What It Feels Like

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So many people have asked me what ALS feels like or if I’m experiencing any pain. My body is getting weaker but I have no pain associated with ALS. Years ago, before doctors knew what ALS was, patients likened the muscle twitching feeling to little bugs running around under their skin. My muscle twitches feel like mild electrical shocks throughout my body. The twitches kind of remind me of what a blinking Christmas tree looks like. The blinks move to different muscles in my body like the lights on a tree.

My upper body reminds me of a ragdoll because when someone stands me up to walk my head falls forward because my neck muscles are no longer strong enough to support my head. My arms dangle at my sides so when I sit down I have to have someone place them on my lap. My right thumb is the only part of my hands and arms that still works. My legs still support my body somewhat and I’m grateful for that.

And my heart is still broken yet so full of love.


11 thoughts on “What It Feels Like

  1. Our heart breaks for you and yours as well. I remember all the outstanding work you did for so many years to support the Spiritual and Intellectual education of your children and community. Remember Gift gathering for Rainbow Auction, reading scripture at mass for Prince of Peace and the many other projects you helped “make happen”. Thank you for your leadership and example.

  2. Rosemary. Thank you for sharing. I know it must be difficult to continue to write on your blog but I am so thankful every time you are able to share your thoughts with us. Our hearts are broken as well. The grace with which you have handled this illness inspires all who meet you or read your words. Thank you.

  3. I don’t feel comfortable “liking” your posts, for liking doesn’t describe it. They do make me feel blessed to have you as friend and I admire your courage and faith. While breaking my heart for you and your family… perhaps it feels like a kite in the wind, swirling out of control to then get lifted by forces separate from me or the kite. Thank you for sharing your story Rosemary.

  4. Rosemary you’re an amazing woman don’t lose sight of that and God bless you for being such an inspiration to all of us. Hugs and know that I think of you every day :-)

  5. Your courage to share this journey is brave and inspirational… never give up and let your story inspire others to action… there must be a way to defeat this disease somewhere.

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