Swimming with Elvis

2009 got away from me before I was able to recap my last Baltimore experience (with accompanying video, of course). I am going to make this post short and sweet although I have been feeling more introspective as we pass from one year into another. Another time.

As always, it was great to visit with family and friends before heading down to Baltimore for two weeks of some serious physical and mental exertion.

The trip was full of ups and downs, but the general outcome was very positive.

The main let down for me was not having any big "aha!" moments. This by no means implies that the quality of therapy was disappointing. It was excellent as usual! This also does not imply that I didn't work hard. I was there 100% everyday. After 2 years, physical return becomes harder. NOT that it doesn't happen, it just happens in slower increments. That doesn't mean that I don't go to sleep every night believing I may wake up the next morning and jump out of bed!

I was so happy to work with Cyndi as my main therapist again, especially since I was her last client at KKI. She has since moved to Hawaii. (lucky Hawaii).

The new facilities at KKI are astounding- especially the pool. I wish I could use this pool everyday in San Francisco like I did in Baltimore, with their excellent therapists. Sad it doesn't exist here.

Baltimore was great and we were there over Halloween- party time.

Here's a video of my pool experience- you'll get the title of the blog now. VIDEO

Back To "Charm City"

Pardon my much belated blog update. I suppose I should start off by explaining where the heck "Charm City" is. The short story is that back in 1974, some ad man thought up the nickname "Charm City" as a marketing ploy to reinvent Baltimore's image to attract tourism. As Trevor cand I prepare to embark on our fourth visit to the Kennedy Krieger rehab in Baltimore, I have been thinking about how I feel the need to reinvent myself as well.

It's been two years since my TM onset, which is actually quite hard for me to wrap my head around. The first year was such a blur as we scrambled about, trying to figure out how to deal with this new way of living our lives. I'm still surprised and quite incredulous when I find myself unable to do things.

Whose body is this anyway?

I have continued my therapy regime by seeing my home PT, Michael, twice a week, going to outpatient PT with Sonya once a week and I have also added a new element to my recovery at SCI-FIT- an intensive workout, once a week. SCI-FIT is similar to other programs throughout the country, such as Project Walk. Although I have to travel an hour each way for a 2 hour workout, it is totally worth it. The atmosphere is charged with positive energy and they really kick my butt (see video at end).

I continue to get stronger and I don’t think I could ever give up on that. I have been thinking about what my next steps are, so to speak. I would like to go back to work, so I am taking this opportunity to decide what I want to be when I grow up. Perhaps I’ll go back to school. I’m not sure yet what the future holds, but I am looking forward to whatever it is.

I still remain positive about my recovery, but as time passes on and I learn about how the spinal cord and nerves heal, I realize that my body will probably need some help from the medical community to get back to a fully functional state. There are new discoveries being made at a more rapid pace. All I can say at this point is "gooooooo science!!".

Back to Baltimore. Kennedy Krieger recently opened a new state of the art facility and I am excited to check it out! I am starting a two week stint there on Oct. 19th. It may be a bit longer before we are able to go back to Baltimore, so I am really thankful we have this opportunity to go now. I am also incredibly grateful, knowing this could not be a reality without all of the generous support we continue to receive; in fact, the majority of my therapy would not be a reality without it.

Speaking of therapy- here is a video of me at SCI-FIT (Trevor picked the background music) http://www.youtube.com/watch?v=9xLhq99Kl7w

Onwards and upwards! Downwards and sideways?

This past week and a half was a full roller coaster of events therapy wise.  Friday, May 29th, at CPMC I arrived and Sonya had decided that I was ready to use the walker without the extra arm supports.  Ummm, ok, sure, why not? Needless to say I was fairly skeptical, but I trust Sonya fully, so we gave it a go.  Unbelievably, we were able to do it.  It was challenging and it took the help of three people instead of the usual two, but I was stoked. :-)

Monday I went back, and this time it was just me, Sonya and Charlene, and I have to say, it was awesome.  I felt so connected and strong and with their help, walked over 100 feet in three attempts.  AMAZING! On Tuesday, I was at the pool with Michael.  With him and Trevor beside me, I walked in three feet of water.  WOW!  Michael said I definitely took a jump healing wise.   

I was very excited about this turn of events and had visions of continuing on this trajectory.  I arrived in therapy on Wednesday ready for another incredible session... or not.  Turns out my body had other plans.  For some reason that I, nor my therapists, can understand,  what I could do that day was a pale comparison to what I did just two days before.  Everything was so much harder and I had to stop several times, barely going a few feet each time.  Why o why?  Not to be defeated, I chalked it up lack of sleep and overexertion.  My session at home with Michael the next day was fair and we discussed possible reasons for it.  O.k.,  I'll rest.   After a easy weekend of just doing the bike and standing frame, I was ready to show my stuff on the walker Monday.  The beginning was good and I felt strong and then five minutes later, fizzle.

(insert favorite swear word here)!  I have to say, I felt defeated.  Again, saw Michael the next day and felt a bit stronger and he soothed my ruffled feathers.  I haven't used the walker again yet, but will try again next week.  I know what I did that Monday will come back again and that I won't be doing it alone (literally and figuratively).  For all you faithful readers- here is a taste of what I did on Monday (and there is not a soundtrack).  http://www.youtube.com/watch?v=pcmIhRv46Z4

Video Update

Here are a few video highlights from spring training in Baltimore. I'm learning how to use the iMovie program, which has been very fun though I'm not quite ready for the Oscars yet. The video is about three minutes long.

Springtime In Baltimore

Our trip to NJ and Baltimore this March was fantastic. Not only did we get to see and spend quality time with family and friends, but we had another productive visit to Kennedy Krieger.

This our third visit to KKI, and we continue to be thrilled with the awesome therapists and professional program. It was three weeks of intensive therapy-four hours a day. This time in Physical Therapy we really focused on the lite gait program, sit-to-stands and lots and lots of core work (yay sit ups!). Occupational Therapy was all about the hands. We worked on fine motor skills for the left and using electrical stimulation to wake up those muscle on the right hand.

Function wise, the right side in general is still lagging behind the left, but making small, yet significant gains. The last day at KKI, I used a special walker and walked 60 feet with my therapists! Very cool. Yes, I have video and am working on making on a fun montage of the trip. Coming Soon!
I continue my work in San Francisco with my fabulous home therapist Michael and Sonya at CPMC.

A Breakthrough!

I recently started going back to outpatient therapy at CPMC, thanks to a new year beginning and insurance starting over. So in addition to my three days of home therapy with Michael, I am now at the CPMC gym twice a week for 45 minutes. Sonya, my CPMC therapist, is terrific! Not only has she been a PT for 20 years, but she is also a 5th degree Black Belt and is the head instructor at a local martial arts facility, so she brings a certain disciplined, yet fun, aspect to  therapy. My last session on Friday, we decided to try walking at the parallel bars, something tried once before without much success. Well, we gave it a shot and boy, did it work out. It's difficult to describe what the actual procedure entails, but let me just say it what was QUITE exhilarating! I felt euphoric. Me and the therapists were all pretty pumped, my only sadness was that Trevor was not there to see it. BUT, it will happen again and this time there will be videotape.  I was able to walk the length of the bars- about 10 feet- with assistance. We did this at least 10 times and even backwards a few times- my own version of the moonwalk. All the hard work is truly paying off and I am excited to bring this progress to Kennedy Krieger in a few short weeks!

Here is a link to the video... Walking At Parallel Bars

Video from KKI Sept 08

KKI Fall 2008

Me and my crew of excellent therapists at Kennedy Krieger from the September 2008 visit. We look forward to our visit in the spring! Just a few short months away.