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.