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ALS & The Holidays

12/21/2017

1 Comment

 
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As someone living with ALS, the holidays are an emotional time. I feel so grateful to still be alive to spend time with my family, but it’s also difficult knowing that my life will never be like it once was.

I’ll always enjoy watching those I love having holiday fun. However, due to my limited mobility, I’m no longer able to help chop down the perfect tree, go shopping for presents or put up decorations around the house. ALS has changed everything for me, and for my husband, Travis.
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"Four years ago when Travis and I first heard from my neurologist that I had ALS, we were in absolute shock. It didn’t make sense. I felt healthy, did yoga regularly and enjoyed travelling. At only 41 years old, how could I have a terminal neuromuscular disease that doesn’t have a cure?"
Since I’ve been diagnosed, I haven’t worked. I use a wheelchair. I also struggle with constant fear. How will I possibly cope when my muscles deteriorate to the point that I have full-blown paralysis and can’t breathe on my own? This is what ALS does to a person’s body, and unfortunately, it’s also what my future will look like.

Right now, ALS research is extremely underfunded. It’s a devastating disease, and there is no cure. My wish this holiday season is that more funding can go to the many promising research studies underway. ALS Canada relies on donor support to back this research that could lead to new treatments.

Please find it in your heart to help everyone else across our country who is living with ALS by making a donation today. With your help as a donor this holiday season, new insights could be discovered and this disease could become treatable, and not terminal. 

One thing about living with ALS is that you realize that each and every day is a privilege. To me, the New Year is another important milestone and 2018 will bring fresh possibility, opportunity and hope for a future without ALS. One of the best gifts you can make this holiday season is making a donation. 

With warm wishes,
Carol Skinner
Living with ALS
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About ALS
Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.
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About ALS Canada
As the only national charitable organization that invests in ALS research across Canada, ALS Canada funds high-quality research that offers the most promise to slow down ALS or even stop it. Within Ontario, ALS Canada has a role similar to that of the provincial ALS societies providing services and support to help meet the needs of people living with ALS. We are a registered charity that receives no government funding – all of our services and research are funded through the generosity of donors. Visit our website for more information.
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1 Comment

Cherish

12/1/2017

7 Comments

 
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This is my fourth Christmas after my ALS diagnosis.  This was the one I was most afraid of.  Because of course my mobility is getting more difficult by the day, and living in Ottawa, the winters can be a nightmare.  When it snows, I am stuck inside.  I do have my power wheelchair, though the snowbanks on either side when I'm trucking along the sidewalk are often higher than me, and when I reach the end, of course a street snowplow has come along and pushed snow against the end of the sidewalk creating a wall  impossible to cross.  I am waiting for someone to invent a snowplow wheelchair so I can make my own way!  Due to lack of circulation, my feet often turn purple, and the cold literally shuts down my body.  At Christmas, I miss my brother, I miss my Granny, I miss Nemo.  

But my attitude has changed.  We are headed to Newburgh to see Heather & Andy, and they are coming to visit us in December as well!  It is my parents and my cousin's first Christmas in Ottawa.  Travis & I are going to a Christmas Tree Farm in Pakenham to choose a tree, and he has learned his lesson about not sawing through knots!  Good friends joining us Christmas Eve, and mom's Christmas apps (as in appetizers not iPhone icons) are what make me happy.  So despite my initial fears, I can't help but be excited about the season.  Travis maybe not so much as he has to put up with me telling him exactly in which spot to put the ornaments ("in front of the light!", "the little ones at the top!", "the polar bear beside the picture of Nemo!") and again cooking over 200 turkeys at work.  Nevertheless, we know the importance of cherishing moments and appreciating what we have together.  With so many friends and family to celebrate the season with, this is what I most cherish.

We wish you a happy, healthy and joyous holiday season, full of appreciation, laughter and love.

For those who are interested, check out the ALS Canada Holiday Campaign featuring Travis & I on the media page of this blog.
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Santa Travis and Santa Nemo sharing the love!
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    Author

    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com