Thursday, February 12, 2015

Ten Years with ALS!

Jan 26, 2005 was the day that Hing and I were sitting in one of the doctor’s examination rooms hearing the news that changed our life, I had ALS. Previously I had a series of testing done on my body in attempt to rule out everything else. Six months earlier my family doctor gave me a hint that it might be ALS. We made the mistake of looking ALS up on the internet and it horrified us. Three to five years to live! We were so young to live with this disease.

We were in such a state of shock we decided not to say anything to our family. Fortunately my ALS doctor was extremely hopeful and compassionate. He is on the international ALS board and said don’t give up! Hing spent time researching ways to slow down my disease. For example our family went organic.
We talked with our Colorado and Tennessee families the summer of 2005. It was a tearful time in our life. I was a manager at FedEx developing computer applications. It was extremely stressful job which was not healthy. My boss and I agreed after six months to step down. It was extremely difficult to tell my FedEx team and our people that we supported. More tears.
I first used a cane and then about six months later a walker. Eventually I received a motorized wheelchair from the ALS Association. The ALS Association support group meetings were incredibly meaningful and gave us hope! Oh I can't begin to tell you how much the ALS Association means to me. The ice bucket challenge raised so much money for research, it's incredible! More reason for hope!

In late 2005 we started building an extension to our house off of the first floor. It was finished in the spring of 2006 just in time because I could no longer climb our stairs. One of greatest things in our backyard we built a nice fire pit! I stopped camping with our Boy Scout troop so the fire pit reminded me of the camp fires of the past! My son Chris loved camping as well as me! I have fond memories of us being in the great outdoors!

I was having trouble talking in the spring of 2006 and although I could stand up on my own. The main issue was choking on food and liquids. In June of 2006 I retired on disability from FedEx.

Here's a picture of my FedEx team,  the VP of our division and my boss on the day of my retirement. 

I found it difficult to leave the daily routine but the most difficult part was not working with the people. A good benefit was I didn't have to deal with the stress. At that time Hing was my primary caregiver for a while until we hired a professional caregiver.

I was living in the extension and the nights were lonesome with my wife and children sleeping upstairs. When 2007 rolled around I was loosing the use of my arms but I could drive my wheelchair. Fortunately a good friend gave me a cool joystick device so I could still use my laptop. I love technology!

Computers were always a hobby of mine and I am very proud that my children appreciated it too. My daughter Nicole really learned quickly and she used to paint computer drawings.

She loved art and in middle school started stop motion videos by taking picture after picture. She totally amazed our family, friends and teachers! So creative!

Here's an example: 

In June of 2007 I received my eye gaze computer, Erica.

Erica is my life line to the internet as well as allowing me to speak! Without Erica I wouldn't know what to do with my life. Communication is essential to me. How do I communicate without ERICA? I use a amazing tool called a spell board. It's double sided. My family and caregivers count the numbers until I indicate which line to say letters I invented short cut letters to make it easier for example HO is hot and CO is cold.

My spell board: 

One frustrating thing about my disease is not being able to speak  when I feel pain especially without my computer. Sometimes I want to scream in pain but cannot! So I make a horrible face but if my caregiver isn't looking at me it can be a few minutes to get relief. Fortunately I can feel everything. People who are paralyzed can't feel and if they bump their foot on something they didn't know about it.  Another problem is I have spent many years in my wheelchair sitting, I developed sores on my poor bottom. My caregivers know how to tend to it daily. 

In June of 2008 my Colorado family made arrangements for me to fly out to Colorado for a summer vacation.
PRE-flight picture.  

My dear mom lived in a handicap accessible house so it was perfect for me!

My sister Kate researched holistic treatments in Fort Collins and found a well known doctor who was willing to work with me. We were so impressed with Doctor Billica Kate, mom and I decided it would be better if I stayed in Fort Collins to get the special treatment. Just the other day Doctor Billica told me that he has learned a great deal in treating me for over 6 years and he past that on to he patients! He called me a trailblazer! I was born in Colorado and absolutely love it here; Hing knew my love for it and agreed that it would be better if I stayed. I’m so lucky to have a wife that understands me!

Kate and her husband  Ken found a townhouse in September 2009 because my mom was diagnosed with stage  colon cancer. It was a total shock to her and our family! It was the first time in our family that a family member got cancer. Mom and I have always been close. People ask me what is my secret to be happy and smiling all the time? Part of my answer is my parents taught me to be positive despite what the world hands out. The other part is that I have enjoyed living and experiencing things in my life for example being able to travel all over the world. Also my love of adventure! My dear mom passed away in March 2010. I think of her every day! I have comfort knowing that she is with me in spirit! My sweet mom was always there for me!

I bought my wonderful townhouse. Kate and Ken gutted the house to make it handicap accessible. Ken ripped the carpet out and put beautiful hard wood floors in! We hired a man to widen all the doors. The bathroom was converted to be all handicap accessible. I love living here! Luckily my wife and children come to visit once  a year!

This picture was taken in Aug 2014 up at Kate and Ken's mountain home called Sunhaven. 

In 2009 I was having trouble breathing because my diaphragm muscles were getting weaker. Most people with ALS decide not to get a tracheotomy because they don’t want to go through the trouble. They choose to die of their disease. The special treatments that I received have actually stalled my disease plus I was living in my kind of paradise! Why end my life now? I decided to live with ALS! Also I hired top notch caregivers and I was alive - It was wonderful! The operation for my trach was successful and I felt great! I tell people that I love breathing normal again.

Here's my hospital picture after the surgery. 

People ask me why do I keep going? One word – HOPE! Hope for a treatment and eventually a cure. I would like to walk again. Communication is essential, I consider myself as a great communicator. I would like to talk again. Finally I set goals or milestones. My first milestone that I set was in 2006 – was to see my son Chris graduate from high school. He graduated with high honors 14 out of 462 in 2010!
My oldest son Matt is happily married is in the Navy and has six children! In 2014 I was blessed with his wife Kim having twins! Guess what? One of the twins is a girl! It is my first granddaughter! Her name is Aurielle and her twin brother is Zephyr. Kim is active on Facebook so I get a lot of pictures and stories.

Nicole is pursuing her dream by attending a world known art  college called Savannah College of Art and Design in Atlanta. She is absolutely loving it and getting praises from her professors!

Here's my favorite video of Nicole's:
Titled "Make It Interesting"

Chris graduated with a bachelors of Science Degree in electrical engineering in December of 2014. He is currently going to grad school in the same field. Fortunately he decided to live at home with Hing while going to the University of Memphis. Hing loves having a man around the house! Chris came to visit in January for a 3 day visit. From there he went skiing in Utah. He loved it! While he was here we went to the archery range at Jax Outdoors!

I’m so proud of my children and my grandchildren!

Life is good!
Family time is the best especially in the mountains!