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Saturday, September 29, 2012

You Look Perfectly Fine



Team CMT at Bike New York
"I can be changed by what happens to me. But I refuse to be reduced by it."- Maya Angelou

This week I met with a rep from Senior Referrals here in Milwaukee to find an assisted living for my dad.
He's been in a rehab nursing home since July and his time there is coming to an end.  He went from being fairly independent to now not being able to walk more than a few feet. My dad has CMT it has really accelerated. He is wearing AFO's for the first time.  His balance is a mess and he is now basically in a wheel chair. The therapists are saying he is not going to regain any more function. This severely limits the places where we can place my dad because he needs 2 people to assist him. Much more expense and very few options. It is all so heartbreaking because he feels really good and just wants to go home. This is also tough for me because I am most like my dad genetically. I share his CMT and asthma. I have the same problems swallowing.  When I look at my dad, I see myself in 30 years.

During the course of this process I've had to explain  my dad has CMT. Of course no one has heard of it. I share a bit with them about CMT and that it's genetic condition I share with several family members. The rep from Senior Referrals told me, "You look perfectly fine."

Yes CMT is an invisible condition for many of us. I liken it to a house with termites. It looks perfectly fine from the outside.  CMT affects even someone like me that can still run. I've have even been told there is nothing wrong with me because I run marathons.

Everyone who thinks I look fine, should pay my doctor bills for one month. Staying healthy enough to be active with CMT is a constant battle. I am doing great, but I have challenges. I wish people who say I look fine could see me when I have to go to bed at 6pm because I am so exhausted. It happens all the time.

Because no one has ever heard of CMT but everyone knows about MS, I often explain it is like MS. Not quite but it is a start to understanding and awareness of CMT.  When I explained about my CMT to the Senior Referral Rep, I handed her a pen with my run4cmt website.  For her and anyone else that wants to learn about the difference between CMT, MS and Muscular Dystrophy I am posting the following piece.

I adapted this piece posted in the CMTUS Facebook site. I added a bit of information on CMT symptoms to the fine piece written by Gretchen Glick
CMT, MD and MS - What's the difference?

By Gretchen Glick

Charcot Marie Tooth disease, Multiple Sclerosis and Muscular Dystrophy are three distinct problems within the body's neurological system.
Starting at the brain, the neuromuscular system acts as the body's master computer. Signals are sent to the muscles through the spinal cord which acts as an intermediate connecting cable. This hooks up to the peripheral nerves which are the connecting lines between brain and muscle.

Charcot Marie Tooth (CMT)  is a disease of the body's peripheral nervous system (the connecting lines). CMT causes weakness and impaired sensory perception because the signal can't get to and from the brain to muscle and skin. Muscles slowly atrophy as they aren't getting the proper signals but the muscles themselves are not directly diseased. The problem lies in the nerves.

Symptoms and Characteristics
  • Frequent tripping, ankle sprains, clumsiness and burning sensations in the hands and feet.
  • Structural foot deformities; high arches and hammer toes
  • Muscle wasting in the lower legs and feet may lead to foot drop, poor balance and gait.
  • Muscular atrophy in the hands causes difficulty with tasks involving manual dexterity such as writing, opening jars, closing zippers and buttons.
  • Abnormal sensation in the extremities and loss of proprioception is also common, and some patients experience neuropathic pain.
  • Poor tolerance for cool or cold temperatures. Many with CMT have chronically cold hands and feet.
  • May experience fatigue (75% CMT patients report) because it takes nerve signals twice as long to reach muscles. It is thought it takes twice the energy to do tasks.
  • Additional symptoms include sleep apnea, breathing difficulties, swallowing difficulties, scoliosis and hearing loss.

There are currently 50 different genetic markers. Males and females are equally affected and present in every ethnicity. CMT does not affect the intellect and life expectancy is normal. But if symptoms are left undiagnosed or misdiagnosed, it can be fatal due to phrenic nerve atrophy, breathing and heart failure.  CMT has a prevalence rate of 1 in 2500 persons, or about 3 million people worldwide. It is considered a rare disease. Unlike MD and MS the cause of CMT has been pinpointed. Within the next 5 to 10 years treatment and total arrestment are hopefully positive.

Muscular Dystrophy is a disease of the muscle itself. It causes weakness of varying degrees. There are 9 types of MD; one in particular only affects males where the prevalence is 1 in 3000. Sometimes the heart can be involved because it is a muscle too. Also, the lungs can be affected because the breathing muscles are weak (similar to CMT, although in CMT it is because the phrenic nerves are affected which in turn weakens the diaphragm, the main breathing muscle). Muscular dystrophy can be hereditary or non-hereditary. It is characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. Affected individuals are susceptible to intellectual impairment. Dystrophic protein is found in muscle fiber membrane and functions in two ways; mechanical stabilization and regulated calcium levels. This protein acts like a spring and joins the membrane acting filaments. The main cause of Duchene and Becker types of muscular dystrophy is the muscle tissue's Cytoskeleton impairment to properly create the Dystrophic-associated protein complex. Duchene Muscular Dystrophy is often fatal in childhood and young adulthood, usually due to respiratory and cardiac complications.

 Multiple Sclerosis is a disease of the central nervous system. It affects both movement and sensory perception and sometimes, thinking processes. It is not a hereditary disease. It is an inflammatory disease of the immune system in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelization and scarring as well as a broad spectrum of symptoms. The cause is unknown. Multiple Sclerosis has 4 forms, with new symptoms occurring either as indiscreet attacks (relapsing forms) or slowly accumulating over time (progressive forms). Between attacks, symptoms may go away completely, but permanent neurological problems often occur, especially as the disease advances. MS can be more common in women than men. Life expectancy of people with MS is 5 to 10 years lower than that of the unaffected The name Multiple Sclerosis refers to the scars (scleroses รข€" better known as plaques or lesions) that form in the nervous system. MS lesions most commonly involve white matter areas close to the ventricles of the cerebellum, brain stem, basal ganglia and spinal cord; and the optic nerve.

The function of white matter cells is to carry signals between grey matter areas, where the processing is done, to the rest of the body. The peripheral nervous system is rarely involved. As of 2009, five disease-modifying treatments for MS had been approved by regulatory agencies in many countries. MS has a prevalence that ranges between 2 and 150 per 100,000 depending on the country or specific population. 



Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.


Sunday, September 23, 2012

Between the Lines


Chris Wodke and Kevin Klein at TriRock Lake Geneva


"I need something- the distraction of another life- to alleviate fear."- Bret Easton Ellis

I've heard professional athletes say they leave behind their problems during the time they are on the field. That time between the lines is when trouble fades and there is only the game or the race. Recently I needed my own time between the lines.

As I stood at on the beach last week waiting for the start of the TriRock triatlon, I honestly did not want to be there. It had nothing to do with the 44 degree temperature and 6:30 a.m. start.  I've been competing since May with a muscle knot on my ankle it's getting worse. Staying home would have been smart. But I told Team CMT member Kevin Klein I would be there. The last time we were in the same race was at Pleasant Prairie in June and I bailed from exhaustion in the swim. I needed to redeem myself.

I'd let some things that happened in Austin at the National Championships really get to me. I honestly almost gave up triathlons. I blew off doing several triathlons this summer because mentally I just didn't feel like it.

I had a bad experience at Pleasant Prairie which did not help. But I bounced back with two really good races at Portage and Fredonia and again qualified for Nationals next May in Austin.  I was back and excited about competing again.

Then life intervened again and I found my mind far away as I stood waiting for the start last week.  My dad who is 81 recently entered the hospital and a nursing home. He was 3 hours away in Iola Wisconsin and that is where I wanted to be. I would be driving there right after the race.

When my dad entered the hospital, my youngest brother  had the responsibility of managing his finances.  My brother soon found out  my dad had virtually no money. Only a year ago he had a healthy savings account balance.  We soon found that all his money had gone to his ex girl friend and her daughter. We think the amount is at least $71,000 maybe more.  My dad has dementia, making him an easy target. On one day in March $6000 in cash was taken from my dad's account.My dad had told investigators he did not want to prosecute.  He thought only $2000 was involved and did not want to make a fuss about it.  After the race my goal was to show my dad the checks made out to the two and get him to understand how much was gone. I wanted to show him the cash withdrawal slips and determine if he had signed them. My dad has consistent in one thing. He has repeatedly said he did not give away all his money. I believed him because my dad is a fugal man, not prone to giving away money. Could I make him understand how much has gone and where it went? Could I make him want to pursue and investigation?

We didn't at this point know how we would pay for my dad's care. Giving away all your money usually renders you unfit for government aid.  It made me sick to think that two people he thought were his friends had taken advantage of him this way.  Would we be able to hold them accountable?

I just wanted to visit my dad and make sure he was OK. Imagine being in a nursing home with no family closer than 3 hours. Most of his friends had passed away. I know he just wants to go home. When I look at my dad I wonder if that is how I will be at 81.I am so genetically like my dad. I have his CMT and asthma. Will I get dementia too? Who will take care of me?  Will someone take advantage of me? I am there to protect him and fight for him. Who will fight for me when I am 81?

So I had lots of thoughts in my mind as I waited.  As much as I did not want to be there I needed the distraction of that time between the lines. It is too easy to get defeated and discouraged by the things that happen.  Not only did I need the distraction of the race, I had to prove to myself that I could race despite all the distractions.

I did race that day and was focused the entire race. I felt so good about even getting to the starting line and finishing strong.  Just like life, I can't control what happens in a race or how well I do compared to other competitors.  What I can control is how I prepare, my focus and determination to finish. None of that matters if I don't show up and race.

The ability to concentrate and lose myself between the lines has paid dividends.  The discipline from the race has carried over to work. I am much more able to concentrate.  I found the relief I needed in the distraction of the race. I won't walk away from that so easily again.  For me racing is about staying mentally and physically strong as I battle the effects of CMT.

My dad's case is now working its' way through the system. I looked at an assisted living place this week so we can bring my dad home to Milwaukee.  His family will make sure he is well taken care of. Knowing he is close and we can visit him often will ease all of our minds and I try not to let the distractions get to me.




Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.



Monday, September 17, 2012

Team CMT News


Team CMT at Bike New York


"You must be the change you want to see in the World."- Mahatma Gandhi

Team CMT members have been busy with all kinds of activities to raise awareness of CMT and money for CMT research.

Bernadette Scarduzio

The Film "Bern's Life" has been accepted by the New York Film Festival.  It stars Team CMT member Bernadette Scarduzio. She allowed a camera to follow her around for over a year to document the effect of CMT on her life.  The film directed by Josh Taub, is the first full length film on this subject and will be shown on October 21st at 2:00 p.m. This film will help to bring important awareness of CMT which is the number one hereditary neuropathy in the World. It is a nerve and muscle disorder, which causes the body to deteriorate over time.  CMT is passed from parent to child, is often mis-diagnosed and often is not talked about in families.  It is as prevalent as Multiple Sclerosis (MS).  Thanks Bernadette for your courage and openess and for willing to be the face of CMT.  I hope to meet you someday soon!

2012 Summer Olympic and Para-Olympic Teams at White House


What is better than being a National Champion cyclist or competing at the Para-Olympics?  Well maybe joining other Olympic and Para-Olymic athletes at the White House. Team CMT member got a chance to go the White House this week.  What a thrill and an honor for Anthony and well deserved!

Dells Half Marathon
Schlitz Park 5K



Our athletic Team CMT members have been busy all over the country. Robert Kearney and Cheryl Monnat of Milwaukee, particpated in two races this week. On Thursday they ran in the Schlitz Park 5K where Robert won 2nd in his age group. On Saturday they also ran in the Wisconsin Dells half marathon. Way to go Robert on the medal.  Your age group is tough one.  They ran in the cold and rain on Thrusday which should be good training for the Dublin Marathon they will be running at the end of October.

Kevin Klein


Team CMT was represented at the Tri Rock Triathlon in Lake Geneva. They had to get up at the insane time of 3:30 and 4:00 a.m.  There should be some kind of award for that. No pictures from the event yet. I will post those when the pro pictures are put up for sale. I did have a nice picture from when Kevin represented Team CMT at the Pleasant Prairie Triathlon this June.
Kristin Crosby Cezat


Other members are busy training for events. Kristin Crosby Cezat of Orlando Florida is just two weeks away from her Iron man Florida race. Joe Torello and Kristin Harris are training for the Philadelphia Half Marathon.

Joy Von Werder

Joy Von Werder of Orlando Florida,just finished up the design today for some Team CMT tee shirts we can sell for fundraising. More details to follow.

Allison Moore

HNF President Allison Moore of New York, represented Team CMT at a recent conference. Part of her presentation was about Team CMT. I did a PowerPoint slide with a college of Team CMT pictures. We looked great so keep those pictures coming. There are some really exciting new programs on the way to help raise awareness that we will tell you about soon.

So many of you on Team CMT are working so hard. It is so inspiring to see all the different things team member are doing to carry on our mission. I am so proud to be part of this team. Thanks to everyone for contributing in your own unique ways! Whether racing, presenting at a conference or meeting the President at the White House we are all making a difference.



Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Sunday, September 16, 2012

Race Review Tri Rock Lake Geneva

Tri Rock Finish Lake Geneva


We all have dreams. But in order to make dreams come into realty, it takes an awful lot of determination, dedication, self discipline and effort."-Jesse Owens

It takes lots of discipline to get out of bed at 3:30 a.m on a Saturday morning when it's 43F.  I was signed up for the Tri Rock Lake Geneva with a 6:30 a.m. start. I knew Team CMT member Kevin Klein would be there. The last time we did the same tri was Pleasant Prairie and I bailed in the swim.
This was a chance to redeem myself.

Besides  I needed the practice competing in a big event before I go back to Nationals in Austin next year. I already had a qualifying time, so I could relax and just get  some experience.

Sometimes  competing is the easy part. It's all the logistics that are tough. I had to drive an hour to pick up the race packed on Friday night and then an hour back home.  This was complicated by the fact that map quest kept locating to a park in Illinois instead of Edge water Park in Williams Bay. It turned out to be easy to find and packet pick up was a breeze. No timing chip pick up until race day which I still don't get.

Transition closed at 6 am so that meant getting there no later than 5:30 am to set up my bike and running gear. I like to arrive really early in case there are snafus on race morning like getting lost or not being able to find the parking area. I found some on street parking and noted the name of the street. Parking, the walk to the transition area and set up all done with flashlight.  Nothing like jockeying for space in the transition area in the dark. 

There was some confusion about where the timing chip pick location. That meant standing in line and more lines for the bathroom. Lots of long walks back and forth to transition.  I counted off the number of racks to my bike since many of the athletes put there stuff right on the number markings on the ground to designate the racks. I personally thanked some of them for doing that.

I put on my web suit and went to the beach to wait. Bare feet lose all feeling on wet cold sand at 43F.  I had on sweats over my wetsuit and was still freezing. I bumped into Kevin and he was trying to stay warm under a reflective silver blanket. I asked if his family was there and he said no one would get up at 4 am to come and watch.

 
The race start was delayed because there was so much fog. No one could see the buoys. Finally waves started going first the international distance, the sprint and finally the super sprint.  This event  had 2000 racers. I asked for accommodation as a physically challenged triathlete. They put my group that consisted of women 50-59, Athena's, Clydedales, and relay athletes in the same wave. The biggest wave I have ever been in.  Thanks guys.

 At least there was lots of  time between each wave. Here is what one of the swim wave looked like.


 I started in the back but took a direct line on the buoy. I have a checked past with the swim.  They used to really freak me out. No more. I swam right in the crowd and went right between some tight spots.  I own the swim now. The water was really clear and you could see the bottom. Lots of weeks though. I came out with weeds tangled in my watch.

The transition to the bike was carpeted all the way. Nice touch. Because I had counted racks I easily found my bike. When I took off my wet suit I was steaming kind of like this picture. We were told the water was 68F. No way. It was warmer than the air, but pretty cold. Glad I had that wet suit.
Got on the bike and started and realized I did not have my cycling gloves. Not a critical thing for most riders, in fact I saw the Olympic triathlete go without. My hands go numb if I don't have them. Luckily they were clipped to my bike frame, so I stopped to put them on. Ever try to put on full finger bike gloves with wet hands. Will I ever get this triathlon thing down without making a mistake?

So I was off on the bike course. Hilly with lots of newbies that either had no idea of bike etiquette or did not care. Bikers speeding past without announcing or passing on the right.   That can be fairly high risk for a close encounter of the crash kind. Got thorough the bike without incident.

Back to transition and oh no I forgot to count racks going that way and numbers were covered up by all the considerate athletes taking up extra transition real estate. Thank God for my Tri Wisconsin mat.  Went a bit past my rack, but recovered fast. Then I discovered there was someone racked in my spot. I did not want to put her in another spot and goof up someone else. the spots were clearly marked with name and number. Out of the rack the bike went and gently on the ground. If you don't rack your bike you can be disqualified. That was not going to happen to me. Her bike was still out of the rack when I took my bike home after the race.

So off on the run which was very very hilly. I was tired and my run was slow but I made it in 1 hr 47 min and 17 seconds. Not fast by many measures but another qualifying time for Nationals. Even got this cool medal to add to the collection.

Kevin Klein was at the finish line to cheer me in.  I really appreciated that because it was a busy day for Kevin. We got a team picture taken in our new Team CMT Tri Kit. I think we looked great and will publish the pictures when I get them.

The post part was great with a band and wonderful pancake breakfast cooked up by the Lions Club.
For lots of reasons it was not a race that was easy for me be at.  There are some major distractions in my life right now that I really had to push through to even be at this race.

There were lots of places I would have rather been then on a cold beach at 6 am waiting to jump into frigid water in a crowd. But I did it and I am glad I did. Every race I do gives me more confidence and experience to get ready for Nationals next year in Austin. Overall a good race and a good day for Team CMT.  Actually the only hitch in the day was finding my car after.  I had trouble finding Olive street where I had parked my car and even several locals I asked had a bit of trouble directing me. All good though and looking forward to the next race.


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

 
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

 
Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.






Wednesday, September 12, 2012

Boston Dreaming



 " The best angle from which to approach any problem is the try angle."- unknown

Registration for the Boston Marathon opened on Monday.  I was notified on Monday  I was accepted for the 2013 race. Team CMT member Richard Cook has also applied. Last year it was November before I was notified. It was a tense couple of months as I waited for word, so I was pleasantly surprised when I was accepted so quickly. My 2nd place finish in the Mobility Impaired Division may have helped.  It may be some time before Team CMT member Richard Cook  knows his fate. Best of luck to Richard!  I am so proud you qualified to apply. I know how hard your worked! I will be more excited for you than for myself. Look forward to seeing you and your wife Ruth in Boston. I got a chance to meet Ruth and Richard when I ran Marine Corp last October. They drove down to D.C. to meet for dinner. Such a super couple! There was a West Virginia football game on in the place we met. Every time they scored they play the John Denver, Take me home country roads song. So I think of Ruth and Richard every time I hear that song.


Entry to Boston is tough for most athletes. Even if you have a qualifying time you aren't guaranteed entry. The fastest runners are taken until all the available slots are filled. The qualifying times are tough and you have to be a pretty good athlete to be accepted. So what if you don't have a qualifying time? Can you still achieve your Boston dreams?  The answer is yes. Here are a few ways to get entry to one of the worlds best and most prestigious races.

Athletes with Disabilities
Boston has an extensive program for wheelchair, visually impaired and mobility impaired athletes. If you have a condition like CMT that limits your ability to make the time standard you can apply under this program. You must run a Boston certified course under 6 hours if you do not wear braces and 8 hours if you do. This is the program I used to qualify and run Boston last year. Richard Cook has applied under this program. If you have CMT and have completed on a certified course under 6 hours in the last two years you can apply.  You register like any other athlete through the Boston Athletic Association website. You check the mobility impaired box.  You will then be asked to provide a time in a qualified race. You will then follow up with medical documentation to verify your condition. Then it is in the hands of the B.A.A.  I encourage anyone with CMT that can meet these standards to apply.

Charity
There are dozens of charities that have been each awarded entries to the 2013 race. If you really want to run Boston, but can't get in any other way you can run for one of the charities. You have to apply and agree to raise at least $3500 or more depending on the charity.  They will take your charge card and bill you if you don't raise the required amount.  You have to apply through the charity and there is a listing on the Boston Marathon web page. Just select the charity section. These fill up fast so take a look if interested.

American Athletic Medical Association
Are you a medical professional such as a paramedic, nurse or doctor?  The American Athletic Medical Association runs a seminar just before the Boston Marathon. They also have a number of spots to run the Boston Marathon because many of their members help with first aid on the course. They have a package for members to attend the seminar and run the marathon. Last year the cost was $1500. Membership is around $50 for 2 years. If you are a medical professional and are interested in athletes and medical issues, check out their web site, http://www.amaasportsmed.org/
This was an option I thought of using since I may qualify as a first responder as a member of the National Ski Patrol.

Connections
There are eight small towns the first 10 miles of the Boston Marathon course.  The B.A.A. gives each town entries into the race as compensation for the race coming through their town. This is a long shot, but if you have any connections with city officials in these town maybe you can score a race bib.

Guide
Visual and mobility impaired athletes are allowed to ask for two guides.  You won't get a finisher medal, but will have a chance to experience a world class race.
Cheryl Monnat and Robert Kearney will be my guides for the 2013 race.  Each will run half of the race and will provide support by carrying sports drink, gels, and any other items I need during the race. They will also be there to provide assistance in case I fall or need any medical assistance.  If Richard Cook runs Boston he will also have a guide. While we are set, if you want to provide this service for an athlete, send an email to the B.A.A. Again this is a long shot, but you just might get matched with an athlete. You will also be providing a really valuable service. I know how much the support I got on the course helped last year. I know having the guides with me is going to make a big difference.

You can also keep trying to qualify. Many runners try multiple times before they qualify for Boston. I can say from experience that running the Boston Marathon is the experience of a lifetime. The B.A.A. puts on a world class event from start to finish.  The Boston fans are the best. All along the course they will cheer for you as if you were an elite athlete. There is nothing like running down Bolyston street to the finish with TV cameras rolling and a sea of spectators. There is nothing else like it. I will be back in 2013. I hope you experience some day as well. I am so proud to be representing Team CMT. I will be raising money and awareness.   Looking forward to having Team CMT member Richard Cook in the race as well.



Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

 

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.

CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Saturday, September 8, 2012

Team CMT's New Kit



Gillian Kearney, Robert Kearney and Cheryl Monnat


"The only competition of a wise man is with himself."-Washington Allston

Just in time for CMT Awareness Month, Team CMT debuts some new kit.  The HNF has been very generous to sponsor Team CMT with running singlets. They are great and I love the design. Those of us participating in cycling events and triathlons felt the need for some event specific gear in addition to our running singlets.

We've used the HNF design which I love and got Champion Systems to custom design some great kit for us.

First up today were Team CMT members Robert Kearney and Cheryl Monnat.  Guest team member today was Robert's daughter Gillian. They rode a steel? tandem in the Steel is Real 25 mile bike ride here in Milwaukee.  You guys all look fantastic and I hear Gillian may be joining the team.  Thanks for representing Team CMT today!


Your Team CMT leader had a triathlon in Fredonia Wisconsin this morning and I got a chance to wear my new tri top and bottom. I feel like a real tri-athlete and hands down I had the best uniform of all the athletes.  The biggest challenge was finding Camp Awana this morning.  It took me over an hour and when I saw another car with a bike on it I followed him. After a few calls to his friends already on site and after being joined by two other lost cars we arrived.

It was a 1/2 mile swim which is the longest I've done, I cruised through it and onto the hilly and windy bike course. It was 52 F at the start of the race so my hands and feet were numb for most of the race. The 5 K run was a trail run through the camp with more hills and a stretch around the lake. The bike was three loops and the run was two. All that working out by myself really paid off .  The race was so small I was by myself though most of the bike and run course.  Finished in 1:44:12 way under the time needed to back to Nationals next year. This was a USAT certified race, so I can now relax and enjoy next weeks race. I was really excited about the 1/2 swim, since I sometimes have struggled with the swim in the past. I rocked this one and that's two in a row for me.  Competing is just as much a mental battle as it is a physical one. So put one in the win column for me today.

I've learned I am no longer competitive among the other athletes. A good day would be a finish in about the middle of the field. Today I ran against the clock and against myself to beat my time for the Silver Lake Triathlon and my time at Nationals. I did both.  Nationals had a 1/4 mile swim so my adjusted time there would have been about  1:34, five minutes faster. I credit my Fuji Altimira. It has made a huge difference.  It is nice to be getting better. I can't wait for Nationals next year!

If after seeing our wonderful Team CMT kit you just have to have your own let me know and I can work on putting in another order. Champion has a wide variety of running, cycling, triathlon and warm-up gear. They have great accessories like socks, hats, polo shirts etc. 


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.
 
CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Sunday, September 2, 2012

Meet the Wright Family

Darrell Wright and his family

  " Little by little one walks far" Peruvian Proverb
Darrell and Cristina Wright are the 2nd husband and wife team  from Arizona. They join Ericka and Tim Steffen from Flagstaff.

Cristina, her brother, mother, grandfather, and now their daughter, all have CMT.

While Darre;; doesn't have CMT,he lives with it in a different way every day.
He says "There are so many things I am now. I am my wife's hands when she can't use them, her support when she is having trouble walking."

 They met after he was in the military for almost 6 years, he is now a 20 year veteran of the Air Force. They've have been married for 14 years now.

He is a Master Sergeant looking to retire from the Air Force in a few years in or around Colorado Springs or Denver CO.

Dwight says he I knows more about CMT than most doctors they have ever gone to see.

He has been looking for a way to get involved somewhere for many years.  His wife and her family are excited to have found an organization focused on CMT.  

 HNF and Team CMT, are perfect fit for him.because he hopes to really help, get involved, raise awareness, and make a difference. He is excited to find us and get involved, not just for me but for my family and EVERYONE living with CMT.

 Darrell has big plans as an athlete.He plans on putting together teams for races such as Spartan and Tough Mudder alongside the preparation for hisfirst Triathlon (Olympic). His ultimate goal will be to complete a 70.3 and finally full Ironman. He would love nothing more than to run for support of my family and all those who have the many different types of CMT.

His first event is Labor Day weekend.Here is the link to his fund raising page.

http://hnf.donorpages.com/TeamCMT/DarrellWright/

We have a long way to go in our fight against CMT, but race by race and member by member we are going far.

Thanks Dwight  and Cristina for joining Team CMT and running for those who can't. 


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

 
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.
 
CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.
 
Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.
 
Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.