More people, more interest

So here is where things start to get more adventurous, as more voices arrive on the scene. I've obviously got a lot I want to say, but I'm recruiting more instrument makers and more CMT bloggers to make sure this site stays interesting. Today's post welcomes Sam Hernandez! No introductions, judge him by what he posts... One note though: Sam doesn't have CMT and nor will most of the instrument makers. I think this is to the benefit of the project as it will inevitably help reach more people who haven't heard about CMT before. The project is trying to build an unusual community dialogue between people that do and don't know about CMT.

INSTRUMENTS
post by Sam Hernandez

So I promised Tim I'd make an instrument for his CMT creates: music project. He's got one well underway but he's already committed to at least four and probably more. So what to make? These instruments are supposed to be experimental and made from found / scavenged material as much as possible, so the question was, what do I have that can go into making a musical instrument?

Well, one of my hobbies is electronics, and I have collected quite a large amount of stuff from taking apart various electronic gizmos. In particular, I have a big box of electric motors and a whole bunch of wire. Sounds like a good place to start:



How does one make sound with a motor? You can make the motor spin at a certain speed, and if it's loud enough you'll hear a tone that's related to the motor speed. There's plenty of examples on the internet of people doing this. It's neat, but it's not exactly visually appealing, it's kind of complicated, and it doesn't really sound that good.

My next idea was to attach something to the motor spindle and have that thing agitate a tuned object. I thought about strings, like piano strings or violin strings, but we don't have any of those around that I'd be willing to spare. Glancing around the kitchen shows what we do have: empty beer bottles and dirty dishes. So it wasn't a strain to think of hitting beer bottles with water inside, and that's what I am going with.


The green stuff in there is just water with some food coloring so you can see the water level. I was able to get eleven notes from the Corona bottles, which is pretty good, just shy of one octave. I think the shape of the bottle limits the pitches; the jump in water levels from the lowest note to the next higher one is very big, and it ends up on the other side of the bell shape of the bottle. The other notes change more gradually. For a full-fledged instrument I'll probably need a variety of shapes to get a good range.

The motors are pretty small and they don't have much torque, so whatever is attached to them can't be very big. I've been playing with a little piece of bicycle innertube taped to the motor. It's easy to get and easy to fabricate. There are some problems, but it's working ok for now.



To add a little bit of randomness to the sound, my idea is to dangle a motor directly above each bottle. The motor will bounce around the bottle, creating a quick varied rhythm. I haven't made a jig to hold the motors yet; that's the next step. The length of the wire suspending the motor will make a big difference; with a long wire the motor can bounce pretty far off the bottle, and even into the neighboring ones. That's ok for an ambient sound machine or something like a wind chime, but the idea is that this is an instrument; bouncing around into neighboring notes is a bit too random.



You can see from the video that the rubber on the end of the motor fouls up on itself at the end there. Improvements are forthcoming :) The motors could be controlled easily enough with push buttons, but I'm still thinking about the human interface to this instrument. Something that moves the wire closer to the instrument would give the player more control, but it might be tricky to have any sort of accuracy. I'll leave that for later :)

CHARCOT MARIE TOOTH
post by Tim Phillips

The Difficulty of Standing Still | Fatigue

Standing still is tricky when you have no balance. My lack of balance is mostly due to my lack of spatial awareness of my feet; they are numb to touch but also to where they are in space. I am unaware of when my foot touches the ground until the fact that it has stopped ricochets up my joints. When my foot is on uneven ground, I can’t tell if it is angled left, right, up or down. By looking at a stationary object I can tell if my body’s tipping, but I’m slow to adjust and correct my balance due to loss of signals in my periphery nerves. If I close my eyes I fall over.

I can stand still, but achieving stillness means constantly compensating for all the lack of senses listed above and that's hard work. My body is constantly making large and late corrections to maintain my balance. This is why standing is particularly hard and tiring. At least when walking I have some momentum to keep me centered. People with CMT suffer from fatigue and I think that this battle with balance is a key factor.

When I am very fatigued, firstly I need to eat. I guess the food gives me the energy to then do one of two things: One is to sleep, probably the best choice. The other, more common choice, is to try and compensate by putting even more energy into what I’m doing, a lot like a sleepy child refusing their tiredness. This is a fairly obvious stubborn reaction to my physical symptoms, but it is worth trying to be conscious of what’s happening and why.

Although it sounds contradictory, aerobic exercise really helps me counteract fatigue, as well as my AFO's (ankle foot othotics/braces) and as much rest as I allow myself.

Fatigue seems like a simple extension of tiredness, but it is far more complicated. I think that most problems with CMT either stem from it, or lead back to it. There are obvious things like balance and stamina, but also less obvious things like grieving and state of mind that I'll address later.

Makers & Cat Woman

INSTRUMENTS

Last weekend I had great pleasure in going to the Maker Faire first the first time. Oh boy, what a wonderful sensory overload. There was a lot of inspiration for instruments lurking amongst the steam punkers, robots and speedy cupcake cars. This was one by Benjamen Cowden that caught my eye.

CHARCOT MARIE TOOTH

I've just found out that I'm a bit like Cat Woman!

Actress Julie Newmar gave an interview this month, talking about her CMT.

Here's the video: http://abclocal.go.com/kabc/video?id=7442791

CMT science #1 (and the benefits of belly flopping)

INSTRUMENTS (#1)

Against all natural instincts, it appears that sometimes it is better to belly flop than dive...

I've been working on the manual pump idea for the bubble organ by making some mockups of the drawing in my last post (so have a look there if you don't get how it works).

It's pretty simple. The valve is made by some weights sealing a piece of rubber over the air intake holes. When you lift the handle, you lift the weights, so the air intake holes open.

The 1/2 inch pipes on the side of the bucket are just for guidance, otherwise it just flops around. They can easily be improved I think.

Here it is in action:

I then tried to make a more compact version, which is where I realized it is better to belly flop than dive. The compact version technically works, but it is just so aerodynamic that it plunges into the water too fast to be useful.

The wide brimmed bucket has lots of surface area, so like the belly flopper, sinks slowly, producing a long and steady stream of bubbles.

I like the fact this instrument is getting bigger and bigger!

CHARCOT MARIE TOOTH

CMT science #1:

I’m obviously not going to explain everything at once, so in the spirit of all good scientific explanations, let’s begin with an assumption and then I’ll try to explain it later in another post. The assumption is that people with CMT have a defect in one of their genes, specifically one that makes proteins within the peripheral nerves.
[There are also many types of CMT, so for the moment I’ll just explain type CMT1a, as it is both the most common and the type that I have].

Peripheral nerves provide a feedback loop between the brain and the rest of your body. They transmit action signals to your muscles to make things move; they transmit sensory signals back to your brain so it know what's happening in the world. Without them you can think a lot, but nothing will happen and you wouldn't know where you were.

If we imagine that the peripheral nerves are wires carrying signals, it makes sense that they need to be insulated (covered in plastic) for them to work, otherwise the signals travel too slowly or get lost.

This is the root of the problem for people with CMT1a.


For a nerve, the insulation is called myelin. The defective gene I mentioned causes this insulation to breakdown (demyelination). Then the signal traveling along the nerve wire (axon) gets lost.

CMT affects the hands and feet most, because they have the longest peripheral nerves (i.e. the longest wires), so the most chance of the signal being lost. The reality of this for me is that most affected muscles either don’t move when I want them to, or move/cramp much later; most affected sensory nerves send no feeling to the brain, or I feel them much later (I get this quite often when someone has trodden on my foot, strange to feel when the culprit has long left the scene)...

It's good to be involved

INSTRUMENTS (#1)

Revelations in the bubble organ world; I'm no longer in search of fish tank pumps.
I had been trying to figure the mechanics of making the organ work, before I started cutting and screwing; that proved to be a mistake. On reaching no certain conclusions with bubble production, I set about making a set of test pipes because I knew how to do that - consequently I made a lot of progress.

In discussion with my house-mate Sam, we concluded there was a fairly easy mathematical way to calculate the lengths. Then, wanting to get on with it, I ignored the mathematics and eye balled the sizing with the Skilsaw. I cut 4 pipes and miraculous thing occurred. They fell in tune to form a major triad and an octave. Even if that doesn't mean anything to you, listen to the video and you'll get it.

What's more, again by chance, the pipes tuning matches that of the 60Hz mains electricity in our house! So the pipes can be played along with any electrical item that hums... (unfortunately 60Hz is somewhere between an A# and a B).

Oh yes, the revelation.
On testing these pipes, I realized that the long gentle drones sound much better than the short notes, so the control of the bubbles can be fairly slow. On taking apart the fish tank pump and seeing the diaphragm, Sam and I realized a very simple solution. By cutting the bottom off of a bottle and attaching a pipe to the top, you can push the bottle into the water and bubbles come out the pipe. We drilled a hole in the side, which you can uncover to lift the bottle back up, cover the hole and push it back down. Simple.

As a musician generally only has two hands, we had to get more inventive to be able to operate many tubes at once by automating the system. Below is the sequence leading to would I hope will make the bubble organ brilliant...

This one involves pushing and a check valve, too much work.

This one has a handle with a weight on it that pivots. The weight pushes the bottle down, and the handle lifts up and down acting as a manual check valve.

The beautifully illustrated climax of this solution is below:

It is basically the same as covering the hole on the bottle and pushing down, except you let gravity do all the work. There is a weight that pushes down over the seal (like your finger covering the hole), the weight is also just heavy enough to make the bottle sink slowly into the water (like you pushing down), thus blowing bubbles out of the tube. The musician just needs to lift up the bottle when it gets to the bottom to set it going again. By lifting the handle, it opens the hole (like lifting your finger) and tadaaah, a system that works.

CHARCOT MARIE TOOTH

It's good to be involved.

Last year I went to a CMT support group for the first time. It was the first that I'd ever heard of, so I was intrigued as I had never met anyone with CMT before. I have to admit that generally I am very skeptical about support groups for a specific condition, perhaps because of betrayals in the media (such as Fight Club), perhaps with good cause. My general concern is that support groups bring together people who have time on their hands to worry about the same problem.

This is somewhat true of course, but a major turn off of approaching any organization is when you can't see yourself within its existing membership. I am writing this as an encouragement to get involved as it is the cliché that keeps the cliché. I.e. If people (like me) don't go, then people (like me) won't be there and be able to participate.

I was lucky to have found the San Mateo group (now in Los Altos) a group led by a very confident and proactive woman who now also serves on the national board of the CMTA, Elizabeth Ouellette.

As I sat down we did the ritual introductions around the room, and for the first time I not only knew the names of 20 people with CMT, but I could see who they were, what they looked like and what they thought. I was blown away by talking with a 70 year old man who's hands were just like mine, as was his walk; I had a glimpse of 20 ways this disease could pan out.

I have returned many times and my perspective and confidence around CMT has changed a lot. There have been presentations ranging from key CMTA figures (all the way up to their new CEO, David Hall) to specifically related medical practitioners. Although I have learnt a huge amount of technical knowledge, I'm surprised to admit that it is my emotional response to being there that is most remarkable.

Recently, that support group moved further South and another started up nearby in the East Bay, so I went along. I was informed that the 'support' groups had been renamed 'support and action' groups. It is a small sentiment, but the reasoning appealed to me, and here I am writing a blog and running this project. "If not you, then who?" is the CMTA's tag line on this. They are quite rightly pointing out that people with a problem should be the strongest advocates for trying to relieve it, the community should represent the community. The groups are obviously still trying to offer comfort and practical knowledge through discussion, yet their model is to find a synergy with direct action. Interestingly enough, this is where the CMTA started out.

This strategy is probably successful for the CMTA right know, because they are making great progress towards finding a cure, which results in a collective enthusiasm. However, this is all the more reason to get involved and make it happen.

I am thankful to Donna Rennie for starting the East Bay group in Walnut Creek and am sure that with her enthusiasm and all the people already involved, it will develop well. I guess this whole project is an action of that East Bay group, and will have some influence on how it forms, hopefully in a fresh and proactive manner (perhaps even a little artistic).

Invisible Condition

INSTRUMENTS (#1)

Oh the bubble organ. I have a feeling that this will be the hardest instrument; that first child, so many expectations.

I have a fully working design, at least in theory. The problem is that so far it isn't feasible as it involves getting 24 air pumps. The design is as follows:

You rig a pump up so that it is constantly blowing bubbles beneath a pipe.

Once you have that wonderful bubbling sound, all you have to do is make a mechanism to stop and start it.

The drawing above on the left shows my best solution. Half way along the tube connecting the pump and the bubbles is a 'T' joint that connects in another pipe (the control pipe). The air would much rather go out of that pipe than through the water. It does so until the control pipe is covered, at which point bubbles are made.

So, as the following video demonstrates, every time you put your finger over the hole, a bubble tone is made!

The other way that works well is to cover the end of the tube that is making the bubble sound. If you do, no sound comes out.

This is all well and good, but air pumps are expensive, especially good ones.

The following pictures show you some of our failed attempts at finding another air source...

1. Heating a copper pipe so that the air inside expands, leaves the pipe, thus making bubbles. This actually works, but only makes about 17 bubbles even if using a blow torch.

2. Attaching a computer fan to a pipe, thus making my own pump. This one didn't work at all, but it did prompt me to learn that my fish tank pump works by having a diaphragm and two check valves, (its here if your interested)

3. Candle power, I wish this one worked - a candle powered bubble organ would be too good, I could stop right there.

There is a tube under water that has a tiny hole in the top, so small that water tension won't allow the water to fall through. Then there is a candle underneath, heating the air so that it really wants to rise. It should then escape out through the hole and bubble. The reality is that it doesn't, and even if it did it would be pitiful.

But we tried!

4. Inner tubes. Inner tubes are easy to find, so I figured I'd pump one up and stick a hole in it. A tiny hole worked and would have blown bubbles for an hour or so, but it was very quiet.

A big hole sounded great, but lasted for maybe 20 seconds.

So I'm back to fish tank pumps because they are loud and last indefinitely, but I only have one...

Does anyone have any ideas how I can get some for free or any other ideas for making cheap pumps?

CHARCOT MARIE TOOTH

Invisible condition

For a long time, not only did I not think of myself as having a disability, I didn't know I had one. In fact I still struggle to even think of my condition that way, but given that I have just applied for a disabled parking permit, perhaps I should consider it.

I want to write a little about the strange balance of having a disability that is not really visible.

Many people (although due to this project it is a lot less) are unaware that I have CMT. On the surface that doesn't seem like a bad thing - that means to them I'm normal, right?

The problem is that there are many little day to day issues that are governed by my condition, that without disclosing my reason for acting a certain way, make me appear to be someone I'm not. I'm not at all shy about telling people I have CMT, but there will always be people that don't know and sometimes I can't be bothered to explain it.

This seems pretty abstract, but a really simple example of this is as follows: I ride a bike. I love it as it is fun and gives me freedom. However, I struggle to carry it up and down stairs when I arrive somewhere, so I take the elevator even just one floor. I feel that to the uninformed observer, that makes me somewhat of a contradiction; energetic enough to ride around, too lazy to walk up the stairs. Silly as this thought is, it's enough to make me sometimes navigate the stairs if I arrive at the same time as someone else, which doesn't do me any favors.

On top of this, the effect of CMT (for me, this is all personal - I'm no doctor) seems to be fairly variable. One day I can take a long walk around town, another I have trouble walking around the house. So that second day, in comparison to the first, I seem pretty lazy not wanting to get a glass of water from the kitchen.

Another classic case for me is appearing drunk when I'm not. I like to go out to bars, clubs etc. and do what you do at those places. The problem is that moving around the crowded room, I'm always the guy that stumbles, trips and spills drinks due to my lack of balance and ankle strength. I have no problem with being drunk if I am, but it is annoying to appear to be something you're not. This has become less of an issue with the purchase of some new fancy AFO's (Ankle Foot Orthotics), but they too have limitations particularly when it comes to dancing, and I do like to dance.

I've spent years perfecting a dance style that involves moving my body until I'm about to fall over, then saving my balance at the last second, crucially, in time to the music. The AFO's, with all their wonders of giving me new found stability, are messing with my dancing style!

Getting started & bubble organs

WOW! I'm over-whelmed at how people are getting behind me on this project, it is clear that it is going to be a much bigger deal than I imagined - I'm excited to ride the wave to try and steer this thing and get many people involved. I just raised my target from $3000 to $5000, I have to go for it, as I managed to raise $1840 in my first day of starting. Thank you all, I had better get started.

So the blog, where do I start?
[First the instruments, then the CMT]

INSTRUMENTS (#1)

I like fun projects and have been mulling over for a while how to create one that would also support CMT without loosing any of the fun. The plan for this project emerged fairly quickly from a few starting points.

- One is obviously a love of making music, plain and simple.
- A second was a realization at work. Work for me is somewhat different to many people as I'm an exhibit designer for museums. So I was busy researching how to make exciting and engaging sounds with water (a hard day's work), and I stumble across a bubble organ. An art/sound student called Aaron Wendell made it, it makes a ridiculous and brilliant sound, it's an instrument. My realization was that I too could make an instrument, which had previously eluded me.

Today I started my first instrument.
In honor of the inspiration it has to be a bubble organ, but there is definitely room for improvement, or at least exploration.

The concept is that you take a long tube, put one end in water and blow bubbles so that they go up the tube.

It produces a bubbling drone.
Changing the length of the tube, changes the pitch.
There you have it, basic science for a bubble organ.

The 2" PVC pipe was sounding best, particularly if it was nice and long. Never one for making things easy.

So we (working with my friends Sam & Nao) pretty quickly found an air pump, because blowing was too much work (you can see I soon went red). Then by adding a cone to the pipe we had a consistent and satisfying sound.

All we have to do now is have 24 of these at different lengths, and there's a bubble organ!?
Oh, and a way to control each tube.
Oh, and for cheap as 100% of all of your money goes to the CMTA.

No problem, please keep donating and I'll sort it out.

Anyone have any spare 2" PVC pipes in the Bay Area?

CHARCOT MARIE TOOTH

There are many difficulties, obstacles and frustrating things about living with CMT. Later, I'll try and explain some of these, but I am certainly not looking for a place to bemoan my ills. There is no doubt that CMT does strongly influence what I can and can't do in life - but I wanted to start (and stay) on a positive note. (I'm a genuine optimist and very happy for it)!

The fact that I'm choosing to do this project over running a marathon is a prime example of the point I want to make. CMT, because of its restrictions, has forced me to always look for creative solutions. An example, I love being outdoors but its hard moving around and tiring so I always rest. When I do I look around, talk, draw, sit, think - I do a lot of thinking. By not being physically able to do something makes me constantly question what I'm doing and pushes me into exploring new ideas in artistic ways.

You get the point. I don't like having CMT, but I'm happy with who I've become with it.