Fighting Back

Ever since my diagnosis of Corticobasal Degeneration (CBD) I have looked for some sort of treatment.  My neurologist, or perhaps I should say, my neurologists, have assured me there is no treatment for my malady.  What would you do if you were told you had an incurable illness that is progressively robbing you of your balance, your voice, and your emotional equilibrium?  On top of that, since this is a degenerative illness, no matter how bad it is today it will probably be worse tomorrow.

I believe I have made it all the way through the Kubler-Ross stages of grief in the past two years.  If you are not familiar with this, Elisabeth Kubler-Ross, a Swiss psychiatrist, observed that most people dealing with a major trauma pass through five stages, which may overlap.  These stages are denial, anger, bargaining, depression, and acceptance.  I know that I, at first, denied this was happening to me.  There must be some other explanation, but I suppose my second trip to Mayo Clinic convinced me I was dealing with CBD. 

I have tried my hand at bargaining with God, but I am a good enough theologian to realize the Lord does not typically respond to our prayers the way we have it figured that He should.  That has not stopped me from praying for deliverance and asking anyone and everyone to join me in that plea.  I know I am on quite a few prayer lists, and I am always humbled when someone says they are praying for me.  Of course, all this intercession has had some interesting twists and turns.  I had a chance encounter with a young man of the Charismatic persuasion who, upon seeing my cane, asked if he could pray over me.  I certainly wasn’t going to object, but after the prayer the fact that I still needed the cane seemed to disappoint him more than me.  While he did not say it bluntly, there was mention that lack of faith might have short-circuited the process.  In that same vein, a sincere Pentecostal friend came to my home to anoint me with oil and earnestly pray for my healing. 

I know the Lord is more than capable of working a miracle, but I must go forward with my life dealing with my situation as it is.  I have been more than a little depressed by all of this.  The thing that does not allow me to stay there is the remarkable blessings God has poured out on me along the way.  In fact, I have come to expect that when things really seem dark, God will turn on a light.  I am somewhat surprised that I have not really been angry about all of this.  I can see where someone might be, but I believe I am just not wired that way.  The last stage is acceptance.  I am not sure I am there yet, and if acceptance means resignation, I don’t want to get there.  I am determined to fight back.

My first thought was to get some experimental drug treatment, but I have yet to find one for CBD.  When I say “experimental,” I mean it.  I told a friend that if there was some drug that was successful with rats, I would be willing to give it a shot!  I know that is a theme in quite a few sci-fi movies, and it never turns out well, but I just might be the exception!  Returning to a serious note, I have tried to stay abreast of the developments in neurodegenerative diseases, and my doctors assure me that there are promising developments coming. 

Since drug trials are not an option, my next thought was the “off label” use of some existing drugs.  This has led me to low dose Naltrexone, or LDN.  My physician didn’t see how this could hurt so he gave me a prescription at my request.  I have been on LDN for about six months.  It is difficult to estimate its value since you can’t know how you would be without it, but I plan to continue its use.

One thing my neurologists have consistently suggested is physical therapy.  I was of the opinion that I could do that myself, but as I saw continued deterioration in my walking I knew I needed professional help.  CBD is considered a “Parkinson’s Plus” disease since it has some of the same symptoms as Parkinson’s.  That led me to more than a few websites which deal with that illness.  I was particularly interested in a program that uses the training techniques from boxing.  That’s right, boxing!  They explain that the forced intensity of the exercise is good for balance, gross motor coordination, and punching seems to calm tremors.  That was enough for me to call the local affiliate, Rock Steady Boxing of Music City.  Joy and I went to observe a class and decided it was worth pursuing.  My first session left me stiff, but excited that I may have found something that would be helpful.  As we drove home I remembered Apollo Creed’s line from Rocky III, “He has to use and strengthen muscles he didn’t even know he had!”  I have definitely found some of those muscles, I wouldn’t say I have strengthened them yet, but I am determined to do so.

Some of you reading this are probably wondering if this training includes getting punched.  No, at least not on purpose!  At my second session I just lost my balance and went, face first, into the floor.  Joy, and the three trainers for the class, rushed over to help me up.  Joy’s first statement was, “Did you break your nose?”  I suppose it was my reddening nose and a small amount of blood that led her to that question.  The coach assessed the situation and realizing no major damage was done said, “Well, now when you tell people you have been training to box you will look the part!”

I want to do more than look the part; I want to live the part.  I want to fight back against CBD and perhaps regain, if only temporarily, some of what it has taken.  I know it will be a tough fight and involve blood, bruises, scrapes and stiffness with a good amount of frustration sprinkled in for good measure.

In the movie Rocky, the night before the big fight, Rocky confides to Adrian, “I can’t do it.”  He knows he can’t win against the Champ, but he determines to “go the distance” with Creed.  “Nobody has ever gone the distance with Creed.”  That is what I want to do--go the distance.

Pardon Me?

 I have written in previous posts about the effect CBD has on my voice.  I wrote of how my speech pathologist at Mayo Clinic diagnosed me with mild to moderate dysarthria.  Since the “D” in CBD stands for degeneration, my voice has gotten worse  and will continue to do so.

As I understand it this involves three issues.  First, I no longer have complete control of all the small muscles which make speech possible.  Second, some of the muscles have lost strength and this is asymmetrical; that is, a muscle group might be weak on one side and not on the other.  Third, all of this has affected my breath control. When you combine these three factors the result can be a raspy, slurred, slow, and weak-sounding voice that tends to trail off at the ends of sentences.  Now, if I “warm up” my voice and take care in articulating my words I certainly can be understood, even still preach, but it takes my effort and my listeners’ patience.  The problem is that in casual conversation I usually have not warmed up and conversation has a certain pace that almost always has to slow for me to participate.

Now, why bring all this up?  Not for the sympathy of my friends, rather to give them an understanding of what is going on.  I enjoy being with people--I always have.  My vocal difficulties have made me more of a listener than a talker, and that is OK by me.  When someone does engage me in conversation, it is difficult to just jump in.  The typical result is either miscommunication or my having to repeat myself.   A related aspect is that the speech problems make it much more difficult to convey emotion with my voice.  Think for a moment how much of a joke or a witticism depends on how the remark is delivered.  I never realized how much was being communicated by inflection, until I lost it.

A final issue related to this is a matter of perception.  When people hear someone talk the way I often do, they might conclude there is some mental deficit.  To the best of my understanding, and the testing of my neurologist, I haven’t lost any of my reasoning power yet.  I may not be the sharpest knife in the drawer, but neither have I gotten any duller.

Balance

One of the issues that I face anytime I stand up is proper balance.  Most of us make minute corrections which keep us upright; in fact, most of us do this without conscious thought.  Because of CBD some of my muscles will get the messages and some will not.  That can lead to getting off balance and to falling.  I have found the cautious thing to do is to be looking down, watching where I step, unless the ground is flat.  I suppose I am overly sensitive about this, but I do wonder what people think as they meet me and I don’t look up.  It seems downright unsociable to me, but I have had two bad falls where I was trying to maintain eye contact with someone as I took a step in their direction.  I have found, though, that if I am holding my wife’s arm and using my cane I do regain a sense of confidence. 

That word “confidence” leads me to another area of balance, emotional balance.  I have written in the past of having an irrational anxiety about crossing the street.  There is just something about not being able to move faster than a moderate walk that plays on my mind.  Still, since I can avoid many crossing situations, that fear has receded.  What has become more of an issue is taking a step off a curb, or going down a few steps.  I can see myself falling.  There is some fear of hurting myself, but there is a greater sense that I am about to embarrass myself.  I have found that if there is nothing (like a handrail) to hold onto, I either take a risk or ask for help.  What works on me are situations where there is no one to ask.  I have been struck by the number of buildings, even new ones, which are not in compliance with the Americans with Disabilities Act.  To me, it would be giving in to an imbalance to let such anxiety keep me from going places.  I don’t want to become a prisoner in my own home.  I want a cautious but balanced approach.

Finally, I want to strive for balance of concern.  This week I had lunch with a friend.  We talked about many different things, and in the course of the conversation he mentioned some serious health problems he was having.  As the discussion progressed he stopped himself and said, “I know this doesn’t begin to compare to what you are going through.”  I assured him that was OK.  He talked on for a few minutes and then repeated his apology.  At that point I told him I really wanted to hear what was going on with him.  I further explained that I honestly get tired of always being the focus of concern.  After all, I have been a pastor my entire adult life.  I have listened to folks talk about their problems, but since my diagnosis and retirement that part of my life abruptly stopped.  Sure, there were times when people spoke to me about minor problems they thought were major, but even then I always felt that a listening ear was a ministry.  Now this should not be misunderstood.  Some might conclude that I never want to talk about my situation. Obviously that must not be the case or why would I be writing this?  I just don’t want to be the sole subject of conversation.

Balance.  When I was the pastor of the First Free Will Baptist Church of Savannah, Georgia I used that word so often that one of my deacons told me, “Pastor, I believe ‘balance’ is your favorite word!”  I am not sure about that, but it is something I have a deepening appreciation of.