I almost certainly received transverse myeletis as a result of
contracting CMV - Cytomegolovirus, a relatively common virus
that most people get.  Unfortunately, it traveled into my spine,
and a combination of the virus and/or my immune system did the
damage at T-5.

There's not a lot to say about the initial stages.  At first,
there was confusion until I presented with obvious neuro
complications after a few weeks.  Then there was a delay in
seeing the neurologist, followed by much worsing symptoms and
a corresponding decreasing delay in getting help.

I was given a STAT MRI and the neurologist diagnosed TM
relatively quickly.  I was given rest in a lovely room with
round the clock help and a round of IV steriods, which arrested
the damage at that point.

The first week I spent in the hospital was strange.  I was
admitted on roughly September 7th, 2001, and so much changed
on the morning of the following Tuesday.

I guess 9/11 helped because it forced me to focus on what I
needed to do in the hospital and rehab and generally ignore
what was going on outside.

After the course of steriods finished, it was obvious that I
was not going to stay in the hospital, but also it was clear
that I was not ready to go home either.  Fortunately, someone
in hospital negotiated with the insurance company and I was
able to go to the rehab unit at Wilmington Hospital in Delaware.

At that point, I knew I had a decision to make - this was
going to be my chance to start getting my life back, so I was
determined to work as hard as possible there and get the most
out of it I could.

Fortunately, I worked with some very good students who were
overseen by top notch PTs and OTs. They made some decisions for me,
that at the time, seemed rather forceful since I was not consulted.
But, literally, what did I really know at that point?

For instance, I had made friends with a guy who as an accident
victim was left as a quadra-plegic.  He had hoped to be able to
develop the strength in his arms to use a lightweight manual
wheelchair.  However, he was unable to, and wanted to lend me
the chair.  This apparently caused a terrific disagreement between
my friend and the PTs and OTs.  They had determined I was going
to be discharged on my own two feet and had no intentions of
teaching me how to use a wheelchair.  Anyhow, I never got to
try to use the lightweight wheelchair.

I did actually have a rental wheelchair, which I used once on
a shopping trip, and was nearly run over in a parking lot by
a lady in a great hurry.  I waved to her after she went by.

My student PT probably only weighed 100lbs.  However, she asked
me about stairs, and so I told her we had them at home and work.
She decided, I guess, that stairs were not to be an issue for
me, and so she took me out to the concrete stairwell/fire escape
and had me work on those stairs.  There is a powerful motivating
factor to not fall when you are looked at steel-lipped concrete
stairs, I can tell you.  Stairs have never been a fear since.
Very annoying for quite some time, but they never limited where
I could go because I was afraid of them.

That's a big factor.  Once I was home, I think we spent most
of next several months largely upstairs.  Stairs were still
hard physically.  Mentally, they were never a barrier.
Mental barriers are much higher than physical barriers, I think.

I was discharged with enough knowlege and special little tools
from the OT department that I was able to function in the house.
A little basket for the front of my walker so I could move my
lunch around.  A little gripper picker upper thing so I could
get things I needed.  A special handle for the tub so I could
safely sit on the shower chair and shower when I wanted.

I started with a PT group, chosen by the insurance company, as
soon as I was home.  Looking back on it, it is so hard to say
if that was the right place.  As it turns out, I was largely
supervised by aides, not PTAs and certainly not the PT who was
busy doing initial evaluations.  But I don't know if it would
have made a difference.

When you lose control of certain muscles and have to accomplish a
task, and are motivated enough to do so, you will accomplish it.
However, you end up using the wrong muscles - the ones that
already work - to do the task.  This is the part where someone
with more experience might have helped.  Or maybe it would
have made no difference because those muscles just weren't well
enough connected yet.

At some point along this time, a friend decided that the hype
over drinking beer with Baclofen was probably overrated.  He was
right - you can drink beer - a great deal if you want to, while
taking high doses of Baclofen.  It's so hard to tell if Baclofen
even makes a difference after a while.

In late November, we saw someone with a four wheel walker with
brakes and a seat.  That seemed like a great idea.  I could
carry stuff, steer the walker better, and generally walk in a
better position.  The local home medical equipment company had
one, and I have to say that made a terrific difference.  I still
use it if I have to move something heavy.

Around this time, we started to use the internet as a resource
(duh!  It's not like I hadn't been involved with the internet
since its inception) and discovered the Transverse Myeletis clinic
at Johns Hopkins.  An appointment in December confirmed TM, most
likely caused by CMV.  Chitra gave me a word test, I remember,
that cracked her and my wife Bonnie up.  I was tired and stressed
I suppose, and kept missing obvious words and comming up with
strange words.  I don't remember the details...just the laughter!

That appointment with Dr. Kerr and Chitra was tremendously helpful.
I was probably suffering or had suffered the depression associated
with TM, but this appointment really changed my outlook a great
deal.

On January 2nd, 2002, I returned to work after being off for 5
months, as a systems programmer at the University of Delaware.
I receive wonderful support there.  However, one of the two health
care plans we have access to has a bad physical therapy coverage
plan, and eventually coverage was denied.

What to do...hmmm...hey, we *have* *a* PT program.  Low and
behold, we have a clinic, too.  So, even though insurance was
being annoying, a deal was worked out and I started with the
University of Delaware clinic.

We did a great deal of work there.  Some basic training for
walking, strength training, and E-stim.  A graduate student,
Scott Stackhouse, who already had a PT license was interested
in persuing suspended bodyweight treadmill training with me,
and the upstairs teaching room had the necessary equipment.
After I finished a round of "Russian stim quad strengthening" -
where you learn to love electricity flowing through your body -
we started on the treadmill.

That worked well.  We started at something like 1.0 or 1.1mph and
eventually got up to 1.8mph, I believe.  Part of time, I think
we concentrated on not getting Scott hurt.  Any therapist who has
ever worked with BWSTT knows what I mean.  However, true walking
without assistive devices was still a ways away.

At this point, we ran out of ideas.  I was asked to go back to
Dr. Kerr for further advice, but I was truely afraid I would
be told "well, that's all you can expect", so I didn't make
the appointment.  That wasn't the best idea because it left my
therapist with no ideas, and so I was discharged with a home
expercise program.  Much later, I realized my mistake, made
the appointment, and I can assure you that Dr. Kerr didn't say
"well, that's all you can expect".

I stuck with the home exercise program, eventually injured myself,
consulted WebMD since it was the weekend - who *really* wants
to go to the ER unless you have to, and discovered that although
it really hurts, a pulled hip flexor will not kill you or likely
leave you permanently injured.  So, I took diazapan and waited
until Monday.

The PA I saw knew pretty quickly what I had done and referred me
to a physical theraply clinic that had opened after my first go
round with PT.

There, I met a wonderful therapist named Chris Brinton.
Fixing the pulled muscle was pretty easy.  Some deep massage and
some stretches.  I asked Chris if he would like to work with
me in the future, and we worked together for at least a year,
probably longer.

We had no way to work on BWSTT, but we came up with a way to tie
Theracords so I could walk on a treadmill.  Eventually, my speed
increased to 2.4mph, with the bands, and holding on.  But still,
that was fast.  Here again, trust in your therapist is crucial.
We worked on standing on rocker boards, walking sideways while
pulling weighted cables; all sorts of things.

Working with Chris at Pro-PT was a tremendous experience.
Around last December, a co-worker gave me a flyer.  The UofD
clinic had expanded and opened the "Neurologic and Older Adult
Physical Therapy Clinic".  Well, I didn't like the older adult
part, but the rest sounded good.  So, I planned to split my time
between Pro-PT and the new clinic at the UofD.

Unfortunately, the insurance company decided that spending about
$5,000/year on me wasn't as good as an investment as taking a
chance that I might weaken and break a hip or something during
a fall, so they started getting really ugly with the claims.

Fortunately, I can write, and I've always worked hard for my
thereapists, and Dr. Kerr writes great clinic notes, so getting
the medical staff to agree to further treatment wasn't hard.
However, there is an administrator in the company that just
plain doesn't agree.  So, while I got them to agree to cover
Delaware, I decided to not push it with two different clinics.
As we say in the computer business - "I don't want their heads to
explode" trying to reconcile two different treatment programs.

Never minding that communucations between the two programs
would have been easy.  Chris and the director of the program
at Delaware, Cathy know each other solicially, Chris sometimes
does clinics at Delaware, etc.  The world of well trained PTs
is small around Delaware - I think they all know each other.

Backing up a bit.  In the winter of 2004, I was doing better.
I could walk with so-called Lofstrands on paths and the like
pretty well, so we went to the CCI FairHill International Three
Day Horse Trials event at Fair Hill in Cecil County.  I walked
past a booth with a banner that said "Freedom Hills Therapeutic
Riding Program".  I talked to the vet who was manning the booth
for a while, and thought "this sounds cool, but I'm not going
riding in the winter!".  So, I waited til around April 2005,
couldn't find the brochure, almost went to another program,
and then found it at the last moment.

I had talked to Chris about therapeutic riding - I wanted to
make sure this would be a useful therapy, but he assured me
it would be very good for me.  I also spoke to my PA about it,
and it turns out she both thought it would be great, and she is
also a rider and familiar with the program.  She encouraged me
and filled out the necessary waiver.

What a strange concept...not able to walk unless using crutches,
but yet get on a horse.  Well, the process starts out carefully.
First, you have people walking on each side of you making sure you
don't fall off, and a person leading the horse.  No danger there.

And, then slowly but surely, over the weeks, if you are lucky,
the people leave you.  First, they just walk along side without
holding you, and then, poof, they just aren't there any more.
And, someday the leader says "hey, want to go by yourself".
Following my philosophy of always doing what is asked, I say
"sure", and off I go on a pony bred to carry Vikings.  She's a
tough little thing, and doesn't always want to go where you
want to go.  Is it me not telling her correctly, or is she not
listening.  Probably both at different times.

And then one day I come to the barn, and the pony Nina isn't
available for one reason or another, and it's not like I can
ride the small ponies, so up on horse I go.  First, I rode
Kate, a nice thoroughbred who liked to go really fast.  I had
to learn to control her in a big way.

And then one day, a kind lady donated a Quarter Horse named Ziggy
who I usually ride.  I'm not convinced he likes me, or any human
for that matter, but he does like going riding for sure.

Technically, I usually do therapeutic riding, which basically
means horseback riding within whatever limits you personally
have.  Hippotherapy is a set of specific exercises done on
horseback by a PT, OT or speach pathologist.  I've occasionally
done hippotherapy, and if it would benefit you, I highly
recommend it.

However, I personally just prefer plain old riding. I've gotten
to the point where I can do a rising trot.  I can see from
the video that it's not always in time, but I'm getting there.
I'm willing to work on cantering, but currently I have too much
tone to fully relax and ride with the horse's motion.  We have a
trick to try that might help with that, though.  I've done some
little jumps with Ziggy, and will almost certainly increase in
height over time.

And trail riding is just plain wonderful.  It's great to get out
into open spaces and just move.

Without the wonderful help of all of the folks at Freedom
Hills, particularly Renee Sherrard-Luther, I wouldn't have
this experience.  By the way, riding is also something I can
do with my daughter, Annie.  We often ride in the same lesson
together, which has been great fun.

And finally, I'd like to thank my wonderful wife Bonnie, Without
her help and support, I'd not like to think where I would have
ended up.