Adapt, Embrace and make life an Adventure - Part 1

Change is inevitable, it's one thing you can count in life. Fortunately I have always welcomed change. Boy, were we going to be tested!

The first thing I did after the 2nd opinion came in was have a "pity party". That was a long drive from LA and I think I cried the whole way home. Once that was over Steve and I got serious about planning. He was all about the equipment and I took on lifestyle changes. I was not at the Embrace stage yet but we did start to adapt.

Steve bought me a cool mountaineering walking stick, which was much better then the cane. I set out on a mission to de-toxify my body. The family switched to organic foods and juicing. Some friends from work bought me a Jack Lalane Juicer. This machine can make anything into juice, and the pulp makes great muffins. I had read that mercury was a bad toxin so I had my 30 year old fillings replaced with porcelain.  If you ever consider doing this make sure your dentist is aware of the protocols for safe removal of mercury.

The next important task was to form THE INNER CIRCLE. The Inner Circle is responsible for answering the questions that people are uncomfortable asking me directly. It is much easier to ask an unrelated party the awkward question "What's wrong with her?".  We live in a very small valley and even though the central coast wine industry is rapidly growing, everyone knows everyone.The message to the public had to be carefully played. Positive and in control. The speculation that the Controller of a well-known, up and coming winery had a fatal disease would stir up unwanted water cooler talk..At least until we had a plan in place . The first members of the Inner Circle were my close friends and colleagues Anjie, Lynne and Andy. They completely took away the stress of dealing with the public. This freed me up to concentrate on the plan for my eventual transition out of L&L (That was a reality check! ) . There were several things that fell into place that I could not take the credit for. I started to see that there was a higher power at work here. My replacement had to be more skilled than I so she could take L&L to the next level. I do start- up, young companies and we were past that by 2006. She had to be fun and open to change, not too rigid, and she had to like wine.  There was Barbara, a soccer mom, we  became friends  during our  weekend soccer club tournaments. We hit it off, had fun, she was a CPA and she was known  (and respected) by one of winery owners. Now, I am thinking PERFECT FIT. Sure, she was working elsewhere but that was just a matter of persuasion.:) I mentioned lightly that I would be retiring and she was not opposed to talking more. I told the owners that I was giving 1 year notice and why. They couldn't have been more gracious and supportive. When I told them of the potential replacement , Royce (one of the L's) lit up , he was thinking of her as well. We negotiated and started the transition. It couldn't have been a better match.

Anjie and me

Andy, Anjie, and me

Me, Lynne, and Anjie

So with the work decisions made and the Inner Circle at work taking care of PR and keeping me in a constant state of laughter, I was able to turn my attention to the home front.  It's early 2006 and Steve, my mother and I go to UCLA for my first appointment. To get to UCLA by 9, we would start the day by 5. Steve and my mom had to help me with everything. My left leg was dependent and my left had hand was starting to lose strength.  The nuggets we walked away with were The ALS Closet and that we should be researching beds, transfer equipment and shower chairs.  The best part of the day was lunch after. Jerry's New York deli was just around the corner and a Reuben sandwich you could die for!

On our way home we stopped at an ALS Closet in Oxnard. We called ahead and found out they had an electric Hoyer Lift. This is a big metal arm on wheels that picks me up in a sling that is placed behind my back and under my thighs. Retail >$5,000, ALS Closet, free and for as long as needed. We loaded it in the car and couldn't believe how fortunate we were. Again, someone was watching over us. The Closet is a treasure that must be told to people with needs. It was located in a warehouse owned by a wheelchair company so we met a future vendor in the process .

OK, that's enough information and rambling for today. More later this week , maybe even the part where we actually start to embrace the situation. Check back for Part 2.

The Diagnosis

The diagnosis took several months Primarily because no one wants to make that medical decision. As I mentioned in "The Beginning " I went to a neurologist in Santa Barbara, Dr. Delio. He gave me an EMG, Electromyography. The doctor inserts an electrode into the muscle tissue, in various places. Since it was my left leg giving me a problem he started there. He measures the activity of the muscle. That was very unnerving! :) The test area that was affected was tolerable. As he moved the electrode to healthier body parts it was like a hot electric poker pulsating through my body. Not the most enjoyable moment. Thankfully it was over as soon as it started. The EMG may be unpleasant but very useful information. We were able to see which areas were affected , from severe to moderate to not at all.  Other tests were MRI and blood work, to rule out any other diseases, even Lymes. These results were sent to an LA doctor for a second opinion. Of course I got another, more thorough EMG(Oh yay!).
Useful information the doctors gave us:
1. "You have ALS".
 2.Use a walking stick instead of a cane, it distributes your weight better, is better for your back and looks cooler.
3.Gather an "inner circle" of friends and family to broadcast the news and updates. That way you won't be bombarded with questions from everyone you know.
4. Don't do research on the internet, you will hear worst case scenarios. (we did anyway ).
5. The information about Riluzole.
6. The recommendation to join the ALS clinic at UCLA or UCSF.
3/06 UCLA did a questionaire to review my condition, no probing. A breathing test , which told us my lung capacity, which was excellent.The great thing about UCLA is their resources. You meet with doctor first and then you meet with OT, PT, Speech and Respiratory.It takes all morning but they monitor your progression every 3 months and tell you what to anticiate and how to adapt, equipment you will need , vendors, etc. They are invaluable.

About ALS

Sorry for not posting this past weekend, had a headache that wouldn't quit. Steve and I spent the day napping, listening to books and streaming the "24" tv series. Embarrassed to say but we are hooked. 

There was a request to know more about ALS and the diagnosis process.

Please share the knowledge of this degenerative disease.

ALS, Amyotrophic lateral sclerosis, is also known as Lou Gehrig’s disease.  It is a progressive neurodegenerative disease that affects the nerves in the brain and spinal cord. ALS kills the motor neurons that the brain uses to send messages to the muscles throughout the body. ALS most commonly affects those between 40 and 70, with as many as 300,000 cases at a time. Cases are getting younger and the numbers are growing. There is recent research that many veteran's from the Iraq and Afganistan wars are getting ALS. Federal Funding has been allocated from the Dept.of Defense to aid in research for our vets.

There is no cure for ALS but research is becoming more aggressive. Awareness is the first step.  If you would like to know more please visit the ALS Website at http://www.alsa.org/ and the MDA website http://www.als-mda.org/

The perplexing thing about ALS is it is inconsistent how it starts. Some will lose the mouth and throat muscle first which will disable their ability to speak.  Others, like myself will lose the strength in their limbs. We eventually all end up in the same place, paralyzed. There is one medication on the market, Riluzole.  This medication is known to slow the progression. We also understood that at some point the medicine would stop working and the drop off was dramatic.  My physical changes were about every 3 months. The area that was going to be affected next would sporadically cramp.  I opted not to take the medication. I felt I could adapt better by just listening to my body.

The life expectancy is 3-5 years.  That would have been accurate for me if I hadn't gone on a ventilator and feeding tube.

I am getting ahead of myself, that story is saved for later. :)

the Beginning

Thank you for checking in!
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.

The Beginning.
 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.

Chicago

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.