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Lucky Girl

4/28/2014

Holy Overpackaging Batman! (notice the cattail?)

I am so in love with my husband. If you don't already know it, although I suspect you do, he is absolutely, positively the most loving, caring, supportive, hardworking, gorgeous and spectacular person on the planet. And he married me!!! He has been tirelessly spending all his time off (not a lot when you work 15 hour days) making our new apartment into a home. It has not been easy, we should have taken out shares in Ikea and Home Depot! We (and by we I mean he) have now painted two accent walls as I was not happy with an all beige home, which look gorgeous (how we spent our Easter). Our latest project has been a DIY nightmare, it was supposed to be easy hanging our newly purchased electric fireplace and TV, but with terrible instructions, faulty stud finders and mysteries behind the wall it has been two full days of work and still incomplete. Thanks to Dayne & Kate who commiserated with us! Incredible how inanimate objects can cause such frustration, and obviously we have bigger things to worry about but life has a way of keeping you in the moment! When all is said and done I know we will have a beautiful place to be proud of and then we can host a housewarming!
I can't stop thanking my friends and family for continuously checking on me. From calls from Iceland (love you Danny & Katie!), to birthday dinners (happy birthday Dasa!), to ladies lunching & misbehaving (BRIT!), to catching up (Julie, Craig, Ken), to Kappa Sisters reconnecting (Ginette, Sara, Annemarie), to family (cruising with mom & dad, camping with Keith & Tania, Don coming to visit), to you, all of my wonderful champions & supporters. THANK YOU, I could not do this alone.
I am truly blessed.

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Open House

4/22/2014

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Still trying to sell our Condo! We would love to get this huge weight off our backs so we are making a plea to friends & family who may have any connections in Ottawa to help us spread the word! We are having an Open House this Sunday from 2-4pm.

Open House

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Happy Easter

4/20/2014

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Happy Easter to our beautiful, amazing and incredible friends & family around the world. Travis & I send hugs and wishes of tons of love and happiness on this special day.

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Walk for ALS

4/15/2014

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I have registered for the Walk for ALS event held on June 14 in Ottawa. Please check out my page at:
http://my.e2rm.com/PersonalPage.aspx?registrationID=2317077&langPref=en-CA
or click on the button below. I am looking for people who would like to sponsor me, join my team and walk with me or both!!! So excited as Don is flying all the way from St. Maarten to walk with me! My team name is Living Loving Laughing Walkers.

My clinic visit was positive yesterday although long and emotionally draining! The best news is that my breathing, coughing, talking and swallowing scores are the same as they were in January. No one will stop me from having my voice heard!!! My arms and legs have declined a little, I am now getting 3+ and 4's out of 5 but it is no surprise as I can feel the weakening and lack of strength. I am positive though as I am still independent and mobile. The results mean that I will be getting a transport chair, basically a portable wheelchair so that I can save my strength in getting to places so I will be able to enjoy the places once I arrive! It will be helpful for our shore excursions on our upcoming cruise. I will also be looking into getting a motorized wheelchair. Walking to the shops which is about a 10 minute walk for people without mobility issues is tougher than I thought it would be, so the wheelchair will ensure that I can get home again! Although my body is physically ready for these tools my mind is another story. I think the wheelchair is the biggest mental change so far. The staff at the ALS clinic say that often patients get in their own way by not accepting the tools that may be helpful with energy conservation. I really get that as part of me feels that why would I use a wheelchair when I can still walk? Being a therapist I need to tell myself what I would tell others that it is not all or nothing. I will use the chair when I need it, and store it when I don't.

Walk for ALS

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Webinar

4/7/2014

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Brittany, Carol & Katie

Just finished the webinar with Dr. David Taylor. He was very optimistic about how research is advancing in ALS discoveries. He began by mentioning that there is advocation to the Federal Government in terms of extending compassionate care benefits from 6 to 35 weeks, as well as asking the Federal Government to match the ALS Walk donations for ALS research.
The main takeaways:
1) They have discovered that ALS is not just a motor neuron disease, it involves many cell types
2) ALS research is like a puzzle, each new discovered gene mutation helps us to understand more and about 70-80% of genes in familial ALS are known
3) There are more clinical trials than ever before and many in Canada
As for now, still not much I can do in terms of treatment, however, he did mention that a high carb diet has been shown to have positive outcomes!
It was heartwarming to see Heather & Kate as participants, I was absolutely touched and supported!

Shower Grab Bar

My latest piece of equipment is this shower bar, which helps me get in and out of the shower.

The bed we have bought is absolutely incredible, the mattress is supportive and the head & foot lift features are so helpful and absolutely adds to my comfort level (Travis loves it!).
Unfortunately they delivered the wrong bed so this one does not have a massage feature, they will exchange it this Wednesday and my aching muscles can't wait!

Finally a beautiful Spring Day for our 3rd Open House, we had some people show up, but no offers as of yet.

Still seeing my wonderful friends and feeling supported by amazing colleagues.

I love my support network.

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Research in 2014 Webinar

4/3/2014

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ALS Canada salutes the unwavering commitment and dedication of the hundreds of volunteers working with us to support families and clients living with ALS. In honour of National Volunteer Week, ALS Canada presents an exclusive webinar that presents an overview of ALS Research.

Join Research Director, Dr. David Taylor as he takes you through Solving the ALS Puzzle: Research in 2014. This will be a 45 minute presentation with a 15 minute Q&A period immediately following. The webinar will be repeatedthree times next week:

Monday April 7 at 6:00 p.m.(EST)
Wednesday April 9 at 12:00 p.m (EST)
Friday April 11 at 12:00 p.m. (EST)

Reserve your seat today! There are only 20 seats available per webinar. To register click the link below:

Registration for Solving the ALS Puzzle

If you have any questions or concerns, please contact Vanessa at vb@als.ca.

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Lucky Girl

Open House

Happy Easter

Walk for ALS

Webinar

Research in 2014 Webinar

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