Live Love Laugh with Carol
Contact Carol
  • Home
  • Love Story
  • ALS
  • Blog
  • Tips & Tricks
  • Gallery
  • Travel
  • Media
  • Calendar
  • DONATE

Webinar

4/7/2014

4 Comments

 
PictureBrittany, 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!

PictureShower 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.

4 Comments
Dad/allan
4/8/2014 03:24:03 pm

Thanks for the feedback on the webinar Carol. The bed sounds great, glad that you both love it. The upside of getting it in two instalments is that you get to enjoy the features in incremental stages. Glad that spring has arrived for you, may the next open house, be chock a block with eager nest makers. Autumn has arrived on this side of the world, the leaves on our liquid amber tree have started to shed its leaves. Have been blessed with our best harvest of fruit over the last few months and continuing. Started with the plums, then figs, feijoa, persimmons and mandarins now starting to ripen. Anyone would think we are on a half acre plot.

Reply
Katy
4/8/2014 09:30:55 pm

I was impressed with Dr Taylors openess and sincerity. He got back to me today about GcMaf and ALS. He says at this stage it appears it would not be a suitale trial as it may interfere with Mast cells and immune function.

But great to know there are so many studies and active progress towards finding a cure.

Reply
Heather
4/10/2014 12:42:23 pm

Enjoy the massaging feature -- perhaps pasta in bed would be even more medically advantageous?! (And yes, your support network loves - and enables - you too!) xxoo

Enjoy M2 and D2 visit - cheers and love to all!

Reply
Brittany
4/14/2014 10:01:06 am

I'm totally with Heather- can I come over and eat pasta in the massage bed with you? I'll bring the pasta! Love the pic from our sushi night...thanks again for being awesome hosts! Be in touch soon about dinner at our place :) xo

Reply



Leave a Reply.

    Author

    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

    Archives

    September 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013

    RSS Feed

carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com