My ALS Voice

Rosemary black sweater

I haven’t written much lately because I’m having a difficult time writing anything with substance because I don’t want to complain and sound like Mrs. Whiner. But if I stop writing now I’ll feel like I haven’t finished my story. If I give only my positive thoughts then I’m not giving you the true picture of living with ALS. I feel compelled to describe what is happening to my weakening body with the hope that someday my words may be helpful to others that have ALS but no longer have a voice or a Tobii machine to talk for them. I feel the need to describe what is happening to my body in the hopes that a caregiver will find something helpful for their loved one. With that being said I’ve decided to give you a more detailed glimpse into my physical world starting tomorrow. I will try my best to describe how powerful this disease is in taking over almost every muscle in my body but leaving my mind painfully aware of what is going on around me. I want to close by saying that this disease wins sometimes but love and a good sense of humor win most of the time and I’m grateful for that.

15 thoughts on “My ALS Voice

  1. Aw, this was an exceptionally nice post. Taking the time and actual effort to create a superb
    article… but what can I say… I hesitate a lot and never manage to get
    nearly anything done.

  2. i loved you when I lived in Michigan & I miss you now that I’m not there & u have inspired me through ur posts. It’s amazing to stay positive but people will understand that loving with ALS is not all sunshine and rainbows. Write about the bad times & end it with a lesson. Love u & ur family much. I pray for you every day and I commend the strong woman you are.

  3. Thank you for your never ending courage! As your friend I have considered what you must be experiencing, but sure that what I imagine does not come close to your reality. I believe that what you will put into words will help others who have loved ones experiencing this disease. Your explanations, your love, will be a gift to facilitate their understanding.

  4. Sweet Rosemary, You are loved by so many, but you know that. I’m praying for love and peace to continue to surround you. You’re in Gods hands. He loves his family as you do. You have impacted my life in a way I can not explain. I feel such peace for you. You will be an angel watching over us all and that comforts me. I only wish this dreaded ALS had not found its way to you. I wish Karol & I could bring our dulcimers to you and play a song or two. I will continue my prayers for you all. God be with you, Suzi 💖

  5. Mrs. Whiner? Really? No one would ever, now, or in the future, use that adjective to paint your portrait. We’ve known you a long time and those Rosemary colored glasses will always be your mantra. That said, and being a God loving person, one of your best posts was Fuck ALS. That disease has your body but not your mind…always give us whatever piece you want; we can support you!

  6. You will be rewarded beyond your wildest dream…you are a child of the king and doing his work all while braving your own personal battle…God will bless you <3

  7. Rosemary you and your family are so honest and loving and helping so many by being so open with what ALS is doing to you and the support of your family and friends. Thank you. Thoughts and prayers continue to and for you and your family.

  8. Thank you for being willing to be honest about the bad too! Watching my mom go through it I am painfully aware of what it does to the body. I will continue to pray for you and your family.

  9. Your true story is the whole story, the good and the bad. We need to know your whole story to truly understand the life of Rosemary with or without rose-colored glasses! We love you–all of you!

  10. You are the bravest person, most empathic, and kindest person I know Rosemary. Always keep it real. You are not complaining when you are telling us what is happening to you. I cannot even imagine it. My heart hurts for what is happening to your body and the helplessness you feel will be empowered with your continuing to express yourself. Don’t ever stop… {{{{{hugs}}}}}

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