Saturday, January 7, 2012

the diagnosis and the "push"

Amyotrophic Lateral Sclerosis ... ALS

  • A = absence of
  • myo = muscle
  • trophic = nourishment
  • lateral = side (of spine)
  • sclerosis = hardening or scarring
Three little letters, but can they ever pack a punch !

After some time to digest the news .... I'm just going to punch back.

On Jan. 3 we saw the specialist, Dr. Hannah Briemberg, at the ALS  Clinic at the G.F. Strong Rehab Centre.
She did some more testing and confirmed the diagnosis. With the history and examination she thinks this is probably slow progressing. She really won't be able to tell for sure until she sees me over a period of six months or more.
There is a full complement of professionals on the ALS team. I have all their numbers and emails.

Unfortunately, we all know what the public face of ALS looks like. But that is not me. I have lost some small  muscles and fine motor function in my hands. My arms and legs are strong and there are no problems with breathing  or swallowing.

Dr. Briemberg said that attitude was very important in dealing with this disease. Fortunately, I have lots of attitude ! Really though, Margaret and I have always tried to live our lives well each day. She and the other women of Abreast In A Boat have led the way in showing me how to do that.
Dr. B wrote this to me -
"....... I will share my philosophy about life in general....being in this business, I can say that none of us knows what is around the corner and, if you are able, it is best to do what you want, when you want rather than putting things off.  I think this goes for everyone and not just people with ALS.  Unfortunately, it often takes a bad disease, however, for people to get the "push" to do this."

5 comments:

  1. Boy, that philosophy is right on. Thanks for starting this blog so we can stay connected with you.
    Much love,
    Nora & Larry

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  2. Wow. So right! Your in my thoughts. Thanks for the blog

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  3. Hi Sheila, How did the November tests go? I just re-read your blog and realised that I hadn't signed on...I hope everything is really s-l-o-w-i-n-g down. I constantly thinking of you and look forward to reading your blog.

    Lorie xo

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    FIONA

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