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!
4 Comments
Heather
5/28/2016 09:47:01 am
Voice Banking, yes please.
Reply
Kate
6/8/2016 04:56:37 pm
You two are just so smart and talented. Lots of love.
Reply
Brittany
6/29/2016 07:27:07 pm
Love the pics of Don. Handsome guy indeed!
Reply
Leave a Reply. |
AuthorCarol Jean Skinner (née Sharman) Archives
September 2020
|