This December the 30th International Symposium on ALS/MND was held in Perth, Australia.  

I am grateful for all who work together globally to fight this disease on all fronts.  I am honoured to have been mentioned as a council member for the International Alliance of ALS/MND Associations and strive to be a voice for all of us around the world living with ALS.

Although Perth is too difficult for me to travel to, next year the conference will be held in Montreal, December 9 - 11, 2020.  I am hoping to be strong enough to participate.  Click here for details.

A message from Tammy Moore, CEO of ALS Canada:

Privileged to serve on the Board of the International Alliance of ALS/MND Associations and invite everyone to Montreal for 2020. 

Powerful and informative days of meetings as we build capability, community and capacity globally to tackle the challenges for the ALS/MND community. 

Pleased to see Canadian contributors: 
Carol Skinner, Member PALS/CALS Advisory Committee
Dr David Taylor, Chair of the Scientific Advisory Committee. 
March of Faces - Norman MacIsaac and Mike Rannie. 
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ALS Canada - #AWorldFreeofALSMND #AFutureWithoutALS

On December 17th we gather to show the world that our cures are linked. That if we cure ALS, we can help unlock critical breakthroughs for Alzheimer’s, Parkinson’s, Multiple Sclerosis, and beyond. That together we can change the world.
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Travis & I started dating when we were living on the island of St. Maarten in September 2003.  Less than a month later, we took a catamaran ride for my birthday with friends.  Only a select few knew we were dating, as we had been friends for years so being in a relationship was brand new.  Captain Dave let me steer the boat and as we hit a wave, I fell and hit my head.  Head wounds are notoriously bad for bleeding, it wasn't pretty.  Travis stayed by my side to make sure I was okay, which outed our relationship as more than friends!

We never could have imagined that 10 years later, I would be diagnosed with ALS and what the weight of the words we said to each other at our wedding "in sickness and in health", would actually mean.

November is National Caregiver's Month, and more importantly, Travis' birthday!

I think that people try to imagine what it must be like for him, grieving for a wife with a terminal illness, working full-time as a chef in one the most stressful industries as a profession, and coming home and dealing with everything, shopping, errands, home maintenance, caring for me, etc.  But of course no one can really imagine the stress and weight of it all without living through it themselves.

Being diagnosed with ALS is the worst fate I could imagine for myself.  I wouldn't change a thing if it meant having Travis in my life.

Not once has he made me feel like a burden (which everyone living with ALS fears).  Every day he makes me feel loved, he makes me laugh, he gives me hope and he takes everything in stride.

Travis Timothy Skinner is my soulmate and I am so grateful for him it makes my heart burst.

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​Mom and I participated in the annual New Zealand version or the ALS walk this morning. The walk is held simultaneously in all major centres around New Zealand. Only got to hear about it last week  form a radio advertisement, but will be more proactive next year when it comes around. Wore your T shirts Carol, rather than getting and using their blue coloured ones. Glad we did, made ours feel distinctive and gave us the real sense of connection with you. I couldn’t help but feel the emotion of it. We were led off by a piper who started with ‘Amazing Grace’  Chatted to a lady along the route whose husband was diagnosed 6 months ago. He was working as a flight attendant. Had intended to take photos along route but my iPhone battery died and we asked a young lady to take a few pics for us. We asked a few of her team mates to pose as extras in the background so you could get a sense of the event with their blue shirts. (the writing on their shirts was a bit too fancy, hard to read what it says. Plan and simple writing works best) Three Company MD's/CEO's were there, taking part in a corporate ice bucked challenge. They collected $40,000 between them. One guys wife was the poured the bucket over him, doing it much slower than the others had had, seemed to take pleasure in making the pain linger. Delightfully chilly/painful look on his face 😬😜

Much love 
Dad + Mom

Hello!

I thought I would ask my network for help.  I am currently looking for home help for Saturday mornings.  I need someone who pretends to love cats (may need to clean up hairballs occasionally), is not shy (they will see me naked), has a personality (can keep up with my talking), loves vacuuming (at least I have a Dyson), has an interest in vegetarian cooking (Saturday is my have someone make a Pinterest casserole day) and has compassion.  Basically, I'm looking for a mom!  The person does not need formal training but does need some experience in caregiving.  Personal Support Workers are desired, students are welcomed and I love people from all walks of life.

I'm putting it to you as word of mouth has worked for me so far, and for such an intimate setting I need someone I can trust.  Feel free to share the job posting below:

​Seeking Female Attendant Care
 
My name is Carol and I have ALS.  I have two cats and live with my husband Travis in Kanata. This is a non-smoking home.
 
I use a Program called Self-Managed Attendant Services or Direct Funding (DF).  The Ministry of Health and Long Term Care funds it.  The Ministry gives me the money directly to hire my own attendants.  There is no Agency.  You work for me directly.  I am the employer and I will train you on how I like my routines to be done. www.dfontario.ca
 
This is a part time job. The starting salary is $17.00 per hour*.  You get paid every 2 weeks and all the standard deductions come off your pay cheque (CPP, EI and Income Tax).  You are covered by WSIB.  
 
Permanent employment is subject to successful completion of a 3-month probationary period.  You will be asked to sign an Employment Agreement that covers the points covered on this sheet as well as confidentiality, performance appraisals and termination.  After the probationary period, the salary will increase to $18 per hour*, with the possibility of a further increase.
 
*If you live outside of Kanata, you will receive a stipend of $4/day for travel expense.
 
You will get your 4% vacation pay on every cheque; therefore, when you take holidays you will not be paid.  You will be paid for public holidays according to the Employment Standards Act.
 
Your main job duties are: 
Assist me with personal grooming, showering, dressing, and transferring 
Circulation exercises
Meal preparation, light housekeeping, vacuuming and laundry
 
My schedule is as follows:
10:00am to 1:00pm –  Saturdays
 
You will be required to supply 2 work related references.
 
If you are interested please contact Carol Skinner at rolyskinner@gmail.com

 

I'm back!

After a much needed vacation from blogging, I am reengaging.

Today is the official 6 year anniversary of my diagnosis.

A few posts ago, I shared the difficult journey of living with ALS for 6 years for both myself and Travis.  

We literally saved each others lives and made a commitment to ourselves to focus on recovery and honesty instead of avoidance. 

Travis had to take medical leave from work and we spent the summer reaching out and accepting help on many different fronts.  Recovery is a full time job.  We each had several appointments per week including but not limited to psychotherapy, hospice help, social work, occupational therapy, physiotherapy, doctor's appointments, etc.  We treated the whole person, physically, mentally and emotionally.  Travis began running and swimming.  To enhance our "new phase" in our journey, we redecorated our apartment.  In fact we were so committed, we felt overwhelmed with appointments and I had to give us Sundays off to reconnect as a couple and take a weekly break.  It was nice to experience Sundays as normal families do!

We are so grateful to Dayne for flying to Ottawa not long after our hospitalizations and being there for us.

We took a 3 day vacation in Algonquin Park, for me, there is nothing more healing than being in nature.

We spent quality time with friends and family.

We were also fortunate enough to take a bucket list vacation in New Brunswick and Prince Edward Island.  Check out our Awesome things on the Travel page of this blog as well as photos on the Gallery Page.

This year, I had given up and felt like I had nothing more to share.  I was exhausted from focusing on ALS and had nothing left in my tank.  Looking back I feel that was the depression talking.  After taking a break to focus on recovery I feel ready to return to advocacy.   

My advocacy includes:

A new page on my website called "Tips & Tricks" for living with ALS.  It is currently and will probably remain under construction!

Increasing my involvement with the International Alliance of ALS/MND Associations.

This month I am attending the 2019 Ottawa Hike to End ALS.

I also continue to connect with others living with ALS to be a sounding board to help navigate the impossible situation of such a devastating diagnosis.

It’s just a few weeks away for the Ottawa Hike to End ALS!  The hike will be held on Saturday, September 28th at Mer Bleue Conservation Area on Ridge Road in Ottawa.  

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, hiking a 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 Canadian made products and a scavenger hunt for children.


Time: Registrations begin at 9:00 am and the Hike begins at 10:00 am  

Location: Mer Bleue Conservation Area: Ridge Rd, Ottawa, ON K0A 2Y0.  Parking lot 22
No dogs are permitted on the Mer Bleue trails 
   
Route: Select your route of choice from either a 7km trail run, a 5km hike or a 1.2km universally accessible boardwalk hike  

Activities: 50/50 ticket sales and scavenger hunt for youth and children. Fall themed snacks and refreshments will be provided. Please bring your own water bottles
 
If you have any questions you can contact Ottawa Hike coordinator Brianne at lisabrianne026@gmail.com  

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In the time it takes Health Canada to approve potentially life-saving treatments, 500 Canadians will die of ALS.

There are more than 60 ALS drugs in development right now, any one of which could be proven to help save the lives of Canadians living with ALS. The problem currently is that it takes too long for drugs to be evaluated and made available to Canadians.

For people living with ALS, the health system just doesn’t move fast enough.

When you’re living with ALS, you measure time by loss, not by months or years. Which ability will you lose tomorrow? Will you still be able to share a hug? Say I love you? Laugh? Breathe?

How long before time runs out?

Across the country, people are fighting for more time together, to laugh, to love, to live.

This ALS Awareness Month you can join them. Click on the button below to send an email to federal party leaders today, with one simple click, you can let them know that it’s about time to provide timely, affordable and equitable access to tomorrow’s proven treatments.

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.

​

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.

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.
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Read about this new partnership in a press release published by Bloomex Canada: https://bit.ly/2Cw1lIZ

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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! 
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For information on an Orangetheory Fitness studio near you, visit their website and get involved this year: https://bit.ly/2FRE1HT

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
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Hope to see you all there! 
#trivianight #fundraiser #runsmartgivebiggar #myottawa #ottcity#aFutureWithoutALS

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.

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.

Let's Roll.

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.  

THANK YOU!!!

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: