Unusual Woman. Unusual Life.

The Willawoman's Blog

Living with a Disability.
Living with, working and training Wheelchair Service Dogs.
Living.
 

Last updated: April 16, 2008

The WillaWoman's Q&A

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  • What's this blog all about?

It's about me, The WillaWoman, and my life as it relates to being disabled and working/training my Service Dogs.  I try to write and include articles and photos that are disability related and dog related. 

I started this blog as a way to educate able-bodied folks as to how life is for someone who is disabled.  I also want to get as much information out there as it relates to Service Dogs.


  • How should I read your blog?

This blog consists of a main page and archives. 

The main page has 3 columns:

  • The middle column holds up to 31 articles in reverse-chronological order. 
  • The left column contains some different smaller sections.  It has: information on each of my dogs (just click their name), a search feature, a list of the 30 previous posts, the monthly archives, links to The WillaWoman's and Rosetta Stone's music and links to The WillaWoman's films. 
  • The right column contains links to purchase my available albums.
If you are a new reader, I would suggest you start with the Archives and try reading them chronologically.  If you are a long-time reader (thank you!), I try to write a new article every weekday.

  • What's wrong with you?

I have Moderately Progressive Axonal Motor Neuropathy. Basically it means I don't walk so good!

The way my Axonal Motor Neuropathy has been described to me is like this:
  • It's effecting the longest nerves in the body first (hence, the legs).
  • The nerves that have "died" are calcifying, so there's no hope of regenerating the ones that are dead.
  • The reason my legs fatigue so quickly (but still test at normal strength levels) is because the nerves are actually getting tired. If some of the nerves for one muscle have died, that muscle will attempt to get nerve impulses from the nearest working nerves. So those working nerves are working overtime and they get tired. That's what makes my legs feel tired.
  • Because my neuropathy is effecting the longest nerves in my body, it's now attacking the nerves that control my diaphram. The diaphram is actually controlled by very long nerves coming from the cervical part of the spine. As a result, I get out of breath very easily.

  • When did you first start getting sick?

My symptoms started when I was 29 (I was born in 1961). I had unexplained fatigue in my legs along with terrible nerve pain (picture a knife stabbing your calves and multiply by 10). The leg fatigue would be so bad that it would make my entire body tired too. I had to leave my job with IBM because the bastard docs there did not believe my neurologist when he said I could only work 1/2 days. Bastards. Can't say too much bad about IBM since the hubby still works there, but The Bastards.

Over the years, my symptoms progressed and the doctors were perplexed. They couldn't figure out what was wrong with me. After seeing rheumatologists, vascular doctors and podiatrists, I finally saw my first neurologist. He diagnosed me with possible RSD (Reflex Sympathetic Dystrophy) and gave me my first anti-depressant prescription. Even though he was one of the few doctors who didn't say "it's all in your head", he did recognize the symptoms of depression... which any sane person would have if they were sick and undiagnosed. Very depressing.

Because of IBM restructuring, we had to move to Vermont.  Once there, I found a neurologist who performed my first (and not to be my last) EMG (Electromyography) Nerve Conduction test. Picture long needles inserted into a leg muscle, long enough to reach a nerve. Then picture that needle having pulses of electricity flowing through it. Torture. You can actually "hear" the nerve working on a little speaker on the EMG machine. Very Painful.

That neurologist and subsequent neurologists initially wrongly diagnosed me with Peripheral Neuropathy. A weird diagnosis considering that my problem was always described (by me) as "my legs feel like I've run a marathon when I've only walked from my couch to the bathroom and back". There was obviously something wrong with the muscles and how they worked, not with my peripheral nerves (which are mainly sensory nerves)

Last year I was finally diagnosed with Moderately Progressive Axonal Motor Neuropathy. I finally have a name for what's wrong with me, but doctors still don't know what's causing it.  They have narrowed it down though, so most likely I have a variant of Charcot-Marie Tooth disorder.   So far, only 23 variants of CMT have genetic tests developed for them, so for me I have to wait for them to develop more tests and discover more chromosomes.  So now it's a waiting game.

  • When did you get your first dog?

My first dog was JoJo.  We got her when we moved into our first house in 1987.  Here's her story.

Our next dog was Barney. We got him to be a companion for JoJo because, before she became my Service Dog, she had terrible separation anxiety. We thought getting another dog would help. It didn't. Here's Barney's story.

Our third dog was Willie. He became my second Service Dog. Here's Willie's story.

Our fourth dog was Frankie. He is now my third Service Dog. Here's Frankie's story.


  • Did you have dogs when you were young?
Yep, we had a miniature schnauzer named Pepper.  He was the "golden dog".

  • How did you learn to train dogs?
I first took JoJo to a Beginner Obedience class when she was 10 months old.  It opened my eyes to a whole new world of dog training and I loved it.  Eventually, we also took an Advanced Obedience class.  It was there I learned how to train a dog to heel off-leash.  This was a huge accomplishment.
 
The hubby would attend these classes and learn along with me.  He also took Barney to his first Beginner Obedience class.
 
After I started getting sick, I could no longer "walk" with my dogs.  The trainer that assisted us in training JoJo as my first Service Dog taught me how to train a dog from my wheelchair.
 
When Willie was donated to me by Lori Dodd, she became my mentor.  It was through her that I learned more about pack dynamics and how I could use that knowledge to better train my dogs.

  • Why do you train your own Service Dogs instead of getting one from an organization?
Organizations have very long waiting-lists, sometimes up to 2 years.  They also have limiting (for me) restrictions.  Some organizations will not provide a dog to someone who already has dogs in the house.  Even if the only other dog you have is your retired Service Dog, they will not give you one of their dogs.
 
I would rather train my own dogs because I can.  And because I feel that those organization dogs are better suited for those who cannot train their own.

  • How did you meet your husband?

The hubby and I met when I was 17 and he was 24.  I was playing in my first band Knuckle Deep in NY and he came over to audition on bass.  We hired him.  He told me he liked my long blonde hair.  I told him I didn't like beards.  He shaved it off for the next band practice.  That's love.

We were just friends for years.  We didn't get married until I was 24.

  • What's your musical background?
I learned to play guitar and piano as a kid.  I took piano lessons for a while, but for some reason the ability to read music never seemed to implant in my brain.  I'm more of an improviser and I can learn music "from the record".  I taught myself to play guitar, but my mom was a big influence with that.
 
When I was 17 and still in high school, I joined a band called Knuckle Deep.  We played folk and rock cover tunes.  In my mid-20's, I joined a band called Rosetta Stone.  We played rock, metal and progressive rock cover tunes.  We recorded an album of our own material called "The Discovery".  After moving to Vermont, I formed a duo called Tempo Tantrum.  We played folk and rock acoustic cover tunes.
 
Here in Texas, I focus primarily on recording and writing in my "studio".  Playing out in a band is no longer an option.

  • What's your educational/work background?
I have a BS in Computer Science with a Mathematics minor.  I worked for IBM as an Associate Programmer for 6 years.

  • How should I act around you?
Just treat me like any other human being, but realize my limitations.  In fact, here's some tips on having someone like me as a friend.

  • What do you do to keep busy?

I work on my computer, write music, work on film projects, watch TV, play video games, talk with friends and family, play with my dogs and take them for long walks with my scooter.  I also keep reptiles and enjoy learning more abou them.

I like to keep learning and try to keep up-do-date with computer and internet stuff.  I'm also learning more about film production and editing. 

My main goal is to just keep learning and to keep my brain active.

 
 
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