An Intro to the 2013 Tour to Tanglewood

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Riding in the Bike MS, Tour to Tanglewood started as more or less an accident.  I had just started riding a bike in the summer of 2011, and thought it would be something fun to do to honor my Mother, Elizabeth Kiser who was diagnosed with Multiple Sclerosis in 2003.  On that accidental year, I ended up riding 100 miles over two days.  I also raised a bit over $600 in about a month.  The next year, I went about things much more serious.  I signed up on January 1st, and started training on my bike in the winter months so that I could ride a full century the first day, followed by a metric century the following day.  I also made a pledge to raise more money than I had the previous year.  After the riding was done, I had raised $2300, and ridden 166 miles!!!

This year, I am going about things just as seriously, but my goals are higher.  While I can't ride any further, I am planning on doing the full routes both days once again.  However, my fundraising goals have doubled.  I would like to join the "Mission Possible" team and collect $5000 this year.  The only way I can do that is with the help of people just like you.  Every dollar counts, and small donations are appreciated just as much as the large ones.  I have until September 28th to get the money in, but I always like to do things earlier rather than later.  I am very interested in company sponsorship this year, and plan on talking to several businesses to see if they are interested in helping to sponsor me.

So...why is the Tour to Tanglewood so important to me?  Simple, riding in the event and raising money for the National Multiple Sclerosis Society is my only way of fighting the disease that has so profoundly affected my Mom.  MS strikes in many different ways, and every one of the 400,000 stories out there is different.  I don't know even half of what MS is capable of doing, but knowing that it affects the brain and the nervous system, I know that there is no limit to what damage it can do to a person.  In minor cases, the sense of touch can be affected, maybe balance, maybe sight.  In extreme cases, the ability to walk, chew food, and even form thoughts can be affected.

Mom was diagnosed in 2003 with MS.  She had probably had it many more years before, but when she was involved in a motor vehicle accident and the pain in her legs wouldn't go away, more tests were done, and eventually lesions were found on her brain.  That was the start of the diagnosis.  Since then, the lesions have grown and spread.  As most know, damage to the brain is seldom reversible.  This is one of those times.  every lesion leaves scar tissue which destroys a part of the brain.  Now the brain is smart, and it will reroute around the lesions, but those new routes are affected by new lesions.  The progression of MS for Mom has been one of pain and depression since her diagnosis.

At first she just had a hard time feeling things with her hands and feet.  Her short term memory was affected bit by bit.  Eventually, closing in on the last few years of her career as a special needs teacher, she was told that she had to take early retirement and go out on disability.  The reason.....she could no longer hold her preschool handicapped children and change their diapers safely.  She had neither the strength nor the feeling in her arms to be able to accomplish this simple task.  After much internal struggling and denial she decided to let it go, and left the career that she still loved.

The next hit to her life came shortly after that.  Her mental state was still being affected, as was the sensations in her extremities.  After having three motor vehicle accidents in a very short amount of time, I had to step in and take her car away pending a review by DMV for her ability to drive.  DMV allowed her to drive with many restrictions after that, and she continued to drive....and unfortunately have crashes.  After I found out that she was still unable to control a car, it was decided that she was to stop driving.  her car was repaired and sold....Quick score check: Career=lost, Car=lost, independence=impaired.

Mom's MS continued to spread until she was in bed for most of the days, and unable to maintain her home.  This home, by the way, was custom built to her specifications just a couple of years earlier.  It was her dream home, and she planned on spending the rest of her days in this home.  As the days went by, she realized that she was going to be unable to live there by herself without help.  She grudgingly made the decision to sell her home and move into what she thought was an assisted living facility.  Lets look at that score once again....Independence=holding on by a thread, Dream house=lost.

To put this in perspective, she was diagnosed in late 2003, and we are now in early 2005.  This is how quickly MS can strike.  In a very short amount of time, she has come close to losing everything.

The facility that she opted for turned out to have provided her with an independent living apartment.  This was undoubtedly due to her mental state as she thought she was signing up for assisted living.  To further illustrate her mental state, she was starting to miss paying bills, and paying some of them multiple times.  Her checkbook register was a mess, and she was overdrawn on her account.  This had never been a problem before, and I started really talking to her about what was going on.  Being proud, and wanting to be independent she had not told me much of what was going on.  After we talked, the decision was made to enact the POA for her business affairs so that I could take care of her finances, and made decisions for her when she couldn't.  Final score....Independence=lost.

In 2007 she once again moved to a nicer facility that offered assisted living and terms that we could agree on.  She started to improve with the medications being monitored, and the assistance that was provided to her.  She was still progressing with MS and it was getting worse.  The flares would at times put her in the hospital, other times would keep her in bed for weeks on end.  She was wheelchair bound for long stretches.  For the most part she would walk with a walker if she was out of the power chair.  In 2011, she started an experimental drug called Tysabry which has made more of a difference in her life than anything.  Not only are the flares not as bad, she is more mobile than before.  In fact, she is going to try and do a local Walk MS event this year and walk 3 miles unassisted.  While not a cure, her current treatment regimen seems to be doing great things to help her get some part of her life back.

It is the NMSS and they nationwide fundraising that has allowed treatments like this to be possible.  I hope that one day we can find a cure for MS, but I think that something even more important to think about is that the money raised through events like the Tour to Tanglewood is helping those who suffer right now.  Mom might not find a cure in her lifetime, but through the efforts of the NMSS her suffering is lessened.  Isn't that what we want for our loved ones in these types of circumstances?  Not only are medications and treatments provided through fundraising, but also counsellors and local resources are provided.  When mom was diagnosed, she knew nothing about the disease.  Through some Internet searching she found the NC Chapter of the NMSS and started researching and asking questions.  They answered her questions, got her involved with a regular phone conference call with doctors, and even helped her find her first power wheel chair on the cheap so that she could be mobile in her home.

The NMSS does so many great things for those who have MS right now, and the research that they are funding is going to help those who have yet to be diagnosed.  MS does not care who you are, or where you come from.  It can affect anyone.  I ride in the Tour to Tanglewood primarily for my Mom, but I also ride for the other 400,000 who also share her diagnosis.  I'm also riding for you, and for me....as we have equal chances of having a doctor say "You have Multiple Sclerosis."

 

 

Please support me this year as I ride another 166 miles across four different counties.  It is very simple to do, all you need to do is click on this link, and press the "Donate to Greg" button.  Whether you are donating $1, or $100, or more...you are fueling my ride, and helping so many people who have MS.  Chances are, you know somebody with MS.  Please feel free to add a comment with your donation and I will happily write their name on my jersey number....because I am riding for them as well.  Let's make this an epic year...a mission possible year!

 

 

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