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“Honestly Tommy, we’re not getting out of this one alive.” – Don Manns (a friend)
One of the first things people learn about ALS is that there is no known cause, no known cure. Although not strictly true, in some cases the ALS is genetically inherited, it is 100% true that there is no known cure. Can you imagine how you would feel if you were diagnosed with ALS? If your doctor or your neurologist suggested that you might have ALS? Probably somewhere between unsettled, disturbed, and terrified. You might think of Lou Gehrig, or Steven Hawking and wonder how they dealt with this blow and handled their lives. More than likely you will think of your friends and family and how prepared you are to die. That’s right, to die! I was first introduced to the possibility that I might have ALS in May 2011. This was confirmed after a month of tests in November of that same year. These writings are my story written in the hope of providing insight and a light in the darkness for anybody impacted by this terrible disease. Just because we are not getting out of this one alive, it does not mean that we do not live.
ALS: the basics
ALS (also known as Lou Gehrig’s Disease) is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed (http://als.ca/en).
ALS causes weakness with a wide range of disabilities. Eventually, all muscles under voluntary control are affected, and individuals lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, people lose the ability to breathe without support. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those with ALS survive for 10 or more years. More than 12,000 people in the U.S. have a definite diagnosis of ALS, for a prevalence of 3.9 cases per 100,000 persons in the U.S. general population. ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. ALS is more common among white males, non-Hispanics, and persons aged 60–69 years, but younger and older people also can develop the disease. Men are affected more often than women (http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm)
- I’ve been living for greater than 5 years with ALS and have been on long-term disability since January 2015.
- I am a widowed father of three early-20s young adults.
- I earned a bachelor of science in mathematics and worked in the financial and technology solutions market for over 30 years in jobs ranging from software programmer to executive.
- I was a somewhat competitive amateur athlete in a variety of sports.
- I currently spend my time reading, writing, and watching sports and Netflix.
- I am always investigating ALS, researching and installing as much automation as possible in support of everyday semi-autonomous living… Basically, nerding out.
This is my story…welcome to it. ~Tom