My back is now feeling better after spending another week in bed recovering. I am looking forward to my parents visiting next week, and then we head to Newburgh for a few days to visit with Heather and Andy. After that, Women's World Cup Soccer Canada vs. Brazil, and then a visit with my fellow teacher Bethy, who it feels like we saw a year or two ago, but we left St. Maarten in 2007! Can you believe it? 9 years ago. How time flies, so MAKE IT COUNT!
Just when I was feeling better...my back went out! Luckily, before that happened I was able to attend the Pearl Jam concert, which was AAAH-MAZING (Thank you for dinner Sean & Brittany, and thank you for driving Danny & Katie)! Eddy's voice & passion hasn't changed since the '90s. As well, I was able to co-host Brittany's baby shower which was a lot of fun. I couldn't have done it without Travis who even made an adorable fruit baby for our travel inspired theme. His reward was to go on a microbrewery tour with Sean during the shower! I am currently fundraising for the 2016 Ottawa Walk for ALS, please click on the button below to help me reach my goal! For those who are able to join my team (please let me know), you are invited to both a cocktail party at my place the evening before, as well as lunch at Lowertown Brewery in the Byward Market after the walk. At the Walk kick-off party Co-Directors of the Centre for Neuromuscular Disease at the University of Ottawa - Dr. Jodi Warman and Dr. Robin Parks - spoke of the proposed Neuromuscular Clinical Research Center at the Ottawa Hospital. The hope is that the new Centre of Excellence will have an expert ALS neurologist at the helm as well as opportunities for ALS clients to participate in clinical trials locally. I can't tell you how much this means to me and I really hope to be alive to see it to fruition! I very much wanted to participate in a clinical trial but had to turn it down as it was in Montreal and was too difficult for me to travel for the study every few weeks. It is too late for me to participate in clinical trials now as they want people to begin a trial in their first two years living with ALS. The reason? Because people diagnosed with ALS have 3 to 5 years to live and they don't want to waste efforts and resources on participants who die during the trial. Nevertheless, I am thrilled that others in my community will have the chance to participate and further the cause for a cure. Watch the video to learn more about what it takes to go through a clinical trial, and why fundraising is so important. Travis and I paid another visit to the ALS Clinic for a follow-up. The good news is that my breathing is still functioning well. Unfortunately, I have noticed my speech is beginning to slur. It happens more when I am tired and it is the weirdest thing, my brain knows exactly what I am trying to say, but something completely different comes out of my mouth. I am currently looking into Voice Banking. This would allow the use of my voice on a Speech Generating Device. It is a bit of a complicated procedure, but we are figuring it out. My handwriting is also deteriorating, but it is still neater than Travis's teehee!
My back is now feeling better after spending another week in bed recovering. I am looking forward to my parents visiting next week, and then we head to Newburgh for a few days to visit with Heather and Andy. After that, Women's World Cup Soccer Canada vs. Brazil, and then a visit with my fellow teacher Bethy, who it feels like we saw a year or two ago, but we left St. Maarten in 2007! Can you believe it? 9 years ago. How time flies, so MAKE IT COUNT!
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This is the third year I will be participating in the Ottawa Walk for ALS. I know how lucky I am to still be able to attend the walk. As a member of the ALS Community, of course I hear stories of those who are lost to this devastating disease. The support I received last year was absolutely tremendous and I am reaching out to you again. The ALS Society of Canada is dedicated to making ALS a treatable disease by 2024. I will do my best to stick around to watch this happen! For this I need your help. Whether you are available to join my team the "Living Loving Laughing Walkers", sponsor us, or participate in a walk near you, every dollar counts. 40% of the proceeds of this year's WALK will support ongoing national research. Please join me in supporting research to find a cure. 60% of the proceed of this years WALK will support people living with ALS and their families. With the average cost to a family of $150,000 to $250,000 over the two to five years of life with ALS, support is critical. Thank you for giving me hope and not allowing me to feel alone as I navigate the realities of ALS. My heart swells with gratitude. YOUR PARTICIPATION MEANS EVERYTHING. Because finding treatments and providing care takes all of us. With every step we take, and every dollar we raise we are that much closer. Ottawa Walk for ALS Details:
Location : Canadian War Museum Address : 1 Vimy Place, Ottawa, ON, K1A 0M8 Distance : 5KM Date : June 11, 2016 Walk Check in Time : 10:00AM Walk Start Time : 11:00AM Contact : Brianne Lauzier Email : lisabrianne26@hotmail.com Location : Canadian War Museum Address : 1 Vimy Place, Ottawa, ON, K1A 0M8 Distance : 5KM Date : June 11, 2016 Walk Check in Time : 10:00AM Walk Start Time : 11:00AM Contact : Brianne Lauzier Email : lisabrianne26@hotmail.com Travis and I are back from our mini-break in Toronto. FINALLY I was feeling better and we managed to enjoy ourselves with thanks to Travis's hotel reward from the Brookstreet. We stayed at the Delta on the 45th floor with corner windows and even floor to ceiling windows in the bathroom, with views of the CN Tower and City Airport. We were able to lie in bed watching the CN Tower light show as we fell asleep. Amazing! Travis and I enjoyed a much needed date night with delicious food at Jules Bistro, and then enjoyed cocktails at the Whiskey Bar in the hotel afterward. We had thought about sightseeing and/or taking in a show, but who were we kidding? Our favourite kind of tourism is the eating and drinking kind, so after a bit of shopping, we went for lunch at Ki for sushi, then to Mirto for dinner with Annemarie and Mama Smith. Not sure if Travis got a word in with the ladies gabbing! Foodie vacations are the best! The ALS Canada Research Forum was an inspiring event. Hundreds of researchers from across Canada were in attendance and it was heartening to see the work being done on behalf of finding a treatment for ALS. ALS Canada's Director of Research Dr. David Taylor put together an incredible presentation on the connections between provinces, institutions and the people who are working to win the fight against ALS. He is a true genius and the ALS community is lucky to have him. Also, Tammy Moore, the CEO of ALS Canada is an unbelievable leader and is so good at what she does, I can't believe we've got her! Lianne Johnston, my ALS Canada Regional Manager also works tirelessly on behalf of her clients. It meant so much to meet a young researcher whose dad died from ALS who has chosen to make her life's work about eliminating ALS. I also met other ALS Canada Ambassadors, my hero Eddy www.lets-roll.ca, and family members who have lost their loved ones to ALS. The people who are dedicating their lives to those of us living with ALS are so incredible, and I am so lucky to have the smartest people in the world focusing on this ridiculous illness. Because of their devotion, and the commitment of so many amazing people I met at the conference, I have no doubt that ALS is sure to be a disease of the past!
I finished my speech the day before the ALS Canada Research Forum, phew! It was incredible to have Travis stand beside me and speak with me. We had an overwhelming response to our speech and hopefully made an impact. If you are interested, you can read it on my media page. |
AuthorCarol Jean Skinner (née Sharman) Archives
September 2020
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