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.

Funky or Vanilla?

I have the pleasure of introducing instrument maker #7, Will Longstreth, who brings an expertise in bikes to the project (and all the mechanics that go along with them). Will has chosen to take the cryptic approach to blogging. An equation in pictures definitely has me intrigued as to where he's heading, all I know is that it sure looks pretty! (Tim)


INSTRUMENTS

Bicycle Music Box?
post by Will Longstreth

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...?

CHARCOT MARIE TOOTH

Funky or Vanilla?
post by Nicole Burggraaf

In a few weeks, I’m being casted for my new AFOs. The docs are hoping that wearing
AFOs during the day at work will buy me a bit of extra stamina at the end of the day.
A bit of extra energy to help my husband prepare supper (much to his chagrin as my
specialty does not expand beyond Hamburger Helper), play with our son and be able to
stay awake beyond 9PM.

I have not had AFOs since the sixth grade. My experience with them was short. I did not
think they were much of help – but in hindsight I think that was the vanity of being 12
had a lot to do with my reluctance.

A few months ago, our 4 year old son (and fellow CMTer) was casted for his first pair of
AFOs. The design of the AFO has not changed in the twenty years since my first pair.
They are still pretty much reverse shin pads that extend down over the foot. But what has
changed is that AFOs can be customized to become one of a kind. There is a catalogue
of funky prints that can be placed over the AFO and an assortment of colours for the
velcro straps. Gone are the days of the vanilla white AFOs and bright white velcro
straps.

Our son chose a kid-appealing print of cars and trucks over a blue background. He
also chose black straps to compliment the tires on the trucks. When we returned
to the orthotist a few weeks later to pick up his AFOs, our son was so thrilled
with them that he threw a fist pump into the air and a resounding “YES! Cool!”

I’ve spent the past few weeks debating whether or not to stick to the plain Jane vanilla
coloured splints or choose a bright colourful design. (I should also note that our son
is petrified I’ll choose the car and truck pattern. Already at 4 he recognizes having the
same taste as his Mommy is SO-NOT-COOL!)

I’ve kept the CMT part of myself pretty low-key to the public at large. I walk with a
limp that I think most people assume is just a nagging injury. My surgical scars are well
healed and not very visible. The only time people really quiz me is when I’m using my
cane in the winter months.

Its not as thought I’m ashamed of my CMT that I feel I must closet it. But I always
fear that if I go on to much about it, people will think I’m belly aching. And I always
think about the boys with Duchenne’s at my neuromuscular clinic visits when I
was a kid. CMT – at least how it affects me – is so lightweight in comparison.

And here lies my dilemma. Which is less likely to scream “Look at me y’all, I’m
DISABLED” and more likely to give off a vibe of “My legs need some extra help, but its
cool.” The funky AFO or the vanilla AFO?