ALS Unlimited — May 23, 2016 at 9:12 am

Getting personal : In the beginning

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We all are multidimensional beings. Each of us has different focus, strengths and interests.  Overly simplified the human dimensions are animal, intellectual, spiritual and social. I lived my life predominantly as an animal. Not just by working out physically but by getting things done, building and fixing things, software systems, business teams, hockey teams, bicycles and boats. To me almost nothing is more rewarding than successfully completing a project, a trip, an endeavor.

Aspen by the Jerry Garcia shrine with Pete, Fay and Yung

The Jerry Garcia Memorial

Everyone has stress in their lives. From a holistic health perspective ulcers, high blood pressure, sciatic nerve issues and other such ailments can be related to the handling of external or internally generated stress. From 2003 to 2009 I certainly had my fair share of stress. We completed the sale of our software solution business in 2009 after a multiyear roller coaster ride through the.com bust and the global financial meltdown, our teenagers were living through a variety of challenges including depression and our marriage like many had its challenges. Multiplying the stress, I knew in my heart that I was not living true to myself. At about the same time I ended up with severe sciatic nerve issues impacting my ability to walk, travel and be the physical being that I always had been.  Recuperating from sciatic nerve issues through a combination of acupuncture, chiropractic and physical therapy wasn’t easy and unfortunately was never complete.

Sl_StressBrain

There were indicators along the way, muscle spasms and slight coordination issues, but the first evidence of the real problem came when working out. Finally back to fighting weight of 180 pounds (measured at 4% body fat in my 20s, probably about 10% at age 50) the sciatica was gone but I could no longer do a calf raise on my right foot. No matter how hard I tried I could not stand on my toe. A big change from the calf raises of 150 pounds in my youth and the present day 70 pounds I was using for my left calf. I visited my doctor who referred me to a neurologist.

sciatica

May 2011. The neurologist observed fasciculations or a random firing of muscles in my arms and legs, measured the electric signals up and down my calf, performed a few other tests and left the room for about twenty minutes. When she returned it appeared to me that she had been crying. Not a good sign. She let me know that as far as she could tell with the limited testing that she performed that I had ALS. She referred me to a neurologist/specialist clinic for further testing but having experienced this before with at the least one other patient she was fairly certain of the diagnosis.

Fasciculations are a common symptom of ALS. These persistent muscle twitches are generally not painful, but can be annoying or interfere with sleep. They are the result of the ongoing disruption of signals from the nerves to the muscles that occurs in ALS. https://www.mda.org/disease/amyotrophic-lateral-sclerosis/signs-and-symptoms

Leaving the neurologist appointment, riding the elevator, walking through the parking lot and sitting on the grass in front of my car I wondered, what is ALS? Nothing like a smart phone to make sure you are informed on most matters. No known cause, no known cure, 2 to 5 years to live. Shocking! True? The sciatica issues, the fasciculations and the failing coordination were all strong indicators. What to do? I was project managing on a lucrative contract in the US at the time, loving building a $50 million core administration capability for a large financial services company, acting as a trainer for one of the kids’ hockey teams, our basement was in the middle of being finished, substantial mortgage debt, significant depression issues with one of our teenagers and other challenges on the homefront. Life was already stressed to the breaking point and I knew that my wife would take this news rather personally. I confided in my best friend. Started answering head-hunter calls searching for a full-time job with benefits closer to home and told no one else. It’s hard to get a good job if you are known to be terminally ill.

stress level conceptual meter indicating maximum, isolated on white background

November 2011. There is no specific test for ALS. The diagnosis is deduced through a process of elimination. Lyme disease, brain tumors, HIV/AIDS and more all ruled out I started warming my wife (Vicki) to the fact that I might not be well. We traveled together to the ALS clinic and I forewarned her that the conclusion might be devastating. It was. The likelihood of ALS was confirmed as extremely high. Vicki’s first reaction was: Who is going to take care of me? She was angry with the future denied. Biking, sailing, running, tennis, golf, gourmet cuisine, parties and friends, the retirement of the future all gone.  The circle of people in the know beyond my medical team: 2. The basement finished. Still working in the US. Calf weakness more pronounced. Limping. Animal, intellectual, spiritual and social: This animal was in need of a mission.

Tests and diagnosis
(http://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/basics/tests-diagnosis/con-20024397)

Amyotrophic lateral sclerosis (ALS) is difficult to diagnose early because it may appear similar to several other neurological diseases. Tests to rule out other conditions may include:

  • Electromyogram (EMG).During an EMG, your doctor inserts a needle electrode through your skin into various muscles. The test evaluates the electrical activity of your muscles when they contract and when they’re at rest.

Abnormalities in muscles seen in an electromyogram can help doctors diagnose ALS, or determine if you have a muscle or nerve condition that may be causing your symptoms. It can also help guide your exercise therapy.

  • Nerve conduction study.This study measures your nerves’ ability to send impulses to muscles in different areas of your body. This test can determine if you have nerve damage or certain muscle diseases.
  • Magnetic resonance imaging (MRI).Using radio waves and a powerful magnetic field, an MRI can produce detailed images of your brain and spinal cord. An MRI can evaluate if you have spinal cord tumors, herniated disks in your neck or other conditions that may be causing your symptoms.
  • Blood and urine tests.Analyzing samples of your blood and urine in the laboratory may help your doctor eliminate other possible causes of your signs and symptoms.
  • Spinal tap (lumbar puncture).Sometimes a specialist may remove a sample of your spinal fluid for analysis. In this procedure, a specialist inserts a small needle between two vertebrae in your lower back and removes a small amount of cerebrospinal fluid for testing in the laboratory.
  • Muscle biopsy.If your doctor believes you may have a muscle disease rather than ALS, you may undergo a muscle biopsy. In this procedure, while you’re under local anesthesia a small portion of your muscle is removed and sent to a lab for analysis.
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  • Anonymous

    I enjoy reading the reality of your journey Tom – so well written and so honest. It is difficult for many to imagine what these first few months were like for you. But Tim and I know. Keep going with your story. Looking forward to it.

  • Margot

    Thank you Tom. Love always ❤

  • Kimy

    What a ride it’s been. So thrilled you’re finally telling your story. You have always been a great story teller.