ALS & My Dad

"ALS (Lou Gehrig’s Disease) is possibly the most deadly disease many people have never heard of."

 -alsa.org  

ALS took another man from his family today.  A student at my school lost his grandfather.  His mom lost her dad.  I'm very familiar with ALS.  At 17, I wasn't.  I had heard of Lou Gehrig's Disease but only because of my interest in baseball and Lou Gehrig as a player.

I didn't know anything about the disease itself (Amyotrophic Lateral Sclerosis).  When I was a freshman in college, I learned more than I wanted to know when I got the call from my mom in January that doctors suspected my dad may have the disease.  I was 17; my siblings were 19, 14, 9, and 4.  Dad had just turned 43.  The doctors still wanted to rule out a couple of things that may be causing my dad to lose muscle tone in his legs, but I had a gut feeling that it was ALS after reading about it on the Internet.  In April, a week before my birthday, Dad was diagnosed with ALS, a death sentence.

What is ALS?  Read here for the medical explanation.
Here are some more facts (taken from the ALS Association website):

• ALS is not contagious.

• It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.

• Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.

• Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.  More than half of all patients live more than three years after diagnosis.

• About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.

• ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.

• ALS can strike anyone.

• The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.

• There can be significant costs for medical care, equipment and home health care-giving later in the disease.  It is important to be knowledgeable about your health plan coverage and other programs for which your may be eligible.

My dad went from walking, to using a crutch, to two crutches, leg braces were added at some point, to a manual wheelchair when needed, to a power wheelchair.  Friends made our home accessible by building ramps to the main entrances and within the house.  We received a power lift recliner as a gift.  A track system was put in the house from the bedroom to bathroom.  My parents' bed was replaced with a hospital bed.  Hand controls were put in Dad's truck.  A van with a wheelchair lift was purchased.  And the list goes on.  I went back to college in Iowa for one more year after the diagnosis and then transferred to a state college to complete my degree.  Dad reached his goal of making it to his 25th wedding anniversary.  My dream of having him at my wedding came true when JD and I married when I was 20.  (The anniversary party and my wedding were just a week apart).

Through it all, Dad was strong.  He was positive and upbeat most of the time, even as he had to depend more and more on his family, friends, and caregivers for daily care.  He participated in a drug study, and while there is now a drug that is believed to slow down the progression of ALS slightly, there is no cure.  If you ever have the chance to give to the ALS Association, please do.  Help us find a cure.

On August 22, 2003, at the age of 47, my dad went to rest in the arms of his Heavenly Father.  He's in a better place with a new body.  A month earlier, we had found out we were expecting Ryley.  He never met any of his grandchildren.  We talk about him often, the kids know who he was, what he looked like, and like to visit the cemetery.  They know that they will get to meet him someday in Heaven. I'm thankful that JD knew him and we can share memories.  We started dating about 4 months after Dad's diagnosis, so he traveled most of the ALS journey with me.  The saying "It's better to have loved and lost than to have never loved at all" is so true.  While I miss my dad greatly, I am thankful for the time I had with him and the love that he had for his family and the love and respect that we had for him.  He'll always be in our hearts.

Connor family, I'm thinking of you, and pray that God will bring you peace and comfort.