The Long Answer, Part 4

I have mentioned in previous posts that Corticobasal Degeneration effects how I walk, how I talk, and the control of my emotions.  Perhaps it’s paranoia, but when my walking is particularly halting I feel like people are watching me, and that is bad.  What is worse is when I have a difficult time making myself understood in conversation.  But the worst thing to deal with is the inability to control my emotions.  It can be down right embarrassing.

Joy has tried to accompany me on most of my visits to my neurologist, Dr. Callahan.  She was there the first time that he mentioned CBD as the likely diagnosis.  After Dr. Callahan said the words, Corticobasal Degeneration, there was something of an awkward silence.  Never one to allow things to get too heavy and genuinely trying to lighten the mood, I said, “Well is this something that kills you or does it just make you wish you were dead?”  I don’t know if Dr. Callahan had ever encountered such an abrupt question, but he proceeded in a very calming manner to tell us what we might expect.  On the emotional front the first thing he mentioned was the lack of any sort of filter on what I might say.  Driving home Joy commented that she should have told Dr. Callahan that I had been “filter-less” the whole time she had known me!  Most folks who know me well are probably nodding their head at Joy’s statement.  But, that was not all to expect.  CBD can lead you to become compulsive, doing things without really thinking through the consequences.  It can also lead to being obsessive about routine, always feeling the need to do things the same way, to having a pattern to follow.  When I heard this I began to imagine myself like the TV detective, Monk, or to update the image, Sheldon Cooper of the Big Bang Theory.  Perhaps one of the definitions of normal is to be able to navigate between being obsessive and compulsive.

Perhaps the worst aspect of my lack of emotional control is being overwhelmed and becoming tearful so easily.  The medical term for this is Pseudobulbar Affect or PBA.  Technically this can be either inappropriate laughter or crying, but so far I have only manifested the sad side of that coin.  What is particularly hard about this is not knowing when it is going to hit.  I can be watching something on TV or trying to tell someone about something of only mild emotional impact and I find myself choking up.  To put it another way, the intensity of my emotional reaction to things is way out of whack.  I have probably cried more in the last year than I did in the previous twenty.

There is also an interplay between my walking, talking, and emotions.  I have been privileged to preach six times since I retired.  I have noticed that when it came time to walk to the pulpit my legs would stiffen up, making my gait particularly difficult.  I see this as tied to the emotion of the moment.  Emotions can also cause my speech to slur.  This is true whether I am becoming tearful or trying to tell something I find funny.  Joy says that I don’t laugh the way I used to.  Her observation is that my mouth seems paralyzed when I laugh.  I have noticed that when I tell something funny my voice begins to slur the closer I get to the punch line.  The emotion is effecting my speech.

I am not sure what the cumulative effect of all this will be on me.  I like to think of myself as an essentially positive person with a well-developed sense of humor.  I don’t want that to change, but it seems at times I am no longer in charge of my emotions.  In my more somber moments I have thought about how all of this will impact those who know me, especially those who know me well.  It is my hope that this blog will serve as an explanation and a reminder of happier times.

The Long Answer, Part 3

“Mr. Corn exhibits perceptual evidence of a mild-moderate dysarthria, with clinical features which appear compatible with a Spastic (upper motor neuron) Dysarthria, including slow, reduced rate, imprecise articulation, slow but regular AMR’s (alternating motion rate), low pitch, reduced variability of pitch and loudness.”  That is the heart of the report that I received from Virginia Chapa, speech pathologist at Mayo Clinic in November of 2015.  She had mentioned the word Dysarthria in our discussion and explained that it is a motor speech disorder which is typically the result of impaired movement of the muscles used for speech production.  This issues from some damage to the brain.  I suppose all of us know someone who has speech difficulty after a stroke.  My situation is not dissimilar to that with an important exception, CBD is progressive.  There is no way of knowing where it will stop and most people with this disease eventually become unable to speak.  As I said in my last blog post, I have talked for a living.  The idea of becoming silent is more than a little frightening.

Now, there is nothing funny about any of that, but at least two aspects of my time with Mrs. Chapa made me smile.  After we had spoken for just a few minutes she gave me a test.  I was to name as many animals as I could in 60 seconds.  What was funny about this was I had seen John Travolta given the same test in the movie Phenomenon.  He had blown the evaluator away by naming a list of animals in alphabetical order and then asked if the examiner would like another list of different animals in reverse alphabetical order!  No, I didn’t get as far along as Travolta, but I did get 27 animal listed before I was stopped by a smiling Mrs Chapa.  She informed me that most people come up with 15 animals, I had passed with flying colors!  Mrs. Chapa immediately wanted to know why I had done about 20 of these in alphabetical order and I explained about the movie.  “Well, this proves two things, there is nothing wrong with your memory and you do not suffer from aphasia!”  I suppose it was the quizzical look on my face which led her to explain that aphasia is an inability to find the right word.  I think coming up with benobo, a sort of dwarf chimpanzee, in my list demonstrated I was aphasia free!

The other humorous thing was Mrs. Chapa’s suggestions to me about my speech.  Since she knew I was a pastor she felt it important for me to explain my speech difficulties to my congregation lest they think I had been drinking!  Along this same line she suggested I get a letter from my doctor explaining that I had a neurological problem which often slurred my speech.  This was to be kept in my car just in case a policeman who pulled me over assumed the worst!  I jokingly followed through with the first of these suggestions but not the second.  I just can’t see a letter stopping a policeman from drawing his or her own conclusions.

That was about a year ago.  If my dysarthria was mild to moderate then I believe it would simply be classified as moderate now.  In other words, it has gotten noticeably worse in a year’s time.  This was one of the leading factors in my resignation from the pastorate.  I began to realize that doing a Sunday School class and preaching twice on Sunday was just too much talking for one day. 

My vocal problems have also affected my interaction with people.  Since there are times that it is a struggle to get things across I have become more of a listener, which isn’t all bad.  When I complained about this to a good friend he jokingly responded, “It makes you seem more intelligent!”  Perhaps so, perhaps not, but as I explained to him, the witty rejoinder is my stock-in-trade.  I just can’t throw a verbal hand grenade into a conversation anymore whether it is to cause a laugh or shoot down an argument.

Oddly enough I can still preach.  There is something about the setting which forces me to work harder at articulation.  Preaching has always been an intense thing for me, but with the added speech problems I have been forced to take it up a notch. I don’t speak anywhere near as fast, but I do so with deeper emotion and, I believe, more unction.  Some have even said that all of these problems have made me a better preacher.  In the words of Forrest Gump, “Now, I don’t know about that…”  but I do know that it has made me realize what a great privilege it has been to preach God’s Word.  I am thankful for it.

A final thought on all of this.  As far as I can tell, CBD has yet to affect either my memory or my intellect.  I feel certain that some assume it has.  Being quiet really isn’t in my nature, but it will have to become so for the rest of my days.  A few friends do seem to actively solicit my contributions to conversations and I appreciate that, but I know it will become less and less.  This is the hand that I have been dealt.  The question is, how well will I play it?

The Long Answer, Part 2

As I said in my previous post, Corticobasal Degeneration affects three things, walking, talking, and the control of my emotions.  This blog post will begin with the second of these, my speech.

My entire adult life I have been a preacher.  That means that I have talked for a living.  I recall one of my ambitions as a teenager was to work as a disc jockey, not because I loved music all that much, but these were the only people I knew who were paid to talk.  When I came to my last church I did get to live out that dream by being the Monday morning host of the Shepherd’s Hour on WQSV AM 790.  A position I held for 20 years.  As someone said, I have a face that was made for radio!  Whether that is true or not, I did have the voice for it.  I believe my primary spiritual gift is in the area of preaching and teaching and the effective use of one’s voice is crucial to that endeavor.  I distinctly remember my freshman speech teacher, Mrs. Laura Thigpen telling me, “Randy, your voice is a fine instrument!”  That is why vocal problems which began around Christmas of 2014 were a particular concern to me.

It began with a rasp, the same sort of thing which anyone might experience when dealing with a cold, or perhaps the day after cheering your voice away at a ball game.  The first Sunday that this happened I remember thinking I must have “preached my voice away.”  While I would not classify myself as a “screamer,” I can get loud when preaching and I had delivered that sort of sermon the week before.  I was sure that if I rested my voice for a day or two and used a few throat lozenges, everything would be fine.  It wasn’t.  I tried a number of home remedies and over the counter medications all to no avail.  A few months into all of this my wife told me that I seemed to also be slurring some of my words.

These vocal issues combined with the beginning of my walking problems had me genuinely worried.  The next step in the journey was actually a series of falls.  I believe I fell down six times in about six months.  The most public of these was at a high school basketball game where I fell while trying to negotiate the bleachers.  I don’t know who was more surprised by this, me or the lady into whose lap I fell!  Neither of us was hurt by this, but I do believe my pride was a bit damaged as I was helped up and exited the gym leaning on my dear wife.

It was a private fall which first brought me to my doctor.  Somehow I managed to slip in the shower and bang my head on the wall as I went down.  Joy was concerned that by the time I got around to telling her I had a substantial goose egg on my temple.  She insisted that I call our doctor who said given where the swelling was, he wanted to see me immediately.  After a brief exam he sent me to have a CT scan in Nashville and while Joy and I were on the way home the doctor called me with the results.  Now Dr. Brown is efficient, but I thought this quick a turn around on the report was ominous.  While not really a factor in CBD my physician informed me that I had serious calcification of the arteries in my brain.  The CT technician had told him, “It’s the worst I’ve ever seen.”  I mention all of this because that CT and later MRA would eventually send me to Dr. Alfred Callahan, a neurologist in Nashville.

Dr. Callahan, one of the nicest people I’ve ever met, listened to me describe my symptoms and then did a series of reflex tests.  He would order two MRI’s and an EMG before venturing a guess about my diagnosis.  He finally said, “I hope you don’t have it, but I think you have Corticobasal Degeneration.”  We talked about what that meant and then he said, “I want to send you to Mayo Clinic to see if they can find some other explanation.  I hope they prove me wrong.”  I hoped they could as well.

How Are You Doing?

Ever since I informed my church, my friends, and my family of my medical situation I am regularly asked, “How are you doing?”  People can observe me walking slowly and cautiously with my cane.  They can hear that my voice is slower, often raspy, and occasionally slurred.  A few have seen me lose my composure, being tearful about things which shouldn’t really elicit tears.  Some, I assume, are wondering what is going on that they can’t see.

Corticobasal Degeneration (CBD) like its name implies is a degenerative disease.  It is slowly getting worse.  All I can write about is what I’m going thru right now.  There are no “stages” to this disease and from what I understand it progresses at different rates in different people.  One of my goals is to have my case set a record for slow progression.  What Stephen Hawking is to ALS, I want to be to CBD!  So how am I doing October 10, 2016?  There are three areas affected by my problem, walking, talking, and my emotions.  In this blog post I will discuss the first of these issues, walking.

CBD is, among other things, a “gait disorder.”  That means it affects how I walk.  My leg muscles will sometimes tighten up making getting up from a seated position difficult.  I will often get part of the way up and then plop back down.  Once up, the first few steps are difficult but thankfully this movement will relax my muscles somewhat.  This whole process has some pain associated with it, but the real issue at this point is maintaining my balance.  Someone has said that walking is “controlled falling.”  That “control” is a matter of being able to make slight shifts, typically without a conscious thought.  Unfortunately for me many of those reactions are slowed.  The result can be a fall, but more often a near fall.  This tends to make me overly cautious.

Related to this issue is the ongoing problem with my balance.  That is where my cane comes in.  I don’t really need it for weakness in my legs or my joints, I need it for my balance.  If my legs are stressed, as in going up, and especially down, steps my balance is particularly challenged.  I must either have a handrail or the arm of my dear wife typically along with my cane to safely negotiate stairs. 

CBD is asymmetrical, that is it starts on one side of the body and will eventually move to the other.  This means that coordination is compromised.  I recall a basketball coach telling me once that given my height I could be a good basketball player if I only had some eye hand coordination!  Well, now I have even less!  Besides being a bit more of a klutz this lack of coordination has over stressed some of my muscles in my right leg and hip.  I have some pain in my hip and right leg that is a continuing aggravation, but nothing I can’t deal with.

I have noticed that the more tired I am, the worse things are.  Restful sleep would then be a thing to covet.  Unfortunately, my leg problems often stay with me through the night.  My legs will be “restless” and occasionally have a series of “jerks.”  The end result is that I have not had a full night’s sleep in quite some time.

I hope all of this will not come across like the blog version of a pity party.  For some time now when people ask me “how are you doing?”  I respond that there is a short answer and a long answer to that question.  This is the first installment in the long answer.  It is also my hope that this will be a help to those that come after me who have to fight with this condition.  I want them to know they are not alone.