my legs to better align my hips and legs. He makes sure my hair is out of my face as he adjusts my head pillow and puts my bite splint in my mouth. I’m starting to get hot spots on my heels which could easily turn into bed sores so Mark wraps my heels in a soft material like lambs wool.

I usually fall asleep right away and sleep for three to four hours before I wake up and need to be moved. Before I wake up tired Mark I contemplate whether I can go back to sleep or not. I try to adjust my shoulders by myself but they won’t budge. My legs are the only things I can move to help me get comfortable but they are starting to feel like really heavy limbs. Last night when I woke up my left ear was burning because it was bent over while I was sleeping so I wanted Mark to rub it. I tried to explain for about five minutes before Mark understood what I was trying to say. When he finally guessed my ear he thought I said no and kept naming more body parts until we came back to my ear again.

I want you to understand that I am one of the lucky ones dealing with ALS because I still have a voice. Some ALS patients lose their voice early on and don’t have a Tobii to speak for them or have a companion to sleep next to them. Mark and I have had two years to communicate with each other and work out the bugs so that I am always made comfortable. Some people never get this time.

I am truly one of the lucky ones.

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8 thoughts on “ALS – During the Night

  1. I am one of those anonymous “out in the void of the internet” people that just happened to stumble upon your blog. I have been keeping up with you for quite a few months and cannot go another day without telling you that you have made a difference in my life. Weird that someone you will never meet can have such an impact on your life, but you have had that effect on me. Thank you for your courage and compassion that has made it possible to share your life with all of us. I really do love you.

  2. Mark and Rosemary, I have thought about you so many times during the years and remembering the good times that we had in the past always wondering how you were doing. A few days ago I came across Terry Nolan’s post on Facebook and I was so sad to read about what you guys are going through.I thought of you non stop these past few days. My family and I are continually praying for you and your family. I know that when I have gone through my difficult times, I have relied on my faith to get me through, although my bad times don’t begin to compare to yours. You are an amazing couple Mark and Rosemary! Thank you for sharing your most personal thoughts. You are helping and touching so many lives! If there is anything I can do, absolutely anything. please call me. 6164011985. Sending you my hope, prayers, and so much love, Robbie

  3. Bless You Rosemary and Mark and the Grace you fill the world with. I feel so blessed to call you friend. You are a beacon in this life.

  4. Yes you are one of the lucky ones with all the support you have…especially Mark! But they are also the lucky ones to have you…such a beautiful example of grace under fire! I am learning so much about ALS…with knowledge like this, comes compassion. Thank you Rosemary.

  5. Amazing, what true love is. You both are an inspiration to all. Sorry you have to go through this, but thank you for sharing so much with the rest of us. Thoughts and prayers to you and your family.

  6. You are simply amazing! I am just in awe that you talk about the things going on with your body but still consider yourself one of the lucky ones. I went and read about the Tobii which is really something. I wish I could say that if I were in your place I would do it with as much grace but I have very strong doubts about that. Never, ever doubt your inner strength because you are my hero. My wish for you is only beautiful things!

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