Thursday, October 18, 2012


"Correction does much, but encouragement does more. " - Johann Wolfgang von Goethe

I don't think that it's a secret to anyone that us CMT-er's have our days where we feel down and depressed.  Gosh, sometimes it may be more than one day, or a week, or more than that.  It can be normal for anybody, especially someone with a chronic illness.

The one thing that I believe is THE most important asset that we can have is a great support system.  I don't think I am alone in this belief!  I have been extremely blessed throughout my life and struggle with this disease to have an amazing support system.  Wonderful and supportive parents, siblings, spouse, in-laws, extended family, friends, and even my own children.  All amazingly wonderful people who have always been there for me.  They have adjusted how things are done around me, and make minor changes and accommodations without question or hesitation.  And, most importantly, they have always been there to lift me up when I'm feeling down.

I remember the day I found out that my then 6-week old daughter also had CMT.  Even though I had suspected it even before she was born, I broke down in inconsolable tears.  My husband was right by my side, and my parents both rushed to be there to calm me and tell me that things would be okay.  When my husband hasn't been able to attend important appointments with my, another family member has always stepped in to be with me.  When I was 14 years old, and about to go in for a rather big surgery, 6 or so of my best friends gathered together one weekend in support of me.  When I'm having a physically rough day, one of my best friends, who coincidentally lives right next door, is always there to step in and give me a hand.

Support systems like this one are vital, and for me, essential to getting through my day-to-day life dealing with CMT.  But one part of that support system has not been mentioned....supportive and understanding doctors.  I've heard stories and had experiences on both sides of the coin.  Amazing and positive doctors, and some not so much.  So what do you do when a physician can't offer you the emotional support and positivity that you need?

I had one such physician, we'll call him Dr. R, who I had seen since I was about 14 years old.  I always really liked Dr. R.....he was funny, blunt, and reminded me of Danny Devito a little bit.  When I was 16 and had my learner's permit, I accidentally ran my mom's car into the cinder block wall in his parking lot.....and he teased me about it for years.  He always joked around with me before surgeries, always asked about my kids, and knows very well how much I despise getting stitches removed.  I trusted his opinion when I trusted nobody else's, even my own.

Earlier this year, I went and visited Dr. R for a problem with a callous on my foot.  We were chit-chatting as we usually do, and I began expressing my excitement about starting my support group here in Utah.  He inquired a little more about it, and I began sharing with him all of the research that is being done, and how a cure is believed to only be a few years out.  This is something that I'm very excited and passionate about, and I had assumed he would be, as well.  His response?

"Well, good luck with that.  I wouldn't count on a cure happening during your lifetime."

Wait, what?!  I could not believe what I was hearing.  I'm not sure if he saw the incredulous look I was giving him or not, and I really didn't know what to say.  How could this doctor that I'd put my emotional and physical trust in for 16 years have zero hope?  I left his office that day feeling very defeated.  I spent a lot of time thinking about that experience, and came to the conclusion that I would not be going back to see Dr. R.  I don't think I could trust someone again who has such a negative attitude toward this disease that I struggle with every day.

I've heard similar stories from other CMT-ers, and those stories always make me so sad.  We trust our physicians to have the answers and solutions for our physical health, but we also trust them with our emotional health.  For instance, my daughter's orthopedic doctor is one of the funniest, most positive people I have ever met.  My daughter actually gets excited to go see him, because he is so focused on making the visit a positive experience for her.  Having great physicians in your support system, I believe, can make or break your own attitude about dealing with this roller coaster ride that is CMT.


susoraya said...

I did have the same experience with my diagnosis just a few months ago and I was pretty demanding with this Dr. Also got my children tested and one has it. I am now doing my own research on how to help her and improve some of the symptoms. I liked your blog, let's keep in touch to support each other.

Lenka said...

A support system makes all the difference. When I was hiding/denying my CMT symptoms, I was lonely and anxious. Once I owned my challenges and found support online and with my friends, I felt so much better.

Supportive doctors are golden. They make big decisions about our lives in what can be brief appointments. Referrals, medication, ideas and guidance... I appreciate everyone who helps me. Right now my physical therapists are going above-and-beyond. I do lean on them emotionally when I share my many symptoms.

I need to send some thank you cards :)

Thank you for being part of my valued support system :) You rock!

storyboutagirl said...

I'm not sure if you still look at this blog or not but after reading your story and your daughters I just wanted to comment. My boyfriend (32) has CMT along with 2 of his siblings, his father and a couple of aunts and uncles.

He started with symptoms like toe walking and balance/coordination issues at a very young age and was diagnosed before the age of 10 (I don't remember exactly how old he is).

We really want kids and given his family history with so many people on his dad's side and immediate family having it we figure there is a high chance that at least one of our kids will have it.

Reading your story and your daughters story struck a chord within me. And reading this post made me realize just how important a support system is. Hope you guys are doing well.

Melissa said...

@Susoraya: Thank you for your comment! I think that being a proactive parent is imperative in helping our children deal with this disease. Thank you for your support!

@Lenka: Thank YOU for being part of my support system! We need to be in communication more often!

@Storyboutagirl: I do still look at my blog, and I need to be better about posting! Thank you so much for sharing your own experience! The decision about whether or not to have children when they have such a high risk of having this same disease can be a difficult, personal decision. For me, I have never regretted it! All of my children are such a joy, even with the struggles that come with them :)

Christine Roberts said...

HI! I just found your blog, and I have loved reading it. I'm so disappointed by your doctor. I believe we will see a cure, and cures to many many more things in our lifetime, so that our children and grandchildren can have healthier bodies and longer lives. Anyways, my husband has CMT (was diagnosed at 12) and wears AFOs on both legs since 18. We have two children, a boy a girl. My daughter is almost 3, and people have commented that she walks a little differently, but I walked funny until I was about 5 or 6, and am still a little pigeon toed now too (i don't have cmt)She trips, but I'm not sure if it's any more than other kids her age. From what I've found online, symptoms can be wide ranging for toddlers. Can you point me to any resources? Any advice you have?? I don't think I want to do any major testing because I'm afraid of the cost, and I don't want her to suffer trauma from it. And, I'm not sure that testing would even solve anything. What are your thoughts?