Sometimes we have days that change the course of our life. That day happened to me on a Father's day 13 years ago and I can't even remember most of it. I had planned a family brunch with my dad, but other events changed that plan.
It was a goregous warm June Sunday and I got up and went for a bike ride. That was at 8 am and the next thing I remember was coming out of a CAT scanner in St. Lukes ER at 2 pm . Apparently a car had opened its door into my path as I biked up Russell right outside Imaculate Conception church. Figures I would get hit outside a church since I was skipping church to do my bike ride. I hit the door so hard, the bike helmet I was wearing left ridges in my head. I didn't know it at the time, but I had a head injury and a broken collar bone. I don't remember any of it. According to an EMT on the scene I kept repeating myself, a classic sign of head injury.
I have a vague memory of being strapped to a backboard and being lifted into an ambulance. I know from taking care of patients on ski patrol you are only strapped to a backboard if you have a head or spine injury. I wiggled my toes, so I knew I wasn't paralyzed. I remember fading out as the ambulance started moving.
The ER doc came to talk to me after my CAT scan to ask if I remember talking to him. I didn't, even though he had talked to me twice before the scan. I was admitted for observation and spent the next two days getting tests. I still don't remember anything from that day. I am lucky I was wearing a helmet since a biker was killed in a similar accident in the Milwaukee area later that week.
I was assigned a neurologist to do follow up due to the head injury. I remember every time I saw him he would name the same three objects; a ball, a flag and a Christmas tree and ask me to repeat them back.
I mean for crying out loud the objects never changed, who wouldn't remember them. I couldn't make change or remember anything else for months but I could remember those three objects.
The neurologist decided to test my reflexes and found they were very diminished. He then did nerve conduction tests and found my nerve conduction was very slow. So he started testing me for all sorts of scary stuff like, ALS, MS etc. All the test came back negative. He was scaring the crap out of me.
A friend of mine asked if I had some disease that onset in middle age would I really want to know right then. I said no and never went back to the doctor.
Fast forward 11 years and my dad tells me one day he has an inherited nerve disorder and that is why he has no feeling in his feet and trouble walking. Trouble is his doctor did not tell him what it was and he didn't care. So now I know whatever I have is genetic and my dad and Aunt have it.
Two years ago my sister sent me an e-mail telling me two of my nieces have a genetic nerve disorder called Charcot Marie Tooth. I went to the CMTA web site and see symptoms described I had been having my whole life. So 13 years ago my neurologist missed me having the most common inheritied nerve disorder and it's one with a name I can't even pronounce.
I went to Dr. Lobeck, a nuerologist recommended by the CMTA . I followed up with a second appointment to Dr. Linn at the MDA clinic. Both diagnosed me with Type 1A which is the most common of the 22 types of CMT. Both told me they are amazed I am running. I have been told by two physical therapists that people with CMT can't run.
The problem is the bike accident changed my running dramtically. Because of the long layoff from the head injury and later surgery to repair my broken collar bone, my running times increased by over 2 minutes per mile. I once easily ran 7:30, now I stuggle to break 10:00 minutes. Any long layoff for a person with CMT increases muscle weakness. The layoff due to the bike accident caused a great loss in muscle strength and running speed.
I had quit competition 7 or so years ago because I was so frustrated by the burning feet, blisters and suddenly slow running times. I can clearly remember the last race I ran. It was the Pewaukee Beach run. Racing was no longer fun and I was not competitive.
I never stopped running. I kept running three times a week, including speed work and long runs into my routine so I could quickly ramp up again if I decided to race again.
That desire came back with my CMT diagnosis. I realize how lucky I am to be running at all and decided to put that blessing to good use. I founded Team CMT and have a new found purpose to my running.
I have to confess it's tough to see others winning medals with times I was able to run before my bike accident. I try not to think about what I have lost and concentrate on what I still have. I am blessed to be running and racing even if not as successful as before. I am now running for a greater purpose. One I will seize until I can't any longer.
I have dedicated my running to raising awareness and funds for Charcot Marie Tooth Disorder. I never thought a simple summer bike ride would change my life. Life is funny. You never know when an ordinary day will become a life changing event.
I had been told people with CMT can't run. There are five athletes on Team CMT with this disorder. Finding others that are also athletes may just be the life changing event they need, and it all started with that morning bike ride.
Founder & Manager Team CMT
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.
CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.
Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.
Structural foot deformities such as high arches and hammer toes are common.
Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.
Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.