2008

My Story

     I am 56 years old now and working half time as a Registered Nurse. I’ll never forget the day I was diagnosed with MS. It was October of 1999 and I was 47. I was testing staff on their CPR skills and got a call from my doctor’s office telling me the MRI results. Luckily I was not alone, but with my friend and co-instructor, Tami. I was devastated! The next steps took me to telling my husband and going to a neurologist. I didn’t tell others at work yet and by the un-luck of the draw, I was assigned to a woman with MS who was paralyzed! WOW that was tough! I called my husband Mike at break, and was crying. Mike has been so supportive….he really helped when our next step took us to telling my mom and his parents.

     When you get this diagnosis you read a lot and find out how different everyone presents with the disease and also different ideas to try and cope with it.

     Looking back I can remember in 1973 feeling some vague tingling feelings in my left arm that went away in a day. Also more symptoms appeared in 1986 that involved my whole left side. I had a work up done by my neurologist and everything was negative. There weren’t MRI's then. So we chalked that episode up to a psychological reaction to my younger sister and her family moving out of the state.

     During all this time I was very active; I played in 3 racquetball leagues, biked a lot, made 1000 skydives, cross country skied, hiked, and downhill skied. The happiest day of my life was July 10, 1993 when I married Mike and made a skydive into our reception! Mike and I started scuba diving in 1993 which has now become our favorite sport.

     With MS, heat and repetitive activity super heats the nerve-muscle connections. The conduction system affected by MS slows even more because of this and leads to further fatigue.

     Every year my symptoms of limping on the left leg, fatigue, and balance problems get worse. I don’t do aerobic exercise anymore and just riding my bike is a challenge…..after 10 miles I have trouble getting on and off the bike. Swimming keeps me cool so that is the best exercise for me. Through my research, I read about a woman with MS who has the same problem getting on and off her bike and then she and her husband started riding a tandem bike so he could hold it while she got on and off. In 2005, Mike and I purchased a tandem and finally could imagine doing the MS 150 ride. We have done it 4 years now and each year it’s more difficult but we train and we get it done!

     Along with riding the tandem, Mike has been my best friend and a rock of support. Mike gives me my weekly Avonex injections which is the treatment I have chosen. We still downhill ski but when I start getting fatigued, he stops too which is shorting him of the sport he loves and at which he is excellent. We scuba dive together and when it’s hot after a dive, Mike is there to help me walk. Mike is always there to help me walk! He has given up so much to be my support.

     My family and friends are also very supportive but Mike sees my slow decline everyday and I feel it everyday. I know my MS is called mild and it’s good that I’ve had symptoms for so long that are somewhat manageable, but that doesn’t always help my anger toward the disease because it has taken so much away from my active lifestyle. I could not get through life without Mike - my rock, by my side!

     I thank all of you who have given to our number one cause of finding a cure for this terrible disease.

     I wake up each morning thinking; Will this be the day?

Sara

My entry on the MS -- WALL

(Signed by thousands of people suffering from MS)