On October 3rd, more than a hundred of Carol's nearest and dearest safely gathered in person at Venue TwentyTwo at The Westin Ottawa to celebrate her life, love and laughter. Many others from around the world were with us in spirit - some highlights shared here for you to experience as well.

Much appreciation to Sean for photographing the day and Madeline for recording the remarks; thank you all for sharing your photos for the "big screen" and joining us in celebrating our Carol.

Carol introduced this blog with the quote: “In the end, it's not going to matter how many breaths you took, but how many moments took your breath away.”  She embraced that fully, not only following her diagnosis, but her entire life.

With heavy hearts, we share that Carol passed away on January 31, 2021.

For over seven years she shared her ALS journey on this forum -- and -- there’s so much more to Carol than you may know. She has always been a committed advocate and champion for those needing a voice: this was her DNA long before her diagnosis.  And much as she was proud of her advocacy, she didn’t want to be remembered just for ALS. And how could we when there was so much more to her? Whether rejoicing in nature at Kamp Kanawana, serving as Camp Hayward Director in Cape Cod, teaching in Saint Maarten, or facilitating groups with concurrent disorders at the Canadian Mental Health Association in Ottawa, this McGill graduate and certified art therapist brought joy to so many.  Beloved wife, daughter, sister, aunt, and friend, she was vegetarian for decades and animal lover too - the “C’ in Carol surely stood for caring, always all ways.

She will be dearly missed by her extended family and friends around the world; all those in the ALS and mental health community, YMCA camp world, McGill and Kappa networks, and every place she lived and loved.  Still 49 years young, the scope of her loved ones is too numerous to mention here.

​No matter what “next” you believe in, it’s comforting to think of Carol with brother Don, cats Cookie and Nemo, sharing tea (or champagne!) with Granny, and planning her next trip. We wish her great music,
delicious food, and satisfying cards and puzzles.

We’ll miss you Carol, our lives were better for knowing you, no matter how short that may have been.

Please keep Travis, Dory, and Buddy in your thoughts; and at such a time when it’s safe to be together again, we look forward to hugging and celebrating all things about our sweet crown-wearing princess and great surpriser, Carol.

If you would like to continue Carol’s legacy of caring, donations in her honour are gratefully welcomed at:

• ALS Society of Canada
• Kappa Kappa Gamma Rose McGill Financial Aid
• Your local SPCA / Humane Society

​Let’s remember how much awareness was raised with the ALS Bucket Challenge - we encourage you to be inspired by Carol’s life and take action. As we learn from one of Carol’s favorite characters, Ferris Bueller: “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.” What are you doing to live, love and laugh for your best life?

Very excited to introduce a new patient led initiative whose mission is to improve access to promising ALS therapies in Canada.

Please consider getting involved and check out our brand new website by clicking the button below!
​

Travis and I have big news to share with you...we bought a house!

This is an unbelievable dream come true for us and one we never thought possible.

When I was diagnosed with ALS in 2013, we were told I had 2-3 years left to live, and since we were living in a 3 floor walk up with a loft, I would need to move into accessible housing right away.  It was devestating to have to sell the first home we owned together.  We moved into a "luxury rental" that met many of my accessibility needs.

Cut to 7 years later and I'm still here!  My only regret was that instead of buying a bungalow when we sold our condo we have been paying very high rent.  Of course, we had no way of knowing that I would be in the  10% of people living with ALS who survived past 5 years.  I began to fear that I was living too long! 

When Travis was laid off this March due to the pandemic, we feared we wouldn't be able to afford our rent.  It really made us rethink where we were at in this stage of our lives together.

During the past seven years, Travis & I have been fortunate to have spent much time travelling together and living in an apartment was convenient and made sense during that time.  As travelling became more and more difficult for me we realized that it was no longer an option, in fact, our last trip was to Antigua in January of this year.  Instead of being depressed that I can no longer travel, I feel that we made the most of our opportunities while we could and I am so full of appreciation for the places I've been able to go.  As well, it made it much easier to come to this decision while the whole world was also not able to travel!

While Travis was laid off we had the time to think about our future together (and as someone living with ALS, "future" can sometimes feel like a dirty word).  As we discussed our worries over paying rent, we thought, as least if we had to pay for a mortgage, we would still be paying ourselves.  As we took walks around our neighbourhood we started dreaming of owning a home with some property for Travis to be able to plant a vegetable garden.  Somewhere along the way we thought "why can't we make our own dreams come true?".

When Travis was rehired the search was on.  Of course we sold our condo during a buyer's market and now we were looking for a house during a seller's market and during a pandemic no less!  In fact, the Ottawa housing market was one of the few places in Canada where home prices INCREASED during April and May.

We also had the disadvantage of requiring very specific needs for a house.  It had to be a bungalow with no stairs inside.  We wanted a property though wanted to make sure that I wasn't going to be isolated.  We didn't want to be too far from Travis's work.  We needed an ensuite with a walk-in shower.  Let's just say the odds were not in our favour!

Thanks to our dedicated Real Estate Agent Karen Cayer from Keller Williams Integrity Realty who sold our condo and understood our needs better than we did, we found our forever home.  It has a beautiful yard, deck, fireplace and even a sunroom! 

We close at the end of August and move during the month of September (Travis will need to install a few ramps for me to get into the house), with our final moving date with a truck for the big items on September 27th.  If you would like our new address shoot me a text or an email.

Thanks to all who have supported us during this time.  I thought people would think we were crazy to be doing this with my condition, but everyone has been so encouraging.  

Travis and I are embracing the next stage of our adventure together.
​

The Ottawa housing market is so crazy, a home buyer's letter is recommended.  I thought you might be interested in ours.  So grateful our offer was accepted.

I'm not sure what happened to March, April & May, but we have arrived somehow to June!  And you know what that means, it is ALS Awareness month!

I'm still here - somehow I am one of the lucky ones (depending on your definition of luck) did you know that only 20% of people living with ALS live past 5 years after diagnosis, and only 10% live past 10 years?  I am in my 7th year living with ALS.  You have a 1 in 300 lifetime risk of developing ALS.  The reason some people call it a "rare disease" (it's not) is because people living with ALS die so quickly so there is not a high population living with the disease at one time.

Check out the Quick Facts below to learn more about ALS.

On ALS/MND Global Awareness day, June 21, we are participating in ALS Canada's Virtual Walk to End ALS.  Of course this is a difficult year for all of us, and charities for the most vulnerable are particularly struggling, so if you have anything to give, it would be forever appreciated!  Please click on the button below if you would like to sponsor me, I will be rolling for you on the day!

As many of you are probably aware, this year's Walk to End ALS in Ottawa scheduled for May 30th has been cancelled.  I'm very disappointed as we had a big group of Living Loving Laughing Walkers ready to join us!  Of course it is the right decision and we are not giving up.  All Walks across the province have been rescheduled as a VIRTUAL Walk for June 21 which is ALS/MND Global Awareness Day.

Although we can’t walk together physically, we can still stay connected and have fun with our teams. We are all in this together!

The Walk to End ALS is ALS Canada's main source of fundraising.  There is NO Government support and as you can imagine this is going to be a tough year for fundraising.  As a person living with ALS I cannot tell you how much Travis and I rely on the support of ALS Canada.  They have provided us with equipment, mental health support and most importantly HOPE through providing funding to the most promising research.  If you can help in any way, THANK YOU!  No effort or donation is too small.

If you would like to donate to the 2020 Walk to End ALS please click on the "Donate" button below.  If you would like to join our Living Loving Laughing Walkers team and participate in fundraising, please click on the "Join Our Team" button below and you will be directed to our team page, where you click on the Join Our Team button on the page to register.

Shout out to Clementine Nuñez for being the first to Join our team and make a donation!

  
As a result of the continuing global uncertainty caused by the Covid-19 pandemic, the MND Association has taken the very difficult decision to cancel this year’s International Symposium on ALS/MND. This follows detailed consultation with the International Alliance of ALS/MND Associations and our 2020 hosts
ALS Canada and ALS Quebec.
​
We have considered many factors over recent weeks, including the potential for global travel, rules around gatherings and social distancing, and the financial implications of the various scenarios open to us. Of course, none of us can be sure what restrictions will be in place in December, when the Symposium was due to take place. It was that lack of certainty which became the overriding factor in our decision-making. By cancelling now, we have limited the financial risk to the MND Association at a time when, like many charities, we are facing a considerable fall in income.

We appreciate how disappointing this news will be to all of those involved in supporting and attending both the Alliance meetings and the Symposium over recent years – we share your disappointment.

Our teams are now working hard to create alternative opportunities to exchange the latest exciting advances in research and clinical management and to ensure global collaboration continues. Our current focus is the creation of a Virtual Symposium later this year – we will bring you more details on that over the coming weeks.

COVID-19 : IMPACT ON RESEARCH AND CLINICAL TRIALS GLOBALLY AND RISK FOR PEOPLE WITH ALS/MND

On Thursday, April 9th a webinar with leading ALS/MND Global Clinicians and Researchers took place.

COVID-19 and its impacts to the ALS/MND Community have been felt globally. This webinar answers your questions about susceptibility and ALS/MND, care, and the impacts to research and clinical trials.

The link to view the recording can be found below.

Moderator: David Taylor
​
Panelists: 

• Dr. Merit Cudkowicz
• Dr. Angela Genge
• Dr. Jonathan Glass
• Dr. Matthew Kiernan
• Dr. Leonard van den Berg

Below is a link to a paper from The Ontario Caregiver Organization on COVID-19 precautions caregivers need to take:

Below is a link to a paper providing advice on COVID-19 from the Ontario Neurodegenerative Disease Research Initiative:

On March 10, 2020 I was included in a group of community advocates who called on the Canadian government to acknowledge and support the devastating impact ALS has on Canadians.

It was an honour to be a voice for the ALS community on Parliament Hill.  We met with MPs to call on the government to make substantial changes to Canada's drug access process and to fund ALS research that will lead to effective treatments.

We advocated for the government to help Canadians access innovative therapies faster, and to be a partner in funding dedicated ALS research such as CAPTURE ALS.

We asked our MPs to join the ALS caucus as well as to write a letter to the Minister of Health in support of these asks.

This same week Parliament was shut down due to Covid-19.  I implored our dignitaries to not forget about those of us who are dying from ALS when we get through this pandemic.  If the Canadian government cares about the health and safety of Canadians why are those of us living with ALS left behind, without any government support for the ALS Society of Canada?

Check out all photos on the Gallery Page of my Blog.

#ALSAdvocacyInAction 
#AccessforALS
​#aFutureWithoutALS

The ALS community was honoured in the House of Commons on March 10th by our long-time friend MP Francis Drouin. We’re grateful to MP Drouin for delivering a Members Statement that thanked many ALS advocates (I got a shout-out in Parliament!) for their important work in bringing forward the voices of the ALS community to Parliamentarians.  (He begins in French and then switches to English).

On March 10th, MP Matt Jeneroux welcomed our community to Parliament Hill and spoke about the important perspectives of Canada’s ALS community in the House of Commons. He highlighted the urgent need for the government to better support people and families affected by ALS and to work towards #aFutureWithoutALS. 

The Today Show featured the new Google Technology called Project Euphonia.  It is so cool and I'm proud to be a voice contributor to this research!  Click on the image above to watch the 5 minute video.

If you are living with ALS and are interested in contributing to important research such as this, you can enroll in the ALS Therapy Development Institute's Precision Medicine Program (PMP) by clicking the button below.

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. 
​
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.
​

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.

​

​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.