The Unexpected Journey
Chapter 2

Initial Reactions

When Dr. Cole initially called to inform me that my cerebellum was shrinking, he was more concerned than was I.  While the shrinkage obviously had significance to him, it had little significance to me.  Even when he said he would immediately schedule an appointment for me with a neurologist, I was not alarmed.  In the past, weird things had happened to me medically with no lasting consequences—like the white of my eye swelling over the iris as the result of an allergic reaction, or a leg not feeling or working one morning because of a nerve problem.  So my cerebellum was shrinking—big deal!

I have long appreciated Dr. Cole for many reasons!  He has met many needs with attentiveness and helpfulness. 

I also need to acknowledge that I much appreciate Dr. Tremwel as my neurologist.  She is kind and caring, but direct and unambiguous.  At each appointment she explains what is happening to me in ways I can understand.  She takes time to answer our questions and explain.  It is obvious she cares about her patients as people. 

I appreciate doctors who can explain the situation understandably, take the time to listen to you, and see the patient as a person.  I feel quite blessed to have both of my doctors.

I always want Joyce to go with me when I see Dr. Tremwel.  I want her to hear for herself what the doctor says and what I ask.  (Besides, my memory is not what it used to be.  I never want Joyce to say, “Why didn’t you tell me that?”)

Two things slowed the physical therapy sessions. The first was my fall that dislocated my shoulder.  The second was the fact that the original blood tests were inconclusive.  Though Dr. Tremwel seemed to have an educated guess about what might be happening with me, she does not guess when a test can reveal and document.


The Diagnosis

Finally, a diagnosis was possible.  We were taking what I called my “pine box tour” to prove to a number of my friends and my family that (a) I did not have cancer and (b) I was not about dead.  Dr. Tremwel called me on my cell phone in west Tennessee, confirmed she had received the blood test results, and arranged a “soon as possible” appointment.  For some strange reason I felt a sense of relief.  I was tired of waiting and wondering.

The appointment came.  I had a rare genetic problem.  This genetic condition expresses itself in a number of ways.  Of those ways, I have the least aggressive and least violent type of the problem.  The other known ways are vicious, and they express the presence of the genetic problem with horrible consequences.  The consequences of my form of the disorder probably would not affect how long I lived.    The most that can be done is to treat the symptoms as (if) they occur.

The approach to try to bring my situation under control was rather simple.  First, I had to stop all physical activity.  I was to do nothing that would run the risk of additional falls.  If I were to break a bone that resulted in my immobilization, the necessary inactivity would be tragic.  What I lost (lose) through inactivity would not be recovered. 

Second, stop anything that made me sweat.  When my body is hot enough to sweat, the shielding around my nerves temporarily dissolves until my body “cools down.”  The shielding functions in a manner similar to the insulation surrounding electrical wiring.  If the shield temporarily disappears, that produces several results: (a) messages from the brain to the muscles are interrupted.  (b) Without instructions, the muscles do not know what to do.  (c) Muscular cooperation is greatly impaired.  (d) In that situation, falls are more likely to occur.

Third, take no chances.  Seek to function preventively. 

Fourth, never take the benefits of physical therapy for granted.  Treat physical therapy regimens seriously.  The training in and lessons from physical therapy make valuable contributions to preventing undesired consequences produced by the medical problem.

The objective was simple: make the deterioration proceed as slowly as possible through proper exercise.  To me, I was given an impossible task: exercise, but do not sweat.  Since I sweat easily and freely, I do not know how to exercise without sweating—with me, exercise and sweating are companions.

One question we immediately asked: Should we ask our children to have blood tests for this genetic disorder?  The answer: No.  The trigger for the genetic problem is present in many people.  It is not understood what activates this trigger to produce the genetic malformation.  The tests could reveal conditions that might produce the problem, but the tests could not reveal if the problem would occur.  The resulting anxiety if those conditions existed would serve no purpose because the conditions could not predict whether the problem would occur.

For my children’s sake, it was fortunate that I have the problem.  For a reason not understood, the chance of the condition being transmitted by a father is considerably less than is transmission through a mother.

No one I know in my family has this problem.  I decided every problem begins with someone—all problems have a “starting point.”  For whatever reasons, this one started in me.  My hope for my family is that the problem ends in me as well.


The Emotional Meltdown

Shortly after diagnosis, I emotionally crashed.  To react emotionally to personal problems is not characteristic of me.  May I illustrate by using a couple of examples.  (a) When we returned in 1974 from Africa, I gained weight rapidly.  I started and continued an exercise program (the program continued for years) to address my weight gain.  (b) When I was near age 40, a doctor friend discovered I had a serious cholesterol problem.  I modified my diet, kept my weight down, and (with difficulties) began medications.  For years I kept my weight between 175 and 180 pounds, and I stayed in decent physical condition.

Finally, the magnitude of my diagnosis sank in.  I realized that no matter what I did, nothing would make things better.  The situation would get worse, and it seemed to me there was little I could do.  The only question was “How fast will conditions get worse?”  My physical future seemed black and hopeless.  I never “felt” old before.  Instantly, I felt decrepit and helpless.

For 24 hours, in every activity, I said to myself, “There will come a day when you will not be able to do this.”  Standing, walking, driving, taking a tub bath, tying my shoes, shaving, combing my hair —name it, and I will likely see the day I can not do it.  These things may seem insignificant to you, but to me they were overwhelming.  Never before had I realized in specific, absolute terms how helpless I will become.

Only for a short period did I grieve my projected physical helplessness.  As quickly and unexpectedly as that period began, I realized, “You cannot live this way!”  Almost on the heels of the thought of helplessness was this thought: “God has used everything else that happened in my life.  No trying experience has been wasted.  Every trying experience has produced beneficial results. Wonder how God will use this?”

That ended the period of feeling sorry for myself through projecting myself as a future victim.  Surely, there are unexpected moments when I feel a wave of depression or a sense of sadness.  Recently, I saw the picture of a huge buck a friend killed on opening day of deer season.  Instantly, I thought about how much I missed being in the woods in the fall.  Or, for reasons I do not analyze, a sense of sadness descends on me on an occasional Sunday.  My point: those moments come, but they are always temporary.  They are single waves, not an ocean of despair.  They are temporary like a wisp of smoke rising on a windy day.


The Precipice

From Dr. Tremwel’s diagnosis through October, I mainly had physical therapy and speech therapy appointments.  Initially, I thought I could improve my speech problems by arranging some “in my office” appointments.  I thought with enough work on my part and some guidance from trained people, my worsening speech problems would improve.  A busy Dena Jenkins met with me frequently to suggest some voice exercises and to listen to me read.  An equally busy Rebecca Holloway took notes of speeches primarily to increase my awareness of problem areas.  Both are well qualified to give speech therapy.  However, regardless of their efforts or my work, it was painfully obvious to me that my voice would not respond to or improve with either knowledge or effort. 

The verbal decline continued until many could not understand my projected speaking voice.  On June 4, 2006 (the day after my sixty-sixth birthday), I gave my last public speech to a sizeable audience.

In the period from diagnosis through October, a very physically active me became abruptly a very physically inactive me.  Suddenly, “a me” who walked three miles in the early mornings two days a week did not take walks, short or long, any day.  Suddenly, “a me” who went to the gym three days a week did not go.   Suddenly, “a me” who did a lot of yard work did no yard work.  Suddenly, “a me” who went to the woods each fall did not go to the woods.  Abruptly, a “me” who loved to be outside stayed inside.

I was not mentally prepared for the result.  My symptoms increased quickly and raged. I reviewed my 2005 and 2006 appointment books, and the decline was obvious.  I was extremely active with work, marriages, funerals, guidance appointments, etc. prior to diagnosis and was decreasingly active after diagnosis.

Parts of my physical life shattered. When I stopped exercising, it became hard for me to walk around a large store.  Even using a shopping cart for support helped little! Shortness of breath plagued me.  Weakness was a companion.  Muscular twitching was a daily experience. 

I remember having a persistent, low-grade fever that inexplicably appeared and stayed as long as it wished.  It appeared for no obvious reason!  When that fever came, I felt awful!  I was not accustomed to feeling awful!

It seemed that a good, cooperative body that in the past had served me well was going haywire. My body seemed to be more my enemy than my friend.  I felt my immediate experiences were conspiring against my confidence.  I felt like I was falling off a cliff with no parasail above and no reason to expect a soft landing below.

These feelings continued until, in a controlled environment, I was allowed to resume exercising in late November, 2005.  Gradually, for the first time, the physical situation stabilized, and a slow physical improvement actually began.  Today, that period seems like a dream.

I cannot say enough to express my appreciation to the staff and leadership.  Neither was ever intolerant.  Never did they give me reason to be concerned about my present or my future. In fact, they reacted (and still do) as if I am normal—quite a feat!

Copyright 2010

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