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Monday, February 28, 2011

Grieving in the Chime Forest

INSTRUMENTS

Chime Forest
post by Sam Hernandez

My experimental musical instrument is finally complete. I call it the Chime Forest, because that is what it looks like and that is what it sounds like.


The chime forest consists of 18 glass vases. Each vase has an electric motor suspended above it that can be raised and lowered. The motors have various things attached to the ends that throw the rotation off balance and make the motors jiggle. When the motors are lowered, they collide with the vases, making a tone. Since the motors are unbalanced, they bounce off the vases and then collide again, creating a fairly regular but unpredictable rhythm.

The vases can be tuned by adding water to the inside; adding water lowers the pitch of the vase. Each vase can be tuned about an octave, so the instrument can be tuned to any desired scale. For this posting I've left out the water, since the vases already cover a pretty wide range of notes:



The only additional control is an on/off switch. This switch activates or deactivates the motors. The instrument can still be played even while the motors are off, but it won't have quite the same sustained rhythmic effect. One use of this switch is to pre-set the motors up or down, so that turning on the motors will activate a specific "chord", and turning it of will stop it.

Since the chime forest is a fairly large instrument, it has been designed for easy assembly and disassembly. The wooden frame can be assembled with no tools. The wiring still requires a screwdriver to attach, but a future revision might be to add plugs in place of the screw terminals.

Here is an example video showing the chime forest in action:






CHARCOT MARIE TOOTH

Grieving
post by Tim Phillips

I have been pondering the topic of grieving & CMT for a while as a blog post I need to write. Last night I happened upon a thread from a teenager talking about the realization of grieving for her loss of function, then others, from multiple generations, responding with support and ideas. It made me remember that this is something I’ve been dealing with since puberty, something I have embraced but I’ll never leave behind.

This is the thread: [click here]
The CMTA have launched a new website and within it is a wonderful thing, something I was trying to achieve here but to no avail. They have created a network, not dissimilar to facebook, where organized conversations and advise around CMT can take place, more importantly IS taking place – it’s brilliant and long awaited.

I’m realizing that my ‘CMT creates music’ project is more successful at reaching people that are not in the CMT world, and I’m delighted with that, but a centralized forum for discussion around CMT is very exciting for me – we’ll see if it stand the test of time, it has an obvious danger of homogeneity.

It was only a few years ago that I managed to put a word to what I was feeling and experiencing (grief), and I was amazed, relieved and intrigued when I finally did. Grieving is something I always imagined would be done over a discrete event. Someone dies, you grieve; you get divorced, you grieve; there is some great disaster, you grieve – but then you move on. Well this is more complicated because what I am grieving, (loss of ability, mobility, feeling etc.) is also changing. More specifically it changes in waves; my condition will worsen, then it’ll stay the same for a while (sometimes a year, sometimes 5), then it’ll worsen again. So my grieving is also an ongoing process, which can be confusing to say the least.

I’m sure everyone has their own style of grieving. Mine seems to involve a lot of personal reflection, this is time often alone doing a completely unrelated activity, more than likely with a little too much vigour (perhaps building instruments!). This time is crucially interspersed with a strong need for communication, friends, family, expressing what I’m feeling (perhaps even writing a blog post!).

Most people have heard of the Kubler-Ross ‘stages of grieving’ or ‘stages of dying’ as it was originally intended: denial, anger, bargaining, depression and acceptance. I don’t believe that I have any specific emotional stages or order to these feelings, as Kubler-Ross would suggest, but it is helpful to see these words and use them to find my own logic to what I might be feeling. For example, on reflection I can often see that I am neglecting to recognize a new loss of function, I carry on regardless and as a result, I am denying myself and hurting my body. Then I need to face up to whatever has changed, which happens differently each time.

There are clearly dynamics to grieving and it is something that comes and goes. I’m now comfortable in knowing that when it goes, it will always come back and that there is nothing wrong with the sadness and curiosity that comes with it. I think it is a key aspect to living with CMT and too often passed over in place of concrete physical measurements.

As you are reading what seems to be a testament to my acceptance of lost function, please don’t think things are that simple – I pride myself with many trains of thought. For example, I’m an optimist by nature, although hopefully not too annoying with it. That optimism has led me to undertake a recent tendon transfer surgery that could reduce pain in my foot and improve my mobility, definitely not an ode to accepting my lost function. I’m currently sat on my sofa in discomfort, recovering as I write this post, so I have no idea yet of how successful the procedure was.

I truly believe that this surgery is the best educated choice, for me now, to try and improve my situation, but I’m well aware that it is also another piece of hope to hold on to and I’m grateful for that too. I guess the point I’m trying to make is to bear in mind that anyone with a chronic disease will not only change in their abilities but in their thinking, so not assume that what you formally knew is absolute.





This is an interesting article that goes into a bit more depth on CMT and grieving if you’re interested:
http://www.lindacrabtree.com/cmtnews/Grieving/Grieving2.htm

Wednesday, February 9, 2011

Tinkles and a Journey

INSTRUMENTS (#4)

The Tinkler Tinkles
post by hj mooij

The tinkler was first conceived as a noise maker, it's a simple design structured around an old bicycle wheel. The spokes are different tensions which produce different pitched tinkles when struck with a solid object.
It's really fun to play because there are a large variety of tinkles that can be produced. The spokes create differences in spacing at various distances from the axle which results in different rythums of tinkles. The wire frame is just for looks, but we did attach a small microphone to the frame and it made some really nice scraping sounds when played. I think it could be improved by creating some custom spokes made from different materials. . . the fun never ends.




CHARCOT MARIE TOOTH

Here is a wonderful post by Michele that is probably more pertinent to me than most, as I am to have a similar surgery next week. This is partly why I asked her to write it, but surgery is also a big question for people with CMT, weighing up the trauma and risk against alleviating pain and gaining mobility, so I wanted it discussed in this project... Either way I'm happy to hear and share Michelle's enthusiastic results (and steady myself for the patience I'll need). (Tim)

Michele has a great blog of her own if you'd like to read more: http://myjourneywithcmt.blogspot.com


My Journey Through Surgery
post by Michele

A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.

I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.

I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.

Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.

Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.

Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.

I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!

Michele


Tuesday, January 11, 2011

Performing Progress

INSTRUMENTS
post by Tim Phillips

The production of instruments is still very much on the go, but to celebrate the New Year we had a small performance with four of the experimental instruments and a saxophone.

Neither the sounds or picture quality are great, but there should be plenty of enthusiasm to keep you entertained. Please check it out, share it around.



We’re still collecting money and nearly at our goal of $5000, any help to get there appreciated: www.firstgiving.com/timjohnphillips

There is still a bigger exhibit/performance in the works featuring all the instruments – I’ll let you know when it’s coming… (these things take time).



Walking is one of the biggest conundrums with CMT, special devices called AFO's (Ankle Foot Orthotics) help solve it. Here’s a video a friend of mine made that does a great job in showing just what those AFO’s do. Thanks Geoff. (Tim)

CHARCOT MARIE TOOTH
post by Geoff the CMT drummer

Saturday, December 11, 2010

The Good News and the Bad News

Last weekend we had an instrument making workshop to combine forces to get these new inventions completed. We got one finished, two half done and one nearly started, which is pretty good going considering how much fun we had.

This post marks the commencement and completion of the Sound Swing by Claire Phillips; a simple and open-ended approach makes this a beautiful instrument. Also below is a great insight into the unpredictable nature of CMT from John Oltmann; the main cause of frustration and confusion around the disease by both people that have it, and those that don't. Thanks to you both. (Tim)


INSTRUMENTS (#8)

The Sound Swing
post by Claire Phillips

I’ve always loved the sound of wooden percussion instruments, and this love amplified when I first heard the wood blocks in Iannis Xenakis’ solo percussion piece, Rebonds. The woodblocks come in unabashedly, instantly creating an excitement in the air. Woodblocks are played very deliberately to get this confident sound, but I wanted to make an instrument that incorporated an element of the unknown in its very being.

The Sound Swing uses swinging boxes that house a golf ball each. The ball hitting the edge of the box at the end of the swinging motion creates the sound. Using a pendulum swing as the perpetrator of the attack of each note means that the next note will occur at a slightly shorter interval, decaying over time until it is still and silent. When allowed to swing, the control over the pattern of the piece is taken away from the performer and into the hands of laws of physics. When multiple swings are in motion at once a wonderful polyrhythm occurs that would be almost impossible to replicate with any traditional instrument, including the treasured woodblocks, due to the difficulty of a human being perceiving such rhythms well enough to play them accurately.

The process for making the actual sounds took much experimenting. I wanted to limit the number of variables for each sound, so I decided on using the same item in each box, in this case, the golf ball. I tried many other types of ball; bead, ping pong, marble, etc, but none made as deep and clear of a sound as the golf ball.

I prepared the bottom of each wooden box by lining it with craft foam. This dampens the sound created by the ball rolling from one end of the box to the other. I only wanted to hear the “tock” of the ball hitting the wall of the container, not the sound of it getting there. I experimented with different lining materials including feathers and felt, but the craft foam worked the best. I also considered lining only the sides and not the bottom of some boxes to isolate the roll sound as another layer to the instrument, but in the end decided to have a tighter constraint system in order to have a unified sounding instrument.

I did allow some variance by having three sets of two boxes hanging in the swing set. Each set of two hangs at a different length so there is a long, medium and short set. This allows for a more interesting rhythmic possibility as the time it takes for the ball to hit the edge of the box at the end of the long strings is much slower than that of the short. This is the same concept as the older metronomes that swing back and forth, and as you adjust the weight higher or lower the beat is measured faster or slower. I’d like to see someone keep time with the Sound Swing!

The other designed variation in sound types in the Sound Swing is that in each pair of boxes, one rectangle is facing length-ways, while the other is sideways. The ball hitting the edge of the box sounds quite different depending on the length of wood that it hits, so the lengthways sounds different to the sideways. There is also some natural fluctuation in sound depending on each individual piece of wood. This is not deliberate, however I really enjoy the result.

The actual frame construction and method of hanging the boxes also took some trial and error, as well as some help from the wonderful Tim. For example, we realized that unless we hung the boxes with the strings wide apart, the box would swing in a fluid arc that did not encourage the ball to whack the side of the box. The box needs to stay more parallel to the ground in order for a strong “hit”.

It is up to the composer or performer to come up with interesting ways to play the Sound Swing. With the limited amount of time I have spent with it (we had to deconstruct for now since it takes up the whole living room), I noticed that pulling rather than pushing is easier. Also, playing different combinations of boxes together can make an endless amount of variation: it’s fun to play just one box, or in pairs, or by box alignment, all at once, etc. There are endless possibilities, and each time it is played it will sound different! A particularly enjoyable moment occurs towards the very end of the performance when the silence is pregnant between beats, and nobody knows when the final note will be.





CHARCOT MARIE TOOTH

The Good News and the Bad News
post by John Oltmann

“The good news is it’s not going to kill you. The bad news is it’s not going to kill you.”

That’s how an e-quaintance says his neurologist gave him his diagnosis of Charcot-Marie-Tooth, a peripheral nerve disease.

My own diagnosis, which I received from two different neurologists, one more literally than the other, basically said, “Yup, you’ve got it, have a nice life.” Experience indicates that neurologists are interested in you up until they determine there is nothing they can do to help, and then it’s time for them to move on.

The first time Charcot was mentioned to me, at age 50, it was regarding my left foot, which one morning was suddenly too painful to walk on. I was told I had a Charcot foot, but nobody spelled it out for me. A web search for “sharko foot” found a site that included a pronunciation, and I learned it was spelled Charcot. I also discovered that there was even a disease called Charcot-Marie-Tooth.

The next mention was from the orthopedic surgeon working on my Charcot foot, who, based on the classic deformed shape of my other foot, made a visual diagnosis of Charcot-Marie-Tooth. Another web search took me to Charcot-Marie-Tooth.org, where a list of symptoms read like a check list for me of all the things that have ever been ‘funny’ about my physical condition.

It’s now been almost five years since that first mention of Charcot anything. At first, I thought the rate of progression was slight, and I would live the rest of my life without too much impact. Instead it has been like a switch was flipped, with the volume turned waaaaaaay up on the symptoms. At times, it seems like six months ago, and scarily, sometimes even two weeks ago, were the good old days.

So I cope, I whine, and I do what I am able to do while I still am able to do it, and try to do everything I can do to have that ‘nice life’.

Wednesday, October 13, 2010

Four Kinds of People in the World & The Musicycle

The completion of Instrument #7 brings speed and a sci-fi aesthetic to the project - this one will go far! Also see below a great piece from Ron Rodrigues, reflecting on being a caregiver for his wife who has CMT. Wise words, but so much easier to read than implement... thanks Ron. (Tim)


INSTRUMENTS (#7)

The Thornton OG Musicycle
post by Will Longstreth


This creation was inspired by the music box I used to play with when I was a kid in combination with my lifelong passion, cycling. The box (as seen in the video in an earlier post) is a "Thorton" metal disc music box, and was passed down from my great-grandfather. Apparently these were quite fashionable around the turn of the century. They also have sharp saw-toothed edges for torturing younger siblings, but I digress.

So anyway, the theory was to mount a mechanism which is capable of producing different notes akin to the tabs on the records hitting the keys in the music box as the record spins. On the bike the best way to do this seemed to be mounting spring steel, cut to different lengths for different notes, on levers placed in the same spacing as the spokes so you can play chords (ideally).



With a little help from my more than capable machinist friend, voila! We're still working on tuning and how to mic the different tabs. Always an education.

Here is it in action...






CHARCOT MARIE TOOTH

Four Kinds of People in the World
post by Ron Rodrigues

"There are only four kinds of people in the world--those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers."
- Rosalynn Carter

In the beginning of my caregiving role with my wife, Donna, I wanted to somehow make her pain go away. Massaging her was with the expectation of making a difference. This expectation had a lot of side effects. For example I would deny the existence of her ailment. She'd ask me, 'do you see the atrophy in my legs'. I'd say no. It felt like if I gave it "power" CMT would overtake her. I felt I was unable to help. In some ways I felt like a failure.

Then one day I had a shift. Instead of trying to fix her I just loved her. Boundaries were set by me. In doing this I was able to say - wow sounds like you really need to see your Doctor. I'm here to love you. Technical questions and concerns need to be discussed with your doctors. I am a licensed massage therapist. However this is my wife so when Donna needed a full body massage I needed to gift it to her from a practicing massage therapist. This was probably the biggest lesson I had to learn.

I am to give love - only love and that's it. I must express compassion and forgive myself when I feel I have come up short. I am reminded that setting boundaries opens my heart.

Once I was willing to - not be enough - I was enough. This helped me care. I found relief. When I felt better everything flowed. The energy was positive and everything worked out. Then came the awareness that sometimes letting Donna figure it out for herself gave her strength and hope. It allowed me to come from love and compassion. This was rewarding.

I am now reminding myself to stay out of the outcome. Living in the moment makes it possible to see the little things that make big differences. Getting out of my ego self opens the door for true caregiving. When I am in MYSELF all is well and my inner strength connects with Donna's inner strength.

Now I give care and I receive so much. In order to be a good caregiver for Donna it is so important to respect myself. I am very hopeful we will find a way through & that's what caregiving is all about. Breathe and relax and share Love, Light & Laughter.


Monday, September 20, 2010

CMT Awareness Week marks completion of Bubble Organ



INSTRUMENTS

Completion of the Bubble Organ
post by Tim Phillips

Phew, I've done it. I've created a monster, I have a bubble organ in my midst.

I took the method for making one bubble module and did it 8 times (each time a little better so that the last bubble drone lasts about two minutes)! Each module has its own bubble tone governed by the length of its attached tube. It took a lot longer to build than I expected, but I'm more than happy with the result.

As you can see I have them all lined up from low to high, somewhat like a traditional organ. With a little more space, I'm looking forward to future variations in their positioning; perhaps scattered, in a giant circle, clusters, patterns - there is a lot of room for more exploration.

Enough with the words, I know you're really interested in how it sounds, so here are some examples of what it can do.

1. This is each of the bubbles in sequence, from high to low:




2. This is the Organ's debut as a performing instrument:




3. Just for kicks, this one shows how long a bubble module can go:





CHARCOT MARIE TOOTH

CMT Awareness Week
post by Tim Phillips

This week is the first ever National CMT awareness week in the U.S., so be aware!
Stemming from a whole stream of grassroots actions (this project being one), there has been enough momentum created to really try and raise national awareness to this disorder.

This is the website:
www.wearethecmta.com

I feel confident that the CMTA have set up a very strong research program (
STAR) that is making great progress, but I am convinced of this fact due to a fair amount of inside knowledge. The important accompanying task to the research is to create a public face for CMT, one that demonstrates the integrity and efficiency of the work being done, so that people unconnected with the disorder can also recognize the value of supporting this cause. (To see all I've written about the research, click HERE and scroll down).

The awareness week allows the CMTA to bring together all of the individual actions with bigger national events such as radio, television and internet segments, to voice a 'rallying cry' if you like. Hopefully it will create enough conversation to get some decent media coverage so CMT can start to become a household name.

As an interesting side note, I was contacted this week by the original maker of a bubble organ,
Aaron Wendel, a stranger who by chance played a timely part in inspiring the 'CMT creates: music' project. Of his own accord, he had stumbled across my bubble organ on the internet and then wrote to offer his support for the cause. This was an exciting affirmation for the project and apt that it coincided with the completion of my bubble organ!

If you haven't told anyone else about this project or CMT, this is the week to do it. Please help us out and pass it on. In case you're wondering, I'm still very open to making more instruments if you're willing to donate more money! - DONATE HERE -

Friday, September 10, 2010

In the Pursuit of Pretty Shoes


INSTRUMENTS
Here it is, the first instrument to be finished (well as near as damn it),
#5 - The Texture Harp. (Tim)

Texture Harp
post by Meghann Welsh

I've discovered it's hard to describe the sounds of textures. "Talking about music is like dancing about architecture" as they say. So, I've used the generic "white noise", although technically incorrect, as my base sound descriptor, and applied modifiers to that. Let me know if you can hear the textures or describe the textures differently!

Currently, the strings have four different textures:

Waxed: Twine coated with bee's wax. Sound when rubbed is a sticky-smooth "white noise", or a squeal and squawk when more pressure is applied.
Grit: Twine coated with wood glue and sawdust. Sound when rubbed is a rough "white noise".
Fiber: Unaltered twine. Sound when rubbed is a soft-smooth "white noise".
Metal: Unaltered metal twine. Sound when rubbed is a hard-smooth "white noise", or a zipper-like noise if fingernails are used.

The strings hang from a frame that I made out of 1/2" EMT. Wye (Y) fittings at the top allow for the frame to be expanded to make room for more strings. The threaded pipe allows for the frame to be broken down and reconstructed pretty easily. I may still add a soundboard, but cans at the end of each string, acting as resonance chambers, are doing a pretty good job. Experimentation with piezo mics in process...

In addition to being rubbed, each string can be plucked.
In both rubbing and plucking techniques, the pitch of each string can be altered by changing the tension of the string (by applying pressure to the can).

Hopefully you can get an idea of the various sound possibilities with this late night demonstration:





CHARCOT MARIE TOOTH
I met Jessica through her
blog and have very much enjoyed her writing, so I'm very happy that she has offered to contribute to this project! Our 1st New Yorker (though originally from California...) highlights the common fact that most people with CMT are not diagnosed for a long time, because even the medical world is not very clued in to this syndrome. (Tim)

My Story
post by Jessica Wells, a.k.a. Miss Pretty Shoes

Originally a So-Cal girl, I quit everything I knew in the Spring of 2008 to come to the Big Apple to chase my dreams! After a year of "pounding the pavement" of The City That Never Sleeps, I started experiencing unshakable pain and swelling in my left foot and ankle. I tried for 6 months to identify the cause of the pain, visiting podiatrists, chiropractors, orthopedic surgeons, and neurologists along the way--all to no avail! Finally, after a visit to an unrelenting and dedicated sports medicine doctor, we discovered a multitude of issues, including a torn peroneal ligament, severe arthritis, and a bone bruise.

After failed attempts at using natural healing methods like physical therapy and reduced strenuous activity, I was referred to a surgeon for a consultation. Immediately upon taking one look at my feet, he diagnosed me with Charcot Marie Tooth Syndrome, a progressively degenerative neuro-muscular disorder. Through my own extensive research, I learned I had most of the classic symptoms of CMT, though no other physician had ever taken notice to them (including an inexplicable propensity for broken bones, sprains, and other joint injuries; painful arches; an overwhelming dislike for running; a lifelong remorse for never fulfilling my potential as a professional ballerina; and a general sense of crabbiness without at least 8 hours of sleep every night).

Over the next few months, my surgeon (a.k.a. the mad scientist) and I formulated a treatment plan centered around progressive surgeries to strengthen my ankles, re-construct my feet, and to hopefully reverse the progression of this rare disease, beginning with the left foot first. And, in the midst of these physical challenges, I have also been forced to come to grips emotionally and mentally with the new found diagnosis of this debilitating, lifelong disease.

I am determined to overcome the challenges of CMT, all with the hope of someday again finding and putting on that perfect pair of pretty shoes . . .