We met Jennifer Decker this past spring when she reached out to HNF about an incredible journey she was about to embark on.
Jenny set out to complete the first documented solo circumnavigation of the Big Island, Hawaii by kayak. The journey would take 20 days and course through over 300 miles of the roughest waters known in the Pacific Ocean.
And she would do it as a Charcot-Marie-Tooth patient.
This experienced nurse, seasoned surfer, hiker, scuba diver, and mountain climber not only accomplished her goal, she also raised over $10,000 towards CMT research!
HNF has asked Jenny to join us at the Patient-Centered Charcot-Marie-Tooth Summit to participate as a panelist in “Personalized Exercise Prescription.” We can’t wait to hear her story!
Let’s learn more about Jenny in her own words:
I’m a Registered Nurse with over 10 years of experience, specializing in Medical, Neurological, Surgical, and Trauma ICU. I’ve been a traveling RN for the past 4 years.
Throughout my life I’ve tried to put my diagnosis of CMT behind me. “Out of sight, out of mind” right? I am just Jenny: swimmer, hiker, surfer, scuba diver, kayaker, and lover of any adventure placed in my path.
Allowing my diagnosis precedence in my life was like granting it too much power. I was afraid if I did, it would overcome me, or even worse….break me. I have always been slower, clumsier, weaker, and more prone to injuries than everyone else, so why would acknowledging this disease change these facts?
Recently, my thoughts on living with CMT have changed. My partner, Krystal Sentz, has played a major role in this. She always has a way of reaching for my hand on unsteady ground without making me feel helpless.
Together, we realized that this disease has actually empowered my entire life. It has been the foundation to my internal drive. It has been the fuel that allowed me to conquer things deemed impossible. These challenges have pushed me to find my own “ways” that work and allowed me to accomplish any goal I put my mind to.
My days as a “loner CMTer” came to an end when I decided to attempt the first solo circumnavigation by kayak around the Big Island of Hawaii. This was my chance to give to the CMT community and create awareness. A majority of close friends, family members, and medical coworkers have rarely even heard of this disease. The lack of awareness in the general public must be astronomical if those in my own life, a person with CMT, are unaware of it.
So on March 25th, 2016, I pushed offshore on my kayak for a 20 day, 300+ mile, wild adventure through the Pacific Ocean. I completed my journey on April 13th, 2016 for every single person dealing with CMT. I was able to raise over $10,000 towards further CMT research, created a community between other CMT patients on island, and brought media awareness to our disease.
HNF: Why did you choose this particular topic for the Summit?
Jenny:
I have been a competitive swimmer my entire life and believe this has been one of the major factors in being able to remain so active, despite my CMT symptoms.
Furthermore, being more graceful in the water than on land has always been a major incentive. In my personal experience, finding low impact, muscle strengthening exercise is key to minimizing injuries, slowing the progression of the disease, and maintaining muscle.
HNF: How has CMT affected your life?
Jenny:
CMT has empowered my entire life. I choose to say I’m “living with” CMT. This mindset allows me to see CMT as a blessing. I’m grateful for every day I can experience life on my own terms.
HNF: What do you hope attendees take away from the Summit?
Jenny:
This patient-focused Summit will bring hope to all of us suffering with CMT and I am grateful to connect with the community at such an amazing event!
HNF: Anything else you’d like to share with the community?
Jenny:
Remember, there is always a light in the dark. Sometimes you may have to go find it or you might just have to create your own!
Embrace your imperfections and no matter what your challenges are you truly can do anything you put your mind to!
Come join Jenny and learn more about exercise and the CMT patient at the Summit!
I am amazed as a fellow CMT person dedicated fitness regarding your story.
I get that your life makes Krystal “clear” Sentz, 😀
I hope we connect prior to the HNF event
[email protected]
I am so inspired.
Very inspiring! I can’t make the summit but thrilled to know it is taking place. Thank you Jenny for sharing!!
Congratulations on accomplishing your goal.
I wish we could attend, but my husband’s CMT has made it difficult to sit for an extended period of time. He has never been comfortable on planes because of his height and CMT has made it even more uncomfortable for him. We look forward to reading the results of this summit meeting.
Hi Carolyn,
Sorry your husband is having a hard time with his CMT. We will have an overview of the summit later this Fall.
I think this is fabulous for Jenny, however I don’t feel this is a good representation of the average CMT diagnosed person. I am struggling more and more with strength, weakness, fine motor skills in my hands and being able to do things. I am just speaking up because I also see that there is so much focus on the 5k runs etc. I do believe we need to be active but I can’t even walk across the parking lot at work safely. When I do too much physically (which is just a few “very full” days) I get so warn down and fatigued I want to hear from others like me on how they cope. So are these very athletic CMTers less common than the average? Or have they found some new medication or cure that I don’t know about? Or do they fit under one of the newly discovered CMT’s that I am not familiar with? Maybe you should have 2 spotlight people. The other one could be pretty limited physically but have a positive attitude with accomplishments that aren’t physically related.
Hi Sue,
That’s a great point, and that’s exactly why we’ve assembled a panel of CMTers that represent the varying degrees of physical capabilities due to unexplained variances in symptoms not only between different types of CMT, but even within the same type of CMT. It’s important to illustrate this to researchers so that they can understand it better, but also for those of us with CMT. The planned discussion about exercise will include something for everyone. We hope you’ll join us!
Here are two others panelist on the topic:
https://www.hnf-cure.org/cmt-summit/summit-panelist-spotlight-estela-lugo/
https://www.hnf-cure.org/cmt-summit/summit-panelist-spotlight-kristin-gelzinis/
Hi Sue,
I hear and share in your CMT struggle. Running is not an option for so many of us. Wellness is a huge focus for HNF and our CMT Connect workshops. We want to share as many facets to fitness, health, nutrition and emotional well-being as possible. I’m very familiar with fatigue and exhaustion from this disease and am sharing an article I wrote a while back that was a significant turning point for my CMT as well as the start of my journey to self therapy and CMT empowerment. We believe that if we can show new perspectives and possibilities, it will empower others to finding new hope and making impactful lifestyle changes.
http://www.elephantjournal.com/2013/12/things-yoga-taught-me-through-my-disability-estela-lugo/
Best wishes,
Estela Lugo