An Abiding Faith and a Positive Attitude
by Paul E. Ertzinger (Feb. 1991)

Personal history
I am now 79 years of age, born in Indiana (1911), and raised on a farm until graduation from college, have been married 50 years in December 1989, and have one son, Richard, age 47, owner and operator of a home building corporation in the Washington, D.C. suburbs and who lives only one mile from our home here in a suburb of Washington.

I retired in 1964 from the FBI as an investigative Special Agent after 28 years of service in the U.S. and one period in Germany at the close of World War II where I participated in the interrogation of Nazi was criminals, Hermann Wilhelm Goering, Joachun von Ribbentrop and Hans Fritzsche. My service as a Special Agent in the FBI also included some instructional activities as well as special liaison duties at the U.S. Congress, Supreme Court, White House, Foreign Embassies and the media.

Subsequently I served as executive director of the U.S. Capital Historical Society and as chapter and national officers of the Society of Former Special Agents of the FBI. Also, subsequent to the FBI retirement, I assisted a small group of former Special Agents for a period of six or seven years in supplying physical security to the four small children of King Hussein of Jordan, who were being raised in the U.S. by Princess Muna, one of King Hussein's earlier wives.

Having always been an accountant by profession, I established a tax consultation business 23 years ago, operating an office in downtown Washington the last 13 years. I currently drive 18 miles to and from my office each day in heavy traffic. Using hand controls on my auto makes driving no problem at all for me.

My CMT history
I first noticed a small weakness in my left leg in January 1976 (age 65). Prior defects noted were high arches since birth, weak ankles in high school and a lack of reflexes in knees in college.

After checking in with my family physician and a local neurologist in 1976, I was referred to Johns Hopkins Hospital Neurological Clinic in Baltimore, MD (about 40 miles from my home) where I was hospitalized for seven days affording me every available test. This first report diagnosed my situation as chronic peripheral neuropathy of the Charcot-Marie-Tooth type.

Thereafter, until the fall of 1989, I visited the clinic every six months and they continually searched for a final determination. During this period, they tested me for, and eliminated for me, all the following: peripheral neuropathy, progressive motor neuron disease, muscular dystrophy, amyotrophic lateral sclerosis (ALS), myasthenia gravis and Duchenne muscular dystrophy. In the spring of 1989, I spent seven days in Johns Hopkins Hospital taking massive doses of Cytoxin as a test treatment. Although I lost all my hair, the treatment failed to produce the hoped for results. Finally, in the fall, of 1989 it was determined that I definitely have Charcot-Marie-Tooth disease. Johns Hopkins advised me that I was their oldest patient with CMT and that they will continue to see me on semi-annual visits for follow-ups.

The slow but steady progress of my disease is best illustrated b the following aids I have adopted: started 5/79 using a cane; 12/83 left footdrop brace; 9/84 walker; 4/85 forearm crutches; 8/85 easy lift recliner chair; 8/85 auto hand controls; 10/85 custom molded ankle/foot orthosis; 9/86 hand controls on second auto; 2/87 liberty lift stair climber; and 3/89 replaced forearm crutches.

Other illnesses experienced during this period: 6/86 kidney stone removed by lithotripsy; 6/86 discovery of malignant tumors in bladder; 7/86 cataract removed; 7/86-8/88, 30 cancer treatments (Theo Tepa, Muta Mycin and Intravesicat B.C.G.); 6/86-7/90, 15 cystoscopic exams with general anesthetic (10 showed tumors and five showed no tumors).

Comments
After a most active life, until age 65, of physical activities related to youth on the farm, school and college, 28 years in the FBI as an investigating Special Agent, and 10 years of varied experiences in serving several national organizations in administrative capacities, I became aware of a deficiency in my physical body movements – particularly my feet and legs.

The past 15 years I've experienced a slow and gradual development of CMT, which means I now walk slowly with arm crutches and a leg brace necessitated by less than half strength in my right leg and no strength at all in my left leg. Difficulty in keeping my balance, in walking, arising from chairs, navigating steps (stairs) without hand rails, dressing myself, and lifting my feet more than a few inches off the floor, means I must confine my movements as much as possible to still continue my present work and activities. It is my determination to stay on the crutches as long as I possible can before going to a wheelchair. I'm still better off than most CMT patients!

I have felt one great challenge as a result of this development in my life. I find great satisfaction in accepting my restrictions and in finding new activities, and changes in old activities, that I can engage in without sacrificing my lifelong determination to perform in the most efficient manner possible.

I feel I have proven over and over, at least to myself, that there is no value in complaining upon facing new obstacles, and that if I seek an immediate solution to the problem, I usually find one in less time than I would have spent complaining.

Positive thinking is always the result of having a deep and abiding faith in your religion. Until the solution to the muscular dystrophy diseases (CMT, etc.) is found, there is no better remedy for CMT than possession of an abiding faith and a positive attitude toward this affliction.