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.