ALS – My Jaw

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When Mark and I enter the bathroom my disabilities come alive because I am leaving the security of my wheelchair and trusting Mark to assist me with my duties and get me back to my chair safely.

When Mark starts the transfer to the toilet he bends my upper body forward to help me out of my wheelchair. Because my neck muscles are so weak my heavy head falls forward almost hitting my chest. Lately my bottom jaw has been moving forward in front of my top jaw causing my bottom teeth to move in front of my top teeth. While on the toilet my head is so heavy it stays pinned to my chest the whole time causing my lower jaw to stay in front of my upper jaw. At times I thought that I was going to break my teeth so Mark suggested we put my neck brace on before transferring me from my chair to the toilet and my jaw problem was solved.

Another problem I have while on the toilet is that I can’t talk because my upper and lower jaws are clenched together and I can’t raise my head to talk so Mark and I have worked out some body language to communicate. When I am finished with my business I start rocking my upper body back and forth and he knows I’m finished. If I need to talk to him I groan and he knows I need to say something. He then raises my head and holds it up so I can talk. This may seem crazy but we have to do everything we can to communicate even if he has to hold my head up while I’m on the toilet.

Now that is what I call love.

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13 thoughts on “ALS – My Jaw

  1. Thank you for sharing all of your many “challenges” and how to deal with them!! This should be a “wake-up-call” to any medical people who are reading this Blog: you share your creative skills in addressing “daily life with A.L.S”….we are grateful for everything you have shared! Love you both (and your family) so very much!

  2. Rosemary, Craig and I send you our love. I’ve been reading your blog for about 6 months now and feel so blessed to have met you and Mark. We all hope we can handle life’s trajedies with grace and dignity and you have been an inspiration to so many. I think of you and your family everyday. I heard a famous speaker (Colin Powell) say that when this life is over there are really only two things that will continue to matter…the character of the children you raised and the works you have done to positively effect your community. You have been and continue to be such an example to Craig and I on both counts. Thank you for making this world a better place…

  3. That’s what Knights In Shining Armor do, what ever it takes to get the job done. I hope someday I will grow up to be just like him.

  4. Dear Rosemary and Mark, Thank you for this blog of sharing a wonderful love. You both light up the world with this love. I am so thankful for your inspiration and see God’s Love Abundant with your shares.

  5. Rosemary, Thank you for continuing to share your story, you are bringing awareness to so many people about the ravages of this disease but ultimately, this isn’t a story about your disease, it is one of the greatest love stories I have ever read. You are both so blessed.

  6. Rosemary,
    I’m not sure you’ll rember me. I worked at Family Financial Credit Union until 2006. You and I met a few times to review our relationship with Transnation. Anyway, I have followed your ALS blogs and I just felt compelled to tell you how touched I have been. You and your husband are an inspiration. Prayers to you and your family.

  7. Rosemary, your story is truly an inspiration to us all. I am Amy Fett’s sister, and she has been telling me about you for years. You absolutely have an angel in a husband.

  8. Rosemary you and Mark have the type of love that most people can dream about. You my friend have always been a strong woman. It is an honor to take this journey and see it through your eye. Love you my friend

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