Our ALS story seems like a good opening topic. I say "our" because it's not just mine, it effects my family and those around me as well.
Before I get into the story I believe a little background is helpful.
Prologue: Steve, Ashton, Christoper and myself moved from Santa Barbara to Solvang in early '98. (That's a story by itself ) Steve and I were commuting to Santa Barbara for work , Ashton was finishing 2nd grade in SB and Chris was in Daycare in Solvang. My goal was to break into the growing wine business in the central coast. Good Books was created and I was a "Controller for Hire" to help start - up wineries set up their accounting systems and protocols. Such a great job with fantastic discounts on premium wine.:) Ashton was enrolled in a local Christian School for 3rd grade and Chris was in a great local daycare.
Chris and me
Steve had a job with a lot of foriegn and domestic travel so he was still going to make the daily commute. Our weekends were spent at soccer and t-ball at first. Our jobs grew as did the kids activities, adding volleyball and football to the mix. Our "down time was sitting on sidelines or bleachers. I imagine this is a pretty familiar story to many young families. Steve's job changed which keeps him more local, based in SB but more flexibility. One of my clients was growing very fast and had agressive plans to go state wide and eventually national.I closed Good Books and became the Controller for Lucas & Lewellen. http://www.llwine.com/.
Laughing it up in San Diego
Ashton and Chris are progressing through school, sports and now club soccer for Ashton. We are now spending our weekends in hotels throughout Southern California for Ashton's soccer tournaments. I love to volunteer, always have. I don't know when to say no. Over the years I have been the charity event chair for Ashton's school one year(almost a marriage breaker), a volleyball coach, a soccer coach, club soccer team manager, high school soccer booster club president, National Charity League (NCL) board member and group leader and the usual class mom and team mom. Poor Steve would just shake his head when a group asked for vollunteers.
I share this as background to explain that we are a very involved in Solvang and the Santa Ynez Valley . We work hard and we play hard. We enjoy giving back.
In 2004, Steve is still with Service Master Anytime in SB. I am in my 5th year with L&L, we have 2 tasting rooms and have just gone international. Ashton is a sophomore in high school and very active with soccer and volleyball, Chris is in grade school and peewee football. Steve and I are helping with club and high school soccer and I am doing NCL with Ashton. During this time my cousin Bonnie and I are training for a San Diego 3-day walk for breast cancer. We complete the 60 miles without incident and some great memories.
Bonnie and me at the breast cancer walk
Soon after I am walking to work and my gait is awkward. I blame the shoes, throw them away and buy a new pair. This continued for a year. I would limp and tell myself, and everyone else, that it was nothing. The cramping continued and my left leg was getting weaker but somehow I was able to continue on with all my responsibilities. April 05 I went to Yosemete with Ashton and some of her soccer team. We had 1 day white water rafting which I was able to handle but the next day was hiking.
A little wet
I would have to stop many times to rest, my left leg would be too tired to continue. After a few minutes of rest my strength would come back. What amazes me is the denial that there was a problem. I would fall and blame my shoes or the ground. The power of the mind is incredible. I didn't want my family or friends to think there was something wrong, that I could not still be super woman. I remember hiking down a trail in yosemete. Ashton and her friend caught up to me while I was resting. I told them to go ahead because I wanted to take in the scenery. After they left I broke down crying because this wasn't me. I was angry. I was afraid I would not be able to get up, let alone finish the trail. I had several conversations with my leg and did finally make it to the bottom. A few falls along the way. That summer in 05 we went on our annual multi-family houseboat trip to Lake Shasta. I recall pulling myself up by the railing to get to the upper deck. I would take a back staircase so no one would see and come down on my butt for fear my leg would give out. During these months I was trying to keep up my swimming and spinning schedule. In my mind my left leg and recent weight gain all had to do with being out of shape. I remember when my spinning days were over and selling my new shoes to the instructor. I was able to continue swimming since the deadness was contained to my left leg. Writing this makes me realize what an idiot I was. I have to link it to pride and losing control. If you know me, not being in control is not easy for me.
Ashton and me
The next event was the one that finally got me to the doctor.Steve and I and our good friends Bob and Julie went to Illinois to visit their daughter and attend a Notre Dame football game. I had no strength in my left leg, Steve had to help me up and down the bleachers and almost had to carry me to the car. At this point we knew we could not ignore it anymore.
In November 05 I see a neurologist in SB who runs some test, rules out all the obvious diseases like MS and Parkinsons. Then he proceeds to tell us that if "they" can't figure it out then it is probably ALS. He sends us to a specialist in LA for a 2nd opinion. At this point I had started using a cane, a pretty, collapsable pink one, that I could hide in my purse. I wasn't ready for my office to notice how handicapped I was. The LA doctor told us it was ALS and we should go to UCLA for the "official" diagnosis so we could benefit from their ALS program. We did in March 2006.
You may have noticed that my first posting said I was diagnosed in March 2005. Steve reminded me of the 1+ year of denying / ignoring that there was a serious problem.
This was news we really had to reconcile. A confirmation of this magnitude was difficult to wrap our minds around. Steve was all about being proactive, thinking of my physical needs 3,6 months down the road. He was my rock. I, was more concerned with when/if I tell work, how we tell the kids . How do I adapt and compensate so my changes have little impact on others.
Thank you for tuning in. More next week.