Live Love Laugh with Carol

Thank you to my awesome team, the Rolling Stones! (Tom, Dasa & Laura)

What a fantastic day we had at the 5th Annual Curling for Carol Bonspiel. What an amazing group of people who showed up, everyone was so friendly and it was so fun to have it on St. Patrick's Day!

A huge thank you and shout out to Robin, without her this event would never happen. Robin was committed to having an Annual Bonspiel, and for anyone who has ever organized a charity event, you can imagine how much work is involved. I joke that she didn't know what she was getting herself into 5 years ago by insisting upon making it an annual event, as I wasn't supposed to live this long!

Also a big thank you to Coralee who handled so much of the behind the scenes and registration, and does it all with such enthusiasm. Robin and Coralee are so busy working the event, they never even have a chance to curl!

Of course thanks to Brittany and Conan for doing an amazing job of getting so many teams signed up!

Thank you to all of the teams who participated. You are truly a unique and energetic group of people!

We had an incredible array of prizes this year. Thank you to our sponsors and to Brittany, Mom & Dad for pounding the pavement for raffle donations. I think we sold an unprecedented amount of tickets this year, I mean, who could say no to mom & dad???

Thank you to my amazing CMHA peeps and partners, and new friends I met at the event.

Thank you to everyone who donated, helped out and supported us behind the scenes. Because of you we raised $2900!

This event came at the perfect time for me. It happened when I was feeling quite down, hopeless and dejected. Not only because winter is a particularly difficult time, it's tough to get out in the snow and cold. But also because if you read my #forgottenbutnotyetgone blog post, you'll know that despite advocacy efforts $0 of the 2018 Federal Budget went towards research for ALS. It was particularly frustrating due to the unanimous all-party decision to vote in favour of Motion 105 back in April, where they voted to combat ALS by funding research and to launch a comprehensive strategy to eradicate ALS at the earliest opportunity. All talk, and no action.

It is grassroots efforts and community funding through events like this that will continue to make a difference in the lives of people living with ALS. Whenever I feel like giving up, it is people like you who won't let me! So thank you all for your love and support, I certainly wouldn't be here without you.

We even made the news this year! If you click on the button below, it takes you to the right news page, however, you must click on the Saturday March 17th video to see us curling! We are at 23 minutes and 10 seconds. Beautiful form Sean, Travis says you should be expecting a call soon from the Canadian Olympic Committee!

CTV News

4 Comments

Stephen Hawking 1942 - 2018

3/14/2018

Stephen Hawking was not only a genius and a legend, but someone who was known not because he had an ALS diagnosis, but for the man he was.

Please check out the article below written by Leslie Young. Fabulously done, make sure to click on the "listen" button to have a small Professor Hawking experience. It is an honour to be quoted and included in one of his many tributes.

I have also included an interview with John Oliver, so we can share in his fabulous sense of humour.

Global News Article

4 Comments

#forgottenbutnotyetgone

3/3/2018

Federal Budget Highlights

On April 6, 2017, M-105, a bill introduced by MP Judy Sgro seeking ALS research support from the Federal Government passed unanimously with a 283-0 vote. The text of the motion states: That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House: (a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and (b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity.

After participating in the first ALS Caucus meeting in October of 2016, and meeting with then Minister of Health Jane Philpott that same winter, I knew it was improbable that ALS would receive funding from the Canadian Government in 2017 as it would take time. However, my hope was renewed after the above mentioned motion was passed unanimously. I mean, how often does government of all parties come together and unanimously support any cause? So when the Federal Government came out with budget 2018 this past week it felt like a punch in the gut when despite an 18.1 billion dollar deficit, there is $0 invested in ALS research. I don't understand, what is the point of a motion passing if there is no action to accompany it? The bill states "at the earliest opportunity", that opportunity came and went with the Federal Budget 2018.

It took my breath away, as does ALS.

I am heartbroken as I felt like all of my advocacy work was for nothing. I'm not sure why thousands of Canadians dying by slowly becoming paralyzed bit by bit, becoming "locked in" as you see in horror movies is not shocking or dramatic enough to become actionable by our first world government. Of course if there was a plane crash or terror attack, unlimited funds would be available to address Canadians dying. I feel #forgottenbutnotyetgone

I am aware, and do appreciate that our government has invested a large amount to Neuroscience. But there is no guarantee that 1 dollar of that will go towards ALS research. Of course any brain discovery may help lead to new revelations about the cause and/or treatment of ALS, but that is simply not good enough. Without targeted ALS Research, Canadians will continue dying in a terrifying manner every day, including myself.

I'm not quite sure what else I can do in order to advocate to our government, but thanks to the incredible support I have received since posting my frustration on Facebook, I promise I will keep fighting as best I can. Unfortunately that means continuing to ask friends, family and communities to persevere with fundraising on a grassroots level, even though you have all given so much already.

Travis's thoughts:

Everyone that takes the time to advocate and donate to ALS today is starting something big for tomorrow.

The Canadian government clearly wants to sit back and take their time, slowly going through the protocols of day-to-day politics, but ALS is urgent. ALS is “now or never”. Unfortunately, like with all diseases, there is a discovery stage. Time is needed to realize that it exists, time is needed to find out what it does, and time is needed to find out what needs to be done.

There is only one way to combat ALS and that is for dedicated, targeted research.

This takes enormous amounts of funding. Funding that the Canadian government is sadly not willing to give, at least not yet.

2018 comes with the frustration that our government does not see the urgency for those living with this disease right now. This does not mean that there is no point in advocating and bringing awareness to ALS. We are at the beginning of the race. Sadly those that we know with ALS currently may not make it, but it is important to think to the future, ironically something that an ALS diagnosis takes away.

Government funding for anything takes a long time and needs continuous commitment from those who want it. Until then everyone that has taken the time to advocate and donate to ALS now can hold their heads up high and know that they are at the start of something big. YOU are at the start of what is going to be the cure for ALS. It is not a matter of “if” but “when”.

Click on the button below for the highlights of the 2018 budget from a CBC news article.

I have posted the announcement and response from ALS Canada, as they are always more eloquent in expressing the cause then I am.

Yesterday Finance Minister Bill Morneau tabled the 2018 federal budget. We are encouraged by the increased federal support for fundamental research and #Budget2018’s commitment to science and innovation, yet disappointed not to see any dedicated support for #ALSresearch. This has been a focus for our advocacy efforts because of its potential to get us closer to a future without ALS. We will continue to push for this tremendous need through various channels within government and will keep up our engagement with key government stakeholders on issues of importance to the ALS community.

We are hearing from so many of you about your frustration and disappointment in not seeing any dedicated funding for ALS research in the 2018 budget.
Even though we didn’t see what we had hoped for, we don’t have to stop making our voices heard.
We are continuing to meet with government to push for dedicated ALS research funding to fulfill the commitment in M-105.
You can add your voice by reaching out to your MP as well as Heath Minister Ginette Petitpas Taylor and Science Minister Kirsty Duncan to let them know #ALSresearchmatters to you, and that any funding for neuroscience research should include dedicated funding for ALS research and support for Project MinE through Genome Canada. Tag ALS Canada and use the hashtag #ALSresearchmatters.
The voices of our ALS community have power, and we can still make change happen.

4 Comments

Tigers

2/13/2018

Just to prove I live with a tiger!

Travis & I are back from an amazing cruise with my parents. I've put the route on the travel page and will blog about it, but right now I'm recovering at home. It takes my body at least a week to feel better after travelling, sorry if I've been incommunicado, but slowly getting back to life.

Ready for Spring now that I've had a taste of the heat!

Stay warm! xoxo

2 Comments

My Daughter Has ALS

1/26/2018

5 Comments

That is my Grandad, Arthur Sharman on the camel!

Dad spent months writing a paper on a father's perspective on having a daughter living with ALS. We would love to share it with you, click on the button below to read the online copy or feel free to download.

My Daughter Has ALS
A Father’s Journey

Peter M. Sharman
Ottawa, Ontario Canada

January 2018

Table of Contents
1) Introduction
2) Our Daughter Carol
3) ALS and the ALS Society of Canada
4) Carol’s Diagnosis and How She is Today
5) What I Know but Don’t See Daily
6) My Thoughts After 4 Years Since Diagnosis 7) Her ALS Society Activity Today
8) Family and Friends
9) Fundraising and Government Support
10) Research
11) What Can I Do for Her Now?
12) Summary

My Daughter Has ALS

my_daughter_has_als_final2.pdf
File Size:	22315 kb
File Type:	pdf

Download File

5 Comments

5th Annual Curling for Carol Bonspiel

1/22/2018

Saturday March 17, 2018
11:00 AM – 4:00 PM EDT

Tickets: $30

Nepean Sportsplex
1701 Woodroffe Avenue
Ottawa, ON K2G 1W2

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.

Curling for Carol
Organizer of 5th Annual Curling for Carol Bonspiel - ALS Fundraiser
When our coworker, Carol Skinner, was diagnosed with ALS, we knew we wanted to develop a fundraiser that would both raise funds to help offset the enormous costs that would be coming her way but to also spread awareness throughout our community. We are very pleased that 50% of the proceeds go directly to ALS Canada Research Division. When funds are earmarked for research, none of the funds are diminished by administrative costs. We are hoping that this is the year we will be able to surpass $10,000 raised by this event.

ALS research is not funded by the federal government. Funds are only generated by fundraisers across Canada. For more information on how ALS spends your money go to: https://www.als.ca/research/als-canada-approach/

Location

Nepean Sportsplex
1701 Woodroffe Avenue
Ottawa, ON K2G 1W2

1 Comment

Online Clinical Trial

1/10/2018

3 Comments

Since my diagnosis, I have been interested in participating in clinical trials for ALS. Not for myself, I understand that 50% of the trials are placebo, and we are still a ways off for any effective treatment of ALS (though I do believe in miracles!). But I have always felt that you cannot complain about anything without being part of the solution! I actually qualified for a clinical trial in Montreal, however, it meant travelling to Montreal every two weeks and I could no longer travel on my own. The good news is that Ottawa will be getting a "Centre of Excellence" with an ALS specific neurologist who will initiate trials in Ottawa, though we have been waiting for this for 2 years now. In the meantime, I am participating in an online clinical trial with the American ALS Therapy Development Institute. Every month or so they record my voice sample of "I Owe You a Yo Yo Today", and I complete an ALS-FRS-R (Functional Rating Scale). I received a very nice thank you letter for my participation and thought I would share it with you.

Hello Carol,

This is a note to say thank you, but I confess that it feels inadequate.

At the start of the Precision Medicine Program, we asked you to share voice samples with us. We told you that if we could learn to sensitively detect changes in your voices, we might be able to sensitively measure treatments that were helping those symptoms. This would ultimately help ALS researchers and doctors find treatments that work. We had no idea how we were going to do it, but we knew we’d never figure it out without first collecting voice samples.

For months, maybe years, you’ve called into a phone line hosted by us at ALS TDI to share your voice samples. You may have wondered if anyone was even listening to the recordings. Our clinical and research teams have listened to nearly every single one.

As we’ve listened, we’ve been reminded of one of the key ideas underpinning the Precision Medicine Program: that no two ALS experiences are exactly alike. In listening, we haven’t just heard ALS symptoms in your voices, we’ve heard your diligence, your frustration, your determination, and your humor.

In the past year, we partnered with researchers at Google to learn how to use these data. We’ve shared nearly 10,000 recordings with them. The Google team uses automated machine learning algorithms to parse the data embedded in the voice recordings.

It turns out Google has some smart folks! They’ve made real progress in tracking bulbar ALS symptoms. We are so excited about where the collaboration will take us, not only because of their know-how, but because of their team’s compassion. Like us, their team has listened to the voice files personally and were touched and motivated by what they heard from you.

You’ve told us, month after month, that you owe us a yoyo. Nope. You don’t owe us anything. We owe you our gratitude and so much more. We owe you progress and results. We’ll get there together.

Thank you.

Sincerely,
Fernando G. Vieira, MD
Senior Director of Preclinical Research
Co-Principal Investigator, Precision Medicine Program
ALS Therapy Development Institute

ALS TDI PMP

3 Comments

ALS & The Holidays

12/21/2017

Donate Today

As someone living with ALS, the holidays are an emotional time. I feel so grateful to still be alive to spend time with my family, but it’s also difficult knowing that my life will never be like it once was.

I’ll always enjoy watching those I love having holiday fun. However, due to my limited mobility, I’m no longer able to help chop down the perfect tree, go shopping for presents or put up decorations around the house. ALS has changed everything for me, and for my husband, Travis.

"Four years ago when Travis and I first heard from my neurologist that I had ALS, we were in absolute shock. It didn’t make sense. I felt healthy, did yoga regularly and enjoyed travelling. At only 41 years old, how could I have a terminal neuromuscular disease that doesn’t have a cure?"

Since I’ve been diagnosed, I haven’t worked. I use a wheelchair. I also struggle with constant fear. How will I possibly cope when my muscles deteriorate to the point that I have full-blown paralysis and can’t breathe on my own? This is what ALS does to a person’s body, and unfortunately, it’s also what my future will look like.

Right now, ALS research is extremely underfunded. It’s a devastating disease, and there is no cure. My wish this holiday season is that more funding can go to the many promising research studies underway. ALS Canada relies on donor support to back this research that could lead to new treatments.

Please find it in your heart to help everyone else across our country who is living with ALS by making a donation today. With your help as a donor this holiday season, new insights could be discovered and this disease could become treatable, and not terminal.

One thing about living with ALS is that you realize that each and every day is a privilege. To me, the New Year is another important milestone and 2018 will bring fresh possibility, opportunity and hope for a future without ALS. One of the best gifts you can make this holiday season is making a donation.

With warm wishes,
Carol Skinner
Living with ALS

Donate Today

About ALS
Amyotrophic lateral sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

About ALS Canada
As the only national charitable organization that invests in ALS research across Canada, ALS Canada funds high-quality research that offers the most promise to slow down ALS or even stop it. Within Ontario, ALS Canada has a role similar to that of the provincial ALS societies providing services and support to help meet the needs of people living with ALS. We are a registered charity that receives no government funding – all of our services and research are funded through the generosity of donors. Visit our website for more information.

1 Comment

Cherish

12/1/2017

7 Comments

This is my fourth Christmas after my ALS diagnosis. This was the one I was most afraid of. Because of course my mobility is getting more difficult by the day, and living in Ottawa, the winters can be a nightmare. When it snows, I am stuck inside. I do have my power wheelchair, though the snowbanks on either side when I'm trucking along the sidewalk are often higher than me, and when I reach the end, of course a street snowplow has come along and pushed snow against the end of the sidewalk creating a wall impossible to cross. I am waiting for someone to invent a snowplow wheelchair so I can make my own way! Due to lack of circulation, my feet often turn purple, and the cold literally shuts down my body. At Christmas, I miss my brother, I miss my Granny, I miss Nemo.

But my attitude has changed. We are headed to Newburgh to see Heather & Andy, and they are coming to visit us in December as well! It is my parents and my cousin's first Christmas in Ottawa. Travis & I are going to a Christmas Tree Farm in Pakenham to choose a tree, and he has learned his lesson about not sawing through knots! Good friends joining us Christmas Eve, and mom's Christmas apps (as in appetizers not iPhone icons) are what make me happy. So despite my initial fears, I can't help but be excited about the season. Travis maybe not so much as he has to put up with me telling him exactly in which spot to put the ornaments ("in front of the light!", "the little ones at the top!", "the polar bear beside the picture of Nemo!") and again cooking over 200 turkeys at work. Nevertheless, we know the importance of cherishing moments and appreciating what we have together. With so many friends and family to celebrate the season with, this is what I most cherish.

We wish you a happy, healthy and joyous holiday season, full of appreciation, laughter and love.

For those who are interested, check out the ALS Canada Holiday Campaign featuring Travis & I on the media page of this blog.

Santa Travis and Santa Nemo sharing the love!

7 Comments

Making Moments Matter

11/17/2017

If there is one thing I would love for others to take away from my experiences in living with ALS it is to appreciate what you have right now and enjoy the moment! Having just lost two work colleagues whom I truly admired in 24 hours to cancer, it is a stark reminder to live your life now and don't wait to make your dreams come true.

Although I am saddened daily by the things I can no longer do (I had to open the milk with my teeth this morning), I never for a minute regret the amazing life I have lived and people I have met along the way. I try to always appreciate what I have, as opposed to grieving what I don't. For example, it's been awhile since I've been able to bend down to the floor, the positive side is that I no longer have to clean up cat vomit!

One thing that has made an incredible impact for Travis and I is the Direct Funding Program of Ontario. The program has enabled us to hire a caregiver who helps me get up and going in the morning. They help me with breakfast, showering, dressing, laundry, dishes and even my mental health. I was stubborn in the beginning, not wanting the help, of course I would rather do things myself, but the truth is I can't. I've realized how much I need it and don't know what I would do without it. What a wonderful country we live in. I'm so grateful for Canadian healthcare and the compassionate people who work in this industry.

Of course advocacy has played a huge role in my mental health. I have been connecting with some families living with ALS to try and be a support for others. If you can use even a small part of yourself to help others in this world, I promise that whatever you give, you will get back tenfold, and make the world a little bit better while you're at it.

A few weeks ago Travis & I went to go and see the leaves in Gatineau Park. We picked up Subway to have a picnic at a lookout with views, though when we arrived we discovered they had closed the roads for the season! Instead of being disappointed, we decided to keep driving to Wakefield as we had never been there. We ended up having a gorgeous French lunch at the Wakefield Mill. It pays to turn disappointment into adventure!

I've been appreciating the moment as best I can by taking advantage of sunshine, puzzling, making time to see friends, and of course playing with my cats.

If I'm having a hard time living for today, I try having something to look forward to, to keep me going. Right now, that is Travis's birthday, hopefully a weekend getaway with friends in December to welcome the holiday season, as well as upcoming travel plans that I have posted on the travel page of this blog.

If you are interested on the latest ALS research updates, check out the link below.

ALS Research Webinar

Wakefield Mill

Travis wasn't giving Buddy attention, so he jumped on his shoulders!

This was a new puzzle, I'm sure Buddy made off with the missing piece!

2 Comments

4 Years and Counting...

10/18/2017

7 Comments

Solar Eclipse

Sorry it has been awhile since my last post! That is not necessarily a bad thing, however, as being busy means that I am living life!

I've been stuck on that first line. As I read it, it feels real but not entirely true. The truth is that my ALS is progressing. What that means to me is that absolutely everything I do is hard. Frustratingly hard, and it is a difficult thing to live with the knowledge that it is only going to get worse. My body feels extremely heavy, and I feel a lack of motivation and clarity in my brain from feeling exhausted all the time. The truth of the matter is that I haven't written a post because I have had a hard time finding a way to write honestly, thinking that no one wants to hear the miserable side of things, but writing only the positive does not feel truthful. I am generally a positive person, and feel best about myself if I can be inspiring to others. When I feel sorry for myself I don't feel very inspiring. And I think of the ALS heroes who never seem to give up on their quest for advocacy and a cure. Travis always tells me that what we don't see is their personal struggle. Because of course they have dark days. Miserable, self-pitying, depressing days. And that is okay, because that is our reality.

But then several of you have reached out to me, a few people I don't even know who have told me that they enjoy reading my blog. So instead of not writing, I will continue to share the bad with the good. I just can't help it, I am honest to a fault.

Travis & I had an amazing time in August in the Okanagan visiting with Kate, Malcolm, Keith, Tania, Rolo & Karma! As we had a particularly wet summer in Ottawa, vacationing in Summerland was our summer. It was above 30 degrees everyday, my kind of weather, my body works so much better when it's warm! Travis's cousin Ben came for a visit, as did my cousins Debbie & Michelle. We ate peaches, saw 54-40, visited vineyards, a lavender farm and even dared to swim in Lake Okanagan with Ogopogo! The most special part was of course spending quality time with family, before my amazing niece was to leave for University to study nursing! For more you can visit the Travel & the Gallery page of this website.

Not long after we returned from Summerland, we were blessed with a visit from Heather & Andy (of course we had too much fun 'nuff said)!

Travis's parents came all the way from New Zealand to stay with us for the month of September. We had incredible weather and a great time visiting Mosaïcanada 150. Travis & his parents went on a road trip to Toronto where they saw Rodriguez and joined the Toronto walk for ALS, while I saw Jack Johnson in Ottawa. We spent great quality time together and enjoyed every moment. Check out pics from the Skinner's time in Canada on the Gallery page.

A Night out with my girls, Brittany & Katie

Jack Johnson

Unfortunately, I came down with a case of sinusitis which layed me flat for several weeks. When I'm sick, I have zero energy reserves, so it feels pretty miserable. Which is why I'm an advocate for the flu shot. Even if you feel that you never get the flu, you can carry the strain without symptoms and pass it on to others. For more info: www.cdc.gov/flu/about/qa/misconceptions.htm

There have been many anniversaries lately, and with that many ups and downs. September 19th was the 4th anniversary of my ALS diagnosis. Happy to still be alive, but sad as I don't want to live in paralysis. Happy I'm not there yet. Sad at what I've lost thus far. Happy that I am not alone. Sad at the loss of a future. Proud of my past.

We celebrated mom's birthday with family and finally gave her a South African Braai!

September 29th was our 8th wedding anniversary, making it 14 years together! As you are all aware, I could not do this without Travis. He is the most loving, patient, and compassionate caregiver anyone could ever hope for. But no one wants their spouse to have to be a caregiver. Travis lives with a sense of humour, an incredible work ethic and an endearing personality. As with others living with ALS, it is difficult to not feel like a burden to your person. I feel as though I no longer contribute to the household, and I cry, I cry a lot. But Travis never makes me feel like a burden. He makes me feel like his wife, and appreciates every day I stay alive for him.

October 4th was my brother Don's birthday. Taken too soon, we miss him everyday.

We celebrated Thanksgiving at Al & Jeannie's with their lovely family and again feel so grateful about the people we are surrounded by.

As our busyness slows down with the fall weather, I now have more time to spend with friends, and to plan for future travel. Though travelling has become more difficult, I'm not ready to give up on it yet!

7 Comments

Down Times for Good Times

8/1/2017

ALS Canada 2016 Annual Report

The following quote is borrowed from a PALS (person with ALS), I would like to say "Ditto!"

Family and friends
I have a chronic illness
My days are long and hard.
I don't look sick, but I am.
I want you to know I
Am trying my best, I have
Days I can do some things
And I have Days I can't.
I want to work, socialize,
And participate in my life
I want you to know that I
Am not lazy or crazy. I am
Not looking for sympathy or
Pity, I just need your support.

Me: except the crazy part, I can be a little bit crazy, I own that!

The frustrating part of having a terminal illness is that you want to make the most of the time you have left and live life to the fullest, however, your body refuses to co-operate!

I find that many people tell me how good I look and that if I were sitting down they couldn't even tell that I have ALS. But the truth is, I am probably seeing you after having a full day of rest. In fact, there was a point when I was too scared to make any plans, not sure how I would feel on the day. ALS is a disease that brings good days and bad, although I'm getting progressively weaker, some days I feel stronger than usual. My good friend Jeannie once told me to always make plans, regardless of whether or not I'll be able to show up, because the alternative is not doing anything at all, and that's just not me. The difficult part is that the guilt of cancelling eats me up, I've always been the type of person who does what she says she's going to do. As my dad would say, I'm a "doer" not a "talker", and I was proud of that. Another aspect of my life that ALS is stealing from me. So to try to assuage my guilt, I am letting you know, that if I cancel my plans with you, it's not you, it's me! I try to avoid this by planning rest days before and after events, and not planning anything that takes over 4 hours. If I don't, I pay the consequences with what I call a "crash". To me, a crash is when I've overdone it, so my body breaks down, cramping and pain sets in, nothing works, and my mind turns to mush for about 24 to 48 hours.

Traveling often causes a crash, so I have learned a few lessons. Travel days are rest days, plan nothing else. Plan a rest day before and after traveling. Do NOT plan a stopover in the US. Only direct flights, or a stopover in Canada. Try to get extra legroom seating. No matter how much a pain in the butt it is to go to the bathroom when you are in a wheelchair, do not wait for more than six hours before going or you will get a UTI. And throw all of that advice out the window because no matter what you do, travelling will cause a crash. Just deal with it and keep living your life to the best of your ability!

Travis and I have been making the most of my good days by taking a mini-break in Algonquin Park, thanks to my Granny, and we named the sweet chipmunk Granny and the cheeky chipmunk Grampa. Mike & Wendy came to visit, Travis is growing a forest on our balcony, and we went to see Dunkirk with mom & dad. We've been seeing friends and family and have plenty to look forward to. We are heading to Summerland for a true Canadian vacation as we are there during "Peachfest"! And Travis's parents are coming to visit for the month of September!

I hope you are enjoying your summer and appreciating every minute you can!

For those who are interested, I have posted the 2016 ALS Canada Annual Report on my gallery page, you may see some familiar faces! Or you can read it by clicking on the button below.

Travis Whisperer

Chippie Selfie

Tomatos, cherry tomatos, red peppers, habanero peppers, basil, lemon thyme, sage

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150!

7/1/2017

Chesterfield's gastro diner

Feeling patriotic, Happy Birthday Canada, from our balcony!

Although it was a wet one, Canada celebrated in style! I am so proud to be Canadian and especially lucky to be alive for Canada's 150th birthday. Due to crowds and rain, Travis & I watched the celebration from the comfort of home, but thought they did a great job on Parliament Hill. We didn't even stay awake for the fireworks, oh well, we will celebrate Canada by being in Algonquin park next week with moose, loons, geese, chipmunks, red squirrels, blue jays, etc. You can't get much more Canadian than that! I received a wonderful gift from my Canadian hometown of Montreal, they signed Carey Price to our Habs for the next 8 Years!

I began receiving home help last week. It takes some getting used to, needing someone to shower you and be in your space. I am very grateful for the service, however, I don't want to have to need it, if that makes any sense! She has been wonderful in helping to make breakfast for me, and doing things that I can no longer do such as washing the sheets, doing dishes, and massaging circulation back into my feet and legs! It is still at the awkward stage (at least for me), but I'm sure we will get more comfortable as we get to know each other. Though I'm not sure if she will ever get comfortable with Buddy, he is even more demanding of attention than I am!

My parents & I had a great visit with Keith, he definitely brought the sunshine, in fact, I think he took it back to Calgary with him! We had long walks in the sun, visited with friends and family and celebrated father's day with sushi & Canasta.

Travis & I just came back from a great brunch with my Kappa Sister Sally and her husband Steve and their two boys, Ryan and Alex. They live in Shanghai and we actually met up with Steve in Singapore a few years ago. Sally & I won't share how long it's been since we've seen each other because that would date us! It was hilarious to see their sons go through my McGill photobook with young pictures of their parents, of course Sally & I haven't changed a bit!

Despite the overabundance of rain we've had this year, Travis & I are able to make the most of summer. Aunty Wendy & Mike are coming to visit this week, then we're off to Algonquin and then Summerland in August. It is so much easier to go out in a wheelchair when you don't have snow to navigate, so I am taking advantage of every opportunity.

What will you do to celebrate Canada? Eat poutine? Feed a squirrel? Drink a beer? Play street hockey?
Enjoy, we sure will. At this time are especially thinking of our veterans who fought and fight for our country and allow us the freedoms to love and accept each other as Prime Minister Justin Trudeau said "not in spite of our differences, but because of them", awesome!

Father's Day, I think the men colour-coordinated!

Brunch with the Dufresnes

Kappa Kappa Gamma sisters

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Beautiful Day!

6/21/2017

A HUUUUUGGGGGGEEEEE THANK YOU, to my Living, Loving, Laughing Team and supporters.

Thanks to you we raised $7,690 for the ALS Society of Canada at the Ottawa Walk for ALS, on Saturday June 10th.

I was honoured to be asked to be the lead walker and am so grateful for the sunshine after an extremely rainy spring.

I was so fortunate to be surrounded by family as I rolled (thinking of you Eddy K.), with Travis, my mom, dad, my brother Keith who came all the way from Calgary, my cousin Chelsea, and my always supportive friends. It was such a "Beautiful Day", also my brother Don's ringtone! He was absolutely with us in spirit as both Keith & Dad wore St. Maarten t-shirts and I wore the necklace Don gave me the last time I saw him. Completely unplanned, and quite touching to feel him with us.

I have posted pictures on the Gallery page and my written speech on the Media page of this blog. If you are interested, my amazing cousin Chelsea recorded my speech as lead walker and you can watch it below.

It means so much to me to be able to be an advocate on behalf of the ALS Society of Canada. I am in shock by how many of you donated so generously from all corners of the world, I feel so loved!

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ALS Awareness Month

6/1/2017

Donate to the Ottawa Walk for ALS

June is ALS Awareness Month across Canada. To recognize this, each year in Ottawa, the City proclaims June as ALS Awareness Month and generously flies our ALS flag for the month of June. I gave a speech at the Ceremony, and if you are interested, I have posted it on the Media page of this blog. Thank you so much to those who came out to support me. Please consider making a donation to the ALS Society of Canada or joining and/or sponsoring a team for the Walk for ALS!

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Coping With ALS

5/23/2017

So this is cool, I received an email from a graduate student at Keuka College (a small liberal arts school in the Fingerlakes region). As part of her occupational therapy graduate work, she completed a qualitative analysis assignment with two of her colleagues focused on the coping mechanisms of an individual living with ALS. The basis of their research was narrative data, and they chose to focus on myself and this blog! I am truly honoured to have a graduate paper written about me, I thought they did an incredible job!

coping_with_als.docx
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I posted their qualitative analysis presentation on my gallery page, check it out!

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I'm Not Afraid of Tears

5/17/2017

I'm Not Afraid of Tears
written by Shelly Hoover

I follow many online blogs and forums about ALS. It is a great way to connect with others in similar circumstances and know that you are never alone with your experiences.
I just had to share this beautiful blog written by Shelly Hoover. I can relate so much, it feels like she read my mind.

I know it hurts. You don’t have to hide your tears.

ALS is a cruel and difficult disease. You see the visible toll and I know it makes you sad. Uncomfortable even.

I struggle too with each loss of function, especially with the big things like driving and eating. Let’s face it, it’s embarrassing when I eat like a toddler. I know it’s uncomfortable to watch when my hand is shaking and all the food falls back on the plate before the fork hits my mouth. I’ll get to a point where I’m ok with you feeding me. I know you won’t mind a bit.

I know it’s frustrating when you want to invite me places, but I can’t get into your house easily or I can’t get into the venue at all. So the invites stop coming. It hurts.

Your once vibrant, active, and strong friend is slowly wilting away. I get it. It’s ok to be mad. ALS is hard on everyone who crosses its path. It’s ok to be sad. It’s ok to cry in front of me. I’ll probably join you. It helps me know you care deeply.

I mourn not only the loss of physical function. I mourn the loss of cute shoes, my independence, and dreams of an active retirement. It hurts.

I’m an awkward physical mess and sometimes an emotional mess. Sadness catches in my throat and rolls down my cheeks without warning. Let’s express and validate our sadness when needed. But let’s not stay there.

I’m still me on the inside. I want to hear all about your life and encourage you to be the amazing person I know you to be. I want to laugh with you until it hurts.

So, I wear ugly shoes, depend on others, and change retirement plans. I can live with that.

I love you my friend, and I am loved. That’s really all that matters.

I’m forgiven and Free and it’s ok if you cry with me.

Shelly Hoover's Blog

...sigh...I really do miss my cute shoes!!!

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Radicava (Edaravone)

5/12/2017

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Breaking News!
On May 5, 2017 the US food & drug administration (FDA) approved a new drug to treat ALS! Radicava (Edaravone) is the first new treatment approved in 22 years! For me, however, I see it as the only treatment option offered in over 100 years of the existence of ALS. I say that because Rilutek (Riluzole), a drug that is used for ALS in both the US and Canada only seems to extend the patient's life for a few months, and who wants to live 3 months longer when you are paralyzed? That and the fact that I am unable to take it as I also have a liver condition.

Edaravone was initially used in Japan to treat stroke. In a 6 month clinical trial in Japan, they demonstrated that edaravone could slow progression by up to 33%! Now the clinical trial only had 137 participants, half of which received placebo. While not a huge study, it still gives me hope, imagine if my progression could slow by 33%, I find that incredibly significant.

The US FDA approached the Japanese drug developer Mitsubishi Tanabe about filing a marketing application in the US. It will be available for use in the US this August 2017! Let's hope that Canada reaches out to them as well, for the company to seek approval with Health Canada.

The difficulties with the treatment are that it requires an intravenous infusion for 14 days, followed by a 14 day drug free period, with subsequent treatment cycles. Also the high cost (about $145,000 US/year, not sure what the cost would be if approved in Canada), and of course the possibility of adverse reactions.

I am aware of the fact that this new drug may not be available to me specifically, and there are many challenges involved with receiving it, however, to see a new drug approved for the treatment of ALS in my lifetime, was something I never thought I would see. I'm not saying that I don't have hope, it's just that with such a short life-span of living with ALS, I was advocating on behalf of those who will be diagnosed with ALS in the future. But I guess treatment and a cure has to happen during someone's lifetime!

This development may also spur momentum for drug companies to pursue the development of additional treatment options. And if Radicava actually significantly reduces progression, then what elements of the drug contribute to the slowing of ALS? What an incredible opportunity for researchers to study this potential breakthrough!

All in all, this is a heartening and encouraging discovery to me, quite awesome in fact!

These are just my thoughts after hearing the news, for actual facts, I have included several articles on the release of Radicava (Eradavone) below.

ALS Canada

FDA

ALS Association

ALS TDI

CNN

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Spring Fever & Advocacy

5/3/2017

As many of you may be aware, it is the spring walk season across Canada. The walks are ALS Canada’s major fundraiser of the year. Sixty percent of the funds raised at the walk go towards client services (including equipment) and forty percent go towards research.

Please mark these dates in your calendar. We would love to see you at any or all of these events. If you are unable to make an event, please consider pledging for one of the walks or keeping those who we walk for in your thoughts.

May 11th – (Fun) Raiser and Kick-Off Event for the 2017 Ottawa Walk will be held at the Heart and Crown on Preston Street. The event starts at 6:00pm and will feature an update from Dr. Jodi Warman & Dr. Robin Parks on advances in clinical care and ALS research at the new Ottawa Muscle & Nerve Institute, as well as musical entertainment by the fabulous Fridge Full of Empties!

June 1st – Flag Raising at Ottawa City Hall to mark ALS Awareness Month. A flag raising will be held at City Hall (located at the flag poles by the Laurier Street entrance) at 9:30 a.m. ALS Canada client and ambassador Carol Skinner will be speaking as well as deputy mayor. The City will proclaim June as ALS Awareness month across Ottawa and will fly the ALS flag at City Hall for the month.

June 10th – The Ottawa Walk for ALS will be held on Saturday, June 10th at the Canadian War Museum. Registration starts at 10:00 a.m. and the walk begins at 11:00 a.m. A silent auction is available and a free BBQ is provided to all walk participants.

DONATE

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WALK for ALS 2017

4/28/2017

So excited to be walking again this year for the annual Ottawa Walk for ALS on Saturday June 10th!

The WALK for ALS is the largest volunteer led fundraiser for ALS across the country.

40% of the proceeds support ongoing ALS research across the country through the ALS Society of Canada's National Research Program.

60% of proceeds support direct services for people with ALS and their families.

If you would like to get involved and support this cause, you may click on the buttons below to either join my team the "Living Loving Laughing Walkers", or sponsor me with a donation.

Remember, ALS is NOT an untreatable disease, it is an UNDERFUNDED one, with your support, we can find a way to eradicate this horrendous disease.

Sponsor Me!

Join My Team!

walkforals.ca

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Help Wanted

4/20/2017

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Living with ALS sometimes feels like a full time job. And not the satisfying kind, more like the frustration with administration, bureaucracy and paperwork kind. I spend at least 50% of my awake time resting, and the other part working on accessibility issues. It took over a month to get a new wheelchair battery as mine was draining so quickly just going around the block, I was too scared to go out for fear of getting stuck. It took another month to get the receipt for my wheelchair battery so that I can submit to insurance. It was intimated that it took so long to get back to me as the company was not confident that I would pay for it (ah, because those of us with disabilities don't pay our bills, of course!). Gotta love discrimination. I called my insurance company who stated they would cover 100% of the cost of my new battery (whoo hoo!) "up to $300, the reasonable cost for a new wheelchair battery" (oh). After two quotes, the battery came to just under $800. Ugh. Nevermind, I was just so thrilled to be able to leave my apartment on my own again, in the sunshine! I did errands and rewarded myself with Starbucks. You know it has been a long winter when you pass another person in a wheelchair who yells to you "I finally got out!".

I have to admit, I sometimes feel like I am no longer a participant in society, more like an observer. It is very difficult to witness all the things that people do so easily, that you used to do without a thought, yet can no longer do. I am trying to find that balance of participating as much as I can, with my body's feeling of deterioration.

Thanks to the ALS Society of Canada, I have a new shower chair. It seems that when I stand, my left knee is taking all of the weight as the muscles in my leg are no longer strong enough. That paired with the fact that I try and shampoo my hair while holding onto a bar at the same time is very awkward. I've used it a few times and it feels much safer, but it is another thing to get used to; showering while sitting down.

I have good news, I have qualified for the Ontario Direct Funding Program. It is a program that allows me to hire my own attendant. I have been allotted 20 hours/week. You can imagine the government paperwork I am inundated with as along with being able to hire my own attendant, I am also responsible for everything that goes with it. I had to study the Employment Standards Act, payroll, WSIB, CRA deductions, etc, I won't bore you with the rest! It is a big process to set up but will be a big help to be able to hire someone I can trust to help me get up and showered and dressed for the day. There are times when I want to give up on the whole process altogether, I get so overwhelmed and don't want to have to need the help! I am aware that once it is established it will be a great thing and allow Travis to keep working and paying the bills! So I'm throwing it out there if you happen to hear of or know of someone who would make a great caregiver (PSW or otherwise), please let me know. Finding someone is what is giving me the most anxiety. I am looking for a female, but would also consider a 6 foot Brazilian male with a six-pack.

As always, what keeps me in the game is having things to look forward to. Coming up: Crazy girls weekend with Heather and Brittany, our annual chipmunk trip to Algonquin, Ottawa summer full of sun, the Ottawa Walk for ALS (June 10), visit with Keith, Tania, Kate & Malcolm at Summerland in August, and of course most importantly the Montreal Canadiens winning the Stanley Cup!

Shower Chair

Around the time Travis is meant to come home from work, Buddy literally watches the door waiting for him, true love!

This is Travis's interpretation of a "Cheese Plate". Note the cascading cheese from one level to the next. #manofmydreams

Thank you to AMA Jewellers in St. Maarten for this beautiful write-up of my brother in their magazine.

3 Comments

M-105 Update

4/11/2017

3 Comments

Very exciting news! Our Member of Parliament the Honourable Judy Sgro's motion seeking research from the Federal Government passed unanimously with a 280-0 vote on April 5.

As to what that specifically means, I'm not quite sure just yet. The official text of the motion states; "That, in light of the death of over 1000 Canadians each year, including the tragic loss of the Honourable Mauril Bélanger, former MP for Ottawa—Vanier on August 16, 2016, as a consequence of Amyotrophic Lateral Sclerosis (ALS), the House: (a) reiterate its desire and commitment to, in collaboration with provincial and territorial stakeholders, combat ALS via research and awareness; and (b) call upon the government to increase funding for ALS research, and to substantially increase national efforts to develop and launch a comprehensive strategy to assist with the eradication of ALS at the earliest opportunity."

I am so encouraged by this vote. You may ask "why wouldn't anyone support a commitment to eradicating ALS?", however, it is never easy asking the Federal Government to commit to substantial (I mean substantial for ALS, not necessarily the Federal Budget) funding! I am so proud to be Canadian and so grateful for the perseverance of all those who fight to combat this disease.

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Bonspiel Results

3/19/2017