The year was 1977, I was eight years old. I headed out the door for my weekly three block journey to my piano lesson. As I rounded the corner, halfway into the second block, my anticipation turned to reality. At first, I denied it. Not today I thought...I was NOT going to let this happen today. I chanted to myself, “I’m fine, I’m fine”. I kept walking, one foot in front of the other, slow and steady. With each step my heart began to beat faster – I ignored it. Within a few minutes, my legs were heavier than lead weights, and my beating heart was all that I could hear.
I had almost reached the corner, entering into the third and final block when I realized I could not take another step. I knew the drill – I had to stop.
Many years later, I came to learn that my premature exertional fatigue, stiffening leg muscles & accelerated heart rate were a result of my body’s inability to convert glycogen to glucose as a source of energy for my hard-working muscles. My doctor’s call it McArdle Disease – Glycogen Storage Disease Type 5.
McArdle Disease is a metabolic disease that affects skeletal muscle. Because the muscles cannot properly metabolize energy, individuals experience exercise intolerance, early fatigue, painful cramps, weakness of exercising muscles and myoglobinuria. Myoglobinuria, the condition where myoglobin is present in urine, may result from serious damage to the muscles, where muscle cells breakdown, sending their contents into the bloodstream, potentially leading to kidney failure. To learn more about McArdle Disease visit: http://www.agsd.org.uk/tabid/1137/default.aspx
This summer I will be joining a group of people with McArdle Disease to Walk over Wales - 210 miles in total. Our journey begins on July 2nd 2010, and will take us from the town of Llandudno on the north Wales coast, through to the capital city Cardiff - where we will arrive on Aug 2nd 2010. This will be quite a remarkable feat for us!!
The purpose of this walk is to raise awareness of this rare disease, and to raise funds for the creation of a patient-focused instructional DVD.
The onset of the disease is noticed in childhood, but not diagnosed until the third or fourth decade of life (such as with myself). Not being diagnosed, and therefore not being able to manage the disease appropriately, leads to worsening of symptoms in middle age, and potential muscle wasting.
Through heightened awareness, individuals are more likely to be diagnosed sooner, thus allowing for a much improved quality of life.
Together we are hoping to raise $25,000 pounds. All of the money raised will be used to produce a DVD for people with McArdles - to help them cope with the condition as best they can. (Each walker is responsible for their own expenses). The DVD will include various strategies for exercise/daily activities and other useful tips.
Thank-you for supporting me...every step of the way!
My son, Brayley, shaved his head today in support of my efforts! Thank-you sweetheart! You look fabulous!! ~ check out the before and after!!
Stacey
**Our logo was developed by a wonderful girl, who also has McArdles. The turtle represents our motto - 'Slow n' Steady'...as this is how we have to approach all activities. Thanks Stephanie!!
