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.

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  

​

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.