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According to the ALS Association, approximately 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time.

No one knows the cause of the disease, why it never progresses the same way in any two people, nor why reported cases are rising in numbers.

I have ALS.

I’m in a whole new learning curve. I never had a serious illness until January 4, 2014 when I heard the words, after a full day of neurological tests, “You have ALS.”

As a Christian, I am allowing ALS to be a classroom in which I am learning new things about myself, about those who love me, and about how phenomenal God’s grace is.

This blog is an attempt to share my journey as I deal with ALS and the life-style changes it imposes.

As for blogging, I’m a “newbie,” but my family kept saying, “Let others know what it’s like to live with ALS. What you’ve told us verbally needs to be put down in writing.” So that will be what my posts will focus on.

I welcome your questions and comments.

Ken Wackes

Photo above used under license from Shutterstock

About

Alarm signals

A month before my diagnosis I said to my wife, “I’m certain that at some point I felt well, but I can’t remember when.”

Alarming changes told me that something was wrong. An increasing decline for over a year in my physical strength and endurance, an increasing slurring of speech, shortness of breath, and a general overall angst now had a known cause–ALS.

  • Attempting to play horse shoes in May 2012 at a party celebrating a grandson’s high school graduation, I could not reach the stake at the other end.
  • While hiking with my family up an easy “old lady’s” incline, I had to stop repeatedly to catch my breath–previously my wife and I had hiked many difficult climbs in the Rocky Mountains.
  • I developed a slurring of speech.
  • During a long bicycle ride I labored to raise my head above the handle bars to see where I was going.
  • Climbing into my boat or Ford F-150 became inceasingly difficult.

ALS has brought about major changes in my life.

Five years ago I was riding a bicycle 24 miles a day. Today I spend my waking hours in an electric wheelchair. Five years ago I was teaching high school history classes. Today no one understands my speech. Five years ago I was very self-reliant. Today I cannot bathe myself, clothe myself, open a door by myself, or turn pages in a book very well. I breathe,  aided by a ventilator.

ALS is a terminal disease, but I do not fear death.

I am a Christian, so I do not fear death. When I die physically I will enter heaven, not because I deserve it or have earned it. Jesus Christ, through his death and resurrection, has, as my substitute, paid the penalty that hung over my head, and God the Father has accepted Christ’s death as total payment for my sinful arrogance, self-will, and disobedience.

Since my diagnosis, things I had previously given much attention to (e.g.football scores, the latest smart phones, the daily news and politics) now seem non essential. And things which I thought were “down the road awhile” are suddenly “here and now.”

In the New Testament (Colossians 1:22) is found an astounding declaration that I recite to myself at least once daily.

“Once you were alienated from God and were an enemy in your mind because of your evil behavior. But now he has reconciled you by Christ’s physical body through death to present you holy in his sight, without blemish and free from accusation.”

Personal information

Name: Ken Wackes

Home: Crystal River, Florida, U.S.A.

ALS Diagnosis:

  • Initial diagnosis: January 4, 2014, North Florida Medical Center
  • Confirmation of diagnosis: March 10, 2014, Mayo Clinic
  • Current support: ALS Clinic, University of South Florida, Tampa

Married: Ruth Markle (1960-present)

Children: Paul (Allison), Karen Lynn (Anthony), Linda Joy (Rob)

Grandchildren: Paul, Christian (Kelly), Aaron, Tyler, Rebekah (Zac), Hannah, Jonathan, Lauren, Kendall, Daniel

Vocation:

  • Christian missionary living with Ekari tribe in West Papua (New Guinea) – 1964-1969
  • Associate minister, Coral Ridge Presbyterian Church, Fort Lauderdale, FL – 1973-2004
  • Headmaster, Westminster Academy, Fort Lauderdale, FL – 1973-2004
  • Executive Director, Christian Schools of Florida – 2005-2015
  • Chief Executive Director, Christian Schools of Florida – 2015-present

Education: Fort Lauderdale High School, Nyack College, Manhattan School of Music, Jaffray School of Missions, Columbia Theological Seminary, Vanderbilt University

About ALS

Following is information about ALS posted by the ALS Association at  http://www.alsa.org/about-als/facts-you-should-know.html.

Photo: Students at Seven Rivers Christian School participating in Ice Bucket Campaign for ALS.


Who Gets ALS?

ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 6,000 people in the U.S. are diagnosed with ALS each year. (That’s 15 new cases a day.) It is estimated that as many as 20,000 Americans have the disease at any given time. According to the ALS CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database are Caucasian.

Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women. Continue reading “About ALS”

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