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.

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.
 
Sincerely,
 
Carol Skinner
(613) 558-2999
rolyskinner@gmail.com
www.livelovelaughwithcarol.com
 
 

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.

Global Day
Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.

ALS/MND  is a global problem. It does not discriminate on the basis of race, ethnicity, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed, the impact of the disease will be forever felt by their loved ones.

Alliance members across the world use the hashtag #ALSMNDWithoutBorders on 21 June to raise awareness and funds on Global Day.

Why 21 June?
June 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause, treatment and cure of ALS/MND.

Join the fight… Spread the word

Global Day is an event that knows no boundaries, so everybody can be involved. Any event (big or small), any activity, any act, can be a part of raising awareness of ALS/MND.
​
Ways to spread the word:

Use the hashtag #ALSMNDWithoutBorders to share information and education about ALS/MND on social media!

• Celebrate international partnerships and collaborations that make us united in the worldwide fight against ALS/MND.
• Show your support for the Fundamental Rights of people living with ALS/MNDby reading and sharing this advocacy tool.
• Hold a fundraiser for your local ALS/MND association.
  
  

For further information about getting involved in Global Day, please contact the Alliance Coordinator at coordinator@als-mnd.org.

The first time we met Carol Skinner in 2015, she was so relentlessly positive, so often smiling in the face of approaching death, the pair of us (writer, photographer) left the apartment holding back tears.

(Strange. Was she not the ailing one?) Three years later, she’s very much alive — surprise, surprise — and still fighting the good fight against ALS.

“I was living as though I was dying,” she said of the early months with the terminal illness. “I got my affairs in order. I gave away things like my high school yearbook and my wedding dress.”

Then got back to living. Last weekend, for instance, she returned to the annual ALS walk, where her teams have raised more than $26,000 during the past four years. Fortunately, Skinner has strong family support, as exemplified by her father, Peter, who has become “an assistant advocate.”

She says she’s not surprised. “My dad’s been my biggest hero my whole life. He’s always, always told me I could do anything, my whole life.”

The only daughter in a middle-class Montreal household, Carol remembers her father being absent for big parts of her childhood as he travelled the world as a pulp-and-paper executive.

“He always tested me on geography. He gave me my love of travel and other cultures. He would bring me dolls from all these foreign countries.”

Her father instilled a work ethic in the children, she said, which served her well in her career as an art therapist.

She knows how difficult the illness has been on her parents, who had moved to Ottawa, partly to help her with errands and ongoing care and support, not to mention multiple holidays.

“Dad is very sensitive guy on the inside. He comes across as a fun-loving, kind of sarcastic guy, but he’s a softie on the inside and I know it’s breaking his heart.”

ALS is a neuromuscular disease that attacks, in layman’s terms, the body’s central wiring system. Over time, the brain and its main muscles no longer communicate properly, making limbs hard to control. Eventually, speech, breathing and swallowing are affected.

Skinner can now only walk short distances with a walker, and otherwise relies on a wheelchair. She can’t load the dishwasher or lift her arms very high. She now has daily nursing care. But her breathing and swallowing are normal and her spirits, many days, are good.

RELATED

• Egan: As ALS steals his daughter, a father helplessly watches on
• Ottawa opens ALS centre amid ‘massive’ advance in basic research
  
  

She continues to advocate for more research funding, pressing MPs to make good on a motion indicating support for ALS federal funds. All the while, she knows clinical trials and experimental drugs likely won’t help her, as she is too advanced with the illness to take part.

So, she’s planning a trip to Tuscany later in the year, ALS be damned. Life goes on.

“You have to be grateful for what you have instead of regret what you don’t have, because then you’ll never be happy.”

To contact Kelly Egan, please call 613-726-5896 or email kegan@postmedia.com
​
Twitter.com/kellyegancolumn

ALS kills 80 per cent of sufferers within two to five years, a terrifying statistic for Carol Skinner, on the eve of her fifth anniversary.

Today she uses a walker inside her small apartment — a wheelchair everywhere else — and doesn’t drive or work anymore, or even cut her own food, or wash her own hair. On a good day, she can write her name. On a bad day, there are things she can hardly speak of: “I’m scared to death.”

Peter Sharman would trade places with her in a heartbeat. It is what a father would do for his child.

Since Carol’s diagnosis in September 2013, Sharman, with his engineering brain, has been making notes about what it’s like to be the parent of a child with a terminal illness. The short version runs to 19 pages, parts of which make for a heart-breaking read.
​
“I remain frustrated that it wasn’t me that was diagnosed,” he writes. “I’d give a lot to take this away from Carol and so often feel regret that it should have been me, because I’ve lived a relatively long, busy and fulfilling life already.”

We’re on the 21st floor of a west-end highrise, the windows giving way to a breathtaking view of the Ottawa River. It is beautiful outside, tidy and luxurious inside, where he stands relaxed in shorts and sock feet, a few sleeps before another Father’s Day.

Of course he would trade for his daughter’s suffering. It is what a parent does. To protect is to love.

We seldom focus on the parents’ agony in the face of terminal illness, a father’s helplessness. Dr. David Taylor, vice-president of research at ALS Canada, has seen it up close.

“It’s the pain,” he says, “and it’s a different, unimaginable pain. You see in their faces. They’re watching their child go through this and having to consider the notion of the child dying before they do.”

With a trace of an English accent, Sharman is retelling the story of how he and his wife, Louise, were told about Carol’s diagnosis. They were on a cruise on the Black Sea, just outside Istanbul, when a phone message arrived from Travis, Carol’s husband.

There was shock, of course, and tears, the kind a stiff drink doesn’t take away. What, even, was ALS?

They abandoned the second half of the cruise and flew home immediately, despite the couple’s urging to finish the trip.

“I tell you how you compare it: Somebody just died. There’s no difference. Because to me, she had died, in that instant.”

Life was about to change, in ways he never imagined. Partway through Carol’s illness, her brother, Don, died suddenly on the Caribbean island of Saint Martin. Peter and Louise had now lost their oldest child at age 52.

Newly into retirement, his back, meanwhile, gave him loads of trouble, resulting in surgery. He had to give up golf, which he played four times a week, and a beloved sports car, which he couldn’t bend into. Her world was shrinking — “It really tore me apart understanding that she’d never walk again” — and so was his.

They sold the family home in Montreal and moved to an apartment in Ottawa, in large part to support Carol and Travis. Every day, she is on his mind. How could he help but not continually intrude?

“My personality went from type A to type L (for “lost”) — and I don’t feel I’m me anymore. I know others see that and understand a little bit,” he wrote. “But pity is the last thing we need.”

He is a charmer, with these playful eyebrows. Born in England, he survived the Blitz in London during the Second World War and arrived in Canada as a teenager, landing in tiny Ocean Falls, B.C., a beautiful but isolated mill town of maybe 2,000 souls.

“I lost my accent in three weeks.” School wasn’t for him — “I’m the only guy from England who failed English” — but he had a salesman’s touch and a driving ambition. He was soon working in the mill, learning all aspects of the pulp and paper trade.

“I failed Grade 11 but I owned an engineering company. How do you do that?”
​
In 1961, he was off to Vancouver, where he met and married Louise. Three children followed, then a move to Montreal to start an office for a pulp and paper giant. It would become home. Carol was born seven years after the boys, the best mistake, as they say, the couple ever made.

“She’s still so cheeky,” he says. “Still the same. ALS, no ALS, she’s the same as she was at three years old.”

Her teenage years — when she babysat for Montreal Expos great Gary Carter — were a mystery to him.

“Between the ages of 13 and 19, my daughter left the human race. She’d have all these friends over from school, university, at the pool. I never understood a word they said.”

Travel was the family’s lifeblood. He estimates he’s visited 135 countries and once travelled 150,000 kilometres a year, away from home for weeks at a time. To this day, trips — cruises in particular — are a way they best bond with Carol, with wonderful backdrops such as Costa Rica, the Baltics or corners of Asia.

Since her diagnosis, he’s dived into the ALS community. There is no effective treatment for the illness, made famous by baseball great Lou Gehrig. And he’s quite shocked by the lack of government support for research.

Look at the millions spent on heart and stroke, or cancer, or diabetes, he says.

ALS, he says, gets zero direct dollars.

ALSO: Ottawa opens ALS centre amid ‘massive’ advance in basic research

There are some 3,500 Canadians living with ALS every year, a number he thinks is too small to spur big pharma to explore new medications.

“Is 3,500 lives a year not worth it? Not worth anything? When you can spend $605 million on the security of Charlevoix?” he asks of this month’s G7 meeting in Quebec.

Sharman accompanied his daughter to a recent meeting of the ALS caucus on Parliament Hill, a group of MPs formed in the wake of the death of Ottawa-Vanier MP Mauril Belanger of ALS. He brought the room to a standstill, his daughter says.

“I consider myself an assistant advocate to Carol.”

His mission now, and it is a big one, is to help create enough awareness of ALS that momentum builds for broader public understanding and more urgent scientific research.
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“I guess that would be the best Father’s Day gift. Have a drug for her and let me go.”

MORE: ‘My dad’s been my biggest hero my whole life’

The treatment of Amyotrophic Lateral Sclerosis has not advanced much since baseball great Lou Gehrig died of the disease in 1941, a story that transcended the Yankees and sport in general.

But hope is building, with more progress in the past 10 years than in the previous 60. Ottawa is onboard, with the opening in May of a neuromuscular research centre, based at the Civic campus at The Ottawa Hospital, where muscular dystrophy and ALS will get special attention.

Experts say the exact cause of ALS has been difficult to pinpoint while treatments have been elusive because of the complexity in how the brain interacts with motor neurons to make muscles work on command.
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Dr. Ari Breiner is one of seven “clinician investigators” at the centre, which operates out of 5,000 square feet of space that should, in theory, have contact with all 150 or so ALS patient in the area.

“I think it’s very exciting. Ottawa has always had a strength in basic science research in neuromuscular diseases,” he said this week. Indeed, he points to an overall network of about 200 who are working in clinics or labs (university or hospitals) on neuromuscular diseases.

Egan: As ALS steals his daughter, a father helplessly watches on

Though just off the ground, he’s predicting the first clinical trials in Ottawa will begin later in 2018 — probably in collaboration with another centre, probably testing a new drug. (Partnerships are important here because the local patient pool is relatively small and many would not qualify for trials.)

So, why is ALS so tough to crack?

Dr. Breiner says scientists have a decent understanding of the “downstream” effects of ALS, such as a protein buildup on the motor nerves. But the “initiating event,” he says, the original “insult,” is the big question.

“Understanding the biology of the disease is the big thing,” though genetics and environmental factors are thought to be part of the puzzle.

Dr. David Taylor, vice-president of research at ALS Canada, says there have been massive advances in understanding the disease at the molecular level in the past 10 years.

“I am of the belief that we are on our way towards treatments,” hopefully within the next 10 to 20 years, he said this week, predicting there will be multiple therapies to at least slow down the disease.

An immediate roadblock? Funding. He agreed with Peter Sharman’s contention that there is little sustained, direct funding for ALS research from the federal government.

“It’s hard to have a roadmap when you’re working on fumes,” he said. “It’s hard to have a roadmap when you don’t have enough money to build the road.”

It only makes sense that cancer research, for instance, would get more funding, because one in three people have a cancer episode during their lifetime. “It is a case of the rich get richer, in a way, because diseases like cancer have such a large grassroots footprint.”
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The ALS Ice Bucket Challenge was enormously successful in 2014, but the funds only went so far, given research is an ongoing, multimillion-dollar endeavour.

The difficulty with solving the ALS puzzle, he explained, is understanding the workings of the entire central nervous system, from the brain to the tips of the toes.

“The heart is a pump,” he said by way of example, “the brain is still being understood.”

The Ottawa centre is an important part of the solution, he said. Not only will it provide care from many disciplines (physio, speech therapy, social workers) but it should remove the need to travel to Montreal or Toronto for trials.

ALS Canada funds between $1.5 million and $2 million annually in research, Dr. Taylor said, putting the total of all agencies across the country at roughly $4 million. Even a yearly commitment of $5 million from the federal government, for four or five years, would make a massive difference, he concluded.

“I mean, that’s a rounding error for them.”
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ALSO: ‘My dad’s been my biggest hero my whole life’

Congratulations to the Living Loving Laughing Walkers and our supporters for raising $6705 at the 2018 Walk for ALS!  Since 2014 our walk team has raised well over $27,000 for the ALS Society of Canada!  Woo Hoo!  If you include Robin's Curling for Carol, Dad's Amazing Evening, the Ryder's Christmas campaigns, and Heather's Hudson Valley Walk to Defeat ALS, as a team we have raised over $45,000 for ALS research and care (and that is not even including the Ice Bucket challenge donations).  WE ARE MAKING A DIFFERENCE!  I can't even tell you how you have lifted my spirits and provided me with hope with your generosity.

It was a beautiful day as you can see and I am so grateful to my team for travelling from Calgary (Keith!), Toronto, all over Quebec, and of course Ottawa!

It was such a pleasure to meet many people living with ALS whom I have connected to via social media and those who have searched out my blog.  I had no idea how many people actually read this!  It was so touching to meet you all in person and now that I know you look to this blog for help, I will be more diligent in my writing.  

Special thanks to Veronique at Social for hosting our beautiful and touching lunch.  Congratulations to your amazing mom Lise, who though just diagnosed a few months ago, has already advocated on behalf of ALS by participating in a CTV News interview as well as an Ottawa Citizen interview, well done!

Also, special thanks to the Brookstreet Hotel for donating a night's stay for the silent auction.

Our ALS community is a group of loving and fierce warriors!  Impossible to name you all but know you are always in my heart.

New research centre a 'game changer' for neuromuscular disease patients

ELIZABETH PAYNE

More from Elizabeth Payne
Published on: May 2, 2018 | Last Updated: May 2, 2018 5:57 PM EDT

Ottawa neurologist Dr. Jodi Warman Chardon recalls seeing patients with neuromuscular diseases — including muscular dystrophy, ALS and others — getting on the train to Montreal to take part in clinical trials not available in Ottawa. Some had to travel much farther.

The image has stayed with her.

“So many people are desperate to participate in clinical trials,” she said. It made her realize more must be done to help make therapies and research available to Ottawa patients closer to home.

The Ottawa Hospital’s new neuromuscular research centre, which opened this week at the Civic campus, will enable patients to take part in clinical trials here in the capital, which will give them access to new treatments that are not otherwise available.

And it will do more than that, said Warman Chardon. The centre will create a hub in Ottawa for physicians and scientists to collaborate on new treatments. She calls it a “game changer.”

Ottawa has one of the highest concentrations of neuromuscular researchers in the world. The new centre will expand the work being done and bring patients and their physicians into the mix.
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“We want to be the Stanford of Canada,” said Warman Chardon, who is also associate scientist at The Ottawa Hospital and assistant professor at the University of Ottawa. “We have got a plan to become one of the largest neuromuscular research centres in North America, and the world.”

Among other things, the new centre will allow researchers to get access to blood samples from Ottawa patients to help with their research, said Dr. Robin Parks, a senior scientist at The Ottawa Hospital and professor at the University of Ottawa who helped establish the centre with Warman Chardon.

Patients and their families are also cheering the opening, which, according to hospital CEO Dr. Jack Kitts, gives Ottawa a glimpse of the kind of cutting-edge health care the new Civic campus will bring to the area when it opens. The new campus, to be built on the eastern edge of the Central Experimental Farm is in the planning stages.

Ottawa’s Teresa Buffone, who has family members with myotonic dystrophy, has been one of the forces pushing for the new centre.

As a “super advocate” for people with myotonic dystrophy, Buffone has devoted recent years to raising awareness about, improving treatment for and expanding knowledge of the rare disease that can have a devastating impact on patients and their families.

She set up the country’s first support group for patients with myotonic dystrophy as well as a patient registry and she led a fundraising drive for more research. That work was among efforts that paved the way for the centre.

“People who have these neuromuscular diseases have multi-system difficulties and they just get worse over time. Having a centre where they can go and be followed on a routine basis means the specialists can affect medical interventions at an earlier stage rather than letting the disease progress to a critical stage.”

She, too, said access to clinical trials in Ottawa will make a huge difference to the lives of patients with various neuromuscular diseases. Patients who wanted to participate in a trial involving myotonic dystrophy in the past have had to go to Rochester to do so, which was impossible for many.

She also said it is crucial to future breakthroughs that researchers are able to meet patients personally. She said she had been at conferences in the past in which researchers working on the disease had never met a myotonic dystrophy patient.

“Researchers need to see the effectiveness of these diseases and how they manifest over time.”

She said there are 10,000 people in Eastern Ontario with various neuromuscular disorders.
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“I am so happy that it finally came about,” she said of the research centre.

It's walk season again!  Thanking you in advance for your help in funding ALS research and client services!  As you are aware through my last few blog posts, ALS Canada receives no government funding.  It is only through grass roots efforts and your generosity that ensures a possibility of a future where no one should have to suffer with ALS.

The WALK for ALS is the single largest fundraiser for ALS in Canada - Last year $4 Million dollars was raised to support vital research and critical support services for people living with ALS.

This is a time of unprecedented excitement as a result of recent discoveries, and unparalleled momentum following the success of the Ice Bucket Challenge in 2014. We have witnessed more progress in the last 5-7 years than in the past century. Today, many of the top researchers in the world believe we are positioned to find treatments that can significantly alter the course of the disease in the future. 

Thank you for your support in either sponsoring me for the walk and/or joining my team on Saturday June 9th!

Join us for the 5th Annual Curling for Carol Bonspiel! Carol Skinner was diagnosed with ALS at the age of 41. You can learn more about her story and how she is using her time to advocate for others living with ALS at www.livelovelaughwithcarol.com/blog. Many people are not aware that only select pieces of equipment are funded by OHIP and even then, only partially. The average person diagnosed with ALS will spend more than $150,000 of their own money on vital equipment during their battle with ALS. That is why we come together for a great day of curling, give away prizes and draw for exciting raffles to raise much needed funds. 50% of the proceeds goes directly to ALS Canada Research Division and 50% goes toward the puchase of necessary equipment such as a wheelchair and in-home mobility aids. Curling is a great way to support those with ALS as it is one of the most accessible sports out there and a true Canadian classic. Wheelchair curling is even an olympic sport. That said, you do not need to have ever curled before to come out and have a great time. Register as a single and join a team or sign up as a team of 4.

For more information about ALS go to: https://www.als.ca/about-als/what-is-als/

FAQs
What is a Bonspiel?
A bonspiel is tournament. Teams will play each other and "compete" for the top spot of the day. The curling community has always used Funspiels as a way to introduce people to the sport and raise money for charity.

What do I wear to the event?
Wear comfortable, warm clothing such as athletic or yoga pants, no jeans. Dress in layers. Half of the event time is in the rink and half takes place in the restaurant.

What equipment do I need to bring?
Bring a pair of clean indoor only/gym running shoes. If you have a slider or a shoe grip, you can use it but it is not necessary. Brooms are provided, including brooms for participants in wheelchairs.

What if I don't know how to curl?
That's ok. At Funspiels you will find that most peopel have never curled in their life and some will have curled a couple of times but would still call themselves non-curlers. You will still be able to curl even when it's your first time. You will be able to throw rocks, sweep them into the house and every once in a while do a spectacular take out!!

What if I can't find enough people to make a team?
That's ok. Several people will be in the same boat as you. We will match people together to create full teams. We will make every effort possible to match non-curlers with those who have a little experience so that everyone can fully participate and have fun doing it.

Is their food provided at the event?
Yes, there is a pizza lunch provided with your registration. There are also snacks and beverages available for purchase.

Are there ID or minimum age requirements to enter the event?
No ID or minimum age is required unless you would like to purchase alcohol at the cash bar. Children under 10 years of age will have difficulty in throwing the 40lb curling stones but are welcome to particpate in conjunction with their parents/team. 

Is the event wheelchair accessible?
Yes, both the event and venue are wheelchair accessible. There is a ramp on the ice for wheelchairs and accessible brooms are available.

What are my transportation/parking options for getting to and from the event?
OC Transpo bus routes 95, 97 and 63 will take you to the Nepean Sportsplex. Consult octranspo.com for more information.
Free parking for those who drive. 

How can I contact the organizer with any questions?
Contact Robin MacIntyre at macintyre2012@hotmail.com for more information.

Do I have to bring my printed ticket to the event?
We do appreciate you bringing your printed ticket to help with registration; however, if you cannot print it or forget it at home you will still be admitted as long as we have your name and information.

Is my registration fee or ticket transferrable?
Yes. It is helpful for the organizer if you can forward this information as soon as possible.

Is it ok if the name on my ticket or registration doesn't match the person who attends?
Yes, that is fine.
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Location

Nepean Sportsplex
1701 Woodroffe Avenue 
​Ottawa, ON K2G 1W2