Technology is a gift - phase 1

There was a day I was climbing up the back steps to my office The front starcase was too public and it took some time for me to get up . I had 4-5 steps to go. I sat on the steps and cried, my left leg and left arm  had no more umph. I certainly did not want anyone to see me crawling (foolish pide). It was Yosemite all over again. It was then I realized that the stairs were not for me anymore. The owners of L&L were trying to figure out where I could work from a single story. Unfortunately that meant bumping someone from their office or renting an office and wiring it to the main office. They were very empathetic and the extent they were going to accommodate was above and beyond. After weighing the options we agreed that I should conduct business from my already established home office. With the technology available and the fact that my handicap would progress, this seemed like a good solution.

This proved to work out well. Lynne brought me files, etc. daily, I used software , Gotomypc, that allowed me to run my office computer as if I was sitting at my desk. Absolutely amazing! A little unsettling if you happened to be in my office and see my computer working by itself.

My body was behaving consistently, a new area weakening every 3 months with cramps and involuntary muscle spasms preceeding. What a wonderful feature of ALS, no pain and a warning system that allows you to prepare for the next change. I started using Dragon Software which gave me the ability to use my voice instead of my hands. Most Smart Phones can get the Dragon app now, but then I felt very cutting edge. I used my right hand to move the mouse. As that arm weakened I found a hands - free mouse by SmartNav. This is an optical device that is placed on top of the computer screen. It has a built-in infared. A receiver in the form of a  self sticking small grey dot. I wore this on the nose rim of my glasses. It will stick on a hat, your forehead, pretty much anything as long as it lines up with the device. This system worked incredibly well as long as you have a voice  .

A challenge of Faith

Work and the kids were handled, what about Steve? He had some pretty big challenges to face. In 2005 his best friend from childhood, Derek lost the battle with cancer. Then the news about me and the ALS ENOUGH, right? NO? Let's see what else he can take on. In December 2006 Steve's closest friend and brother went to sleep and never woke up. This was incredibly devastating to all of us. Walt was the fun uncle.  You could depend on him to make sure you never took yourself too seriously. A huge heart and adored Chris and Ashton. He was enormously proud of the kids.Walt and Steve were always there for eachother, through the good and the bad. Just as Steve assimilates one grief another hits. His mother had medical issues for years and Steve was the one to take care of her. Taking care of his mother was an added responsibility, especially when added to his already chaotic life. His mother passed in late 2008, leaving Steve to deal with her affairs

Walt and Chris

Steve and I became Christians a few years prior. It was a difficult road for Steve, to believe Jesus Christ was the Son of God and our salvation. His faith was young and fragile. So much death and broken dreams shattered what faith he did have. The time when he needed faith of some kind was when he turned away in anger.

It's said that God only gives what we can handle and the challenges break us down so through our weakness we can become closer to God. My faith tells me it's this way but it's very hard to explain to someone who is not inclined to lean on something that is  ethereal..

So what has kept Steve holding it together? Medication wasn't the answer. That just made him feel dull, like being bound in a blanket. He talked to a therapist a couple times and that was not a good combo. Steve didn't want to burden his friends with his troubles, he looks to them for normalcy.  He has his father's ear, +my friend who is a pastor talked  us through some rough patches,  and is comfortable talking with his boss when he needs to talk. These relationships and his friends on Facebook have kept him from imploding. A sincere thank you to everyone.

Walt Sr., Walt Jr., and Steve

He has made progress in the faith area. Steve no longer makes bible thumper jokes. I can    point out blessings we have received and miracles we have witnessed and he doesn't tune me out.  He understands that the ALS has strengthened my faith and I rely on my beliefs to get through the day. Faith is a private issue and I don't believe in forcing it on people. On the other hand, I believe that God loves everyone and He has a purpose for us all.  This, and the knowledge that there is a place in heaven waiting for me, gives me extreme peace. I want that for everyone, especially my family. So I pray for Steve to let go of his anger and accept God's plan. If he leans on God and lets Him carry the burden maybe Steve will experience the joy I do of just being alive and at peace.


Steve still has his dark moments but he is a loving father, husband caregiver.

I am blessed to have him.

Walt Jr. as a young Marine

Walt Jr. loving life

Adapt , Embrace and make life an Adventure, Part 2

Reality was settling in at home. Steve and I were still debating how to approach the children. Do we tell them that there is no cure? That my body will slowly deteriorate? That I may not see them graduate? Fall in love? Get married? Have children? Do we use the word "die"? Steve and I were just realizing our own future changing. We weren't going to grow old together, take our kids to college, plan weddings, play with our grandchildren  - together.  Steve was going to be the crotchety old fart spending hours fishing and jeeping. I was going to be the busy volunteer and we would travel. Italy, Africa and Alaska (that was my vision). Those thoughts had to be pushed aside for now, we had to be strong and positive for Ashton and Chris.

I have always believed that there is a reason for everything. There is a positive side to every situation, the glass is half full and a smile will give you strength and comfort to those around you. My prayer was that I had successfully taught the kids the same, they were going to need this wisdom.

Chris was 11 and busy with establishing himself in school,    paint ball, archery and his social network. There is so much uncertainty of self at that age.  We decided to keep details light with Chris. We told him that I would not get better and different parts of my body would get weak. 
He was worried if I was in pain. Once he was assured there was no pain he relaxed. His way of adapting was to be my helper, if I needed anything he would help me get it. The universe still revolved around him at this age so it didn't seem to bother him much at the time. He took it in stride. Chris didn't get embarrassed when I would go to functions at his school with a cane or in a wheelchair which made me very proud.

Ashton was 16, had her driver's license and was experiencing a new kind of freedom. We were more straightforward with her. She kept her emotions  mellow around me.She felt comfortable asking questions  and had plenty of them. We would spend the weekends watching back seasons of Desperate Housewives, snuggling and talking. She did ask dad the more direct questions, Am I going to die? Was it hereditary? Steve was very candid with her. Ashton processed one way with her friends and another way with us. A good group of friends is so important during the difficult times, especially at 16. We are grateful for the support she had. There was   a little bit of a wild streak for a few months, grades went down, her head was not in the game on the soccer field, some partying. Was that the age or the ALS? I lean towards the age answer I remember 16 and many of you remember me at 16. When she got past that she put on a smile which helped her and those around her. She took an interest in the disease, did research, wrote papers for school   and  talked to others about it . Ashton embraced the situation.

This is enough right now. I don't think I have mentioned yet that I type with my eyes. That will be explained in a technology post.
The emotional subjects make it hard to type.
Cannot type when my eyes have tears. :)

A Thankful Moment

It's a cool 68 and blustery day, this Saturday. Some sun, a true fall day. Kind of a nice change to see a season on the central coast. This is the kind of day I like to stay cozy in my bed.

Steve offers to put me in my chair, bundle up and sit outside and watch him wash the cars. Contrary to what I prefer I jump at this offer! This is a true act of LOVE in my book. It's a tricky task to get me from bed to wheelchair, with two vents, etc. It's not something he does often because the weekend is time for him to rest and relax. Every time we do it, it's a refresher course. One of my nightime caregivers, Annie, stayed late to help and learn.

Steve did splendidly and now refers to himself as the "chair god", King for a day.

I must say, it was cold out, but we cruised around our neighborhood a few times and enjoyed the sunshine, Santa Ynez mountains and the blue skies dotted with fluffy white clouds.

In that short 3 hours there is so much to be thankful for. Great weather at the right time, Annie here to help me get ready, a patient husband that wanted to spend time with me, to be able to drink in the beauty of our surroundings. I feel very fortunate that I have the equipment and support to enjoy life, this is what it is all about .

If you are the host/cook this Thanksgiving, remember to slow down a little and enjoy your surroundings and family /friends.We are truly blessed.

All is well

Hello friends and family,
Sorry I haven't posted in a few weeks. I slept most of that time getting rid of a cold and adjusting to the cold temperature.

I know that's not much of an excuse compared to many of you who live back East! But mid-sixties is a shock to those of us in California!

All is well and I am ready to get back on schedule. Thank you for your comments, keep them coming.

Heidi

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.

Hello world!

At the request of many I FINALLY have entered the world of BLOG. Thanks to my computer savvy and beautiful cousin Joan. I expect this to be information about my adventure with ALS and will hopefully be a source of information and inspiration. Please ask questions and give me suggestions. I look forward to the future with you.

Joan and me