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Media Release

5/30/2015

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Thank you to Noella LeBlanc, who wrote my story and submitted it to the media for this year's Ottawa Walk for ALS...
About Carol Skinner

Lead walker and ALS advocate – Ottawa WALK for ALS

Carol Skinner, is 43 years old and lives in Kanata with her husband Travis. They have been married for five years.

Carol used to love to hike … and dance … and be active. Travis will tell you she loves reggae.

On September 19th, 2013, at the age of 41, Carol received devastating news. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS).

ALS, also known as Lou Gehrig's Disease, is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. Every day two or three Canadians die of the disease. The average life expectancy after diagnosis is three to five years.

Carol has a Masters in Art Therapy and, until her diagnosis, worked for the Canadian Mental Health Association counseling clients and training people in the community to help individuals with substance abuse and mental health issues.

Prior to becoming a therapist, Carol worked for the YMCA for ten years. She started as a camp counselor and grew to become a camp director.  Carol is a recipient of the YMCA’s Outstanding Service to Youth Lifetime Achievement Award.

The first thing one realizes after meeting Carol is that she is a truly loved woman. With her husband by her side and her family from New Zealand having taken up residence in their home to care for her, she and Travis feel blessed. They are surrounded by friends who help them in any way they can.

Her blog (www.livelovelaughwithcarol.com) provides her with a venue to keep friends and family up to date with her life and the ongoing progression of the disease.

Still a vibrant, outgoing woman, Carol says that she has watched herself go from an adventurous person to living in fear.  Now she can only walk a few steps at a time, with braces on her legs, and cannot carry anything or get up if she falls.

Her first symptoms began to appear in February of 2013, when she had difficulty skating on the Rideau Canal. At first, Carol, who had always been the one to “push Travis around on the Canal,” thought she needed to get fit again after a long winter so she began to exercise. She tried walking and running to get fit but began to trip and fall.

After a series of events where Carol continued to lose her balance, she sought the advice of a doctor, who referred her to a neurologist. It was then that she and Travis were given the devastating news.

Carol has had to make many adjustments in a relatively short time. She has had to leave her career behind. She and Travis have had to sell their first home together because it had stairs. They have lived in their Kanata apartment for less than a year and are moving again at the end of May where the new apartment layout will accommodate her wheelchair.

Since her diagnosis, Carol has become a strong advocate of the move to increase compassionate care benefits, part of an existing EI plan, from 6 weeks to 26 weeks. She says the new plan will mean a great deal to her and Travis.

However, ALS advocates will tell you that six months is not enough. Time is precious and it is difficult to predict how quickly, or how slowly the disease will progress. This can place an incredible strain on families and caregivers.

 “We’re taking it day by day and are appreciating what we can.” She says. “You have to live for the now and appreciate what you have – make it count.” 

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LOL

5/29/2015

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Awesome cards for someone suffering with a serious illness by Emily McDowell...
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Infographic

5/28/2015

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Please sponsor me for the 2015 Ottawa Walk for ALS, Click Here!
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ALS Awareness

5/23/2015

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Blue Cornflower; ALS Flower of Hope
June is ALS Awareness Month
It is the month of each year that is dedicated to raising awareness of ALS across the country.   Come and support the flag raising ceremonies and walks in your community. 

2015 – Flag Raising Ceremony

In Ottawa there will be a special ceremony to be held on June 1st at City Hall at 9:30 a.m.  Our Ottawa lead person – Carol Skinner will be speaking as well as ALS walk committee representatives Nigel Van Loan and Yary Coulombe.  Mayor Watson will present a  proclamation  that June is ALS Awareness Month in the City of Ottawa and will say a few words to the ALS community.

In raising awareness we aim to give people in our communities a better understanding of what ALS is and what is needed to support clients services and fund research to make ALS a treatable not terminal disease!

If you are able to -  please join us at the flag raising ceremony at Ottawa City Hall, 110 Laurier Avenue West, Ottawa at 9:30 a.m.  The ceremony will take place at the flag pole outside the Laurier Street entrance to City Hall.  As well, If you are able to,  please share the flag raisings and the walks in your community through social media.  Pictures would be terrific and I would be happy to share some of them in my next newsletter as well as on Facebook.

Thank you for your support in raising awareness for the ALS community.  If you have any other ideas for awareness month , please let me know.

Walk season is upon us
Saturday,  May 30th is the Kingston walk at the Confederation Basin - Registration is at 10:00 a.m., walk starts at 11:00 a.m..  There will be a free BBQ for all participants, a silent auction and a 50/50 draw.
Saturday, June 6th is the Cornwall Walk at St. Lawrence College, Cornwall - Registration is at 9:30 a.m. , walk starts at 10:30 a.m.  There is also a free BBQ for all participants.
Saturday, June 13th is the Ottawa Walk at the Canadian War Museum - Registration is at 10:00 a.m., walk starts at 11:00 a.m.  There is a free BBQ, silent auction and 50/50 draw.

Thank you for your support!
Lianne
Lianne Johnston, M.A.
Regional Manager, Eastern Ontario (Napanee east to the Quebec border)

Join a Walk for ALS in your region - go to  www.walkforals.ca


As the lead walker for the Ottawa ALS walk this year, please sponsor me to help make ALS a treatable, not terminal, illness, thanks for your support!  Sponsor here
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CCB

5/16/2015

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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

Read More
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Moving Day

5/14/2015

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It's official!  Although technically our move in date is May 31, yesterday Travis & I picked up the keys to our new apartment.  Dayne & Travis have already painted two of our walls and the job looks great!  Special thanks to all of you who are coming to help us with packing and moving and to thank you we will be hosting a BBQ on our new terrace when we're done (probably around 2:00pm on May 31st so be sure to stick around)!
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Asia

5/9/2015

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We had such a fabulous time on our bucket list trip to Asia.  I was hoping to experience completely different cultures, amazing sights and fabulous food.  We got all of that and more.  It was phenomenal to have the ability to visit so many different countries in one trip, in fact, I was able to add 6 countries to my list of those visited, quite an achievement!  Cruising is such a great way for me to travel due to my limited mobility and fatigue.  As we travelled from Thailand to Singapore and sailed Northeast visiting Vietnam, Hong Kong, Taiwan and Japan, we had a mix of sea days which allowed me to rest so I would have strength for port days.  Unfortunately mom & Don were sick for the first week (Don had this thing called a cold which St. Maarteners don't understand, lucky them) but they were able to recover and still enjoy many sites.  I have added many awesome things about the trip on my travel page from crossing the street in Saigon as a free adrenaline rush, to a changing of the guard in Taiwan even better than that at Buckingham Palace.  One of my favourite moments is in the video above.  As we were sailing away from Kagoshima, Japan, there were young drummers putting on an amazing show, and families waving us off, as the volcano in the background was erupting.  Japanese people are so helpful, warm and friendly, they always wave to foreigners which made us laugh and smile and made our day.  Next time someone looks lost, don't just give them directions, walk them where they need to go, that is the Japanese way, so kind.  Of course as was the problem with Africa, instead of being able to cross Asia off our list, our trip has only succeeded in making us want to return!
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Join the Party

5/5/2015

3 Comments

 
Travis & I have returned from our incredible Asia trip.  We are recovering from jet lag (wide awake in the middle of the night and sleepy during the day), and trying to get back into the swing of things.  Coming soon, pictures and Awesome things about our trip but in the meantime I wanted to invite you to tomorrow's event.  Hope to see you there!
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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