An Unexpected Fall

An Unexpected Fall

I don’t really think I could count all the times I have fallen down since my brain was invaded by corticobasal degeneration (CBD).  Of course, all of them were unexpected, but one, as of this writing my last one, was unexpected in a different way.

It was a typical afternoon, and I was working away in my study when I began to cough.  When you have a problem with aspiration, coughing can get intense and this spell was worse than usual.  Finally, things stilled, and I knew a glass of water would be helpful. I stood up, took one or two steps away from my desk and began to cough again!  I did have both hands on my walker, but that wasn’t enough.  I found myself falling backward first hitting my desk and then my chair on the way to the tile floor.  Ever since I broke my hip, I have had a healthy fear of falling. As I lay there on the floor for a moment, I did a quick inventory of myself, looking for the pain of a broken or cracked bone.  Thankfully, nothing registered.  The next order of business was to get up.  Getting up proved to be more of a challenge than you might think.  They tell us that CBD is typically not a “wasting disease,” that is you don’t lose muscle from it.  However, what I have found is that the coordinated use of those muscles has become a problem.  I struggled for half an hour to get up and just couldn’t do it.  At one point I was thinking that if I could just push myself up to my hands and knees, I would be able to grab something and get vertical. I put everything I had into doing the equivalent of one push-up and failed.  As I lay on the floor, I remembered passing an Army commissioning physical where I had to do 25 push ups in two minutes; now I couldn’t do one! Well, what was I to do now?  I had my cell phone in my pocket so I could call for help.  As much as I didn’t want to become the elderly lady in the TV commercial, I needed to call my wife at school and tell her, “I’ve fallen, and I can’t get up!” Joy was coming through the door as quickly as the speed limit would let her, and together we figured out a way to get me up.  I have never been so tired in my life.

Fast forward a little more than a week, and the bruises from my fall were fading.  My two brothers have been good about coming to take me out to lunch every couple of weeks, and on a cold, overcast day we headed out to a restaurant.  Everything went great until we exited to get in my younger brother’s truck.  I had a “to-go” cup of tea and my older brother took it to put in the truck.  I was on the sidewalk and there was a step down to the parking area.  I have made that sort of step many times before without incident, but not this day.  I suppose it was pride that made me not want to wait for one of my brothers to come back and give me a hand.  You can probably guess where this story is going!  I took the one step, the walker flew out in front of me, and I went face first into the asphalt.  In a flash my older brother was pulling me up and then my younger brother was holding me upright.  I can honestly say it is the fastest I have ever gotten to my feet since I began dealing with CBD!  By the time we got home my right eye was beginning to swell.  Initially, I didn’t feel all that bad, but within an hour I knew I had bounced off the pavement.  I texted Joy, and, once again, she came home early.  Upon seeing me she felt like I ought to go to see our doctor. He took a look at things and decided that given the placement of the blow to my head, a CT Scan was called for. We did that as well as an x-ray of my knee, which was really beginning to hurt.  Thankfully no brain bleeds or broken bones.  On the way home Joy said, “I knew that CT Scan wouldn’t find anything.” Imagine that, scanning my head and finding nothing!  Of course, she didn’t mean itthat way, but I repeated her saying for a week!

They say bad things come in threes.  A week or so later I was checking my email and noticed one from the UCSF Aging and Memory Center.  They are doing a clinical trial of a new drug which may slow the progress of CBD.  About six weeks prior, I had put my name in for every clinical trial the government web site listed.  This email wasn’t entirely unexpected, but I had pretty much given up hope of being a lab rat in anyone’s study.  When you are told that there is no treatment for your illness, even a long shot can give you hope.  The message asked if I would be willing to talk on the phone for about 20 minutes to see if I met their criteria, and within an hour I was talking to a pleasant woman named Vivian.  Everything went along fine, and I began to feel better and better about the prospect of getting this drug, that is right up until the end.  “Do you have a pace maker?”  Well, yes I do, but I had asked if an MRI were possible with one and authorities assured me it was.  “Randy, I think that is exclusionary.  Let me check around to make sure and call you back.”  About 20 minutes later Vivian called back.  My pace maker would exclude me from the clinical trial.  I suppose Vivian had dealt with disappointing potential patients before.  She was very empathetic and hoped I wouldn’t be too disappointed.  I said I wasn’t, that I had suspected something would keep me out, and I had tried not to get my hopes up. 

I am not sure how convincing my lie was to Vivian.  For about an hour that afternoon I began to think about possibilities I had only dreamed of.  Things like walking without a walker, being able to drive again, and living without the dread of what I wouldn’t be able to do tomorrow that I could do yesterday.  This was the unexpected fall.  Hope is a funny thing.  It can rapidly lift you up, but if hope is dashed just as suddenly you drop, and you will end up lower than you were before hope came along.  That evening I was hip deep in the “slough of despond.”  I made the mistake of estimating how long it would take a drug to move from a phase 2 clinical trial to being commercially available. There are a lot of variables in that, but the answer to how long was, too long.  I slept fitfully and finally got up about 4 a.m. to read my Bible.  I wish I could say a verse just jumped out at me and gave me an overwhelming sense of peace, but that didn’t happen. Instead I began to think of my situation in comparison to that of others.  Being a pastor all of my adult life has meant I have seen others suffer. I have seen cancer patients whose bodies dwindled away and dementia patients who minds did the same.  I remembered the funerals where I had buried someone younger than myself.  I began to think of all the pictures I had seen on the CBD Facebook page, especially the before-and-after pictures.  Then I slowly came to a conclusion: What right did I have to feel sorry for myself? As someone much smarter than I put it, perspective can be a blessing.  It was to me that morning.  I glanced at my watch and saw it was 6 a.m.  I wasn’t entirely out of the slough of despond, but neither was I as deep as I had been.  I went back to bed and thought of a verse from Proverbs which has come to mean a lot to me.  The context speaks of the value of godly wisdom and then promises, “When you lie down, you will not be afraid; Yes, you will lie down, and your sleep will be sweet.” Mine was.