Congratulations to the Living Loving Laughing Walkers and their supporters who raised a whopping
for the ALS Society of Canada at the 2019 Ottawa Walk to End ALS!
Travis & I are so grateful for your love and support.
On Monday, June 3rd Mayor Jim Watson proclaimed June to be ALS Awareness Month in the City of Ottawa.
Awareness is important to create shared understanding of the dire need to create a future without ALS. Those who are living with, or have cared for someone with, the disease know only too well how ALS can take dreams, abilities, lives.
Awareness is a big part of creating a future without ALS because it inspires people to take action — whether supporting someone who is living with the disease, volunteering their time, organizing a fundraising event, or making a donation.
Families living with an ALS diagnosis right now are in the midst of a challenging journey – one that is overwhelming and can bring feelings of helplessness and hopelessness. This awareness month, we’ll be asking others to act against that hopelessness and helplessness — by honoring the care, love and hope that exists to face an ALS diagnosis. It’s the only way we can create a future without ALS.
ALS Awareness Campaigns Across Canada:
The month of June 2019 has been proclaimed by the Province of British Columbia as “June – ALS Awareness Month in BC”. On June 1st, BC landmark buildings will light up in the ALS colour purple to show support for people living with ALS. Over 100 events are planned to be held in British Columbia during the month to raise funds to support ALS patient care and research.
ALS Society of New Brunswick and Nova Scotia:
Ottawa & Canada:
While I very much appreciate the Mayor's Proclamation, I am disappointed that the City of Ottawa no longer raises a flag in honour of ALS Awareness. Where are the City's Purple Lights? How do we get the Canadian Houses of Parliament to light up in purple in honour of ALS Awareness?
You would think I would have this all worked out by now. Or at least I did. After living with ALS for 6 years I thought I would have come to a place of "acceptance". Live my last days out of my head and into each moment. But that's not what happened.
Living with a "slow progressing" form of ALS, I am considered one of the lucky ones. I try my best to be grateful for what I do have, instead of resentful of what I can no longer do. When others see me they see a positive person, an ALS Ambassador with a great attitude, brave and strong. That is the side I let you see.
There is another side. One that lives in terror of what is to come. One who cannot bear to lose control. One who gets jealous of people dashing into the store, while she waits in the car. One who wishes she had at least 10 more years pre ALS without knowing what was coming. One who bears the burden of watching countless others with ALS die, when they were diagnosed after she was. One who is suffering. One who feels like a coward, and a fake because she doesn't let anyone see that side of her.
Anyone but her loving husband that is. He sees and knows all sides of her. He watches as his wife slowly loses all parts of herself. He is by her side as she cries in desperation, devastated that because she is living too long he will only remember his sick wife when she dies, and not the woman he married. So he doesn't talk about his suffering. He must be "strong" for her.
The week before Easter was a living hell for both Travis and I. It did not come on unexpectedly, things had been slowly slipping for months. While acknowledging that things were difficult, we thought we were doing the best we could, but no, we were both far from it. Within the same week, we both ended up in hospital.
The best way I can describe what happened, is that after living with ALS for 6 years, the weight became too heavy to bear, and we both broke.
People were shocked. Nobody knew, many imagined, but we put on a good front, until we could no longer hide what was happening behind closed doors. Depression. Both of us. But not together, we were suffering alongside each other, but ultimately alone.
We have figured out that we cannot only rely on each other. We needed help. We were drowning and pulling each other under instead of rescuing each other. We were each other's everything, but we could not be each other's everything.
I know I'm not alone. In Jenni Berebitsky's book "ALS Saved My Life...until it didn't" (reviewed in a previous blog post), she mentions though grateful for outliving her prognosis (2 years, she has lived with ALS for 9 years now) there are times when she thinks, "Can we speed this up? How much longer do I have to endure?".
Travis and I survived and were taught a lesson. We have accepted help. It is not fun. It is hard work. Recovery is a full time job. Both of us are now receiving care in many forms; friends, family and professionally.
We are rising up, being lifted by those whose job it is to help. It is not a passive process. We have to engage, participate and accept that we cannot bear this weight alone.
We know that we will be better for it. Instead of living in a depressive fog, we are committed to working through our pain and fear in order to embrace the rest of what our lives have to offer.
I had the good fortune to be contacted by Jenni Berebitsky's Publicist Lauren, asking if I would be willing to review her memoir "ALS Saved My Life...until it didn't" on my blog.
I felt a remarkable connection to Jenni as she was also diagnosed younger than most, studied art therapy, visited Italy as a "must do before I die" reaction to her diagnosis, has more than surpassed her prognosis, shares my passion for sunflowers, attends ALS walks every year with her supporters, and is also a strong advocate for furthering ALS research.
This book resonates with my journey of trying to find the balance between "showing up vs. giving up", while allowing the occasional pity party. I felt not so alone in the difficulty of learning to ask for and accept help, as well as how it feels to lose control. Jenni shares practical tips and tricks in managing ALS as well as how to address the emotional, mental and physical aspects of living with illness. There are chapters written by family members and friends, offering a perspective for others to navigate their roles of a loved one's terminal illness. Travis appreciated the one written by her husband, accepting the reality of needing to look after oneself in order to care for your partner. He especially enjoyed when Jenni's husband stated "she can be a real s*** sometimes", a little too close to home!
Jenni shares her secrets to living life to the fullest in the face of life-altering events in her debut book. With humour and vulnerability, Jenni offers practical resources and advice on what ALS patients and their families can expect as they embark on their own ALS journeys. She also offers guidance for how she manages to live with continuous hope and positivity.
Jenni's journey as an ALS warrior provides the secrets to living a full life after a terminal prognosis, and she details the good, the bad, and the ugly of her ALS journey with charming wit and honesty. Jenni's book serves as a hopeful guide to all readers for how to move forward in the face of life-altering events.
This year, Jenni is releasing the audiobook version of her memoir, and her documentary, "Grateful: The Jenni Berebitsky Story", is being released and screened in film festivals across North America.
The Living Loving Laughing Walkers are back at it!
We are excited to participate in the 2019 Ottawa Walk to End ALS on Saturday, June 8th.
We would love to have you join us, sponsor us or wish us a great day!
Your continued support means the world to not only my friends and family but our beloved ALS Community as a whole. Living with ALS can be frightful and lonely, but events like these lift our spirits and our hope.
After Carol was diagnosed with #ALS, she began sharing her journey on her personal blog.
It started as a personal journal and has turned into a resource for others living with ALS where people go to learn “helpful hints in managing ALS,” while also facilitating connection-building.
Thank you for your strength and dedication to bringing about #ALS awareness and for fostering a virtual ALS community. Your impact as an ALS Canada ambassador has been tremendous and we truly enjoy supporting your efforts.
Your ability to support others living with #ALS to feel inspired and understood during their journeys is a beautiful thing. #NVW2019
Learn how you can make a difference by getting involved: https://bit.ly/2VDpi8D
On March 19th, 2019 Finance Minister Bill Morneau tabled the Canadian federal budget.
Sadly, the promise of Motion 105 was again NOT KEPT. Exactly $0 was allocated towards ALS. When M-105 was passed unanimously in 2017 I was eager for the 2018 federal budget. I was shocked and appalled when there were no targeted funds for ALS research, I mean, they promised (yes, I know how naive that sounds). My spirits were lifted after attending a few ALS caucus meetings in parliament, yes there are ministers that do seem to care.
My friend Eddy & I thought we could not stand by and let them do this to us again so we developed the MP letter writing campaign in which over 2300 of you sent letters to our government. Also, despite M-105 stating that our government would "develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity", they did not, so ALS Canada did with CAPTURE ALS. We did everything in our power to encourage our government to keep their promise and they disappointed.
I can't say that I was surprised, but I did have a smidgeon of hope. Instead I was left dejected and feeling like a failure. It is hard enough to keep going with this unfathomable disease, and false hope from politicians who pretend to care feels like another weight I cannot bear.
To hell with them. As Winston Churchill said, "Never, never, never give up". My dad survived the Battle of Britain, so he is living proof! We are going to find a way to do this ourselves.
My dad serves as a great example as he approached his bank and because of that CIBC will be sponsoring this years Ottawa Walk to End ALS. As the GM Anthony stated, "because of Mr. Sharman’s passion for this cause and his ability to connect us with the right people in your organization that CIBC will be moving forward with a sponsorship for the local Ottawa Walk".
The federal budget did include an investment in the Brain Canada Foundation, which has the ability to allocate funds towards CAPTURE ALS, though there are no guarantees. ALS Canada has had a partnership with them in the past so perhaps reaching out to them will promote ALS research.
Other fundraising opportunities include Bloomex Florist, Orangetheory Fitness, Smart & Biggar's Trivia Night and of course the upcoming walk season!
To end on a heartwarming, tear inducing note, my beautiful cousin Chelsea and her fiancé Eric, are also donating to ALS Canada as part of their wedding!
We are so very pleased to welcome another new corporate sponsor to the #2k19 #OttawaWalkToEndALS : CIBC Ottawa!
CIBC believes in offering banking that fits your life, and it is their business to help clients, employees and shareholders achieve what is important to them. CIBC's ability to create value for all CIBC stakeholders is driven by a business culture that is based on common values of trust, teamwork and accountability.
To find out more about the different services offered by CIBC, visit: https://www.cibc.com/en/personal-banking.html or stop in to the local CIBC branch nearest you.
Please help me extend a big THANK YOU to CIBC Ottawa for their sponsorship and support!! #WalkToEndALS #ottcity #myottawa#sponsorship #communitypartner
We’re excited to announce that online florist Bloomex Canada has partnered with ALS Canada for their “Get and Give” campaign this year. When you sign up with Bloomex Canada using our special partner account, you’ll automatically get 15% off your purchases until the end of 2019. There’s more! Whether you’re buying flowers, gifts, gift baskets, or balloon bouquets, Bloomex Canada will then give 10% of your purchase to ALS Canada as a donation.
Read about this new partnership in a press release published by Bloomex Canada: https://bit.ly/2Cw1lIZ
It’s time to break a sweat with Augie’s Quest!
For a second year, members of Orangetheory Fitness studios from across Canada are sweating it out for ALS research during their national fundraising campaign. Augie’s Quest is taking place at your local Orangetheory Fitness studio between May 1 and 15. Members are challenged to push harder during their workouts to raise money in support of the ALS Canada Research Program - funding high-quality research with the most promise to slow down or even stop ALS.
In 2018, the ALS Canada Research Program was honoured to receive $250,000 from Orangetheory Fitness and this year, they have upped the ante and are aiming to raise an incredible $400,000!
For information on an Orangetheory Fitness studio near you, visit their website and get involved this year: https://bit.ly/2FRE1HT
In support of ALS Canada, and in gearing up for the Kichesippi Beer Workplace Runoff, #SmartandBiggar is hosting their 2nd annual Trivia Night at the Lieutenant's Pump on Elgin Street. Thursday, April 18, 2019 starting at 7:00pm.
Registration is now open at $10/person. To register as an individual participant or as a team (maximum 4 people), please contact Alexandra Wray via email at ARWray@smart-biggar.ca
Looking forward to Smart & Biggar's Trivia night with donations going to ALS Canada at the Lieutenant's Pump in Ottawa on April 18th.
Will you join us for some competition? If there are any questions on 80's bands, I will kill it!
Are you the 'trivia buff' in your group? If so - and even if not but you love good game night - this is an event you don't want to miss!!
In support of ALS Canada, and in gearing up for the Kichesippi Beer Workplace Runoff, #SmartandBiggar is hosting their 2nd annual Trivia Night at the Lieutenant's Pump on Elgin Street. Thursday, April 18, 2019 starting at 7:00pm.
Registration is now open at $10/person. To register as an individual participant or as a team (maximum 4 people), please contact Alexandra Wray via email at ARWray@smart-biggar.ca
Hope to see you all there!
#trivianight #fundraiser #runsmartgivebiggar #myottawa #ottcity#aFutureWithoutALS
The realities of living with ALS – a challenging and terminal disease – led Carol Skinner and Eddy Lefrançois, two Canadians affected by ALS, to start a letter-writing campaign. The campaign encouraged fellow Canadians to contact their elected federal representative to ask for sustainable and direct ALS research funding. Over 2,300 Canadians joined Carol and Eddy in this initiative, yet sadly, Eddy died in January 2019 before he could see the results of his initiative.
To support the efforts put forward by our community, we have sent a letter to Health Minister Ginette Petitpas Taylor explaining why the federal government must play a role in supporting ALS research. The letter outlines federal investment in ALS research to date, along with an analysis based on our own fact-checking, to illustrate the ongoing need for sustainable and direct ALS research investment.
I found this to be a thought provoking article in the New York Times sharing the perspective of a wheelchair user.
HOW CAN YOU HELP?
If you are ever at a cocktail party with someone in a wheelchair, find some chairs to place around them so people can sit and chat. I can't tell you how much it hurts my neck to look up at people!
It seems obvious, but hold doors open (and if you have a friend, two doors open are easier to navigate through over one door).
Don't look at your phone while walking. People often walk right into me because I have no height! Especially in crowds.
If you have children, make sure they don't run into our chair, kids often aren't paying attention and when running around don't look and I don't want to crush little feet!
Don't be afraid to offer help, I'm often too shy to ask, but if you see me struggling, I am so grateful to accept your offer!
If you own or attend a business with one or two steps out front (or don't own it but frequent the establishment and want to point it out to management), there are inexpensive portable wheelchair ramps that can be brought out when needed.
Just a few ideas off the cuff, please send me your ideas or questions!
A big thank you to everyone who took part in the recent online MP letter-writing initiative. Over 2,375 Canadians sent emails to ask the federal government for dedicated ALS research funding. Many of you also sent personalized good old-fashioned letters which are also much appreciated!
Together we are stronger.
Now let's see if they honour their promise of Motion-105 in the upcoming Federal Budget!
Let ALS stand for ALL LIVES SAVED!!!
I'm proud to call Eddy K "Let's Roll" Lefrançois my friend.
After living over 26, yes you heard that right, 26 years with ALS, Eddy passed away yesterday from ALS after having complications with pneumonia.
Eddy was diagnosed at 21 years old. He was a formidable figure in the ALS world, tirelessly advocating for people like me. He was an ALS Canada Ambassador and an inspiration.
I first heard of Eddy upon my own diagnosis. My neurologist told me that he knew someone living with ALS for 19 years, I suppose to instill hope, however, that thought terrified me. How could anyone possibly want to live with this horribleness for that long?
And then I met Eddy.
I was fortunate to meet Eddy in person at the 2016 ALS Research Forum. Admittedly starstruck, I whispered to Travis, "Look that's Eddy!". You see to me, he was a superhero. Through social media, the ALS community and his own personal "Let's Roll" website, I knew of Eddy. Quite frankly, you could not be a part of the ALS community and not know Eddy. Gathering the courage to introduce myself, I expressed my thanks for all he does and confessed that he was a celebrity to me. Eddy said he felt the same way about me, what that did for my ego! Friendship ensued and we stayed in touch. He made me feel special. That was who he was. Eddy has tons of friends, those he has met in person and those he has not. He made everyone feel like they had a special relationship with him. With his cheeky sense of humour and light up a room smile, you could not possibly know Eddy and not be enamoured with him. Who of us could do the same while being paralyzed and unable to speak?
It takes more than a person. It takes a superhero.
Eddy never gave up on advocacy, 26 years of it! I can tell you that after 5 years of it I am exhausted and almost every day I feel like giving up. Not Eddy, he lifted me up, not just through social media but by personal texts and emails, and like I said, I'm not the only one. He gave us personal encouragement which translated to comfort, strength and perseverance.
I am proud to have Eddy as my partner on our MP letter-writing campaign. It began through a series of texts where we expressed our frustration at the lack of government funding. We thought, "how can people not be outraged" and "why doesn't our government care?". Eddy & I wanted to do something to hold our politicians accountable to their unanimous approval and passing of Motion-105, not just moan about it (be a doer not a talker as my father always says). Through collaboration (it takes a village), we were stoked when the number of emails sent exceeded 1000. Of course, immediately Eddy set the next goal at 1500. Let's help him reach, nay, surpass it. We have just under a week left before we close the campaign to ask our MP's to follow through on Motion-105 and put Capture-ALS in the next Federal Budget.
Please share the following link with your community:
Email your Member of Parliament Help Create a Future without ALS
Special hugs and condolences to your family Eddy. Their dedication to not just supporting you, but to all of us fighting ALS goes beyond what words can express.
I truly don't know how to continue the fight without you leading the way. I don't know if I can do this. However, in order to honour you, make you proud, and do my best in some tiny way to continue your legacy, I have to at least try.
Eddy, I will miss you my friend, you were one of a kind.
Thank you so much to all who have participated in our letter-writing campaign of holding our politicians accountable to their unanimous promise of Motion-105. Many of you have signed and sent the email link to your Member of Parliament and many of you have sent personalized letters.
Though our MP's are currently away on Christmas vacation, we are continuing our campaign as we thought it might be a good idea to have emails and letters waiting on their desks for the New Year so that research funding for ALS is on their minds! We will continue the campaign until mid-January, as the draft Federal Budget for 2019 will most likely be released in February, before finalization in March.
Many people use the holiday season as a time for giving back. If you would be so kind as to share the email link als.good.do/captureals/emailyourMP/ with your friends and family, it would provide hope and a smile to every Canadian suffering with ALS. Perhaps I could be so bold as to ask those of you willing to make a difference, to email the link to your contacts. This is a way people can be charitable this holiday season that costs nothing!
My friend Eddy describes our ask beautifully:
Capture ALS is a project that is capable of saving THOUSANDS of Canadians that are DYING from ALS through mapping the Genome of every Canadian Living with ALS. By doing so researchers and doctors will be able to develop new medicines and treatments to cure ALS. Please show your support to those who suffer from ALS by clicking the link als.good.do/captureals/emailyourMP/ which will allow you to email your Member of Parliament to inform them how important a cure for ALS is.
I try to think of ways to increase awareness for ALS. This initiative may have been thought of by others, but I thought I would give it a whirl! See the response from Canada Post below. It may not work, but I appreciate the personalized reply. Especially as Canada Post is not in everyone's good books right now!
Chairperson of the Stamp Advisory Committee
CANADA POST CORPORATION
2701 RIVERSIDE DRIVE SUITE N1070
OTTAWA ON K1A 0B1
November 9, 2018
My name is Carol Skinner, and I was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease) at the age of 41. I would like to introduce ALS as a suggestion for a stamp subject.
ALS is a motor neuron disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body. 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. There are 3,000 Canadians living with ALS, as one dies, another is diagnosed. There is no cure for people living with ALS and most will die within two to five years of being diagnosed.
People living with ALS face a difficult journey. It is with strength and courage that people with ALS battle this devastating disease. It is with strength and courage that family and friends of people living with ALS persevere and support their loved ones. It is this strength and courage that allows people affected by ALS to maintain hope.
It is for this reason I think ALS should be considered as a Canada Post stamp subject. This will help increase awareness and advocacy for such a devastating disease. We should use platforms such as these to provide hope to Canadians suffering from ALS.
Its importance in the Canadian context:
Liberal Member of Parliament Mauril Bélanger died of ALS at the age of 61. He was a champion of the people who fought for language rights and women’s equality. On January 27, 2016, Belanger made history when he became the first MP in the House of Commons to use an electronic voice, re-introducing his private member’s bill on gender-neutral lyrics for O Canada. The bill passed in 2018.
Any significant anniversaries or upcoming events:
June is ALS Awareness month in Canada and every summer Walks for ALS are organized across the country. The Ottawa walk for ALS occurs every June. The WALK for ALS is the largest volunteer led fundraiser for ALS across the country. The WALK for ALS is about local communities coming together to raise funds and celebrate hope for a future without ALS. Funds received support Canadians living with ALS and invest in research to make ALS a treatable, not terminal disease.
Ideas for artwork:
The Blue Cornflower is the international flower of hope for ALS.
Thank you for your consideration of my stamp proposal. I am aware that it may take up to two years for this to happen, but I would kindly ask if there is any way to expedite this process in my special circumstances as I would love to be alive to see this idea come to fruition!
Please feel free to contact me with any questions.
When it comes to ALS fundraising, I have been struggling with an elephant in the room: am I asking for too much, too often?
As an ALS Society of Canada Ambassador, I appreciate the importance of advocacy and fundraising efforts. You're already aware of the devastation of the impact of an ALS diagnosis on an individual and his/her family. And yet, I often feel awkward, embarrassed and shy about participating in fundraising initiatives. How can I continually ask year after year, event after event, my circle of people to donate again and again? You have supported before so I don't want to impose.
I have heard this from family members as well who feel they have already asked too much of their friends. Even though it could be that I am simply living too long and most with ALS do not have the chance to ask as many times as I do, the opportunity to raise awareness - not just funds - is too much to resist. I have surpassed the initial "best before" date given to me by my neurologist so how could I possibly stop now! When thanking Robin after the 5th Curling for Carol Bonspiel, I even joked that when she first said it would be an annual event, no one expected me to live this long. As you know, the work involved in organizing a fundraiser like that takes phenomenal time and effort. Every year that she pulls it off is a bonus, not an expectation.
And yes, I know, these awkward feelings are probably exacerbated because I am a polite Canadian and don't want to be rude by asking anyone for anything.
Another conundrum is when I can't physically be present at fundraising events. For example, I had intended to attend the Ottawa Hike for ALS this past fall; however, I was not well enough to be participate. After having fundraised for the event, I carried such guilt as I felt like I had broken a promise.
Hence the elephant in the room.
When Heather shared the following email with me, I was reassured. That she experienced a similar feeling inspired this blog post.
Subject: Tradition continues👑
Hello again -
Although this year’s ALS Walk overlapped the time that we spent with Carol celebrating her birthday, I had still originally planned to continue to fundraise for the sixth year in a row.
I then waffled and didn’t send the link out because it felt strange to ask for support without participating this year. When I made my “self-donation” this morning though, it got me thinking.
After this last visit, I now realize that EVERY walk I make is one that Carol cannot; that the visibility and fundraising must continue - with no treatment and no cure, there’s no time to spare.
So, if you’re so inclined, would you help with a donation? If so, please click on the donate link below and complete the form. I promise I will make up the miles and then some.
The community needs these funds to support local people living with ALS through support groups, equipment lending, and transportation. Your donation also goes to support research projects around the world. Having seen what Carol needs, is able to borrow, and use underscores this is a very meaningful way.
To support now, link here. Thank you.
And yes, my new goal is awareness every day, not just walk day...
With my gratitude,
PS - And oh yes: we wore our “walk crowns” at her birthday party.
PPS - For those who have given your time and support past Octobers, I’m smiling thinking of you and looking forward to next year already 👑🥂❤️🍂🐕
Beautifully put Heather!
Regardless of how many times I have asked before, or my fear of coming across as impolite, I will continue to fundraise for those who have not had the luxury of living past one or two years of diagnosis. I will be their voice and know that you are all adults and can decide to donate/not donate, fundraise/not fundraise, advocate/not advocate. I promise to not be offended if you are unable to participate when asked, if you promise to not be mad at me for asking again (and again, and again...).
Thank you to my incredible, kind and thoughtful cousin Chelsea!
As part of this year’s ESDCCC (Employment and Social Development Canada Charitable Campaign) we have been encouraged to tell stories about why we give, so I thought I’d share mine.
This is a photo of my cousin Carol and I in Byward Market when I was visiting from Vancouver in the summer of 2013. It was taken just months before Carol was diagnosed with ALS, Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s Disease) – a motor neuron disease that 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, people with ALS lose the ability to walk, talk, eat, swallow, and eventually breathe.
Carol was diagnosed on September 19, 2013 – she was given anywhere from two to five years to live, with a disease for which there is no cure. You may not hear much about ALS, and one of the reasons is because for every person that is diagnosed in a year, a person previously diagnosed dies. As a result, there is never a large group of people living with the disease in Canada – and far too many people dying from it.
Carol describes September 19, 2013 as the day she was handed a death sentence. One, I’m grateful to be able to say, that she is still outliving. On September 19 of this year, less than a month ago, Carol made it to 5 years living with ALS. She’s one of the lucky ones. Others are not so lucky - as you may be aware, long-time Member of Parliament Mauril Belanger was diagnosed shortly after the 2015 election, and died only a few months later.
One of the many reasons I decided to move to the NCR was to be able to spend more time with Carol, who is such a wonderful person – so vibrant, positive, and full of life despite the circumstances. To see her battle this deadly disease on a daily basis…well, donating to the ALS Society for the 2019 ESDCCC is one meaningful thing I can do to help Carol and others facing a similar fate.
I was really happy to see that the ALS Society is one of the 16 Health Partner organizations in the campaign. It’s also great to know that the admin costs of donating are low, because I know after the Ice Bucket Challenge the ALS Society has been trying to come up with a low-cost awareness campaign. And though I was given the option to keep my donation anonymous, I chose to let the ALS Society know that I was donating, because I’m proud of my cousin and all of the work she is doing to raise ALS awareness.
Carol works incredibly hard despite her body slowly shutting down on her. She is an active spokesperson for the ALS Society of Canada, and has been involved in many ALS Awareness events like the flag raising at Ottawa City Hall for ALS Awareness Month in June, being the Lead Walker for the ALS Walk two of the past four years, and a spokesperson for the ALS Society at the House of Commons ALS Caucus.
If you want to get to know more about my cousin Carol and her life with ALS, please feel free to visit her website, where she has been documenting her journey:https://www.livelovelaughwithcarol.com/
Carol is why #iGive, and for me she is the reason the ESDCCC is so important. I encourage each of you to think about the issues that matter to you, and to donate to those causes during this year’s campaign.
Thanks for your time,
Call for Help!
Will you help me make a difference on behalf of all Canadians living with ALS?
I have initiated a letter-writing campaign to hold our government accountable to their promise of supporting national efforts to find a cure for ALS at the earliest opportunity! Meaning, we want to see direct and targeted funding towards research for ALS on the 2019 Federal Budget.
We have made it easy for you to participate by clicking on the link below, in which you will find our e-advocacy website where you can email your MP directly. I am also asking that you send a good old fashioned letter by mail (postage is free!). We have created a generic letter that is easy for anyone to send out. Feel free to personalize, I did and have included my personalized version below. After I sent it, I actually met with my MP who promised to support us.
Many thanks to Dad for writing the initial draft of the letter with the help of Mom and Chelsea.
Thanks to Eddy "Let's Roll" for inspiring me to do more, for his french translations, and his unstoppable advocacy.
Thanks to Bill for his petition e-1451, which the government responded to by stating they have given some money in the past, and basically answered with spin and of course no real answer. Although it may not be a "win" I see it as a stepping stone and continued pressure that they cannot ignore if we keep asking!
Thanks to ALS Canada for their efforts and collaboration in helping us initiate this campaign and supporting us in making our voices as loud as possible.
And thanks to you, for making a real difference to people who are suffering.
Generic MP Letter
<Insert name of your MP>
Member of Parliament for <Insert your riding>
House of Commons
October 11, 2018
Dear Minister<Insert MP name>,
I am writing as one of your constituents to express my concerns for Canadians living with ALS.
ALS is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body. As the muscles break down, a person living with ALS will lose the ability to walk, talk, eat, swallow and breathe. It is a DEATH SENTENCE. There is no cure and most die within 2 to 5 years of being diagnosed.
ALS is more common than you might think; it has a high incidence/low prevalence rate. The incidence of ALS has an estimated lifetime risk of 1 in 400. The reason there are 3,000 Canadians living with ALS is because of its devastation and how quickly it kills.
The federal government has a duty to protect the lives of Canadians. Whenever there is an event that kills Canadians, the government does whatever it can to prevent this from happening again. Where is the same resolve in treating the killer ALS?
On April 5, 2017 Motion-105 was passed UNANIMOUSLY by our Members of Parliament:
That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House:
(a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and
(b) call upon the government to play a leadership role in supporting ALS research, and to support national efforts to find a cure for ALS at the earliest opportunity.
The ALS community has never been as hopeful as with the passing of this motion. That changed when the 2018 budget presented ZERO targeted dollars towards ALS research. Over a year and a half later, we are left waiting and left dying. Where is the action supporting M-105? Where is the government leadership role?
The ALS Society of Canada has authored a strategy, which answers this motion. It’s recommendation is that the Government of Canada invest $35 million over the next 5 years in CAPTURE-ALS, a groundbreaking, inter-disciplinary, foundational project that will build capacity for research internationally and across Canada.
Will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?
ALS is not an incurable disease it is simply grossly underfunded.
Let ALS stand for ALL LIVES SAVED!
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French MP Letter
10 octobre, 2018
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Député.e de <Insérez votre circonscription>
Chambre des communes
Monsieur / Madame le / la <Insérer le nom de votre député.e>,
Je vous écris en tant qu'un de vos électeurs pour exprimer mes préoccupations pour les Canadiens vivant avec la SLA.
La SLA est une maladie qui paralyse progressivement les personnes car le cerveau n'est plus capable de communiquer avec les muscles du corps. À mesure que les muscles tombent en panne, une personne atteinte de la SLA perdra la capacité de marcher, de parler, de manger, d’avaler et de respirer. C'est une CONDAMNATION À MORT. Il n'y a pas de remède et la plupart meurent dans les 2 à 5 ans suivant le diagnostic.
La SLA est plus courante que vous ne le pensez, elle a un taux d'incidence haut / de prévalence faible. L'incidence de la SLA a un risque à vie estimé à 1 sur 400 (NIH US). La raison pour laquelle 3 000 Canadiens vivent avec la SLA est due à ses ravages et à sa rapidité de destruction.
Le gouvernement fédéral a le devoir de protéger la vie des Canadiens. Chaque fois qu'il y a un incident qui tue des Canadiens, le gouvernement fait tout ce qui est en son pouvoir pour empêcher que cela se reproduise. Où est la même résolution dans le traitement de la SLA mortelle?
Le 5 avril 2017, la motion 105 a été adoptée À L'UNANIMITÉ par nos députés:
Que, compte tenu du décès de plus de 1 000 Canadiens chaque année, y compris la perte tragique de l'honorable Mauril Bélanger, ancien député d'Ottawa — Vanier le 16 août 2016, à la suite de la sclérose latérale amyotrophique (SLA):
(a) réitérer son désir et son engagement, en collaboration avec les intervenants provinciaux et territoriaux, de lutter contre la SLA par la recherche et la sensibilisation; et
(b) demander au gouvernement de jouer un rôle de premier plan dans le soutien à la recherche sur la SLA et de soutenir les efforts nationaux visant à trouver un remède à la SLA dès que possible.
La communauté SLA n'a jamais été aussi optimiste qu'avec l'adoption de cette motion. Tout cela a changé lorsque le budget de 2018 a présenté ZÉRO pour la recherche sur la SLA. Plus d'un an et demi plus tard, nous sommes en attente. Où est l'action à l'appui de M-105? Quelle est la stratégie globale ?
La Société canadienne de la SLA a rédigé une stratégie qui répond à cette motion. Elle a recommandé que le gouvernement du Canada investisse 35 millions de dollars au cours des cinq prochaines années dans CAPTURE-ALS, un projet fondamental, interdisciplinaire et fondamental qui renforcera les capacités de recherche à l’échelle internationale et à l’échelle du Canada.
Soutiendrez-vous la demande de la Société canadienne de la SLA concernant le financement fédéral ciblé à la recherche sur la SLA dans le budget fédéral de 2019?
La SLA n'est pas une maladie incurable, elle est simplement sous-financée.
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Personalized Letter to my MP
Member of Parliament for Kanata-Carleton
House of Commons
K1A 0A6 September 4, 2018
Dear Minister McCrimmon,
I am writing as one of your constituents to express my concerns as someone living with ALS, and to ask for your help.
I was diagnosed with ALS on September 19, 2013 at the age of 41.
At the time, I was working for the Canadian Mental Health Association. I was an art therapist facilitating groups for individuals living with both mental health and substance use disorders.
ALS stole my career, my home, my future, my sense of adventure and my control. ALS is a serial killer that has a hold of me and there is no treatment. It is slowly stealing my physical abilities, bit by bit, day by day, until I become paralyzed in my own body, as my mind remains fully aware of what is happening to me. Even then, it isn’t satisfied, it will keep attacking my body, and will take everything from me, including my last breath.
ALS has yet to steal my voice, and that is why I am here today, to advocate on behalf of all Canadians. For those we have lost, including Mauril Belanger and Brian Parsons, for those who are living with, and those who will be diagnosed with this devastating disease.
ALS is more common than you might think. The incidence of sporadic ALS shows little variation in the western countries with an estimated lifetime risk of 1 in 400. (US NIH)
The reason there is a relatively small number of Canadians diagnosed with ALS at a time, is because of its devastation and how quickly it kills.
The federal government has a duty to protect the lives of Canadians. Whenever there is an event that kills Canadians, the government does whatever it can do to prevent this from happening again. Where is the same resolve in treating the killer ALS?
On April 5, 2017 Motion 105 was passed unanimously by our Members of Parliament:
That, in light of the death of over 1000 Canadians each year, as a consequence of ALS, the house a) reiterate it’s desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop an launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.
The ALS community has never been as hopeful as with the passing of this motion. That all changed when the 2018 budget presented ZERO targeted dollars towards ALS research. Over a year and a half later, we are left waiting and left dying. Where is the action supporting M-105? What is the comprehensive strategy?
Minister McCrimmon, will you support the ALS Society of Canada’s ask of targeted federal funding towards ALS Research in the 2019 Federal Budget?
Will you be a champion of our cause through advocacy by supporting the Federal All-Party ALS Caucus and increase awareness by attending events supporting ALS such as the Annual Walk to Defeat ALS and Annual Hike for ALS?
Should you require further information, please do not hesitate to contact me.
So proud to be a Kappa for 25 years! Thank you to KKG Toronto Alum for featuring my story in their newsletter.
ALS Society of Canada https://www.als.ca/get-involved/volunteer/ambassadors/
Ottawa Hike for ALS on September 29th, this is the link
The Enduring Bonds of Sisterhood
I was diagnosed with amyotrophic lateral sclerosis (ALS) on September 19, 2013, at 41 years old.
The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. It is an unwanted anniversary, a marker of shock and fear, a countdown of the years, months, days, minutes that we have left.
I woke up that day without a clue as to how my life would change. I went through the dreaded needle in the muscle test and the neurologist kept saying, "I'm afraid to say this is quite serious". My husband Travis and I were trying to focus on what the doc was telling us…no tumours...no blockages...sound back...sound brain...nerves going to muscles...motor nerves not affecting sensation...degenerative condition...motor neuron disease...Lou Gehrig's disease…no known reason….ALS...progressive...no treatment…no cure... shortened life...2-3 years…
I must admit, before that day, my awareness of ALS was limited, so of course, we did what the doctor told us not to do after that appointment, we went home and Googled ALS. At that moment, our spirits were crushed.
Of course, this is a devastating tragedy for my family and myself. We had to sell our home to move into an accessible rental. I am losing my body, in a way that is terrifying as day by day there are activities of daily living that I can no longer accomplish on my own. I have lost my career as an art therapist facilitating groups for individuals with mental health and substance use disorders. I am losing control (which is particularly difficult for someone who is known to have control issues!), and we have lost our future dreams. ALS is an illness that is at the forefront of our thoughts 100% of the time.
In 2015 as well as 2017, I was asked to be the lead walker for the Ottawa Walk for ALS. My Kappa Sisters throughout Canada and the US (even China!) rallied to help me raise funds for ALS and although I haven’t seen many of them since University they helped me to acquire over $17,000 for the ALS Society of Canada. My best friend, maid of honor and Kappa sister Heather Smith Nuñez attends the Hudson Valley Walk to Defeat ALS every year, travels to attend ALS fundraisers with me in Canada, and has been a champion on my behalf. Annemarie Brissenden, an active Kappa alumnae travels to attend ALS walks with me as often as she can. The bonds of sisterhood are impenetrable. Delta Delta chapter at McGill University has fundraised for ALS on my behalf, hosting a “Keep Calm and Kick ALS” dinner as well as a dance-a-thon, raising over $2000 for ALS as well as much needed awareness. Without even having met me.
I would like to personally thank all of my Kappa sisters for supporting me by participating in fundraisers to help defeat ALS. I am so proud to be a Kappa and value the power of sisterhood. Kappa lifts me up and gives me hope, where I once had none.
I feel so privileged to be an advocate on behalf of ALS Canada. Due to my illness, I was forced to quit my job immediately upon diagnosis. At that time I was trying to focus on my family, and myself, though something felt missing. It was extremely difficult to leave behind a job that brought so many fulfillments to my life. I was proud of the work I did in giving back to others, and being an advocate for ALS has replaced for me what I have lost in my career. It brings back purpose and meaning to my life. Through advocacy, I found a way back to myself and who I am as a person. Please visit my blog at www.livelovelaughwithcarol.com
In the past five years of living with ALS, my husband and I have come to realize that we are blessed. Our friends and family surround us with love, we have made it a priority to travel while I still am able, and we have been trying to seize the opportunity to make moments matter by appreciating what is really important in life. I have had a chance to reflect on my life and be proud of my accomplishments of giving back and making a difference in this precious world.
-Carol Sharman Skinner
Delta Delta Chapter
Meet Jordana Easterbrook!
Jordana is the Beta Psi Chapter Adviser, Advisory Board President and an ex-Officio member of the Beta Psi House Board. She has been working with the chapter since 2013 when she graduated from Delta Delta chapter (McGill University). The Advisory Board currently consists of 12 wonderful advisers dedicated to supporting and guiding the chapter and Jordana is very proud to have the opportunity to serve as their president. As the Chapter Adviser, Jordana works closely with the active women to support them in navigating Fraternity requirements and resources, in addition to serving as a helpful voice for chapter decision-making. Her favourite part of working with the chapter is having the opportunity to mentor young women, during and after their university experience, and she especially enjoys the friendships she has built with these amazing women.
In her personal life, Jordana works in marketing for Deloitte Canada. She is the (mostly) proud owner of two wiener dogs and lives with her husband in the Beaches area of Toronto. She looks forward to many more years of Kappa volunteering and is always happy to chat if anyone is interested in learning more about becoming a volunteer!
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LIFE by Charlotte Bronte
LIFE, believe, is not a dream
So dark as sages say;
Oft a little morning rain
Foretells a pleasant day.
Sometimes there are clouds of gloom,
But these are transient all;
If the shower will make the roses bloom,
O why lament its fall ?
Life's sunny hours flit by,
Enjoy them as they fly !
What though Death at times steps in
And calls our Best away ?
What though sorrow seems to win,
O'er hope, a heavy sway ?
Yet hope again elastic springs,
Unconquered, though she fell;
Still buoyant are her golden wings,
Still strong to bear us well.
The day of trial bear,
For gloriously, victoriously,
Can courage quell despair !
So here I am, exactly 5 years to the day of my ALS diagnosis. Always a difficult day, but this one is particularly hard. The doctors told me I wouldn't wake up tomorrow. 2-5 years left to live is what I was told. I know I should be celebrating that I beat the odds, but to be honest I just feel sad. I'll never forget that day, and every day since ALS has been in my thoughts 100% of the time. I just can't let it go. Don't get me wrong, I am so grateful to have had the time to live out many of my dreams and am happy to still enjoy making moments matter with friends and family. As you can imagine, living with ALS is overwhelming, and often becomes too much. Travis and I do our best to live life as best we can, but behind the scenes we are both devastated. I haven't given up, in fact I am about to launch a letter-writing campaign to our Government to hold them accountable for M-105. Stay tuned, I will need your help! For today, though, I wanted to be real and I promise to try to be gentle with myself. If you want to help, cat videos are a surefire way to make me smile.
LIVING LOVING LAUGHING HIKERS
Travis & I are VERY excited to announce that Ottawa is hosting its first ever, Inaugural Ottawa Hike for ALS and Family Day. The hike will be held on Saturday, September 29th at Mer Bleue Conservation Area on Ridge Road in Ottawa. On our 9 Year Wedding Anniversary!
Mer Bleue is the largest bog and natural area in Canada’s Capital Region and the second-largest bog in southern Ontario.
Participants at the Ottawa Hike for ALS will be able to choose from hiking the Mer Bleue Boardwalk which is a 1.2 km universally accessible boardwalk or hiking a 2.5 km trail or taking part in a trail run of 7 km’s. There is something for everyone.
The hike will also include fall-themed refreshments, a raffle of nature or Canadian made products and a scavenger hunt for the children.
Registration begins at 9:00 a.m. at parking lot 22 and the hike starts at 10:00 a.m.
I have attached to this blog an article on the Direct Funding program that allows me to hire an attendant to help me with daily care. My good friend Eddy "Let's Roll" Lefrançois is quoted in the article.
Without this program, I don't know what we would do. Travis would have to stay home to care for me, which would mean giving up his career, his ambition, his escape from all things ALS and of course his pay check. Without his pay, we would not be able to afford rent. Also, I can stay home, hopefully forever, without needing to go to a long term care facility, which, at my age, is not something I can even consider. Besides, no one is keeping my kitties from me!
The application procedure can feel overwhelming, there were many times I almost gave up, and the wait list can be daunting. Some people living with ALS may feel it's not worth it as they may not live long enough to use it. I would encourage you to look into it anyway, as there is help throughout the process. My ALS regional manager come over to help me with the application, and a staff member from the Ottawa Independent Living Centre (OILC) also came to my home to help me prep for the interview. I am always happy to be a resource for people as well. Once you have the program up and running, they provide funds to hire a bookkeeper, who assembles the pay checks and helps prepare quarterly reports.
My only pet peeve is that being a government program it feels like they are stuck in the 90's with paperwork as they make you write cheques for everything and will not allow direct deposit. Silly, as in my mind that would be an easier way to track funds and I am losing my handwriting ability. Go to Staples and purchase a signature stamp while you can!
It can be difficult to accept help, and have people in your personal space. You may think you are able to get by now, but day by day ALS steals our abilities. Once I made it through the application and interview process and was accepted into the program, it has made such a positive impact on our lives.
What has made the difference for me with my stubborn, independent, like doing things my own way personality in embracing this program, is reframing it from having an "attendant" or "personal care worker" to having my own personal assistant! Makes me feel like a CEO instead of a person with a disability!
I have been so fortunate with my personal assistant, she does it all; washes my hair (hair dresser), gets me dressed (stylist), helps with muscle circulation (masseuse), takes me to appointments (driver), dissects Handmaid's Tale with me (therapist), and so much more, she even brings me chai lattes!
Direct Funding means freedom for many people with disabilities. Is it accessible enough?
Date: August 2, 2018
Author: Dafna Izenberg, Francine Buchanan & Claude Lurette
When Lisa Crigger advertises for staff on Kijiji, she’s mainly looking for people who can follow direction. Crigger has cerebral palsy and uses a wheelchair; she needs assistance with bathing, housekeeping, and child care. When her first child was born nearly eight years ago, she initially relied on attendant services from a Toronto-area agency, which she found frustrating. “The agency would tell you when the staff were available,” she says. “I don’t like to be told I have to be home by 7 or my kid is not going to have a bath.”
Things improved in 2013, when Crigger became a self-manager with Ontario’s Direct Funding program, which allows adults with physical disabilities to employ their own attendants. That means recruiting, hiring, and sometimes even firing people. “My staff will tell you I was pretty scary when they first came to meet me,” she says. “I didn’t want them to think they could mess around with me and not show up for work.” But Crigger is confident her staff would also describe her as a good boss; two of them have worked for her from the time she entered the program. “They just need to understand that [things need to be done] my way, and this is the way it’s going to be. Because it’s my house, and my children.”
For some people with disabilities, Direct Funding is a highly desirable alternative to government-funded home care, a system in which the number of hours and type of service a person receives is determined by case managers at the local health integration network, and the provision and scheduling of services is handled by private or not-for-profit nursing agencies which employ nurses and personal support workers. For other people, DF can be the difference between full-time inpatient care and being able to live at home. The program has served about 1,600 people since it started more than 20 years ago. In the mid-1990s, it had a roster of about 100 participants and an annual budget of about $4.4 million; in 1998, its budget was increased to $18.7 million, and the program grew to include about 700 people. In the past three years, DF has received an additional $5 million per year from the Ministry of Health and Long Term Care, so that it presently serves almost 1,000 people on a budget of $45 million a year. Here’s a look at how it works and whether its reach is wide enough.
Who is eligible for Direct Funding?
Rooted in the independent living philosophy, Direct Funding operates on the premise that “consumers are the experts in their own disability,” says Leanne Larmondin, the program’s provincial coordinator at the Centre for Independent Living in Toronto (CILT). To be eligible, a person must be at least 16 years old, reside in Ontario, and hold a valid OHIP card. They must need physical assistance with essential daily activities such as eating, dressing and using the washroom as the result of a permanent physical disability. Participants must demonstrate an ability to direct and manage their own care—identify exactly what they need, train staff to provide it, and manage all aspects of the employment of their staff. There is no means test; people can qualify regardless of their income or other financial resources.
When applying for DF, potential participants must provide a very detailed proposed schedule and budget—how much of an attendant’s time, down to the quarter-hour, they need each morning, evening and bedtime. Their budget will depend on the kind of care they need at different times of day. For direct, hands-on service, DF provides between $16.50–$19 an hour; if a participant needs someone to just be on hand in the afternoon, they can budget for minimum wage; if they need an attendant to sleep in their home but not provide direct assistance overnight, they can budget for a flat rate of about $50. For most applicants, the maximum number of hours allowed per month is 212 (or seven per day). The program also provides significantly bigger budgets for people with higher needs—those on a ventilator, for example. Of the 962 people currently participating in DF, 75 might otherwise be in an ICU bed, Larmondin points out. An average budget is roughly $4,000 a month. Some participants receive more than $14,000, and others as little as $500.
After applying, potential participants are placed in a queue for an interview, and can wait as long as a year before being contacted. Currently the wait list has nearly 500 people. If a person’s circumstances are exceptional—for example, if DF would allow them to move out of long-term care—they can move up the line. Interviews are typically held in one of 11 local independent living centres across the province. Potential participants are interviewed by a panel of three—typically there is one representative from the Toronto office, one from the local centre, and one local DF participant. “That peer part of the interview is really important,” says Larmondin. “They know what it’s like to recruit and hire and manage staff in the local area, what it’s like to try and staff a bedtime shift in the middle of February, for example.”
The interview lasts between two and three hours, with the panel asking about a person’s knowledge of Ontario employment law and how payroll deductions work. “It’s more of a negotiation process than an assessment,” says Larmondin. The panel may also ask for more information about the proposed schedule—“That sounds like a little bit long for shower; can you explain why it takes so long?”—so as to come to a mutual understanding about what the budget should be. After the interview, the panel meets to determine eligibility, and they sometimes turn people away. “[For] some people who are new to their disability and to receiving services, directing their own attendants might be a little bit foreign to them, so they might need a little bit of life skills in order to meet the eligibility for that category,” says Larmondin.
How does Direct Funding work?
Once in the program, participants receive monthly payments via direct deposit. They pay their staff every two weeks, often with the assistance of a bookkeeper (most budgets provide $170 a month for this service). They report every three months to the Direct Funding office, providing an account of how all the money was spent. Participants are expected to ensure that staff are receiving vacation pay, are compensated properly for public holidays and that CPP, EI and income taxes are deducted.
Participants can employ whomever they like—their attendants need not be trained personal support workers or health care professionals. For example, they can hire a neighbour for one hour at bedtime—not always the easiest shift to fill. “My best attendants are not qualified,” says Eddy Lefrançois, who lives in Dubreuilville, Ont., a town of 650 three-and-a-half-hour drive north of Sault Ste. Marie, and has lived with ALS since 1992 (more than 20 years longer than doctors expected). “They are just good, hard-working people. I train them to my needs, and I am more than satisfied.”
When a DF participant isn’t happy with an employee’s performance, there’s no third-party to phone and complain to. Lisa Crigger calls her staff into her bedroom for sensitive conversations. (“Is this how your kids feel?” one of her staff joked to Crigger during one of these talks.) She says she’s always been good at speaking frankly with people, but she doesn’t always relish being “the boss.” “To be honest, it’s really hard to do,” says Crigger. “It’s hard to be a mother, to be a wife, and have people come in and out of your house every day. But you have to make it work somehow.”
Does Direct Funding reach as many people as it should?
Larmondin has heard DF described as “the best-kept secret in health care.” The program is always trying to recruit new participants, visiting MS and ALS support groups and making presentations to LHINs and care coordinators. “We tell them, ‘We can take people off your caseload if you know anybody who might be suitable for the program,” she says.
But why go out in search of new participants with people waiting a year or longer for an interview? “We never know when a funding increase is going to come down the pike,” says Larmondin. When she started working in DF seven or eight years ago, people were waiting nearly five years to get in. “How big could the program grow? I guess we are almost limitless. The administration of Direct Funding is quite lean and most of the funding goes to participants’ budgets, so as our funding increases, so can our number of participants.”
Lisa Crigger knew about DF for years before applying and thinks it’s well advertised in the disability community. Some people she knows who might be eligible for DF have told her they aren’t interested in the program. “They like that somebody else is in control,” she says. “They don’t have to worry if staff don’t show up.” At the same time, she wonders if people who aren’t eligible for DF might benefit from it—people who themselves aren’t able to direct their own care, but have a parent or spouse who could.
This question is one which Tracy Odell, an executive on the board of directors at the advocacy organization Citizens with Disabilities Ontario, has considered as well. The requirement that people be able to direct their own services was critical to the program being approved initially by the government, she says, because it offered a measure of protection against abuse and liability. “But now [the program has] been running for a while, it’s more mature, the safeguards are in place,” she says. One of her family members looked into applying for DF for his wife—who recently developed a disability—but was told they wouldn’t qualify because his wife isn’t able to direct her own services. “Somebody who’s older, they need help to figure it out,” says Odell. “They don’t really know what’s the best way to pick me up and help get me on the toilet” (an example of the type of instruction DF participants are expected to be able to give their staff). Odell wonders whether DF would allow some older people who live with a competent family member to stay home. “There are people in hospitals and institutions who would want to be free,” she says.
Eddy Lefrançois thinks the wait time for DF is a significant barrier. He knows someone who has ALS who needs DF now; the financial burden of paying for extra services is taking a toll on this person’s marriage. “I once read that it was cheaper to have DF funding than pay to have people with disabilities live in a hospital,” Lefrançois says. “I can attest that being home is much more pleasant and rewarding. This has become a survival need for me. I would be confident to say for others too.”
For years I have been wanting to take Travis to see the Dave Matthews Band. We have been long time fans and Travis enjoys their South African connection. Imagine my delight when I discovered they were coming to Ottawa to play at our annual Bluesfest concert.
We have attended Bluesfest several times (Tragically Hip, Crowded House, The Killers, Cypress Hill! to name a few) and have always enjoyed it. The last time we went, I was living with ALS and it was difficult with the crowds, parking etc. I noticed the wheelchair section, however, it was off to the side, people are penned in like cattle and are only allowed one friend (they call it companion). Instead, I wanted a way to make Dave Matthews a special experience.
I learned about a VIP section, where you pay double the ticket price, however, have room to move around and have your own bar and bathrooms. So I called Bluesfest directly and asked about wheelchair accessibility in the VIP zone. The person on the phone informed me that although the reserved seating section is not accessible, the "standing room" part is, and that they would have staff who would find me a spot where I could see the stage. I thought great, freedom to move around, allowed to have more than one friend and a VIP experience, perfect!
Travis had a friend who upgraded her festival pass so she could join us in the VIP section, and I had a friend I was hoping to say hello to in general admission.
We made our way to the VIP Tent and explained our situation to the people at the gates, they gave us both accessible wristbands as well as VIP wristbands and stated that there was a wheelchair platform in the VIP zone and assured me having another friend was no problem. They let us know that the platform was first come first serve and that if I wanted to save my place, not to leave.
We found a spot, staff brought over two chairs for Travis and our friend, and chatted happily for TWO hours (mindful of the fact I was told not to leave, I didn't want to lose our spot), waiting for the concert to begin.
As soon as Dave Matthews started performing a staff member approached us and told my friend that she couldn't be there as I was only allowed 1 companion. We explained that we had called ahead of time, Bluesfest staff at the VIP gates told us where to go and that staff on the platform brought over chairs and we had no problem for the past two hours. Of course, there was plenty of room on the platform behind us for more wheelchairs. She stated that she needed my friend's chair for another wheelchair companion. Travis took her aside to explain our situation further and found another chair for the other person! She told Travis that despite what other staff told us, she had been there for 15 years so she was right. As soon as another wheelchair came on the platform, she told my friend she had to leave. I wasn't about to have her attend alone when she spent extra money to be with us, so the three of us left the platform to go on the grass in front of it.
We noticed cocktail style tables and stools where some very boisterous, drunken festival attendees were and Travis asked if we could use one of their stools. As soon as they saw me, they generously put us in front of them to make sure I could see. Point being, drunken people were much kinder than the staff!
Now we are at about the 4th song and another staff member in a grey shirt approaches us claiming to be the head of accessibility issues. I thought to myself "what great service, someone noticed what happened and is coming to fix the situation", so I tell her what happened, and with a blank stare she states "I'm not sure about any of that, but I noticed your wheelchair and you aren't supposed to be in the VIP zone". Caught off guard, we stare blankly at her, and she states "your husband doesn't have the wristband". Travis lifts his wrist and shows her both his wristbands. "Well, I need to see your tickets". Ummm, okay so you are telling us you think we snuck out of the wheelchair section to be in the VIP zone, and I guess stole some wristbands??? I show her my tickets and ask her about what we've been through. "I can't do anything about that, write a letter" she states. She leaves, and I break into tears, embarrassed, and publicly shamed!
I've said it before and I'll say it again, don't complain without being a part of the solution! Don't expect others to do for you, if you want something to change, be a part of that change!
So of course I wrote to Bluesfest, the Dave Matthews Band, and seeing as the Ottawa Citizen is one of Bluesfest's biggest sponsors, my friend Kelly Egan of the Ottawa Citizen who has written multiple articles on my struggle with ALS. I have included my letter below if you are interested.
I was happy that the Executive Director of Bluesfest, Mark Monahan, personally called me upon receiving my letter. He offered to refund my ticket and offered me a free ticket to Cityfolk. I had attended Cityfolk last year (it is much more chilled than Bluesfest!) and commented on the fact that I appreciated that I could bring an attendant for free. Mr. Monahan then informed me that for Bluesfest, your companion gets the VIP Zone for the price of a regular ticket. I couldn't believe it, then why wasn't I told that when I called asking about VIP Zone and wheelchair accessibility? Why did we pay full price for VIP if we didn't have to? And why, oh why, when we ended up in the VIP Zone off the platform, were we told we didn't belong there because we had a wheelchair? Why is this not written anywhere on the website? I think this is a policy that nobody knows about!
I explained to Mr. Monahan that while Bluesfest makes an attempt at accessibility, people with disabilities do not have the same rights (Equity vs. Equality). An able bodied person may also lose their spot if they move, however, chances are they will be able to find another spot to see the stage from. So how about creating a space where people with disabilities are allowed more than one friend (as other attendees can have, equity!), and can move around? A simple solution, have more than one wheelchair platform! Also, how about training the staff, especially those in the disability section, a lesson on compassion.
Instead of a free ticket to Cityfolk, I asked if he would be willing to donate a Bluesfest Pass to our Curling for Carol Bonspiel in March, which we could raffle off to raise money for ALS Canada, and he agreed (I also invited him to bring a team)!
So despite the fact that we had a ruined bucket list experience, I'm stoked for the raffle prize, and take it as a win.
I also offered to be a voice for those with disabilities for those attending Bluesfest next year, whether it is training staff, or organizational issues, so hopefully others will be treated with dignity and have an awesome festival experience, despite their disability.
...I'm still waiting to hear from Dave Matthews...
Dying Woman brought to tears at Dave Matthews Band Concert by Ottawa Bluesfest Staff
Cc: Mark Monahan, Dave Matthews, Kelly Egan (Ottawa Citizen)
My name is Carol. I am 46 years old. I am in a wheelchair and living with ALS, a terminal, neurodegenerative disease, which progresses as I lose all muscle function in my body.
I am married to Travis, a South African, and a caregiver to me. He is loving and supportive to me during all of the devastating challenges we face.
I was thrilled to be able to take him to see a bucket list concert for both of us, The Dave Matthews Band.
As I had been to Bluesfest before, I was aware of the wheelchair section and policy of only being allowed 1 friend. I also don’t like to feel trapped and penned in like cattle so wanted the freedom to move around.
So this year I called in advance and discussed with staff the Metropolitain VIP Zone. I was told that the reserved seating zone is not accessible, however, the party zone is, and that there would be staff who would help to place me in an area where I could see the stage, and I would not be limited to being with only 1 person.
My husband and I had 1 friend who upgraded her pass to be able to be with us in the VIP Zone. When we arrived, we discussed our situation with the staff at the VIP gates and they assured us that 3 of us wouldn’t be a problem and that there was a wheelchair platform in the VIP Zone. They also told me to not move once I get my place as it is first come first serve basis and if I left, I would give up my spot.
Staff on the platform sat us and brought over 2 chairs, one for my husband and one for our friend. All three of us had accessibility wristbands as well as VIP wristbands. We stayed in our spot with no problem for 2 hours.
As soon as the concert began, a staff I had not seen before came up to us and told us that my friend could not be there as I was only allowed 1 friend. My friend had on an accessibility wristband. I informed the staff member that the Bluesfest staff in the purple shirts had put us there, and that I had called before I bought my VIP tickets to ensure that this was possible. She told me I misunderstood. I told her I was just doing what the Bluesfest staff advised me to do, all of this happening as Dave Matthews was singing so we were missing the concert. Then the staff member said she needed our chair as there were none left. There were 3 stacks of chairs sitting at the tent in front of us. She told my friend to leave, although there was plenty of room for more wheelchairs behind us. So the three of us left. After spending 2 hours waiting on the platform with no issues.
In and amongst the crowd (where I could not see) in the VIP section, another Bluesfest staff came along wearing a grey shirt and stated that she was in charge of accessibility issues. I thought she was there to discuss what happened, that I was literally thrown out of the wheelchair section. She basically told me she didn’t care and that she noticed my wheelchair and wheelchair people aren’t allowed in the VIP section. She said my husband didn’t have the proper wristband. He did as he had on both the yellow accessibility wristband as well as the yellow VIP wristband as we all did. I guess she didn’t believe us because she asked to see my tickets, which I showed her. Being the head of accessibility issues, as she claimed, I thought she would care about our situation, but she didn’t and told me to write a letter. I felt publicly humiliated and spent the rest of the concert in tears.
Living with ALS is extremely difficult. I had chosen Dave Matthews as I only have enough energy for 1 concert. I purchased Museum parking and VIP tickets to reduce any stress and difficulty I might encounter. I was anxious about attending the event all day, but I was looking forward to providing my husband with a dream concert.
I did everything the Bluesfest staff told me to, from the first phone call in which I was told to buy VIP tickets and never told that a wheelchair section was literally in the VIP Zone. In the end, I felt like a second-class citizen, “separate but equal”. I do not have the same rights as other concert attendees, and was shamed publicly.
You turned our dream come true into a nightmare and have increased my already heightened anxiety about going out into crowds. I already have a limited life and you are taking more away from me.
As a person living with ALS I like to keep updated on the latest clinical trials and what is happening with research. The ALS Therapy Development Institute is a US nonprofit biotech research organization.
On June 13, 2018, Dr. Steve Perrin of ALS TDI hosted a midyear ALS research review webinar. This session specifically outlined what people should be on the lookout for in 2018, including information on Masitinib, CopperATSM, NP001, NurOwn, AT-1501, and other potential treatments. ALS TDI also updated us on certain clinical trials recently completed I have been following, that read out negative. Tirasemtiv was one, which I almost participated in but was unable due to travel constraints.
They also gave information on the recently passed United States Right to Try legislation. It was informative to me as there are currently individuals trying to introduce "Right to Try" legislation in Canada. Personally, I'm not a proponent of "Right to Try", I find too many snake-oil salesmen trying to take advantage of the vulnerable. You wouldn't believe how many spam comments I get on this blog offering me a cure. They are mostly "spells" from witch doctors offering a cure from my HIV and Herpes (Don would say "UH, HELLO, ALS BLOG?!?). I do believe, however, in people having a choice in their treatment and would not oppose Canadian Right to Try legislation.
If you are interested in viewing the webinar, click on the image below.
I am participating in ALS TDI's study called the Precision Medicine Program (PMP). If you are living with ALS and would like to contribute to much needed research, you can do so from the comfort of your own home! It is easy to sign up, and fill out the questionnaires.
Every month or so, I fill out an ALS Functional Review Scale and I receive an automated call to record my voice saying "I Owe You a Yo-Yo today" about 6 times, which is then analyzed by Google! As I typically do not qualify for clinical trials (usually they call for people within their first two years of diagnosis) this is a method for me to feel useful and hopefully in some small way contribute to the eradication of ALS.
The graph below is actual tracking of my personal ALS FRS results, and I'm happy to say it demonstrates slow progression (at least for now). How cool is that?
The ALS Therapy Development Institute is searching for more participants for their Precision Medicine Program. If this might be right for you check out their website by clicking the button below.
For information on Clinical Trials in Canada, click on the button below.
Happy Canada Day!
I love summer. We have been having a heatwave in Ottawa for quite some time now and it is perfect for me. Not only because I miss the heat from when we were living in St. Maarten in the Caribbean, but with ALS the lack of circulation means that I am always cold. In fact, I have to ask people if it is hot, I just don't feel it! When I'm cold, my body cramps and freezes, when I'm warm I have much better movement. Poor Travis, he is the opposite and is always hot, so it is a bit of a war back and forth with our air conditioning, though marriage is compromise and we are both pretty good at that.
It is also much easier for me to get out and about and I am trying to take advantage of that. After the Walk for ALS Keith & I took a trip to Bowmanville and visited with family. For one night only, we definitely made the best of it and had a great time with Wendy, Mike, Brad, Brooklyn, Erin, Sue & Wayne. Love you all!
What better way to spend Canada Day than in Algonquin Park? As we have in previous years, we stayed at Killarney Lodge, the only place I have found so far that has accessible cabins in the woods. It is so perfect for us, we have our own cabin with a ramp, toilet seat raiser, shower chair and accessible dining room. Travis can even wheel me down to the water. I feel so grateful for this experience. As we were driving into the park, we saw a moose. Nothing I would rather be doing on Canada Day! Travis took me canoeing, swimming in the lake and he tried paddle boarding for the first time while I hung on to the back and got a free ride in the water. We spent most of our time feeding chipmunks, listening to the call of the loon, and of course I achieved global domination (Risk!).
Our balcony garden is thriving due to Travis's green thumb, put your requests in now for homemade hot sauce and homemade pesto!
I am also continuing my advocacy work for ALS by participating in focus groups and letter writing to ensure patients living with ALS have their voices heard on issues at a local, national and international level.
Check out our summer photos on the gallery page of this blog.
Carol Jean Skinner (née Sharman)