911

Friday, September 15^th, turned out to be quite an eventful day for me.  I had been to STEPS Fitness for the massage therapist to work on my shoulder and had returned home for lunch.  Once I finished my bowl of Grape Nuts, I decided that such a healthy lunch should be followed up with a bowl of ice cream!  As I moved into the kitchen, my right knee buckled.  Earlier in the day, I had successfully dealt with the knee giving way, but this time I had in hand a porcelain dish instead of my cane, and I hit the floor, hard.  I had a fleeting thought as I went down that my head would hit the island in the middle of the kitchen.  What reflexes I do have caused me to turn enough to avoid the head injury, but instead I came down with my full weight on my left hip (and the bowl shattered into many pieces as it hit the floor with me).  I could feel something shift in my leg, but there was no immediate pain.  That reprieve lasted only for the second or two that I was motionless.  As I tried to roll to my right, the sharpest pain I have ever experienced radiated out from my left hip.  I am confident the my neighbors next door, across the street, and maybe even passers by on Highway 12 heard the scream I let out!  I came close to blacking out.  I had snapped the femoral neck, below the ball of my hip joint.  I would learn this is the most common variety of hip fracture.

As I assessed my situation, I knew I had to get help.  Joy would not be home until 6 and it was only 2.  The first task was getting my cell phone out of my pocket.  It would, of course, be in my left pocket.  After about 5 minutes of effort I got to the phone and tried to call my wife.  During most of the day she keeps her phone on vibrate, so I left a voice mail and then called the school office.  Within what seemed like a minute of that, Joy was on the phone with me.  I didn’t want to panic her, but still needed to convey the seriousness of the situation.  We jointly decided that she should call 911 and explain that she was on the way.  It was a good plan, until you factor in that EMS got to our condo much quicker than we expected, and what Joy estimated would be a 10-minute drive turned out to be closer to 20 minutes.  She got there just as the men were making a decision to come in either by breaking down a door or through a window.  Thankfully, they didn’t have to do either.  Seven beefy men and one thin young woman were soon in our kitchen assessing my situation.  Turns out, the woman was the medical authority of the group and directed the men in the least painful way to get me on the gurney.  Joy and I quickly decided our destination, Centennial Hospital, where my most recent medical problems (a heart stint and a pace maker) had been dealt with.  I would spend from Friday afternoon until Monday morning at Centennial and have a partial hip replacement.

I have had a week now to think about all of this, and I have come to some conclusions.  First, there are people I don’t even know whose job it is to care for me.  When the EMS folks filled our kitchen, I had no idea how they were going to get me out, but they did, and with less pain than I anticipated.  Second, there are people who do know me who care even more.  Once word got out, I received texts, emails, calls, and Facebook assurances of prayer from friends, flooding in.  The morning of my surgery Joy told me (I was a bit out of it) that quite a crowd assembled to show their concern and support.  This has been followed by many other visitors--first to Centennial and now at the Tri-Star rehab affiliate here in Ashland City.  I have to admit that during some of those visits I nodded off a bit while a visitor was talking to either me or Joy.  I was embarrassed, but then I thought, I’ve been talking in people’s sleep for years!  Third, the people who know me best, care the most.  My family has rallied around me.  It says something good that both of my brother-in-laws prayed with me, and my sister-in-law spent the better part of two days in my hospital room.  My siblings were ever present and carried the message of my fall to our mom, telling her I had broken my hip so I could be more like her!  My boys and their wives showed constant concern.  Benjamin and Rhonda brought their daughters to see PopCorn (their name for me) in the hospital, and I will never forget the worried look on three-year-old Melody’s face as she asked, “PopCorn, is your hip better?”  Last, and I assure you not least, is my dear wife.  She has done everything from hold my hand, to minister to my personal needs (and that is quite a list), debate the best medical procedure for me with my surgeon, and handle all the details of hospitalization.  I know I am not the easiest person to live with under the best of circumstances, but add significant pain and I really become a piece of work!  She has handled all of this with grace.

I had been told early on that falls are a major problem with CBD.  I believe that was the underlying cause of my knee buckling and certainly it slowed my reflexes and reactions, making a bad situation worse.  Recovery will be harder and longer, but this episode has shown me just how many people the Lord has brought together to be a blessing in my life.  I firmly believe that my fractured hip is one of the “all things” Paul had in mind when he wrote, “And we know that all things work together for good to them that love God, to them who are the called according to His purpose.”  I am a blessed man.

Just Can't

For almost two months I have been going to Step Fitness where there are a number of programs for folks with various physical challenges.  Mine is called Rock Steady Boxing where we use many of the exercises designed for boxers to increase agility, flexibility, balance, and to decrease tremors.  It is for people with Parkinson’s disease, and since I have what is called a Parkinson’s Plus illness, there is hope it will slow the progress of my symptoms. 

I have to say that I do think it has helped me in three ways.  First, I have surprised myself by working through some of my stiffness.  I have gone in on some days with short, almost jerky, steps and left with a near normal gait.  I wish I could say I stayed that way the rest of the day, but sitting for perhaps 30 minutes will bring back most of the rigidity in my leg muscles.  There have been times that just the drive home will do that, but I still have to think it is a net gain.  Second, I have to admit that punching the heavy bag is a great way to relieve stress!  It is downright frustrating to me when I think about all of the things I can no longer do, and I get angry at the prospect of losing even more.  A series of hard right crosses allows me to vent that anger.  Third, I have enjoyed being around the rest of the class and the trainers.  My group is usually eight folks who are at various stages of physical decline.  I am not the worst off in the class, but I am the only one to fall in the weeks I have been attending.  Each session we have either three or four trainers working with the group, and ever since my fall I have been shadowed by at least one of these trainers.  It is good to be with people who understand what I am going through.  Many of my friends are concerned about my situation, but these folks at Rock Steady can empathize.

As I mentioned earlier, there are other groups using the same facility.  I am not sure of the name of the group that comes in just as I am typically leaving, but they apparently have more physical challenges than I am currently facing.  There is one man who seems to always have the same tee shirt on.  It features an upside down Nike swoosh and two words in bold print, “Just Can’t.”  This play on Nike’s catch phrase may strike you as cynical, at least it did me the first time I saw it, but on reflection it seems less so.  Someone has said that life is a series of compromises, and a serious neurological disease accelerates those compromises.  For example, even the most avid golfers will play less and less if they live long enough and will typically stop altogether once their stamina is compromised by age.  I just got there a lot earlier than I wanted to.  I have encountered a number of things which I just can’t do anymore.  Things like riding my spin bike (lack of balance), walking long distances or negotiating bleachers (lack of leg strength and pain), even singing the congregational hymns at church (inability to “clear my throat” and weakened throat and mouth muscles).  Believe me when I say this list is suggestive not exhaustive!  Which brings me back to my tee-shirt-clad friend.  I prefer to think that “Just Can’t” isn’t a statement of resignation but of realism.  My reality has been restricted by Corticobasal Degeneration.  To think otherwise would be a self-destructive delusion at best and a one way street to depression and despair at worst.  No, I want to be realistic about what I can’t do, but I also want to always be pushing right to the limits my malfunctioning brain will permit.

Just can’t?  Sure, there is a growing list of things I can’t do, but why not work to maintain what I can rather than bemoan what I can’t?  This is not the intended challenge of Nike’s phrase, “Just Do It.”  I think it is far more than what the people at Nike had in mind.

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.