Creuzfeldt-Jakob Disease | Big Sky Multisport Coaching & Personal Training

So, it’s been over 3 months since Ironman Lake Placid and I finally got around to uploading all my data from my GPS devices for the day. Better late than never, eh?

The Why

I’ve never really come out and said why I wanted to do an Ironman. For a long time I never thought I would want to do an Ironman. The miles and time involved to complete an Ironman seemed impossible, especially for a mediocre athlete like myself. Swimming, cycling, and running over 140 miles in under 17 hours was ridiculous and best left to the crazy, ripped and lean athletes. Even after my first Half-Ironman in 2011 I didn’t want to do an Ironman. Then, I watched the 2011 Ironman World Championships tracking my coach and a few fellow Maine triathletes and watched Chrissie Wellington not only come from behind to win, but with broken bones and serious road rash. I realized that there was something special about Ironman. My resistance against the idea started to turn into curiosity and finally the seed was planted. I was determined to become an Ironman someday. Ironman no longer seemed impossible, but a major goal that I was seeking to reach. Perhaps I was crazy to think little old me with my overabundance of injuries could hear Mike Reilly say that “You are an Ironman.”

I’ve always been very self-critical of myself. My father was very hard on me growing up and often pushed me to my breaking point with harsh, uncalled for comments. But, it formed who I am today. I am stubborn and I don’t give up easy. I will die trying. I hired a wonderful and supportive coach in 2012 to help prime me for my potential debut Ironman in 2013. I was still on the fence about it until I went to training camp and realized that I could do it. The impossible became the possible. I chose to do an Ironman to prove to myself that I am capable of what I put my mind too. I’ve always strived to be the best and worked hard to achieve it. I’m competitive by nature. I know I’m not the best. Many people are stronger and faster than me, but I strive to be the best and strongest person I know I can be. Completing Ironman Lake Placid this summer allowed me to put the little voice in my head that is constantly telling me I’m not good enough to rest. Ironman, the holy grail of triathlon, is achievable to anyone who is willing to take the leap and put in the work.

The Data

As I mentioned above, I finally uploaded all my Garmin devices to Training Peaks. During the race I used my Garmin 910XT and my Edge 800. Of course, being the technical idiot that I am, I messed up my 910XT and had the longest transition one of 112 miles! 🙂 Luckily, I had my Edge on my bike to catch a majority of my bike leg.

I felt like I had a good swim leg. I stayed off the cable to avoid the flailing arms and legs, but I guess I also swam an extra 0.26 miles by doing so! But, that also brings my pace down to 1:38/100 yards!

My awesome ability to swim a straight line…

My bike data was fun to view. According to Training Peaks I gained 10,423 feet! I’m thinking there is a major glitch in their elevation algorithm since I know I didn’t ride my bike a few times up and down Mt. Washington! I averaged a cadence of 80 rpm, which I’m happy with since that includes all the zeros from the 10k downhill section riding into Keene (that happened twice!), thus my cadence is actually higher. Winning! My power VI was 1.15, which is good for me, especially with the ups and downs of the course.

My run data was kind of sad to view, watching my declining pace over the course of 26.2 miles. But, I knew it inevitable. Darn, knee…

Declining run pace

The Photo I Carried

I knew my first Ironman would be special. I also knew it would be a long, long day that might involve some mental negative talk. I needed and wanted some motivation over the course of the day. My father refused to come to Lake Placid to watch and cheer me on and I was definitely disappointed about that. My mother was always one of my biggest cheerleaders in life and I knew that if she was still alive that she would have been there, getting up at the crack of dawn to drive me to transition and been there until I crawled across that finish line. On race day I carried her in spirit and also a picture in a little baggie tucked into my sports bra. When my thoughts turned negative and the little voice started whispering that I couldn’t do it, I thought about my mother. I was able to find my strength again and proceed onwards to the Olympic Circle. When my knee gave out at mile 18 of the run I thought back to her battle with CJD and realized the last 8 miles of the run was nothing compared to what that disease did to her.

My mom and Duke riding in Acadia National Park circa 1998

My mom and Duke riding in Acadia National Park circa 1997

My advice to anyone doing an Ironman is find something (a photo, a pin, a quote, etc.) to either carry with you physically or mentally throughout the day that will remind you why you are doing the race because there are times that your thoughts will go dark and you start to doubt your fitness, ability, and training. The mind can often push our bodies far past its breaking point when we believe we have a reason bigger than ourselves to be doing the crazy things we do.

One of my favorite quotes! (Source)

~ Happy Training!

Four years and it doesn’t get any easier…

Yesterday was the four-year anniversary of my mother’s passing. March 24th will always be a tough day, but it’s also a day of remembrance and celebration of a great woman’s life. Perhaps I’m bias, but my mother was an amazing woman whose life was tragically cut short by a horrific disease. I’d be lying if I said that it gets easier with time, but it doesn’t. Losing a parent is never easy, especially at a young age. There was so much more that I wanted to learn from her and experiences to share.

I was lucky that I was close with my mother. For most of my life she was a stay-at-home mom and then as my sisters and I got older she began to work from home as a stitcher. She worked from dawn to dusk in what we dubbed as her “sweat shop.” Some of the things that she sewed were not her favorite, but she did it so she could afford my expensive lifestyle, aka my horses. She was the one that would wake up early in the mornings to walk down to the barn to feed and clean the horses stalls and often did evening feeds when I was busy with school work. She spent many years and thousands of dollars to cart me and my horses’ butts around New England to compete every weekend. Those are the days that I’ll never forget. Those are the days that I miss.

Honestly, what truly makes me sad is what my mother will miss as my sisters and I get older. She wasn’t there to attend any of our college graduations. She won’t be there as we shop for our wedding dresses or see us walk down the aisle. She won’t be there as we start families or give us parenting advice.

It sucks. There is no other way to describe it. I miss her everyday. But, life goes on. We must put our best foot forward everyday and live life to the fullest. We are placed on earth for a short time and I believe that it’s our responsibility to do something meaningful with our time and hopefully leave this planet a better place.

In the past few weeks some exciting news has been released about Creuzfeldt-Jakob Disease, the disease that robbed my mother of her life. Creuzfeldt-Jakob Disease (CJD) is a rare and fatal brain disorder. It occurs about one in a million persons worldwide and is 100% fatal. In the United States there is about 300 new cases each year. My mother was one of them in 2009. There are three types of CJD: sporadic CJD, familial CJD, and acquired CJD. CJD is caused by prions, which are an infectious agent composed of misfolded proteins. Recently, some great news came out of Case Western University, the hub of CJD research within the United States. Studies has indicated that prions might play an important role in iron metabolism in the brain. The researchers also have developed a new more accurate test for CJD through a spinal tap. This is a huge breakthrough. I know when my mother was diagnosed, it was done mainly through the process of elimination. One of the main problems we had with my mother was that her first MRI and tests all came back normal, but her second set of tests a few weeks later were positive. Of course, the blood and CSF samples from my mother that we sent to Case Western for testing didn’t come back until after she passed. For more information on CJD then please check out the CJD Foundation website: www.cjdfoundation.org.

My mother, my sister and I (1989)

My mom and my horse Duke in Acadia National Park

My High School graduation with my parents (2005)

I hope I’ve made you proud dear Mum
For there will never be another.
Cause there is no love greater,
Than a child has for their Mother.

(Source)

RIP Mom <3

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Category Archives: Creuzfeldt-Jakob Disease

Ironman Lake Placid: The Why, the Data, and the Photo I Carried

Four Years…