Tuesday, April 30, 2013

An anniversary of sorts...

It was one year ago today that I received the diagnosis that has forever altered my life and that of my family.  I suppose, as far as anniversaries go, this one sucked.  On the other hand, while there have been significant changes to my body and my life in the past year, I also am very aware that things could be worse and there are others out there living under more difficult circumstances, with greater challenges, with worse anniversaries to acknowledge.  So today, while I took the time to acknowledge the many negatives of my situation, I was equally aware of all the wonderful parts of my life that I am still enjoying every day with love and appreciation.

Sunday, April 21, 2013

The SLO Walk to Defeat ALS...

On April 13th the Walk to Defeat ALS was held in San Luis Obispo, CA and Sam's Twysted Ride-SLO Team was there in support of all of us living with ALS!  Although I wasn't able to be there personally, I was there in spirit … and as a cardboard cutout (see if you can spot me in the group photo below)!  Throughout the event, it was lots of fun for me to receive texts and pictures from family and friends who were at the event to support me and the ALSA in our goal to find a cure!

I want to send a heartfelt "Thank You" to absolutely everyone who participated in any way with the Walk to Defeat ALS and Sam's Twysted Ride.  I am so touched by the enormous outpouring of community support that contributed to our team's success (on both coasts)!  My mom, who lead the team in SLO with enthusiasm and love, gave a moving speech (video sent to me via text - I love technology!) before the Walk began.  While many of our team members were local, two of my aunts and two of my little cousins, all who live in Southern California, made the drive up to participate in the Walk with our team! 

In addition to the Walk, my mom and her team collected dozens of item donations from local businesses which were raffled off at the unofficial "After Party" at the SLO Down Pub in Arroyo Grande.  The Pub donated a portion of the food and drink sales to our team and two local bands donated their time and talent to play at the event - Jody Mulgrew and the Skeleton Crew and Valerie Johnson and her New Sound Boogie Band - which was incredibly thoughtful and generous of everyone involved!  I heard from ALL of my sources that both bands were fantastic, the food was great, and the overall atmosphere was positive, fun and supportive!  Together, the SLO team has raised close to $6,000!

I grew up in the Five-Cities area, went to school at Grover Heights Elementary, Judkins Jr. High, and I graduated from Arroyo Grande High School.  Before moving to the "big city" at 18, I even spent one semester at Cuesta College.  Twenty years after I left, my family and I moved back to SLO for a couple of years while I finished my degree.  In 2011 we left the Central Coast of California for Colorado just as the first symptoms of ALS were beginning to show … but, of course, I didn't have any idea that was what I was dealing with at the time.  I will always think of the Central Coast as my hometown.  It is the place where I grew up - where I played sports and went to dances, where I learned to drive, to waterski, and where I fell in love with the ocean, it is where my husband and I got married and walked hand in hand on the beach together, and it is where my son and I learned to ride a motorcycle.  It is a place that holds many special memories for me.  I am especially grateful to know that I still have family, friends, love, and support from "home".  Thank you!!

Sam's Twysted Ride - SLO Team

My mom and friends!

The Hendrix Family and me!

Walking together!

Just a few of the raffle items donated from local businesses
Rockin' at the SLO Down Pub
My mom, Jeanne, and Jody Mulgrew
Enjoying a burrito in SLO - oh, how I miss good Mexican food!

Thursday, April 11, 2013

We did it...the Jacksonville Walk to Defeat ALS

Last Saturday was the 10th anniversary Walk to Defeat ALS in Jacksonville.  It was a beautiful day to walk together with my team of family and friends along with so many others supporting this important cause!

In years past, I have participated in a few 5K Run/Walks for Breast Cancer and it was always an inspiring and positive experience.  However, this was the first time that I participated in this type of thing as one being supported by the cause.  Being involved as a person living with ALS, this event had a different element for me.  It was an inspiring and positive experience still, but with an additional level of emotional involvement because, this time, I was the one being surrounded and supported by my family and friends, both old and new.

I want to extend a special thank you to everyone who has supported me and Team Sam's Twysted Ride in this adventure!  I cannot express the depth of my gratitude so I will simply say thank you all!!

I also want to thank everyone at The ALS Association for all of the wonderful work they do to help people living with ALS and their families.  You make such an important difference in the lives of so many, thank you!

Sam's Twysted Ride Team with Dr. Boylan from Team Mayo

Lori, Gary, Sam, Dan and Julie
Lisa, Dad, Me and Dan after the Walk
Our good friends, Jim & Julie, came all the way from CA to Walk with us!

We're Walking here...let's defeat ALS already!
The Jacksonville Walk has a fundraising goal of $300,000 and to date, just over $230,000 has been raised (over $10,000 by Sam's Twysted Ride Team alone)!  Although the Walk is over for this year, the effort continues…

Tuesday, April 2, 2013

Sam's Twysted Ride T-shirts...

With the Jacksonville Walk to Defeat ALS just days away - 4 days to be exact - I was so excited to pick up the Sam's Twysted Ride t-shirts today!  Thanks to Ancient City Screen Graphics for doing a great job!

On the back, under the logo, it says "The Twysted Ride of Living With ALS" and then the blog address, www.TwystedSam.com.

What do you think?

Just a reminder, if you haven't had a chance to make a donation yet, please visit my Walk page now!

If you happen to be on the Central Coast of California, Sam's Twysted Ride - SLO Team is having their Walk to Defeat ALS (in San Luis Obispo) on April 13th with a benefit concert and raffle being held from 1pm - 5pm the same day at the SLO Down Pub in Arroyo Grande.  If you are in the area, please stop by to show your support and have some fun!

Finally, if you are looking for a fun event to attend this Friday, April 5th, in Grover Beach, CA, Tantrum Fitness on Grand Avenue is having a Yoga and Wine Fundraising event from 6:30p - 8:00p with all donations going to the San Luis Obispo Walk to Defeat ALS!  You must RSVP for this event, please check the link above for more details.