September is CMT awareness month, and my hero has it

cmt

My husband (Neil) has Charcot Marie Tooth (CMT), named after the three physicians who were the first to describe it in 1886: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth. CMT is a group of inherited disorders that affect the peripheral nerves, which are the nerves outside the brain and spinal cord. There are more than 70 different kinds of CMT. Each kind is caused by a different mutation. The most common forms of CMT are passed down from one generation to the next. Symptoms of the most common kinds of CMT start to show before the age of 20, Neil’s symptoms didn’t start until he was around the age of 24. Neil’s symptoms seem to be those of the most common types of CMT. Those symptoms are:

  • High arched feet
  • Drop foot
  • Loss of muscle in the calves
  • Hammer toes
  • Difficulty with balance
  • Similar symptoms in the hands
  • Tiredness

Problems this causes:

  • Difficulty lifting his feet while walking
  • Reduced or absent tendon reflexes
  • Loss of muscle control in feet, lower legs, and hands (problems squatting, tying shoes, gripping, opening jars, etc…)

There are no known treatments that stop or slow the progression of CMT, which is why I am doing my part to help raise awareness!

Neil wears leg braces, which makes it easier for him to walk.

braces

Neil has also taken physical and occupational therapy to help maintain muscle strength.

If you would like more information about CMT, or would like to make a donation to finding a cure, please visit: http://www.cmtausa.org       judgement

spoon theory

The spoon theory is an analogy some disabled people, and those with chronic illnesses (like CMT), use to describe their everyday living experiences when their disability or illness results in a reduced amount of energy available for productive tasks. Spoons are a unit of measurement used to track how much energy a person has throughout each day. Every activity “costs” a certain number, or amount of spoons, which can only be replaced by rest. The term “spoons” was coined by Christine Miserandino on her website: http://www.butyoudon’tlooksick.com In the article The spoon Theory she recalled a conversation she had with her close friend who asked her what it felt like to have lupus. The two were in a diner, so Christine took spoons from nearby tables to use as a visual aid. She handed her friend the spoons, and asked her to describe the events of a typical day. Christine took a spoon away for each activity her friend mentioned, demonstrating that spoons (energy) must be rationed to avoid running out before the end of the day.

spoon theory explained

Not only am I writing to raise awareness about CMT, but I also want to let the people who read this know that people who have chronic illnesses, like Neil, are not being anti-social when they leave a party early, or are not able to attend certain events because of their illness. Please, put yourselves in their shoes before you judge or label them as “lazy” or “not fun.” To the so-called friends and family members who have labeled Neil, I really hope you’re reading this!

turtle

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5 Responses to September is CMT awareness month, and my hero has it

  1. Thank you my love. You are my greatest supporter!

    Liked by 1 person

  2. This kind of goes right along with my blog post this evening. People expect others to be like them or be someone they aren’t. I always enjoy my time with you and Neil and who ever thinks he’s boring is a moron!

    Liked by 1 person

  3. kristianw84 says:

    Thank you, Jason!! Never a dull moment when we all get together!

    Like

  4. Pingback: You Can Check Out Anytime You Like, But You Can Never Leave. – On The Right Path

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