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CCB

5/16/2015

4 Comments

 
Picture
Members of the ALS Canada team were present on May 13 in Ottawa as the Honourable Rona Ambrose, Minister of Health and the Honourable Candice Bergen, Minister of State for Social Development, on behalf of the Honourable Pierre Poilievre, Minister of Employment and Social Development, highlighted increased financial support proposed for individuals taking care of family members facing a terminal diagnosis. 

On behalf of ALS clients we are grateful for the support from the Government of Canada and will continue to work with the government on innovative partnerships related to easing the burden of ALS.

                                                         
 -ALS Canada

I was very honoured to be asked by ALS Canada to represent the voice of a patient living with ALS and what the increase to Compassionate Care Benefit means to me.  Click on "Compassionate Care Benefit" if you would like to learn more about the enhancements to the plan, and on "Read More" if you would like to read my speech.
Compassionate Care Benefit
Good Morning,

I was diagnosed with ALS on September 19th, 2013 at 41 years old.  I was given a timeline of two to five years left in my life.  This September I plan to have an “I’m still alive” party and you are all invited!

My husband Travis couldn’t be here today as he is at work to pay our ever increasing household bills.  I am no longer able to work and we’ve had to sell our home to move into an accessible rental.

ALS, being a degenerative disease is terrifying for me and my family to live with.  My progression is increasing at a rapid pace as I can no longer walk for more than a few steps, carry anything, or get up by myself after a fall.

When the Compassionate Care Benefit was at 6 weeks we would have had no idea when to use it as no one knows when my last 6 weeks will be.  Do we use it now while I need help with daily activities?  Or when things are at their worst?  How will we know when that is?  What if I live past those 6 weeks, how do we keep paying our bills?  Most likely we would not have had the chance to use it at all.

This extension to 26 weeks provides my husband with the opportunity to care for me not only physically but also much needed mental and emotional support while relieving some pressure off our monthly bills.  I cannot get through this alone.  I am trying my best to fight, and I really need my husband by my side in this short life I have left.  That is what compassionate care means to me.

I would like to thank everyone who has worked for the Compassionate Care Benefit Increase and made it happen.  Especially ALS Canada and Brian Parsons for their awesome advocacy.  On behalf of those of us who are suffering, thank you for making this necessity become a reality.


4 Comments
Brittany
5/20/2015 06:33:56 am

So proud of you! Excellent speech...I can see why there wasn't a dry eye in the house! Can't wait for the "I'm still alive" party. Lost of Veuve is in order! xoxox

Reply
Heather
6/15/2015 11:58:11 am

Cheers to that Brittany! Maybe the Cosmopolitan Champagne Fairy will come by again :-) xxoo

Reply
Keith
5/21/2015 09:55:20 am

Awesome speech, proud brother.

Reply
Dad-Allan
5/26/2015 05:50:27 am

Well done Carol, great speech. Proud of you. Good to see and speak with you a few mornings ago on FaceTime. All the best for the end of month move and for the next speaking event.

Reply



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    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