When Things Were Simpler...

In our society, progress is something that has propelled us onto bigger, better and easier things. Being an 80's child, I remember when things were a lot simpler...before cell phones, computers, iPads, wifi, etc. It was a simpler time when kids were kids longer, when we played outside until our moms called us in for dinner, when we dropped by friends and family's houses without having to call first, when we rode our bikes without helmets...I love and am totally addicted to the comforts of modern life, but there are times when I miss when things were less complicated.

When things were really simple...

When things were simpler, I was just a clumsy girl who fell a lot but I walked with no problems, I wore shoes when I felt like it, I danced to my favorite bands all night long and I didn't have a care in the world beyond my sisters annoying me or wanting to borrow my clothes all the time. When things were simpler, life was uncomplicated, health wasn't something I particularly thought of very often, because I had it.

It's been almost eight years since my CMT diagnosis and easily over ten since my symptoms started to show and really bother me. Eight years isn't exactly a long time in the big scheme of things: it's two World Cups, two presidential terms, two Olympic games, it's going through high school and college...but in the scheme of my life, eight years has changed things in ways I would have never expected.

In my personal life, my sisters moved back to Brazil, I graduated college, met and married my best friend, moved from NJ to CT, became a first time homeowner, and blossomed into an adult. In my CMT life, things changed drastically. I went from ignoring my diagnosis for a couple of years to a hot pursuit of answers and medical help. I had two reconstructive surgeries on my feet and another minor surgery in search of pain relief. I've met a slew of doctors, surgeons, and neurologists...some of which helped me immensely and others who upset me more than they'll ever know for things said without thinking. I progressed from an active and outgoing girl who loved to dance to a girl who doesn't go out often without fully analyzing where, when, how long, how far, who is going and if there is seating. I went from avoiding medication at all costs to not being able to deal with my pain without them. I went from regular walking to less and less walking, to the wheelchair and now to the scooter.


Life with CMT is full of ups and downs, both physically and emotionally. Just as you are getting comfortable with a change in your condition, things change without your noticing and you have to adjust your mindset. Some adjustments are easier to accept than others. Sometimes it feels like you're in a constant state of mourning...mourning things you could do that you no longer can, mourning the person you used to be and adjusting to who you are becoming. Even mourning the future...the dreaded how-will-I-be-in-five-years question. It's never a good idea to dwell on these changes too much...it brings on too many feelings, and most of them are not the rainbow-filled, peaches and cream kind. Sometimes it is good to acknowledge those feelings though, throw a heck of a pity party for yourself, and then move on.

There are so many things I miss...things that I'm sure most people take for granted. Taking a walk at the beach, walking the mall, dancing the night away...But I have also realized that I am no longer the same person. I am more mature, I appreciate the little things in life, I am grateful for the days when life is good and CMT is taking a hike, I sympathize with the pain of others in a way I never could before, I am so grateful for the people in my life who are such a strong support system, and I am thankful to God, that even though He gave me an obstacle in life, it's one I can endure and He gave me as many cushions as He probably could without taking away the lesson.

When things started to get complicated...

I think CMT'ers are much stronger people than they get credit for. We are all struggling with this invisible condition that many people aren't even aware of and we are trying to do it all with a smile on our faces. It's a constant battle between body and mind...our body wants to give up and our minds are refusing to let it. Progress hasn't been a friend to my body, but I pray that this same progress leads researchers and scientists towards a treatment that will help us all.

Scootin' On...

Posing with my new ride!

It's no secret that my life has changed quite a bit over the last couple of years and due to my CMT progression I have been a much more avid user of my wheelchair. The wheelchair is great because it allows me to do so much more, but it has a few drawbacks. It's very tiring for whoever is pushing me around (John got calluses in his hands from pushing me around for an entire weekend when we went to Newport, RI two years ago), I don't feel very "free" in it because I am taken places instead of going where I want or stopping when I want, and I feel like I have no control. Sometimes, in a crowd, my "pusher" may not realize how close they get to people in front of me and that gets me a bit anxious.

I have been wanting a scooter for a while to have the freedom to go at my own pace and to allow John or my dad to enjoy themselves more when we're on an outing. A friend of ours was kind enough to give me a power chair a couple of years ago but it's really bulky and heavy - we need at least 2 people to be able to load it into the car.

I became a member of the MDA a while back and recently heard of their loan closet. While I was away in Brazil visiting my sisters, I emailed my MDA rep asking if they had a scooter in their closet that I could take and luckily they did!!! The process was extremely easy! The supply store got in touch with me once I got back and I just picked it up last week. It's nice, light, fits in my trunk, can be lifted by one person, and it's sassy like its owner - it's a beautiful bright red :)


We were away last Thursday and Friday at a friend's wedding in Massachusetts and we heard of Old Sturbridge Village, which was only 5 minutes away from where we were staying, and what a great tour it would be. It's a living museum located in Sturbridge, MA, which re-creates life in rural New England during the 1790's through 1830's. I highly recommend it. And I was super excited to take my scooter for the first ride...I cannot even put into words how happy I am to have it!!!! It was wonderful! I felt so independent being able to steer myself and honestly, it's also a lot cooler than the wheelchair. Somehow it made me feel less "disabled" if that makes any sense...here are some pics of my riding around this beautiful place...

Loving life on my scooter!!!

CMT and Pain

There are many different symptoms that identify CMT. Not only is our condition the most commonly inherited neuropathy, but it also manifests itself differently from patient to patient. One of these symptoms that I would like to discuss, which is not exactly accepted by all doctors, is pain.

According to Wikipedia, pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, or putting alcohol on a cut. The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."

Pain is what led me to my Charcot-Marie-Tooth diagnosis and my pain has evolved over the years. Back then, I had pain on the balls of my feet because of my calluses and felt pain with each step. Then I began having a lot of "charley horses," pain in my calves, which I still have to this day. My most challenging form of pain wouldn't make its appearance until years later - my thighs. It's a strange form of pain, hard to describe. It feels like pressure, as if there is something permanently suffocating my thighs. This last type has become my biggest concern as it just refuses to go away, ever! It's my companion 24 hours a day...always present in my life. As I have described in earlier posts, I have started to take medication and do therapy that help give me some relief. However, many doctors still do not accept the idea that CMT causes pain. They try to tell you that you must have another unknown condition. As if one invisible disease wasn't enough! 

It can be extremely frustrating to try to persuade a medical professional of a symptom you have that is being caused by an actual diagnosis you have. The more and more I speak to different CMT'ers throughtout the world, I am convinced that pain indeed is a symptom of CMT. It would be great if we and the professionals who can help us were on the same page.

I wanted to write this post because I recently found out about an organization that very much cares about pain and is doing everything it can to help me and people like me. One of my dearest friends from church and I have always had a very special bond. She has a neurological condition and also has feet and pain problems. I always say that she's my body double! She recently attended a conference organized by the International Association for the Study of Pain (IASP), mentioned in Wikipedia quote above. She returned from this event extremely excited because this is a very serious organization, highly respected in the science world that focuses on research about pain. She told me that there were over 7,700 individuals from all over the world at this conference; discussing updates, presenting new ideas, and exchanging information. All of these professionals had one goal in mind: helping to alleviate pain, physical or emotional.

Over 1,000 professionals during one of the sessions.

I just wanted to share this information because it gave me a lot of hope and maybe it can do the same for you. It's great to know that there are thousands of people out there looking for a way to help ease our pain and suffering, and not only professionals in the CMT field. I am not holding my breath that there will be a cure in my lifetime, but I am very hopeful that I will be able to live happier, less pain-filled days sometime in my future.

EXTRA! EXTRA! Read All About It!!!

Today is a very exciting day for our collaborative CMT blog: Clicks for CMT. The Hereditary Neuropathy Foundation wrote a great article about it (Kudos to Melissa for getting this interview). To read the article, please click HERE. It's so exciting that our Fab Five blog is getting this exposure!! 

We have had over 3,500 views this past month alone!!!! When the 5 of us set out to do this, we definitely did not imagine that it would get so much momentum so quickly!!!!

Keep up the wonderful work girls!!!!

Rolling Around

As we are halfway through CMT Awareness Month, I have been thinking about possible topics to write about and realized I haven't touched on a subject that has been part of my life for over a year or so...it may be because I am still in denial, skirting the issue, ignoring, or just not talking about it unless necessary. It's not as if I'm ashamed, but when I think about it, it's a bit of a different reality to accept.

What I am talking about is how much more dependent I have become on using a wheelchair. My ability to walk or stand has gotten so limited that I don't venture out anymore without it. Last year, I purchased a CR-V just so I could have the wheelchair in the trunk of my car at all times. It has become a constant support and major assistance for me whenever I go somewhere that requires any browsing, walking or standing for more than 10 minutes.

While I am more than happy to be pushed around and am very glad that I get to do more than I would if I was on my own two feet, at the same time, I have some strange feelings about it. I try not to focus on the negatives: how young I am, how much more I was able to do not even 5 years ago, how I will manage pushing a stroller on my wheelchair when the time comes, and whether my future/inexistent kid will be embarrassed that his/her mama is on a chair...I know these are silly thoughts but sometimes they do pop into my head. I guess accepting the chair as part of my reality is a bit bittersweet ... when I was younger, this is definitely not how I imagined my 31-year-old self.

I also get annoyed at times with random strangers, all too eager to stare at me to try to figure out what's wrong. I can see their eyes going from head to toe looking for the reason I am bound to my chair and then looking at me a bit perplexed when I stand up to take a picture. I wonder if I am the only young person they've ever seen in that condition.

My dad and John took turns pushing me around in Newport, RI

I am thankful to my husband and my parents for always being more than happy to push me around. No matter how many times we need to get in and out of the car, John calmly assembles and disassembles the chair for me - I could not have asked for a better guy. I am also very grateful for my faith because without it, I may feel that things were unfair and do the "poor me" routine.

I also realize that I am lucky not to need the chair permanently...that I DO get to get up when so many others cannot...I think the process of acceptance is a long one, it doesn't happen overnight. Some days I am perfectly fine and others I am more emotional about it...I guess I just better keep on rolling on and enjoying the opportunity to enjoy this world on two wheels and a cushy seat...

CMT's Fab Five

Long ago when I started my blog just to keep my family updated, I never imagined how far it would take me.   I have met some amazing individuals and I am so grateful to have them as part of my life. My very first CMT-BFF whom I met, is my dear Jessica of In The Pursuit of Pretty Shoes. Jess actually came to the hospital during my first surgery and that has been the beginning of a beautiful friendship I am planning to have for life! She has stayed at my house several weekends, we have visited her in NYC, she traveled from Colorado for our wedding reception and she was the person who I talked to at the height of feeling down last November/December who helped me to see the light and start to feel better about everything.

CMT friends are uber special even though you may have never met them in person. CMT friends know and understand what you're going through. If I need to talk about my issues to a "regular" friend, even though they are very nice and understanding, I never feel truly comforted and end up wishing I hadn't "complained" so much. These last two years have shown me that I should rely more on these new cyber friends, who are such a real part of my life, and who are always willing to lend an ear and talk you through difficult times and are so happy to share in your happy ones.

I would love to introduce you to the other less known "Fab Five." We have all become great friends who have more in common than just a silly-named disease. We are young(ish...LOL), love life, always try to keep a positive attitude despite our difficulties, have very supportive families, and have shared passion for TV shows such as Grey's Anatomy. We have many similarities in our personal lives, yet our CMT symptoms could not be more different.

From top left: Melissa, Me, Esther, Nicole, and Lenka

Lenka lives in California and has 2 beautiful children. She interviewed me two years ago for CMT Awareness week podcast (listen HERE) and we've always kept in touch since. Nic lives in Canada, is addicted to the same TV shows I am and has 2 beautiful boys. She was kind enough to talk to me for almost 2 hours to help me with an issue and some CMT related questions I had. Melissa found my blog and read the entire thing in one night  (Insane!), is a super mama of 4 and lives in Utah. We have talked over the phone and several chats and she motivated me into looking at starting a support group in CT. Esther is a mom of 2 with a new baby on the way and lives the closest to me in NYC. It's mind-boggling we haven't met despite our best attempts. It will hopefully happen very soon.

These 4 ladies have helped me more than they can imagine and I am so grateful to each and every one of them. Someone PLEASE forward this post to Ellen so she can orchestrate a surprise meeting so we can become an overnight sensation like Sophia Grace and Rosie!!!! Seriously, I have never met any of them and it would be amazing to spend a few days together blabbing away. It might happen next summer, as Nic plans her family trip to the Big Apple.

Lenka had an amazing idea to do a joint blog where we can either re-post some of our entries or write original material in an attempt to raise more awareness for CMT. You can check it out here: Clicks for CMT: Bloggers Raising Awareness.

You can find all the bloggers and their sites here:
Melissa: My Life With CMT
Lenka: Lenkaland
Nicole: Nattering Nic
Esther: Contemporary Mom of Two

GRRRRRR Insurance and YAYYYY Sisters

Last night I got the letter I have been expecting...not surprisingly, my health insurance DENIED my request for more physical therapy. Beyond frustrating! They refuse to listen to the fact that we are trying to treat CMT and keep it at bay for as long as possible. They are stuck on my feet and keep saying that my feet are not showing improvement. No kidding, Sherlock! I have been treating MY LEGS, for their pain and weakness...my feet are what they are and are actually not giving me too many problems. Is that so difficult to comprehend? Now I have to deal with the whole appeal process when I get back home?

Get back home? Where in the world is Michele, you might ask? I am in Brazil, hanging out with my favorite peepz in this whole wide world, my thunder buddies, my two sisters...Kalila and Milena. So I will try to forget this annoyance and enjoy my time with them while it lasts and re-charge my batteries so I can kick some insurance butt when I get home!!

Dusting Off Blog in Time for CMT Awareness Month

Hello there! So I am finally dusting off my blog and cleaning the spiderwebs after a 3-month summer hiatus. It's not that I completely forgot about the blog, in fact, I had tons of ideas, but summertime got the best of me and I just never seemed to find the time to put them down on paper, I mean, web.

I am so thrilled that we are celebrating another CMT Awareness Month and I am hoping to do a bit more than I did last year, when I was at my all-time worst. I plan to dedicate another entry to awareness month and do more of an update on this one.

It's been a summer of ups, downs, discovering what works for me and what doesn't. The medication really did help me quite a bit but I finally realized the importance of another piece of my puzzle. The medication alone cannot do it, I need to take the right meds alongside consistent physical therapy. I have never felt more energized or stronger, like I was finally taking charge of my health and not allowing CMT to put me down as it wished. With the help of physical therapy and pool therapy, I finally felt like I had some control over my body.

I started everything slowly and built up my exercises on a weekly basis. Some weeks we didn't get it right and overdid them unintentionally, which would set me back a few days. I started working out my arms too, in hopes that I could make them stronger and get there before CMT got to them. It was empowering for me, as I watched muscles develop in areas of my body where there was only flab before. At the peak of feeling well, we had our wedding reception and I was able to dance the night away, a feat I hadn't been able to do in years. In the midst of feeling so well, I started to sell items on eBay in the hopes of making some extra cash easily from my home. It's been fun and exciting to sell items online and feel like I could contribute financially, however small the help was.

Physical therapy can be a bit annoying to do, almost feels like homework that you wanna skip, and I have gotten to the point that I was honestly looking forward to my appointments. Then, my insurance company butted in and tried making things difficult for me. Since I was feeling so good and my pain level had decreased, they no longer felt it was necessary for me to continue. I had no words !!! I just couldn't believe what I was reading. Didn't they understand I only felt so good because of all the work I was putting in and that soon, I'd go back to normal? I tried getting a new prescription, had several discussions with the insurance company and therapy place and only got an additional 4 visits. In the meantime, my pain escalated again to much higher numbers than in the past few months, I lost the muscle mass I'd built and my energy level dropped. Not to mention that when I went back for those 4 appointments, I was no longer able to do as much or as many repetitions. CMT seems to play a funny trick on your body - it takes you so long to build up and yet, it takes no time at all to lose the time and work you put it.

My therapist has submitted a new request for approval and included a letter from my neurologist. Now I am just anxiously waiting for the results. I know I can do some of the exercises from home, but it's hard to get motivated and stay disciplined during that entire hour, while trying to ignore my cell, the TV, Facebook, eBay....etc. If they do not approve my next request, I am going to look into an out-of-pocket maintenance program because I have finally realized that I MUST keep up my workouts, however light and simple, for my own well-being and to keep the CMT-bugs away.

I have heard from others that this is not so uncommon. The insurance companies will pay to help you get better but not pay to keep you better. Maintenance is not something they want to be responsible for, which can be infuriating for a CMT patient. Since our dear condition does not have a cure or treatment, therapy seems to be the best way to slow the progression. Thankfully, I am fortunate enough that I can afford to do a maintenance program, but what about those who cannot?

Publicity from CMT at the Tea

Hi y'all,

I'm always very happy to see news about CMT anywhere...I just continue to hope that the more we hear of it, the sooner we'll have doctors, family and friends understanding more about it and our daily struggles. I just never thought little old me would ever make it onto a newspaper helping to bring awareness to our cause so I'm obviously over the moon!!!!

I am still so grateful that my old firm supported the CMTA at this event and exposed CMT to a new audience as well as helping us to fundraise. 

CLICK HERE TO READ THE CAPTION

Video of Our 1st CMT Support Group Speaker

WOW...how fancy are we getting!!!! We just had our 2nd support group meeting last week and one of our members volunteered to record the lecture and post it online for everyone to see who may have missed the meeting.

This is Dr. Daniel DiCapua, Assistant Professor of Neurology at Yale School of Medicine providing an overview of Charcot-Marie-Tooth disease. I had my first appointment with him earlier this year and found him to be extremely knowledgeable and really great to explain and discuss CMT with. I am so happy that he agreed to come in to be our first presenter. To view the video, please click HERE.

FINALLY...Something's Working!!!

As someone who has tried such a multitude of medications, you're always a bit skeptical about starting anything new...and the new prescriptions I got didn't exactly start to work right away, as the doc said it would take a couple of weeks, but it was driving me insane to deal with so much pain...and with that much pain comes tears, emotions, etc etc...

However, they FINALLY kicked in about 10 days ago and I have been feeling GREAT!!! My pain is down to a much more manageable level and I'm even waking up pretty pain-free, compared to the mornings when I'm writhing in bed with pain and it takes me a while to get up. I can't even begin to explain how grateful and relieved I am!!!

Unfortunately, my insurance did not approve the medication for the chronic fatigue (something about it not being FDA approved), so I will have to wait until my follow up appointment next week to see if we could try something else to give me a boost at the beginning of the day...I am just praying that these meds LAST! I could use feeling a little normal for a while :)

CMT at the Tea ... Part 2

To read Part 1....click HERE.

I am a little behind on my blog, but I guess I'm catching up tonight. The Women's Tea took place on May 12 and it was a wonderful experience. I am so glad that I got to meet Jeana in person, who drove 6 hours from PA and spent two nights in CT; and hang out with Lynne and Ruth Ann outside of our CMT meetings. It was great to sit down with these lovely ladies and get to know more about them, their lives, and their CMT story.

Yours truly, Jeana, Ruth Ann, and Lynne

We weren't quite sure how interested the guests would be to learn more about CMT or if they'd just stop by the table, grab a tchotchke and run for their lives before we got a chance to say hello. We were pleasantly surprised when so many of the guests not only came over to our table, but stayed! They were SOOO interested in finding out more about CMT, in hearing our stories, and asked many questions. A common theme that we got was: "But you all look so normal!"....ummmmm, yes we do! Normally this phrase irritates me, but I could tell they didn't mean it in a negative way...they were really just not sure what to expect of this condition they never heard of.

Jeana had a chance to speak in front of the group and we collected some additional donations throughout the event. I was extremely grateful to have my old firm choose to highlight CMTA in my honor...to raise awareness and to fundraise...it truly showed me their support and that they appreciated me. I was grateful for the opportunity to meet Jeana and to hear so much about the CMTA, its programs and current research...it definitely gave me hope that maybe something will happen in my lifetime to help those of us suffering with this condition and I feel even better that I was able to participate in a fundraiser event, however small, but it gave me a great sense of accomplishment!

CMT Support Group Meeting in CT

I think I might have failed to write about the FIRST support group meeting we had two months ago...probably because I had way too much going on (aka leaving my job) and was a bit of an emotional mess...is anybody surprised by this fact anymore?

To make a long story short, I have participated in many support group meetings in NYC and was really missing the opportunity to sit and chat with people who really understand what I go through on a daily basis. I looked it up and found out there was no group in CT and after talking to one of my CMT Cyber Buddies Melissa, who just started her own support group in Utah, she suggested I contact Jeana at the CMTA. I called Jeana about the possibility of starting a group here in CT and she had great news for me. Someone had beat me to the punch and just gone through the entire process and the first meeting was at the end of March.

Lynne - group coordinator - is fabulous! I am so glad she took the initiative to get our group together. We had a great turnout at the first meeting and it was wonderful to meet so many people who lived nearby who were going through the same thing.

I suggested using my new neurologist from Yale, Dr. Dicapua, as a speaker for one of our meetings. He came to our second meeting, which took place tonight, and did a great job...went through the basics about CMT and answered our many questions. This time it was nice to recognize everyone and see how everyone has been...we're starting to get comfortable with one another and caring about the well-being of the group. So many people came up to me after the meeting to see how I've been and I thought that was really sweet.

Our next meeting will be in July and my friend who was coming over to help me with yoga will be our speaker. Everyone loved the idea! She is already familiar with CMT and will be able to cater to our needs...I am so happy to be a part of a group again and to know that I'm expanding my CMT support group not only online, but locally as well.

New Prescription Cocktail

Ohhh the life of a CMT'er!!! To try over and over again to find a set of medications that may help improve our quality of life, battle constant chronic pain and possibly lift us out of our chronic fatigue. I have searched high and low for different doctors, different types of doctors, new meds and I'm still searching for something that will help me - as I am sure are many people with CMT and other neuropathies.

One of my fellow pool therapy buddies recommended I go see her pain management doctor who helps her a lot and he is located in the next town over so I figured I should give it a shot. I made the appointment for yesterday and the hubs came along with me (it's always good for me to go with someone because I can NEVER remember everything I plan to say or ask).

We arrived for the 12pm appointment and weren't called in to the office until 1:30pm!!!! This is one of my BIGGEST pet peeves. What is the point of scheduling a time if you're going to keep me waiting so long? And, in case you missed it, I am going to see the doc for pain, so to leave me waiting that long is not making my body feel any better. We almost asked for the co-pay back and walked out when they finally called us in. My first impression so far was not good.

Thankfully, the doctor was very nice and helpful. I am only his THIRD CMT patient ever (Shocker!) - I am just glad at least that I wasn't the first! He listened to my entire history and we begun discussing what could possibly work and what approach I should take. At the end of our chat, we have added 4 new meds to my daily routine to start off with - well, 3 new meds and 1 vitamin. Two of the meds are for pain and one is for chronic fatigue, which is honestly the one I'm most excited to try.

I am cautiously optimistic about the possibilities and hope at least one of these will help me find some relief. The plan is to try them out for a month and go back to him for a follow up. I am crossing my fingers that I have good news then...wish me luck!

Possible Treatment for CMT??

Here's a link to an article I came across recently (even though this is from the end of 2010), but it's hopeful. I wonder if we can find updated information on this.

ARTICLE: Pharnext Receives Clinical Trial Authorization for a Phase II Study with the First Drug Generated by Its PleotherapyTM Technology. Read more HERE.

As we like to say in Portuguese...hope is the last to die!!!!