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ALS Ambassadors

2/27/2016

2 Comments

 
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ALS Ambassadors

I'm very honoured to be an ALS Ambassador with this select group of people who are committed to raising awareness and funds to make ALS a treatable not terminal illness.
We are pleased to announce and introduce you to ALS Canada Ambassadors. The Ambassadors are volunteers who are helping raise awareness for the cause and the ALS Community through various public speaking events. If you are from an organization or a local community club or any other public event, and are in need of a speaker to inform an audience about ALS and the cause, then please reach out to ambassadors@als.ca and we can help bring an ALS Canada Ambassador to your event. To meet the 2016 ALS Canada Ambassadors, please visit http://als.ca/en/als-ambassadors .
Thank you!
ALS Canada Team
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Jacqui Devine – Durham Region
Jacqui came to the ALS Community in 2013 when her father was diagnosed with ALS at the age of 59. She started volunteering at events like the Bombardier ALS Canada Plane Pull, the Hike for ALS and attended numerous WALK for ALS fundraisers across the province. Jacqui is also an artisan. She hand-makes beaded bracelets which she sells, donating a portion of her proceeds to ALS Canada. 

A strong supporter of the ALS community, Jacquie wanted to get involved to continue to help spread the word  about this terminal disease. 

​If you would like to hear Jacqui tell her personal story, please send an email to ambassadors@als.ca. 
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Tara Favretto – Central Ontario                                                                                                                 Tara has been involved as a WALK coordinator for the Barrie WALK for ALS since 2011; the year her mother was diagnosed with ALS at the age of 65. A busy mom, Tara juggles three teenagers, and a full time job, and is a dedicated volunteer for ALS Canada.  For Tara, being an ALS Ambassador is “one of the few things that I can do to change or influence a situation that made me feel so helpless”. Tara’s mom lost her battle with ALS in in 2015.  One of the last things she said to Tara was to promise to never stop trying to find a way to stop others from ever having to endure what she did. Today, Tara continues to fulfill her mother’s last wish. 

​If you would like to hear more about ALS Canada and Tara’s story, please send an email to ambassadors@als.ca.
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Dan Riverso – Toronto Region                                                                                                                   Dan has a personal connection to the cause.  Dan’s father succumbed to the disease 20 years ago when he was a young man in his teens.  The experience remains fresh in his mind as if it happened yesterday. ALS left his mother and three brothers without a father. Dan’s mission is to bring further awareness to the disease and assist in ultimately finding a cure. As an engaged volunteer, Dan has worked with the ALS Society of Ontario and Canada in various roles and capacities over the past 15 years. He has raised money for the ALS Yoga Challenge, helped with the Hike for ALS and Family Day and also did a co-op term with the Society during university. 

​If you would like to hear Dan tell his personal story, please send an email to ambassadors@als.ca. 
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Vincent Quinn – Central Ontario                                                                                                           Vincent is both a volunteer and a client. In 2011, Vincent’s wife noticed his left foot slapping the ground when he walked. This led to a long journey navigating Ontario’s medical and social systems -  quite a different experience to Vincent’s 30 years working as a prosthetics/orthotics technician in the healthcare system. . Vincent diagnosis came in  2014. He is 51, married and a father to two daughters.

​To hear more about Vincent’s journey with ALS, please send an email to ambassadors@als.ca.
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Kinga Repic – Central West and Peel Region
Kinga was only 21 when she found out her mother was diagnosed with ALS in 2006. Upon receiving the news, she  made a decision that would change her life forever,  she moved back home and along with her father, became her mom’s full time caregiver. Four years later, Kinga’s mom passed away from ALS. 

Kinga’s connection to ALS inspired her to get involved in fundraising and awareness for the cause  any way she could. She organized and created  unique events like the ALS Cup for a Cure Soccer tournament, which she ran for 5 years, bike rides from Boston to New York,  and in theNapa Valley in California, to plunging into the Atlantic Ocean and even jumping out of a plane!  Her story has been featured in  ALS Canada direct mail programs, helping to raise more than $40,000 for ALS research.  She continues to share her story with local media and has been appeared on broadcasts through Rogers television and Inside Guelph. 

Kinga was the first recipient of ALS Canada’s Leader of Tomorrow Award and is connected to people living with or affected by ALS all over the world.  

​To hear more about Kinga and ALS please send an email to ambassadors@als.ca.
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Emma Fattori – Central Ontario and Toronto Regions
Emma has a unique connection to ALS – she has multiple family members who have experienced ALS. Although 90% of cases of ALS are sporadic, 10% of cases are what are called familial cases where genetics predispose family members to be at a higher risk for the disease. With having ALS so much a part of her family, Emma became more interested in educating others about the disease, the research and this resilient community. Emma first came to us as a volunteer with the Bombardier Plane pull for ALS Canada and is now a knowledgeable speaker for ALS Canada. 

​To hear more about ALS and Emma’s family story, or how ALS affects youth, please send an email to ambassadors@als.ca
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Eddy Lefrançois – Northern Ontario
Eddy was diagnosed with ALS on April 14, 1992: it’s a date I will never forget, I even remember it was a Tuesday at about 11:40. Because of that day, I got to meet all of you wonderful people.  

Eddy is a rare case of someone who has managed to live surpass the average life expectancy of 2 to 5 years. He wants to share the story of ALS, what it is like to live with the disease and be a a voice for others who died before their voices could be heard. In Eddy’s own words: I may not control the fact that I have ALS, but I can control my actions by making people aware that ALS is a terrible disease to live with…anybody can develop this disease at any time...

Eddy has experience sharing his story with the ALS community and being an ‘exception to the rule’ advocates for others. Eddy is committed to helping make ALS a treatable, not terminal disease by creating awareness as an active ALS supporter and client. He has travelled around the world and continues to travel , making it known everywhere he goes who he is and  why he is in a wheelchair with limited mobility. Eddy is an active participant in media and social media and creates awareness through his personal webpage dedicated to his life with ALS: www.lets-roll.ca. Now Eddy is an Ambassador for ALS Canada.  

If you would like to hear more about Eddy’s journey and ALS please send an email to ambassadors@als.ca

Anne-Ellice Pascoe – Hamilton and Peel Regions
Anne-Ellice has been volunteering with ALS Canada for over six years, with a special focus on the WALK for ALS and is a passionate advocate for the cause; raising awareness and  funds for research and client services.  Over her many years of being involved with the community, Anne-Ellice has made and lost many friends. As Anne-Ellice says in her many conversations with caregivers and people impacted by the disease there are always so many questions. If there are so many questions within the community itself, there is a lot more we can do for awareness, and this is where Anne-Ellice would like to help. 

If you would like to have Anne-Ellice participate as an Ambassador for you, please email ambassadors@als.ca

​Ron Myles – Northern Ontario
Ron comes to ALS Canada after being diagnosed with ALS in 2015. Ron has worked as a manager in hotels and restaurants for 40 years and still continued to work at Home Depot after retiring at 60 for eight years. Ron refuses to let ALS slow him down and wants to continue to work in the spirit of supporting those who live with or are affected by ALS by sharing his experience.

​If you would like to hear more of Ron’s story please email ambassadors@als.ca.
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Caphan Lieu – Toronto Region                                                                                                           Caphan is committed to advancing the ALS cause as his mother was diagnosed with ALS in 2014. Caphan comes to ALS Canada with a high level of “Ambassador” experience having worked on a similar program for Parkinson Society Canada. As one of his mother’s primary caregivers, Caphan has experienced firsthand the significant impact of adapting to life with ALS. Through his work on the ALS Canada Ambassador team, Caphan hopes to raise the profile of ALS, advocate on behalf of the community and assist other families impacted by the disease. 

To connect with Caphan please email ambassadors@als.ca

​Jay Johnston – Durham Region                                                                                                               Jay’s relationship began with ALS Canada in 2013 when his father was diagnosed with ALS. Shortly after the diagnosis, Jay entered a team in the Bombardier Plane Pull for ALS Canada and got his first taste of fundraising. The response was overwhelming with support for his dad, and the whole family was there to cheer on the team and offer support for the cause. Jay also organizes a Golf tournament for ALS called Golf Fore ALS. Jay was involved with ALS Canada from the client support side and watched how the need for support increased as the disease got worse.  Jay is a strong advocate for support groups. He met many families and made friends in the ALS community throughout his father’s journey. Although Jay’s dad passed away, he wants to continue to raise funds and awareness for the friends he’s made and future families that will be touched by the disease. 

​If you would like to have Jay participate as an Ambassador for you or your event, please email ambassadors@als.ca
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Mark Britt – Central Ontario, Toronto Region
Mark has extensive experience in both the professional and volunteer world as the Director of Internal Audit at the University of Toronto and an active participant in non-for-profit causes. ALS however is closest to Mark as his wife was diagnosed with ALS in the summer of 2012 and passed away from the disease in 2015. Mark is a father of two, staunch advocate, public speaker and fundraiser for ALS Canada and can speak first hand to the impact of the disease and the necessity for both client service and research to help change the future for ALS.  

​For more information on Mark and his story please email ambassadors@als.ca
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Charles Lam – Central Ontario
Charles comes to ALS Canada with a different perspective. Charles is am ambitious student fascinated by world issues and sciences and is currently pursuing his BBA at York University and has been volunteering over the last couple of years in fundraising events.  Charles has watched ALS through the eyes of his friend whose father is currently  living with ALS. Charles would like to encourage youth to volunteer with ALS Canada as it is such an important cause – trying to make this a treatable, not terminal disease. 

​To have Charles come and speak about volunteering opportunities or how ALS affects youth, please email ambassadors@als.ca
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Carol Skinner – Ottawa Region
Carol Skinner is 43 years old and lives in Kanata with her husband Travis. 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. On September 19, 2013, at the age of 41, Carol was diagnosed with ALS. 

Carol is truly a loved woman. With her husband by her side, she is 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, in partnership with ALS Canada has advocated on Parliament Hill for the ALS community and spoken many times to media about her story to raise awareness for the cause. 
Her motto is, “You have to live for the now and appreciate what you have – make it count.”

​To have Carol speak about her experience, please email ambassadors@als.ca
2 Comments

Fatigue

2/19/2016

3 Comments

 
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Fatigue.  
What a word.
So many meanings...tired, exhaustion, listless, lethargic, ennui, and the list goes on.

Since the beginning of my diagnosis, I've been told to conserve energy wherever I could.  Frustrating, as I wanted to use my body while I still had muscle movement, what happened to "use it or lose it"?  It was hard to connect the dots that walking for a block vs. using the wheelchair, meant that later I would suffer for it in terms of cramping muscles, body not working as well as it did the day before, and feelings of exhaustion. 
I have often been told that ALS affects the body but not the mind.  Simply not true.  Lately, I've been feeling depressed in that I felt that I was losing myself.  I've been overtired, whiny, listless, irritable, foggy, uninspired, experiencing anhedonia, and forgetting things.  I was the one at work who was known to be "extremely organized".  My inbox was clear, I got back to people immediately, my desk was clean and I was on top of planning.  Maybe too much as many people weren't interested in talking about the event that was happening in 6 months!  ALS has taken away aspects of my personality and replaced them with someone who is no longer clear headed and full of action.  So please be patient with me, I have bad days, good days and great days.  Bad days are trying to get out of bed, but too tired mentally and physically and feeling sorry for myself.  Good days include getting out of bed, showering, eating, reading, and maybe doing a few productive things on the computer.  Great days consist of getting outside, meeting with someone, planning a trip, or feeling positive and hopeful.  So I have learned to conserve energy wherever I can, to the point that I notice when others don't; why would Travis walk out of the room carrying one dish instead of the dish and the glass, which would require half the steps?  Oh, yeah, because he has no problems walking back & forth!

As anyone with chronic fatigue will tell you, one of the frustrating things is not being able to explain what the fatigue is like as you smile and pretend that everything is fine.  When I came across the following info sheet on fatigue from alsa.org  it was somewhat of a relief to know that my feelings are validated.  Most importantly, it made me realize that I am not losing myself, but that I do experience symptoms that are not due to my personality.  My personal favourite is #8.  Although you cannot physically see fatigue, for those who live with it, know it is real and you are not alone.


Although the course of ALS is unpredictable, fatigue is one outcome that is predictable, resulting from muscle weakness and spasticity. Fatigue can range from mild lassitude to extreme exhaustion. People often complain of tiredness, dwindling strength, and lack of energy. Despite the adverse effects of fatigue, symptoms can be minimized through effective management. Be recognizing the signs of fatigue, knowing which factors worsen symptoms, and learning how to conserve energy, persons with ALS can greatly improve their quality of living.

Noticeable signs of fatigue include: Slower body movement, slower speech responses, short answers, lower voice volume, dull tone of voice, shortness of breath, increased sighing, anorexia, irritability, anxiety, crying episodes, decreased smiling, lack of enjoyment of previously enjoyed experiences, decreased caring about things that were previously important, deterioration in appearance and grooming, increased forgetfulness, increased preference for being alone, and disinterest in decision making daily plans.

Factors which may aggravate fatigue include: Immobility, overexertion, sleep disruption, pain, excessive weight loss, protein malnutrition, breathing weakness, stress, anxiety, hopelessness, grief, too hot or cold weather, certain medications (such as tranquilizers, sedatives, pain relievers, antihistamines, muscle relaxants), alcohol, smoking, the unavailability of people when help is needed, the lack of financial resources to provide for needs to make life easier, and an inaccessible home environment which has steps and long distances between rooms.

Anti-Fatigue strategies are:
  1. Learn methods of making every task easier. Use assistive devices when needed. See an occupational therapist for determining what is best for your needs. If you have trouble walking, don’t resist getting a wheelchair. A motorized wheelchair will spare you the exertion of manually wheeling around in a standard model.
  2. Pace yourself. Move slowly and easily. Stop and rest often and take a few breathes before you start again. If you become breathless during a task, it is time to stop. Schedule heavier task during predicted times of higher energy. Plan your activities and gather everything you need before you start. Don’t stand when you can sit. Utilize possible shortcuts. Obtain assistance in completing tasks if you need help. Always allow enough energy to enjoy at least one valued experience each day.
  3. Alternate activities with periods of rest. Schedule regular rest periods each day, perhaps a half hour after morning care and an hour in the early afternoon. Rest before going away.
  4. Get a handicapped parking sticker. Your local department of motor vehicles has the form that your physician will need to fill out.
  5. Try to establish a regular sleeping pattern. If you have problems waking up at night, determine why and what to do about it.
  6. Avoid prolonged bathing in warm water, as it may worsen muscle fatigue. Be cautious of extreme outdoor temperatures.
  7. Maintain your nutritional requirements each day, and prevent unnecessary weight loss. You may need to consult with a dietitian.
  8. Avoid stressful situations as much as possible. Understanding fatigue will help family members cope better with emotional upsets, realizing they are not personal attacks, but normal responses to fatigue.
  9. If you feel noticeably weaker or have difficulty breathing after taking a medication, let your doctor know. Perhaps your medication needs to be substituted for another one or the dosage altered. Trouble breathing, however, may be related to breathing fatigue and may warrant an evaluation by your doctor for a breathing remedy.
  10. Make your living environment accessible for daily activities, and promote energy conservation. Moving a bed to another location or relocating personal items are some examples.

​Failure to manage fatigue can result in unnecessary suffering, social isolation and rapid physical deterioration. However, effective management will maximize your wellness and abilities, giving you the desire to keep living and the strength to carry on. Although in ALS you can’t take away fatigue, you can learn to overcome fatigue and not let it overcome you.


Excerpted from an article by Pamela A. Cazzolli, R.N.
​www.alsa.org
3 Comments

Leader of the Year

2/11/2016

2 Comments

 
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Travis with Annie and Patrice
Just wanted to share and brag about Travis once again!  
At the employee Gala Travis was awarded the Brookstreet’s “Leader of the Year 2015”.  
Here are some of the comments:
You are highly respected for your professional knowledge.  You have been chosen because of your outstanding ability to manage & lead while ensuring there is consistently “air in your tire”.
-this leader has a never say “no attitude”
-this leader is genuine with partners and guests
-this leader is always available to answer questions and no matter he will always say “make it happen” for the guest
-he is friendly and always willing to accommodate
-he is a strong team player and genuinely cares about the success of the hotel
-he is the go to Leader for special guest request
-he is a loyal and dedicated leader

As always, I couldn't be prouder of my incredible husband.

For those of you who know Travis, you know that he is very tech savvy, however, does not enjoy social media, nor is the best at communicating with friends & family.  With my condition, I worry about Travis when my time comes, so I convinced him to allow me to set up a "LinkedIn" page for him, to not only aid in networking for his career, but also as a way for people to keep in touch.  If you are a part of LinkedIn, please connect with him!

​I am still doing well, but feel as though my illness is progressing.  I no longer drive, I still feel as though I could drive, however, am not willing to put anyone else on the road at risk due to slow reaction time.  It is a difficult thing for me to face, as it really takes away so much independence, and to tell you the truth I am a little in denial about it!!!  I tried to blow dry my hair the other day, and the hairdryer was too heavy for me, ugh, I did discover though, that Travis can do a mean blowout!  As well, I now need a walker indoors & out, even with my leg braces.  So for Valentine's day, Travis bought me a spiffy pink & zebra striped walker for indoor use, so stylish!  Despite my progression, I am immensely aware of how lucky I am compared to others I know with ALS, who are at a point of total dependence on others, and use eye technology where their muscles no longer function.  Although I do live in fear, I still am grateful for what I can do, as opposed to what I can't.

I am starting to get used to the fact that I now have home help (I hate that I need it, I have my own way of doing things!), and am appreciating my girl Grace.  She has been a tremendous help, she makes me smoothies, plays with the cats, changes & washes the bedsheets, helps my circulation with a foot & leg massage, cuts my nails and helps me make dinner for Travis (okay she does all the work and I take the credit!).  Why is asking for help so difficult when it makes life so much easier?  A good lesson to everyone, pride just isn't worth it!

I had a great visit with my cousin Chelsea, Travis even had the night off so we went to dinner and caught up on our lives.  Keep watching the Habs for me Chels, you are my good luck charm!

Looking forward to more visits with friends, mom & dad, & Keith, Tania, Kate & Malcolm.

Happy Valentines Day, please be sure to give big hugs and kisses to those you love, life is precious.

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It is actually called the "posh" rollator!
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Travis graduating from the Cordon Bleu (2008)
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Thanks Diane for our delicious dinner at Milestones!
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Great day with Chelsea
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3rd Annual Curling for Carol Bonspiel

2/5/2016

1 Comment

 

Saturday March 19th

Thanks so much to Robin for her awesome dedication in organizing this event to support me.  Every year, Incredible!

Registration is now open for Curling for Carol.  See Coralee if you need a registration form.

 
Each team needs 4 people but if you don’t have 4 people, no worries, we will match you with other people.  Please make sure we know who is the contact person for your team or partial team.  Email is best.  One person will be the skip but many people end up on a team with no one who knows how to curl.  Is this a problem?  Not at all.  You will have lots of help the day of and you can take turns within your team.
Remember it’s really all about having fun with friends, family and coworkers while raising money for Carol & Travis.   And no curling rink would be complete without a bar attached!!  We will be celebrating St. Patrick’s Day as well so come dressed in your best greens or dress up in a theme that matches your team name.                                                           
 
Prizes are always awarded for Best Dressed Team.

Some team names from previous years included: 
The Sheet Disturbers
Slippery When Wet
The Hammer Heads
Chicks With Sticks
The Sweep Walkers
The ShamRocks
Curling Me Softly
Sweeping Beauties
 
There will be an Early Bird Draw for all registrations that are submitted and paid by Monday February 22nd 2016.  Payment can be submitted to Julie Levesque in the main office.
 
Don’t know carol?  Check out her blog and all the many ways she is standing up as an advocate for Canadians with ALS.

Robin MacIntyre

Email: rmacintyre@cmhaottawa.ca 
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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