Team CMT News

Robert Kearney and Cheryl Monnat at Whitlestop Half Marathon, Ashland Wisconsin

" I am only one, but still I am one. I cannot do everything, but I can still do something. And because I cannot do everything I will not refuse to to the something that I can do."- Helen Keller


Running in races and triathlons may seem like a small thing,  For someone with CMT that trips over their own feet, doing athletic events is a big deal  Appearing in events wearing our  Team CMT gear is the something we do to raise awareness of CMT and funds for CMT research. And we are doing it at events all over the country and in some cases abroad. Here is just a little of what has been going on the last month.

Some are running long distance events for the very first time.  Joe Torello  will be running the Philadelphia half marathon the Sunday before Thanksgiving.  He's using the event as a fundraiser and has set a goal to

Joe Torello

raise $5000.  He is almost half way to his goal and has raised $1225.
You can see Joe's story on the HNF site at http://hnf.donorpages.com/TeamCMT/JTorello1/
This talented member of our team is also appearing in Music Man in Philadelphia. Go to the link and read all about the part he plays in this classic musical.  It has been a pleasure to read about Joe's progress. He is really excited to be doing this event. Running a half marathon is a big accomplishment for anyone. Thanks for running for Team CMT and for raising funds for us!

Barb Vonada of Virginia will be running the Army 10 miler and also raising funds for CMT. All the money raised by Team CMT members will go to fund the research of Dr. Robert Chetlin on the effects of exercise on CMT.  Barb is a very active member of our team and has been part of a Saturday morning running group with team member Courtney Hollett and Kim Farron.  If you would like to check out Barb's page just follow the link  to learn about she she is running an raising money for CMT.  Thanks for all your efforts on behalf of Team CMT. http://hnf.donorpages.com/TeamCMT/BarbaraVonada/

Joe and Barb are not the only Team CMT members running and raising money.  The list of all team members and the links to their fundraising pages can be found at http://hnf.donorpages.com/TeamCMT/stats/
Other team members raising funds include;

• Darrell Wright
• Judy Coates
• Shannon Hays
• Morgan Johnson
• Alyson O'Connor

Megan Seebeck

Megan Seebeck will also be setting up a fundraising page. She was scheduled to run the Marine Corp Marathon in Washington D.C. at the end of October. But duty called Marine Seebeck to Yuma Arizona.
Meagan is going to recreate the marathon in Yuma and is dedicating the effort to her dad who has CMT.
Thanks for running for Team CMT and raising money!  Thanks for your service to our country. We are all proud of you.

Joy Von Werder Florida

 My coach Joy Von Werder has been very busy running in two triathlons since our last newsletter.  In her most recent she took first place in her age group. Her other triathlon was in Miami.  It was pouring rain when she racked her bike.  It drizzled on the boat as they made their way at 6:15 a.m. in the pitch dark.  Sat on the wet sand for 45 minutes waiting for the start. This was an Olympic event and had an ocean swim.  Quite a challenge. Last year she told me they could not even see the water it was so dark. She just grabbed a friends hand and they jumped in.  The swim part of a triathlon is scary enough without having to start in complete darkness.  Joy has CMT so she has challenges with the run and bike just like many of us do.   Joy has done all distances from iron man to sprint. She knows the challenges of being an athlete with CMT. That is why it is so great for me to have her as my coach. Joy is a level 1 USAT certified triathlon coach. She was a great help in preparing me for nationals last year.  Because she competes she knows how an athlete thinks and give me much needed support on the mental aspects of competition. Check out her web site at www.traintotri.net

Cheryl Monnat and Robert Kearney have been two of our most active members.  Not only do they participate in many local events, but Cheryl almost always picks up an age group award. How cool is it to see someone in a Team CMT singlet picking up post race hardware.

Cheryl and Robert ran the Brewers Mini Marathon on September 21st. The race included a lap around the warning track on Miller Park here in Milwaukee. They both crossed the finish line of the half marathon together.  Robert, Cheryl and myself were the first three runners on Team CMT. We did our first race together on April 29, 2011.  We have now grown to 106 members in 24 states.

 Cheryl and Robert also did the Whistle Stop half marathon in Ashland Wisconsin. They said it was perfect for them because there was a beer festival on the same day in Ashland which is in the very north of Wisconsin. Both races were rainy. They finished both because they thought running in the rain will be good training as they prepare to run the Dublin Marathon on October 28th. This will be marathon #2 for both of them. They both ran the Lakefront Marathon here in Milwaukee in October of 2011. Good luck and raise a glass to your fellow Team CMT members after you finish the marathon.

PUP List

PUP is the physically unable to perform list. I think they use that term in football.  I have not been able to run since the middle of September. I was scheduled to run the Brewers Mini and the Richmond Half Marathon.

I've been fighting what I though was a muscle knot on my right ankle. In fact I was injured at the National Championship in Austin. I competed on a bad ankle all summer. As I was ramping up to do the half marathons the ankle got more painful. I finally got to a runners clinic  and have been diagnosed with peroneal tendinitis.  That means no running for at least a while. I start physical therapy on Monday. In the mean time I am cross training and trying to enjoy the lighter workout schedule. My body is way over do for a rest. I miss running and fall is my favorite time to run. Can't wait to be healthy again.

So sorry Richmond team members. I will not be able to join you this year.  I really wanted to be there to meet all of you.

I've just touched on a few of our team members. I know there is lots of activity out there. Almost every weekend we have a team member doing an event in some part of  the county. Thanks to everyone for your efforts to raise awareness of CMT. Thanks to everyone raising money for CMT research!  You are all doing your part and I am very proud to be part of Team CMT!

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.

Welcome Shannon Hays to Team CMT

Shannon Hays

Follow your dreams, for as you dream, so shall you become.”- unknown

Shannon is 33 and lives in southeast Pennsylvania just outside of Philadelphia with her husband Fran.  She's had CMT symptoms since she was 14.  Like a lot of us it took some time to get an official diagnosis and she got hers just this last April.

Despite a long search to determine just what type of CMT she has, Shannon is embracing life. CMT is just a part of who she is.

Shannon is currently web admin and is working to earn her Bacbelors degree in Human Services.  She is expecting to graduate this summer and will then be starting graduate studies in the fall.  I am glad this busy lady has time for Team CMT.

She has lots of reasons for joining Team CMT. First she says she wants to get back in shape. She wants to create awareness and help raise funds for research.  She just got the couch to 5 K plan I sent her and she is going to start getting into running shape right away. She is going to pick a race and use it to raise funds.

She wants to be active so she can stay strong and show everyone they can achieve their dreams no matter how big they might be.

Shannon says she is not sure how to become an athlete, but she is up to the challenge. She likes the idea of working out and eating healthy, but maybe needs a little bit of inspiration to keep her going. I hope we can provide  that for her at Team CMT!

Shannon does have a variety of things she likes to do to be active including; kayaking, yoga and walking.  She is looking forward to representing Team CMT in some local events in the Philadelphia area.  Welcome to the team Shannon. We are proud to have you!

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 106 members in 24 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.

Building Strength- CMT Affected Athletes

Richard & Ruth Cook

"You can't put a limit on anything. The more you dream, the farther you get."- Michael Phelps


Here is a question posted recently on the Team CMT facebook page by member Ruth Cook.
My husband, Richard, has CMT and was wondering if any of you have had any experience in increasing your muscle mass - especially in your legs, quads, etc.? We work with a personal trainer once a week and have seen his muscle mass improve over the past 2 years. Richard is AMAZING!!! He has completed 2 marathons and several 1/2 marathons in that time frame and has applied to Boston for the 2013 Marathon. Actually he started to cycle more recently - this weekend will be his 2nd Century Ride this season. Any suggestions on increasing his muscle mass would be greatly appreciated. Thank you.

I 've had the same question myself. Like Richard I am a long distance runner and will be lining up for my 2nd Boston Marathon this April.  Really hoping to see Team CMT member Richard at the start line as well.  Like Richard I am an avid cyclist.  I have also been doing weight training for 15 years and have seen both the activity increase my muscle mass and reduce my CMT symptoms.

I always say athletes with CMT are like one big science experiment.  We have to experiment to figure out what works for us.

Medical professionals are not much help. I asked the first physical therapist I was sent to after my diagnosis if there were some specific weight training exercises I should be doing.  He knew all about CMT since he specialized in nerve disorders. He did a search and found nothing. The 2nd PT I went to was at a sports medicine clinic. The head of PT there told him when he asked about specific weight training that she thought people with CMT couldn't run. He did come up with a couple of things that I will share later.

Athletes with CMT have to experiment to see what works and what works for them. I will share what has worked for me. Try it out and adapt it based on your results.

Training Plans
Because I am a triathlete I follow training plans for multi sport athletes. CMT affected athletes need the same training and conditioning as any other athlete.  I would suggest getting a good book on running or multi-sport training.
Athletes have to find the balance of training enough without training too much.   People with CMT expend twice the energy as those without CMT. Because of this I get very tired in races. I find I have to train extra time and distance.  Be careful if you try this. I have been a competitive athlete since I was in college. I have a huge training base. Any athlete has to work up to this slowly.

Cross Train
Even though I am a long distance runner, I only run about 3 days a week. Athletes with CMT have inflexible calf muscles, weak ankles and little flex in their ankles. We count ourselves lucky to be running at all. So don't push you luck and run every day. Alternate with activities that mimic running, like pool running, or an elliptical trainer. Even better if you are a tri-athlete since you have to train in three sports. Biking, rowing and swimming are all great low impact activities. I cut a minute per mile off my running time when I joined a local rowing team. I rowed for 10 years and was never ever injured.

Alternate Hard/Easy
To build strength you need to do speed workouts. These can be done running, on the bike, in the pool or all three.  These should be done only a couple of times a week. Alternate a hard workout followed by an easy day. Training plans for running and triathletes will outline the type of workout you should do. Easy days are perfect days to have an easy day if you are a single sport athlete.  See a sport specific training plan for ideas. For running these are track workouts, hill repeats and tempo runs.  A little goes a long way, but they can be a great way to build muscle mass and strength.

Rest
Rest is just as important as workouts. It gives your body time to recover and build back up. If you are always stressing with hard workouts you will get injured. Even elite runners and triathletes take days off.
Take a day off a week.  One week a month cut back your workouts  Cut by half if not training for an event, or by the amount on your plan if training for an event.

I also find I need more sleep then the average person. Be sure you are getting at least 8 hours of sleep. Sleep with when your body rebuilds. When I am tired I go to bed. I don't care what time it is. Listen to your body and give it sleep when it needs it.

Diet
To build muscle mass you need to get protein in your diet.  Have protein at every meal.  After a long help to build up muscles with a carb/protein combination. Chocolate milk is great or half of a peanut butter sandwich.  Protein bars are great snacks. I often eat one with a glass of milk for breakfast. Protein powers can be good mixed into milk or a smoothly. Protein is essential to build muscles.

Weight Training
Any weight training recommended for your sport (running, cycling, triathlete) is also good for CMT affected athletes. Again get a good book on conditioning for your sport.  "Training Plans for Multi sport Athletes, by Gale Berhnardt outlines strength training  A trainer can give you suggestions. I use free weights at home and do lunges, squats, arm curls, abdominal work, etc. A good trainer can give you suggestions and check your form.  I do my weight training on my hard workout days so I can have a true easy day on my cross training days. I do both upper and lower body on the same day. That is a little different than typically recommended. I lift weights about 3 times per week.  Runners World has some great weight training exercises on their web site.

My PT recommended calf raises. I do them with 5 lbs of free weights in each hand.Raise up on your toes and do 4 sets of 20.  I do two leg and one leg.  The one leg are good for balance. Stand near a wall or chair if your balance is weak like mine.

I also take the 5 lb weight and while sitting in a chair, but the weight on the top of my foot and flex my foot as far as I can. This is to keep my foot drop from progressing.

Yoga/ Stretching/Massage
CMT athletes have poor calf muscle flexibility.  It is very important to stretch. Yoga can be a great way to stretch and maintain flexibility. Yoga is also helpful for maintaining balance. I have seen a big improvement in my balance from yoga.  Take a class, because it can be helpful to have an instructor correct your form. Don't be discouraged if you are not as flexible as your classmates. Those of us with CMT just are not very flexible.

Getting a regular massage also helps with flexability and can prevent injuries or prevent them from happening by working out tight areas.

CMT athletes do have special needs, but the same things that build strength in athletes will also work for CMT affected athletes.  Try my suggestions and let me know if you have any questions.

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.

When the Dog Bites

My favorite running buddy Mojo

Did you ever have one of those weeks that you just want to forget?  My week was topped off by a Sunday ride in the park after the Packer game. That ride finished with a dog bite.

Let me say love dogs.  My favorite running buddy is my nephew Dan's dog Mojo.  Mojo is so laid back, he would never bite anyone. I do know from playing tug of war with his rope just how strong he is. I always tell my family, "It's a good thing he likes us."  That's what makes a dog attack so scary.  The bigger the dog, the stronger and more dangerous the attack.

It happened so fast.  I was on the bike path in the park across the street from my house. In fact I could see my house.  There were two guys walking dogs. One had two dogs and other had a huge black hairy mongrel dog. He had the dog leash stretched across the path so I could't get through.  I stopped to wait. His friend motioned to him to clear the path.  When he did, I slowly rolled past the big black dog. I was inches away which was too close. The dog lunged and took a big bite out of my thigh. It hurt like hell.  I told the guy his dog had bite me. The owner hit him on the nose and told the dog he was bad. I yelled, not a bad dog vicious dog and you're  lucky I don't report you.  The irony is dogs are not even allowed in the park.  This is the first time I've been bitten since I was 14 years old. When on a bike I can usually out run a dog and did so just the week before when ridding out in the county.

I'm a professional trainer at a local utility in Milwaukee. One of the things I teach our field people is how to avoid dog bites. So maybe you can follow some of the advice I give field employees.

Signs
You need to recognize the signs of an aggressive dog.  Here are some signs of a dog likely to attack

• eyes back and close to the head
• eyes narrowed with a challenging stare
• tense body
• snarling, growling or barking loudly
• lips may be open or drawn back to expose teeth in a snarl
• tail straight out from the body

Some dogs like the one that bite me give no warning. 

Territory
Dogs are territorial. I got too close to the dog that bit me.  They will protect their territory including their owners. I got too close to the owner and invaded the dog's territory.  The sidewalk or street may be seen by a dog as part of their territory so be aware. Look for signs of dogs such as chains, dog house, toys or perimeter fencing.  Be aware and ready to take action.  I can often out run a dog if I am aware as soon as they start the  chase. The last pursuit' two weeks ago was close. A small terrier from a farm came out on the road. He had teeth barred and saliva dripping. He wanted to bite bad, but I out ran him.

Attack
If you are attacked by a dog while running or walking;

• never ever turn your back on a dog.
• Stop running or walking. If the dog is smaller than knee height I actually step toward  the dog and stomp my foot. Dogs are all about dominance and small dogs can be easily intimidated.
• Tell the dog "no" or "bad dog" or something similar. Shout it and be forceful. Sometimes this buys time until the owner gets there or time for you to back away.
• Walk backwards slowly until you are out of the dog's territory.
• If the dog lunges, spray your water bottle. It also works to snap a tee shirt or jacket at the dog. Again the key with small dogs is to be aggressive.

Report

I did not have my cell phone with me. I will carry it from now on.  The next time it happens I will report it to the police. The dog attack I got broke the skin and left a bruise about 2 inches wide and 6 inches long.

Attacks should be reported so authorities are aware of the dog and can take necessary measures.   Since this attack broke the skin I should have gotten contact information in case this dog shows signs of rabies.

Hoping it will all be all right.

Spray

If you are in an area where you are at risk from dog attacks, you might want to consider taking along dog spray. It can be an effective at stopping attacks.

Be safe when you run, walk or bike and pay attention to your surrounds. Give dogs and their owners plenty of space. React quickly when you recognize a potential dog hazard. Be safe out there and learn from my mistakes.

Chris Wodke

Manager & Founder Team CMT

www.run4cmt.com