Sara's Personal Page

2010

     We are in the midst of training for our 6th MS 150 ride! Last year's ride was especially difficult. The first day we had a strong headwind all the way to Whitewater. The 2nd day I experienced a new problem with my MS. My left leg has always been affected the most with activity and heat. After about 45 miles my left leg started turning to the inside whenever we had uphill's. At rest stops it would come back to "normal" until the next hill. I would have to hold my leg straight in order to pedal! It was very uncomfortable and tears came easily.

     This year, my husband, and greatest supporter is working on fabricating a device on the bike that will help me to hold my leg straight.

     Another great gift from Mike was a new high tech trike which enables me to ride safely by myself. It had come to be that riding my 2 wheel bike was difficult due to balance problems and leg weakness. I would have to fall off my bike to get off and getting back on was nearly impossible. Now I'm clipped into the trike and can't tip over!! I love it and it has helped me maintain some independence. Now Mike is building a rack for the back of my car so I can easily take my trike anywhere!

     We went scuba diving in Curacao this year and the heat posed a great problem for me. Scuba diving in the morning was great; being in the water is always great for my MS. Walking back to our room after diving all morning was a challenge; often my left leg wouldn't work! Hours in the AC and I could finally walk to dinner.

     I still notice that my symptoms occur faster with activity and heat and have learned from my new Neurologist, Dr. Luzzio that these symptoms are leftovers from my original diagnosis. I don't really have relapses but it's very frustrating not able to walk any distance. I am having a follow-up MRI in August. I am not a candidate for the new walking medication because I'm not "bad" enough and there are many bad side effects. In addition, insurance companies aren't covering it yet.

     I am trying out a new carbon fiber AFO to help with the foot drop I have with any distance walking. My dog Brandi gave me a walking stick for my birthday which helps me walk with her better. I also just ordered a collapsible cane that I can take on our tandem and on trips.

     In October I will have been at my new job for 2 years now. I'm still a Pediatric nurse but in a clinic setting. I love it and work with terrific people.

     This June I attended Camp Wikidas (Asthma Camp for kids) for the 29th year! A life saver for me was Mike's golf cart that he uses at the airport. My mobility problems were kept to a minimum as a result. I was still able to do the climbing wall which always is an accomplishment for me. This year at camp the Medical Staff presented me with over $600 in donations for the ride!! An awesome group of people!

     When I go to talks about MS and others with the disease are there I always feel that I am pretty well off when I see walkers and wheelchairs. This disease has affected me mostly emotionally because I was so active before and have had to give up so much. I also see what Mike has given up for me and that hurts. What a great partner he is!

     Something really cool is happening for the MS 150 ride this year. My nephew Jake who is 28, is riding with us! This means so very much to me. Jake and his sister have been an important part of my life and have been active with us and have seen the changes in me. You can read Jake's personal page on the MS web site. My sister, Rosie and my niece, Samantha will be volunteering at Whitewater and Madison this year. It will be wonderful to see them there. I have such a supportive family and great friends who support me also. You can see all of our "angels" on our donate page.

     Because of all of them we are close to finding a cure for this devastating disease!! Thank you everyone.

Sara