They Call Me Galvez

I think I’m gonna end up breaking my mobility scooter… just a hunch…  I don’t think it was built to go over speed bumps. It seems like it stalls every time I hit a bump. I may need to tone it down a little more… the simple act of crossing the street is always an adventure… maneuvering to push the crosswalk button, lining up to hit the curb at the correct angle, making sure I’m aware of traffic that is turning, praying I don’t stall in the middle of a busy street… sheesh… stuff that was routine is now a concentrated effort! Maybe I just need to get out more often… I’m really “jumpy” or really sensitive to everything… this must be what newly paroled prisoners must feel like… sensory overload!

Anyways, I love being able to go out whenever I want, but it seems like there are less people to hang out with… the people I used to hangout with 5 years ago are still around, but they all have real responsibilities now. I can get out more, but it’s much harder to find people to hangout with. This was going to happen regardless of surgery, but it’s all hitting me at once. I actually went to the movies for the first time by myself and it was great being on my own! It was a little weird, but I could get used to it. I was not embarrassed at all being by myself at the movies. Gone are the days of calling someone up on the same day to see if they want to do something. Everything requires planning in advance. This is yet another thing I gotta adjust to… re-integrating myself socially is a whole different type of rehab…  it’s something I’ve been neglecting, but I’m more aware of it now. My friends have been great thus far, but I feel like it’s time to take the initiative and start doing things alone… people realize this on their own… health care professionals can only provide them with resources… you can’t force somebody to re-integrate themselves. I can definitely see where patients need help figuring stuff out, but it is ultimately up to a patient to know when they are ready. I am amazed at how much the little things in life were taken for granted.  Sadly, sometimes you don’t realize something had been missing, till you find it again. I’m talking it all in, but damn there is still a lot of of things to figure out!  Being out and about has made me more aware of things… after identifying and isolating impairments, it is just a matter of addressing those impairments…

Had such a fun weekend. I took the train up to LA  again but this time I used the crutches and a mobility scooter. That little scooter has opened up the world for me. I can finally keep up with my friends when we go out. I don’t feel like I’m holding everyone up anymore. Sure, I can’t go everywhere, but I don’t feel like burden to my friends when I’m out and about. I do get some weird looks from people though. I think people are used to seeing older people in mobility scooters, so when they see me they probably think I’m screwing around. (OK, maybe I’ll stop chasing pidgins and trying to run them over!) Actually, I really don’t care what people think.  So if people stare, they stare… I not gonna waste energy worrying about what people think of me
I met up with one of my friends from college and we went sight seeing in LA. Thursday we went to the Dresden restaurant from the movie Swingers, then went to Griffith Observatory. Griffith Observatory is one of my favorite places in LA.  It satisfies the science geek in me while eliciting my inner Rico Suave. (I say this because this is where Kelly and Dillon had their first kiss on 90210… don’t ask why I know that.)  On Friday we met up with another friend in Redondo Beach and hung out in Hollywood. I got to take the scooter out on the famous Hollywood Walk of Fame! In the Hollywood and Highland Mall, I even let my friends take turns riding the scooter… So funny!  When I get together with some of my friends you can bet we are up to no good… I called them my “pit crew” because they got really quick disassembling the scooter to transfer it in/out of the car. My friend tricked us into going to a restaurant that served insects as an appetizer. We ended up eating crickets, but I passed on the scorpion. Crunchy with very little flavor.  Later that night we met up with some friends at a bar in Santa Monica. Saturday we toured the Redondo Beach Pier. My friends walked, I rocked my scooter. Definitely pushed the limits on the scooter. Found out it doesn’t run well on hills, bumpy ground, or grass. Oh well, at least I can get around faster now! Been to the bar twice already on my own to watch basketball! I’m doing my own “experiments” with ETOH and walking/ scooter driving.  No seriously, I’m looking at the effect of ETOH on ataxia.  Results are inconclusive so far because functionally I’m safe, but I haven’t found any quantitative peer reviewed measures for ataxia yet.  “It’s all in the name of science”  I gotta try going to a movie next. Anyways, at the wedding I had 3 glasses of wine and a beer and was successful walking with the crutches with no falls…”It’s all in the name of science”… HAHAHA!  A “whole new world” is starting to open up!  I’m getting much more comfortable with the crutches… I still think walking then running is not too far away but for now the “scoot-scoot” will have to be a means for me to get around for long distances most efficiently.

Wow!  Things are already starting to pick up!  I am putting the finishing touches on my Fall schedule.  I’m going to a MD Anderson Conference in Houston to speak on a patient panel, rehab grand rounds at RUSH hospital in Chicago, Texas again for the LiveSTRONG Young Adult Alliance Conference, and hopefully something at University of Michigan Hospital.

I’m getting more comfortable with the crutches, but I am nowhere near fast enough to walk across a busy intersection.  I know in time I will get faster, but I’m faced with the dilemma of speed for community mobility.  I will continue to work on my community mobility speed, but I am still stuck with the fact that I cannot go out by myself.  I think I have found a way to address that… a mobility scooter.  You know, those scooters you see older people riding.  Unfortunately, insurance won’t cover it because I am independent in the home.  I need something that will make me independent in the community.  Crutches or a walker won’t cut it for me going out and about.  A mobility scooter seems like a good solution because walking with the crutches or a walker requires a lot of energy.  By the time I get somewhere, I am pooped!  I understand why insurance only pay for medically necessary equipment in order to establish independence at home, but jeez, in many cases equipment is necessary to establish independence in the community.  I’m very lucky to have a great network of family and friends with mobility, but a scooter will let me go where I want to go without someone having to stand close by if I lose my balance.  As a PT, I have seen how some patients become dependent on the scooter for all mobility.  I promised myself not to fall into that trap.  I got my hands on a scooter and went out by myself in public for the first time in over 4 years!  I live very close to a shopping mall.  I never used to go  to the mall before, but I’m very confident I’ll be doing that more often!  Gotta try it at night one of these days… I’ll still work my butt of trying to walk and run, but for now the “scoot-scoot” will have to do.  Eric Galvez, call-sign “mAssKicker1″.  I’ll be calling San Diego mall booths requesting permission for “flybys”… HAHAHA!

This song by The Clash has been in my head the past week. Reminded me of this funny video. The Carlsbad 5000 is a race that has a special place in my heart.  It is one of the largest 5K races in the US and consistently draws elite runners because it is a flat/fast course. In fact many world records have been set there! In 2005, at the 20th Anniversary Race I set my personal record for a 5K and ran a scorching 20:47.  I earned my first long distance medal there for finishing in the top 250 out of ~1000 people in my age group (20-29.)  I’ve always been a sprinter.  I was the little guy who used his quickness in all competition.  I never thought I would like distance/endurance racing.  After the race in 2005, I remember thinking, “Hey, That was kinda cool.  I can only get better.”  Months later I was diagnosed with a brain tumor, which prevented me from enjoying most of the athletic hobbies that used to define me.  I am very lucky to be alive and am now learning new hobbies, but I still yearn for the physical activities I used to enjoy.

Three years ago, I returned to the Carlsbad 5000 with the mission to simply finish the race.  It took me almost three hours with the help of my brother and friends to walk the 5 kilometers (or 3.1 miles).  Two years ago, I returned to walk again with the help of my friends in honor of an online friend lost to brain cancer.  We finished the race in a little over two hours.  Last year, I was out of town for the race.  This year was the 25th Anniversary race.  I wanted to walk for all the brain tumor patients and young adult cancer survivors I’ve met in the past 4 years.  There was no way I was going to miss this race.  A few of my friends agreed to walk with me this year!  I created a team, with the help of the Challenge Center, an awesome nonprofit organization that provides skilled physical therapy and fitness to patients with neurological deficits. They will help me in my quest to return to running.  We decided to start our walk with the Women’s Masters Race early in the morning to avoid the crowds.  This year I finished the walk in 1 hour and 25 minutes.  We shaved off close to 45 minutes off my time.  Today has given me hope.  It made me even more hungry to return to running because I know there is still room for improvement!  Every year I have improved.  I just need to figure out how to improve my balance reactions.  Things are starting to come in focus now!  It’s only a matter of time before I figure out how to walk and run again.  I’m confident the Challenge Center will help formulate a plan.  My goal is by the 30th Anniversary Carlsbad 5000 I will jog it.

I got so much on my plate right now. I’m preparing the final edition of Reversal to go on Kindle, the Carlsbad 5000, national young adult cancer awareness week, prepping for a driving test, my own rehab, and finally setting up my 2010 book tour!

Today, I think we made a real break through in therapy. Axillary crutches are good for short distances, but my sequencing gets messed up for longer distances. Training to walk may be effective with what I like to call “buddy walking”. This is the type of walking reminded me of the Monkees walk I once saw on TV.  My problems with walking are: not enough weight bearing on my left leg, short step length on the right, and not enough forward motion of my hips. A therapist stands on my right side with a hand around my waist to stimulate correct hip positioning in left leg stance and left leg swing. I would then hold the waist of the therapist to feel more secure. Thank God my therapist is female because I would have felt a little awkward if I was working with a dude! j/k… HAHAHA! I definitely felt more secure putting weight on the left leg. It definitely stresses weight-bearing on the left. I can address push off on the left leg now. This theoretically, will make me faster. I probably looked a little weird but I thought it was pretty effective.

I’m getting pretty excited for the Carlsbad 5000! Bring it on!