After my accident in 1999, I was taken by helicopter from Cody, Wyoming, to St. Vincent’s Hospital in Billings, Montana, for surgery and rehabilitation before heading home to a hospital in Indianapolis for additional rehabilitation. While my time in Billings was amazing, unfortunately, my stay in Indy was a bit of a nightmare. With this bad taste in my mouth for rehab hospitals, I spent the next decade avoiding specialty doctors and therapists like the plague.
After Russ and I moved back to Cody in 2007, I established
with a primary physician, and over the next few years, we took an occasional
drive up to Billings to meet with a specialist. For the most part, I was a
minimalist when it came to therapy or new medical equipment. I had been making
things up up to that point and was doing quite well as a wheelchair user, even
if some routines and techniques were not exactly par for the course.
There is a large community of disabled individuals in Cody,
and more than one mentioned to me in passing that Craig Hospital in Englewood,
Colorado, was a special place. Besides being one of the leading SCI and TBI
rehab hospitals in the country, they have an outpatient evaluation program that
allows patients the opportunity to spend one week living in an accessible facility
while going to appointments with doctors, therapists, and other medical staff.
This team approach with people who specialize in injuries like mine was very
appealing to me, and I started doing more research as well as checking with my insurance
company to see what something like this would cost.
Last year, after a speaking event in Cheyenne, Wyoming, Russ
and I traveled over to Craig to tour the hospital and learn more about the
outpatient program. Even under heavy construction and spatial growth, we could
see that this hospital was special in its approach to individuals in
wheelchairs. And they sported some pretty high-tech equipment and fun toys in
their therapy gym. I was beyond intrigued and scheduled my week for my
outpatient evaluation.
Russ and I arrived at Craig on Sunday. We checked in to the
family and patient housing next to the hospital and were pleasantly surprised
to find that our room was actually a small loft-like apartment, complete with
kitchen, dining table, and living area. It was also the most accessible hotel
room we had ever seen- whoever designed these rooms needs to advise other
hotels on what accessible really means! Unpacking there was a great start to
the week.
Monday morning dawned warm and sunny, and we headed to the main
entrance of Craig and down to the Outpatient Clinic where I checked in. After
an initial appointment to review medications and get blood drawn for lab work,
we met with the social worker to review insurance, my social and living status,
and any other questions we had to start the week. I followed that with a
session with the psychologist for a great check-in to see how I was coping with
living life in a wheelchair. Next up was a history and physical with the nurse
practitioner and a quick visit with the doctor before setting up my schedule
for the rest of the week. We went back to our room to crash for a while before
driving to the local grocery store to stock up for the rest of our time at
Craig. We got back in time to unload the food before attending a family dinner
event outside the housing complex.
We met several other patients and their families, both outpatient
and inpatient. One couple from Ohio had been coming to Craig every year for
almost thirty years for the outpatient program following her car accident in
1986. We met another couple from Montana- the wife was staying at the family
housing complex while her husband recovered on the inpatient floor after an
accident just over a month ago. We heard nothing but positive things from the
people there. The general consensus seemed to be that Craig Hospital was the
place to be if you had a spinal cord injury, whether it was a new or old
injury.
First thing Tuesday morning I had a cystoscopy to scan my
bladder- such a great way to start the day! :) After that, I attended my first physical therapy
session of the week. Since I was a first-time patient, they performed several
assessments to establish a baseline in my function and strength to use for
comparison during future evaluations. Starting at the top of your body, the
therapist tests your motor function and sensation level by touching your skin
with a cotton swab and a sharp pin to test light touch and pain recognition. The
American Spinal Cord Injury Association (ASIA) scale helps doctors better
understand your injury level, and my exam showed that my injury is complete (A),
which basically means I have no function below my level of injury. My sensation
level stops at the T-12 vertebra, which is the twelfth piece of the spinal
column in the thoracic region. If you find your last rib and follow it around
to where it connects to your spine, you have found your T-12 vertebra. The physical therapists also tested different muscles in
my upper body, and I was happy to find out I have great upper body strength
relative to my SCI. After not having any exams in over ten years, it was
reassuring to know that I am maintaining my strength above the normal level of
people with my type of injury. We also started talking about my wheelchair and
what changes I wanted, as well as any other goals I had for PT for the week.
I also met with one of the nurses for a nursing evaluation,
which basically covered bowel, bladder, and skin. I have been fortunate that
these categories have stayed fairly stable over the years, but I have had some
trouble since my gallbladder was removed in 2013, so we scheduled an x-ray to make
sure my GI tract was functioning properly without any blockages.
My next session was with the occupational therapists. These
ladies ran similar tests for function and strength, specifically focusing on my
hands and shoulders/neck. One of my goals for the week was to find specific
exercises to tone my upper arms, shoulders, and core muscles, so we also went
to the gym to go over my options. Once again, I found out that my muscle tone,
grip, and strength are great, which was very encouraging.
I was lucky enough to begin Wednesday morning with a renal
ultrasound to check my kidney function. :) Gotta’ love those first-thing-in-the-morning
procedures. The rest of the day was filled with PT, OT, and recreational
therapy sessions. I had a few issues with my chair, including my back rest, my
cushion, and my foot plate. My current sling back backrest doesn’t offer a lot
of support and actually discourages proper posture, which is something I
struggle with anyway. The therapists took my wheelchair apart and started
playing Frankenstein with different back rests, cushions, and foam wedges to
reposition and restructure my current sitting situation. My legs are incredibly
long, and getting a proper fit in my wheelchair can be difficult. Fortunately,
the folks at Craig really know their stuff when it comes to fit in a chair, and
before long, we were getting the results I wanted. My knees were repositioned
so that they are closer together, which is great for wearing skirts. My
in-turned right ankle was also readjusted and encouraged to sit straight on my
foot rest. I began to really like the trial back rest and adjustments to my
cushion, and by the end of the week, we had an order ready to go for a new back
rest to put on my current wheelchair, as well as plan to order a new wheelchair
when needed with all new specifications and a much better fit.
Recreational therapy was a great appointment, and I learned
more about Craig’s adapted scuba diving clinic, which I will hopefully be
returning to participate in. I also picked the therapist's brain about grant
possibilities to assist with funding adaptive recreational equipment, which is
usually quite expensive and not covered by insurance companies.
Thursday was my last day of scheduled appointments, and we
started with my outpatient conference, which is a team meeting with everyone
you have worked with to summarize their findings from the week of evaluations.
It went well and I left with some amazing education and resources for returning
home and continuing my adapted life.
The rest of Thursday was filled with three more PT sessions.
We finished wheelchair adjustments and discussed different surfacing options
for my hard, tile shower bench and toilet seat back home to protect my skin. We
also talked about different options for saddle pads and cushioning for horseback
riding, which is definitely on my bucket list. And then the fun began. One of
the things that had drawn me to Craig was that they are using some of the
leading edge technology for people with SCIs. They have exoskeletons, track
systems, and other machines that get you upright and essentially walking again.
Unfortunately, due to my lack of standing in the last 15+ years, my bone
density was not conducive to standing at this point. Nothing worse than
standing up and fracturing your legs, even when you can’t feel it! :) I
will be getting a bone density scan soon to see if there is anything we can do
to fix the problem to allow me to try some of these new therapies.
Instead, we played with something called the FreeWheel,
which is an attachment to the front of your manual wheelchair that lifts your
small, front castors off of the ground and uses a larger, single wheel to
better maneuver through rough terrain. It was awesome! Craig has an outdoor garden
that allows you test your chair on different surfaces, including large river
rocks, gravel, wood chips, etc. The FreeWheel handled everything so smoothly
and with minimal effort. It also comes with the option of adding a rack to the
front to carry luggage, grocery bags, etc., which would be incredibly helpful
in my daily, personal life as well as my professional life as I travel and
speak, not to mention living and playing in rugged Wyoming. We will definitely be
looking in to getting a FreeWheel.
Finally, one of my last PT goals for the week was learning
how to better hold and control a wheelie. You would think someone who had been
in a wheelchair for almost sixteen years would have this skill, but
unfortunately, it was not something I was taught in therapy in Indy all of
those years ago. We quickly discovered that part of the problem was that my
wheel axels were very far back on my chair, which affected my center of
gravity. I was shocked by the difference it made when we moved the wheels
forward by an inch- my center of gravity was completely different and it was
much easier to start and hold a wheelie. After a few minutes of instruction, we
went through the process of holding a wheelie, moving forward in a wheelie, and
spinning around in a circle while in a wheelie. Next, we worked on holding a
wheelie while going down a ramp, as well as going up and down curbs. I haven’t had
that much fun in a hospital in a long time! It was empowering and encouraging
and such a rush, knowing that learning that skill will just add to my
independence and pursuit of an active, adapted life. The session was over way
too quickly, but I now have the confidence and excitement to continue
practicing and perfecting this new skill.
We finished the week with a session with the dietician. Russ
and I were both looking for some new ideas about eating well and maintaining a
healthy lifestyle, and the appointment did not disappoint. We left on such a
high from a truly life-changing week.
If you are someone living with a SCI or TBI, I highly
recommend Craig Hospital’s Outpatient Evaluation Program. My insurance company covered
my entire stay and all of my appointments, so call your provider and see what
your options are. Our only cost was the lodging fee, which is about half of
what it would cost to stay in a hotel off campus. As someone who would be
considered a “veteran wheelchair user,” I learned so much and was definitely inspired
to push myself even farther that I have been accustomed to. I can’t wait to implement all of these positive changes, and I am already looking
forward to my next visit to Craig!
For more information on Craig's SCI Outpatient Program, visit: https://craighospital.org/programs/outpatient-clinic/sci-outpatient-program
