Kazakhstan - The Stem Cell Journey

Hello family and friends (and possibly anonymous followers…),

It has been quite some time since my last update, and while a lot of positive things have happened in my life, I think what I’m doing now deserves the most space in this post.

I am writing from Astana, Kazakhstan, where I have received two stem cell treatments through a pilot program called Breakthrough to Independence, organized and funded by the World Stem Cell Foundation (www.worldscf.org). Basically, the program involves receiving a stem cell transplant and then devoting 18 months to intensive physical therapy and other alternative therapies to see what kind of recovery might be possible. I am going to share the story of how I got the awesome opportunity to participate in this project, and detail my journey and the experiences I’ve had here in Astana. To keep the posts from getting too long and boring, I’m going to split them up as I tell the story. I am also going to link to appropriate pages for medical information, since even though I think I have a good grasp on the procedures and the science behind them, I don’t want to misrepresent any of the organizations involved. The main partners in this project have been the World Stem Cell Foundation, Stemedica Cell Technologies, and the National Research Medical Center, Kazakhstan (hopefully your browser has a translator for that one...).

Part One: How it started

I was approached by Laura and Angela at Awakenings in August about being involved in a stem cell study. They explained that there was a possibility that I could receive stem cells, and then have the chance to receive therapy at Awakenings for 18 months, all at no cost to me. Angela worked with a doctor at one time who is now part of a company called Stemedica Cell Technologies, and they approached Awakenings looking for two paraplegics who might be good candidates for this program. They were looking for people who were young, healthy, and fit, and whose injuries were at most only a few years old. They were also hoping for participants who would be willing to talk about their experience and be spokespeople for the project. When Angela and Laura presented this to me and asked if I wanted to participate, I jumped at the chance. I was getting ready to leave to go to Florida for a reunion with my friends, but I spoke briefly on the phone with the rehab doctor at Stemedica, Dr. Manny Soto, and set up a meeting for the week after I returned.

When I came back from Florida, I went to the Stemedica offices in San Diego for my meeting. I first met with Kaye Hentschke, the fundraising coordinator for the project at the World Stem Cell Foundation, and Dave McGuigan, a member of the board of the World Stem Cell Foundation and the VP of Marketing and Business Development at Stemedica. They told me about Stemedica’s history, which instantly showed me how dedicated the company is to developing technology that can treat people with conditions like mine. The company was started by a family of doctors who were interested in finding alternative treatment for their sister in law, who had experienced a spinal cord injury that left her quadriplegic (you can read more about the company’s history here). I was able to meet the other doctors and executives who are part of Stemedica – Dr. David Howe, Dr. Maynard Howe, Dr. Manny Soto, and Dr. Roger Howe (read their bios here). I was impressed and touched by their passion to help people and their faith in the potential stem cells have to change people’s lives.

I also learned a lot about the stem cell technology at Stemedica (and about stem cells in general) – the type of cells they use, where they come from, and how they can be used effectively to treat people with not only SCI, but many other types of medical conditions. I was amazed at the success there has been treating people with strokes, eye disease, Alzheimer’s, and dementia with stem cells. The testimonials and before and after videos in the presentation pretty much spoke for themselves.

They explained what the treatment would entail – receiving two different kinds of stem cells through two different methods. Both types (and the only cells produced by Stemedica) are adult allogeneic stem cells, meaning that they come from a donor and not from your own body, and that they do not come from embryos but from adult cells. The first type of cell, the neural cells, would be injected directly into the spinal cord through a lumbar puncture (basically a spinal tap). The procedure is minimally invasive and has very few side effects or risks. The second type of cell is called a mesynchemal cell, and is administered via an IV drip for about an hour. I also learned that the stem cells we would receive are immune privileged, so there is no need for immunosuppresnat drugs because the body’s immune system won’t reject the cells. The doctors and researchers at Stemedica believe that these adult stem cells are the most effective safe cells that currently be given to patients, and they have had almost no adverse effects with any patients who have received them. I strongly encourage you to visit Stemedica’s website to learn more about the origins of the cells and what they do – it is extremely informative and will explain this all in a way that I am definitely not qualified to do! Adult Stem Cells - Stemedica.

I learned what the program would require of me, in addition to the benefits I would receive. I would be expected to undergo preliminary tests to be sure I was fit to participate, and to establish a baseline by which to measure future progress. After receiving the cells, I would be expected to devote a considerable amount of my life for the next year and a half to my recovery, and work as hard as possible to improve my condition as much as possible. I would also receive another stem cell transplant in those 18 months, when the doctors decided it made the most sense. I would also be expected to share my experience – whether at speaking engagements or in other forms of media as needed. The goal of this pilot project is to raise awareness about how safe and effective adult stem cells are at treating spinal cord injury (and other conditions), so that money can be raised to provide the same opportunities to others who are newly injured and hopefully greatly increase their prognosis after injury.

Stemedica has received FDA approval to use their cells in a clinical trial in the United States for ischemic stroke patients, but at the moment that is the only treatment possible using the cells in the US. I was told there were three possibilities of locations for treatment: Kazakhstan, Mexico, or Russia. Many treatments have already taken place in Russia (most people treated with Stemedica cells have received their treatment in Russia).

After this exhaustive meeting, I was excited to move to the next step. This sounded like a great opportunity for me to receive stem cells that I otherwise would probably never get, thanks to the prohibitively high cost and lack of clinical trials in the US. It would also give me the chance (and the funds) to do what I moved to San Diego to do in the first place (in part) – work on my physical rehabilitation as much as possible. Sounded like a win-win situation for me, and I would be paving the way for others to get treatment and hopefully not endure what I have as a spinal cord injury patient. I talked it over with my family and we all agreed that as long as we could make the logistics work, I was going to do everything I could to participate.

[to be continued...]

All settled in...finally!

Whew! The past month (wow, has it been that long since I updated?!) has been one big whirlwind of packing, unpacking, packing and unpacking again, but it was all worth it. I've finally moved into a permanent place in San Diego and am ready to start the next stage in my life here.

I arrived on Tuesday, April 28 after a relatively uneventful pair of flights from Richmond to Newark and Newark to San Diego. I picked up my rental car and and made my way from the airport to my home for the next several weeks, Paul Jacobson's house. Paul is a client at Awakenings who generously offered to have me as his guest while I tried to figure out where I was going to live. Boy, did I get a good deal there! Paul lives in a beautiful, one-story, completely accessible home in a private neighborhood about 20 minutes from Awakenings. It was the perfect place for me to rest and regroup, and I was very lucky to be a guest there.

Paul's Great Dane, Gigi, enjoying the California sunshine in the backyard

The Awakenings fundraiser was the day after my arrival, and was conveniently held at an estate home in Santaluz, Paul's neighborhood. The fundraiser consisted of an evening with Jack Tempchin, songwriter for the Eagles, and was a great success. Most of the Awakenings clients were in attendance, enjoying the food offered by different area restaurants and local wine and beer (some of us more than others...). Jack played two sets with his band, and there was a silent auction and a raffle as well. It was moving to see so many people inspired by the Awakenings cause - many of them after only learning about the organization that evening. The staff did an incredible job preparing for and putting on the event - the setting was beautiful and even the tiniest details were taken care of. Hopefully the word will continue to spread about the work they are doing...after an evening like that, I don't think it will take long. I had a fantastic time, to say the least. It was a great welcome back to Awakenings, and to California.

Zach, Patty (an Awakenings client), Andrew, Adam and me at the event

The following week, my car arrived (yay!) and my workouts started up again, as did my job working for Rivanna. My training regimen at Awakenings is considerably less intense than it was during my previous stay here - I have to have time to do something other than exercise and get massages, after all! I'm currently spending two hours twice a week doing personal training, one hour on the gait trainer, two hours on the FES bike, an hour of Pilates, one hour of massage and two acupuncture sessions. While right now it still feels like a lot, I'm reluctant to cut out any of the services Awakenings has to offer until I can assess what is working best for me. Thanks to my two week break, I don't really feel like I've had enough uninterrupted time to figure out how my body reacts to different therapies and what will be best for my recovery. Right now it just feels good to get back into the swing of things, rediscovering the progress I made when I was here before and hopefully making new progress!

My next obstacle, after getting myself here, was finding a place to live. I scoured craigslist daily looking for the perfect two bedroom place in Ocean Beach that would work for both Matt and me, but it started to look like that place didn't exist. Then, Matt told me about another living opportunity - Ben, an Awakenings client, was looking for someone to fill a newly vacant room in his apartment. I took a look at the place and, while I liked it, was still on the fence about it. The building is kind of old and sits atop a rather steep hill, and the apartment only has one bathroom. On the upside, however, it has already been modified to suit Ben's needs (meaning there is a small ramp leading up to the front door and the bathroom door has been widened). I debated for about a week, drove around Ocean Beach and talked it over with Matt (and everyone else who would listen...) and then went back and looked at Ben's place again. On a different day, it looked completely different. He allayed my fears about several things (apparently a couple blocks down the hill isn't quite so steep and we're going to get our own flat parking spaces, for example) and there are a few features that were just too difficult to pass up. The apartment building literally sits on a cliff that overlooks the ocean, and while our unit doesn't have a view of the water, the pool deck right around the corner has an incredible view. There is a bright, good-sized patio off of my room, and the apartment has a very open floor plan with no tiny hallways and tight spaces. So I took the plunge!

my new roommate, Ben, and me at the fundraiser

The next week was spent packing my clothes (again), moving from Paul's, wandering around (for hours) at IKEA, assembling furniture (even more hours) from IKEA, and finding a home in my small room for my racks and racks of clothing (some of those sweaters are going to have to go...). Four days later, though - I'm in! There are just a few finishing touches to put on the room - with the exception of one thing. My mattress is on its way (or soon to be) from Virginia, along with some boxes of books and DVDs. It will take about a week to get here, so until that happens I'm sleeping on an air mattress. Not exactly ideal, but it's actually pretty comfortable and will provide a great place for friends and family to crash when they come to visit! I definitely feel like I made the right decision and I'm really happy here. The apartment is located in Encinitas, only about 5 minutes from Awakenings. It's a much better location for me than Ocean Beach, I think - more my scene, and more centrally located. This doesn't hurt either:

view from the pool deck of the first real sunset since I moved in

Things are finally started to come together, it seems. I'm still a little bit in limbo on a couple of fronts - the work I'm going to be doing for Awakenings, for one thing, isn't quite nailed down yet, but we're in the process of figuring that out. I haven't found another part time job yet to supplement the work I'm doing for Rivanna, but I'm rapidly seeing that it's going to be a necessity - California isn't cheap, and neither is Awakenings. I'm hoping that in the next couple of weeks I can figure some of these things out, but right now I'm just happy to finally be doing something that I'm genuinely excited about. The past year has been filled with small achievements that, while they have been immeasurably important to my rehabilitation and ability to resume a normal life, certainly didn't fit in the category of real, regardless-of-injury life achievements. Learning to drive, for example, was definitely an important step, but not as cool the second time around :/ While I don't want to take any significance away from those things, because I am proud of what I have accomplished this year and grateful that I've been able to progress as much as I have, it just feels good to be moving forward in a new way. Here's to new beginnings!

Sunny California, here I come!

It's been far too long since my last post, but with the beautiful 70-degree weather we're having in Powhatan right now, sitting outside and writing about California seems like the only real option to pass the time.

My trip to California has come to an end, but my time on the west coast has not! When I last wrote, I was in my third week and right in the middle of my intensive workout regimen. As I mentioned, I extended my stay another two weeks so I could continue my workouts and scope out the scene as far as finding a place to live and a job. On Friday of my third week, my dad arrived in San Diego. He got to check out Awakenings and meet most of the staff, then he treated me to sushi and drinks in Encinitas. On Saturday, after lunch in La Jolla and some shopping, we met up with my cousin Theresa, her husband Ken, and their adorable daughter Angelina for dinner in Old Town. After a bit of searching, (and witnessing some sub-par hostessing skills) we were finally seated at a Mexican restaurant, complete with a mariachi band to serenade us during the meal. Theresa and Ken's visit from Santa Monica continued through brunch Sunday and a trip to Balboa Park. We took a surprisingly interesting walk through the miniature train museum and wandered around the park before our visitors had to head back north. After they left, Dad and I decided to go to the BODY WORLDS exhibit at the San Diego Natural History Museum. What a fitting way to spend the one-year anniversary of my unfortunate tumble from the saddle. I had spent so much time at Awakenings learning which muscles I should imagine using for which motions, and thinking about my spine and my vertebrae - this was the perfect opportunity to see it all in person. It was fascinating.

Angelina, Theresa, Ken and me. Obviously only paying attention to Angelina.

That evening we headed over to the Hotel Del Coronado for drinks and dinner, then made our way back to Del Mar and turned in. Monday morning, my dad loaded all my stuff in the car and moved me into the Homewood Suites, my new home for my last two weeks at Awakenings. What a difference! The room had a small kitchenette, complete with full-size refrigerator and two cooktop burners, so I'd be able to actually fix my own meals. The bathroom was bigger and had a lot more counter space, and the hotel has a beautiful pool and jacuzzi. After Dad left for the airport to head back to VA on what would have been my flight back, I went to Awakenings to start my fourth week of training.

The following two weeks were low-key, as far as visitors go - I had none! It was probably for the best, though, because I added an extra massage and acupuncture session to my schedule and didn't return to the room every day until 5 or 6 pm. My only weekend alone in San Diego I spent sunning and relaxing by the pool at the hotel - something I hadn't had a chance to do during my stay.

My final week at Awakenings would have been bittersweet, had I not already decided for sure to move back permanently. I spent countless hours scouring craigslist, looking for possible job opportunities and places to live. I applied for one job, but didn't have high hopes and wasn't sure what my alternatives were going to be. Luckily, Crystal and Gretchen at Rivanna came to my rescue! (For those of you who have been living under a rock for the past 10 years, or just don't know me very well, Crystal is my stepmom and Rivanna Natural Designs is the company she started seven years ago.) They offered me a part time job working for Rivanna, working on the company website and doing marketing for them. This was exactly the kind of job I was looking for - something with flexible hours that would still allow me to work out at Awakenings during the day. I can do all my work for them from home, and only need to be available a few hours during the workday but can do the rest of the work whenever it suits my schedule. While I won't make enough money with Rivanna to completely sustain myself, it's the perfect part-time solution.

I planned on finding another part-time job to make the rest of the money I would need for living expenses, etc., but on my last day at Awakenings another opportunity presented itself. During my "client assessment," during which the staff members involved in the client's program discuss his or her progress and plans for the future, Laura suggested that I could also work at Awakenings part time, doing much of the writing for print material and the website. She also offered to send me to a grant-writing class so I could do that for them as well. Obviously, I jumped on this opportunity! We haven't discussed particulars yet, but I'm excited to become part of the Awakenings family. Plus, this means that I will have fewer distractions from my recovery, since I'll be spending time actually working at Awakenings as opposed to several other part time jobs. I will probably still need to find a job tutoring or something like that in the evenings for supplemental income, but things are really coming together!

My last day at Awakenings was eventful, to say the least. That evening, I went out for sushi with two of the trainers at Awakenings, Matt and Zach. Matt and I were discussing the housing search, because I was looking for a one-bedroom place and he was also looking to move out of his current living situation and find a place on his own. We got to talking and realized it would be a lot cheaper to live together than to each live separately...so over the next few days we talked about it and decided to do it. Matt has several clothes friends in wheelchairs and lived with one of them for a couple of years, so he knows exactly what I need in an apartment. We've been looking on craigslist since then, but the perfect place hasn't shown up yet. Hopefully it will soon!

My extended stay in California spanned Easter weekend. Laura and Chris invited all the Awakenings family to their house for dinner on Sunday, which I was very excited about since I was missing Easter with my family at home. Unfortunately, I got really sick on Saturday night with food poisoning, or some sort of 24 hour bug, so I missed most of the festivities on Sunday. I made it to their house for a couple hours in the evening - just long enough to play a game of Scene It before everyone went home.

My flight was scheduled to leave at 9:55 Monday evening, so I spent most of Monday packing and getting everything together. I headed over to Awakenings in the afternoon to say goodbye to everyone (and I had planned to partake in some of the leftovers from the day before, but unfortunately my stomach still wasn't cooperating). I managed to kill enough time to almost miss my flight! That turned out to be a good thing, however, because I was bumped up to first class. I flew in style from San Diego to Newark (ugh!), and then not so stylish from Newark to Richmond. Of course, it was 45 degrees in Newark when we boarded the plane (outside, of course, because there was no jetway...that was an interesting experience) and pouring down rain in Richmond when we landed. Excellent welcome to VA.

Since I've been back on the East Coast, I've been frantically readying myself to leave again. Awakenings is having a big fundraiser on April 29 that I really wanted to be back for if possible, but I knew I couldn't make it back in time driving my car out if I wanted to be in Charlottesville for the Foxfield Races this Saturday. I decided it makes the most sense to ship my car out now, then fly out next week on Tuesday. I was a little worried that I wouldn't have anywhere to stay when I got there, since Matt and I still haven't found a place, but after talking to the folks at Awakenings, it looks like I will be able to stay with Paul Jacobson, who is a client at Awakenings and offered me a room in his spacious house for as long as I need it. How nice!

So, it appears that things have pretty much come together. I just said goodbye to my car this afternoon when the auto transport company picked it up. It should take around 8 days to get there, meaning that I'll need to rent a car for a little while when I arrive in San Diego, but not too long. I booked my flight for Tuesday morning at 10:15, and I'm going to ship out some of my furniture and belongings on a freight carrier through my dad's company for pretty cheap. It's really happening!!

I'm so excited to finally be starting a new chapter in my life. It's been almost a year since I saw my friends moving to different cities to attend graduate schools or start new jobs, and I (sometimes) patiently waited for the time to come when I would be able to do the same. It seems that it finally has. I know it will be difficult to be so far from my family and friends, but at the same time I think it will be healthy to make some new friends and create some new memories that are completely separate from my life before my accident. While I am nervous, I think excitement and the whirlwind that has been the past week or so is overshadowing that, at least for now.

Thanks to everyone for all the encouragement and support. And please please please, feel free to come visit me out in San Diego!

Southern California: Week 2 (and a half) at Awakenings

I've now been in California for almost three weeks, and I'm hooked. My constant stream of companions has almost come to an end - my mom just left today and my dad is in the vicinity but is actually in L.A. until Friday. Kasey arrived on Tuesday and stayed until Saturday, when my mom arrived. The trip isn't as close to over as you might think, however - I'm staying for two more weeks! Yep, I've caught "the bug," as they call it. I'm going to continue the intensive program that I've been doing for two more weeks starting on Monday. I'm also going to move to a different hotel - the Homewood Suites, which is more of an extended stay hotel, with a full kitchen and laundry services. Should make my life a little easier (and cheaper!) while I'm here.

I've basically been following the same exercise regimen that I wrote about last week. Personal training in the morning from 9-11, either the FES bike or the gait trainer (or both) after that, and pilates with either massage, Jin Shin, or acupuncture in the afternoon. I work with different trainers throughout the week, which is nice because everyone has their own style and I enjoy the combination of workout methods and programs. I can see improvements in several areas even after only the two+ weeks that I've been here. I'm able to make a connection with my glute muscles, especially on my left side. I can feel them firing when I'm on the FES bike, and today during acupuncture I could feel the left glute pulsing with the electrical stimulation.

The main thing I've been working on in most of my sessions is my posture/alignment. Because of the hardware in my back (spinal fusion from vertebrae T7-L1), I don't enjoy the same flexibility in my back that I used to as a dancer. In addition, my hip flexors are extremely tight - since I'm sitting down all the time they never get stretched appropriately - so my body isn't completely straight and flat when I'm lying on my back, or when I'm standing up. This doesn't bother me so much on a day to day basis, but it makes supporting my own weight in a standing position very difficult. My back is extremely arched and my upper body is thrust out in front of me instead of being balanced over my hips and legs. I've been doing exercises to tire out and stretch the hip flexors so they will relax, as well as working the muscles in my low back. I'm not sure what the situation is with the rods in my back, but I'm thinking of talking to my surgeon about the possibility of removing them. I've talked to a few people who have had their hardware removed and it sounds like it really helps some of these issues. I would have to build up the muscles in my back enough to support the area without the hardware, but it sounds like it's definitely something to keep in mind. Other than those specific areas, I've just been working out my upper body, gaining strength in my arms and my core through various exercises.

Kasey and I spent some time enjoying our surroundings during her stay this week. She arrived on Tuesday, so we went out in Ocean Beach, which is just north of San Diego, to celebrate St. Patrick's Day. Ocean Beach has a much different feel than Del Mar or Solana Beach - it's home to a much younger, more alternative crowd. Wednesday night was spent in downtown San Diego, at a restaurant called Extraordinary Desserts. The place certainly lives up to its name - we each had some sort of decadent chocolate cake dessert - and also serves great appetizers and drinks. After dinner we ventured up to Altitude, a bar on the roof of the Marriot that overlooks Petco Park and has a beautiful view of the city. It was surprisingly foggy that evening, so it felt like we were floating in the clouds! There was also a baseball game that night, so the atmosphere on the roof was very laid back. Thursday we decided to get a feel of the area closer to home, so we went out in Encinitas. Friday was Kasey's last night, and we spent it in La Jolla at Trattoria Acqua for dinner.

Saturday was an entertaining day, to say the least. We decided to go on a road trip to the north, and turned it in an OC sightseeing tour (as in The O.C., the TV show that aired on Fox several years ago). We stopped at several places where they filmed different scenes from the show, and along the way got to see another side of California that you don't really get in Del Mar. Ironically, most of the scenes from the show were actually shot further north than the Newport Beach area in Orange County (where the show was supposed to have taken place), in the beaches just west of L.A. At the conclusion of our tour, we headed back down the coast to the airport and Kasey headed back to New York.

My mom arrived a few hours later. The weather was supposed to be iffy on Sunday, so we planned to explore the nearby outlet mall and have dinner downtown. The sun came out, even though it was a little windy, so we ended up having a nice day at the mall and then enjoying dinner at an Italian restaurant in Del Mar. Mom got to experience Awakenings with me on Monday and Tuesday, and after an evening out in La Jolla on Tuesday, she headed back to Richmond this morning. She hasn't quite made it there yet, though - her flight was delayed so she missed her connection and is staying in Detroit for the night. Wish her luck getting out of there tomorrow! My dad will be here on Friday after working in L.A. all week, and we'll be able to spend some time with family this weekend before he heads back on his (what was supposed to be our) flight Monday.

I'm so excited to spend two more weeks here! I really want to give my body the chance to take in everything I'm doing at Awakenings, and three weeks just didn't feel like enough time, especially for the treatments that I only get once a week. I know that I'm lucky to be able to devote so much time to this at this point in my life, and I don't want to rush into any other responsibilities until I've fully explored what I can get from Awakenings. Obviously I do have some financial responsibilities that I still have to uphold while I'm here, but I can at least spend a couple more weeks focusing on my mind and body before going back to the real world.

That being said...I am seriously considering relocating to Southern California. Like I said in my last post, it's the ideal place for me for so many reasons. I'm hoping to take advantage of the added time here to talk to anyone that I have connections with in the area - hopefully do a little networking so I can maybe find a job! I'm hoping to at least get my foot in the door before I go back to Virginia, then continue working on it from there until something works out, at which point I'd be able to come back for good (with my Prius, which I miss dearly)! If I could find something that gives me some degree of flexibility as far as the workday goes, I could at least continue to work out at Awakenings to some extent almost every day. I know it's overly hopeful of me to think that I could find something in this economy, but I'm definitely going to try! Today as I was driving back to the hotel after my acupuncture session, the temperature was 70 degrees and the sun was about to set over the Pacific and I thought "no wonder everyone wants to be here!" The natural environment and the mind/body connection I'm working so hard on at Awakenings are really in harmony here. I can't wait to see where the next two and a half weeks will take me!

Thanks to you all for your encouragement and support. It means a lot to know that you are all so interested in what I'm doing. Thanks for being so excited for me! I'll keep you updated as things progress.

PS-Pictures to come later!

Southern California: Week 1 at Awakenings

beware: this is a long post. i'm going to try to break it up by day so that it doesn't quite seem like the novel it is becoming. each day of the week, i tried something new in addition to my regular routine, so if you want to skim to those sections, feel free!

I came out to San Diego to attend Awakenings Health Institute for three weeks, March 9 - March 30. I've been lucky enough to have great friends who have journeyed out here to go on this adventure with me (some still to come), and so far it has been an amazing experience. Awakenings is a rehabilitation center for people with neurological disorders, with a focus on those with spinal cord injuries (you can read all about it on their website, www.awakeningshealth.org). Beginning this trip, my goal was to learn everything I could from the people here and the work they do, then take that information and experience with me back to the East Coast, where I could continue personal training and other aspects of the program (like massage, acupuncture, etc.). Now that I'm here, I see that I am going to get much more out of this experience than just knowledge and a stepping stone to the next chapter in my life.

Monday
I showed up at Awakenings on Monday, Allison and Laura in tow, not really sure what to expect. I knew a decent amount about the general workings of the place from what I read on the website and learned from Kristin Beale and her family, but as far as the feel of it, I wasn't sure what I was getting into. Laura Karch greeted us and instantly made us feel comfortable. She went over the paperwork with me, asked me a few questions, then started my physical evaluation. (I should add that she made Laura and Allison feel at home immediately - offering them a place to put their purses and jackets and two exercise balls to use as seats while they observed.) She did some basic range of motion exercises with my legs and asked me some questions about my spasticity, then gave me some good news right away. As I was already aware (but unsure of the implications), the muscles in my legs still have a lot of tone. They resist movement involuntarily and spasm often when stimulated (by touch - as many of you who have helped me move around have experienced!) I had heard mixed things about the benefits of spasticity - some doctors (including my rehab doc, Dr. Alfano) have said that they understand spasticity to be inversely related to recovery, while other experts (like the trainers at Project Walk) maintain that spasms are a good sign and mean that there is still a connection between the brain and the muscles, albeit not a reliable one. Laura showed me that, in addition to still having good tone, my legs still "remember" how to walk. When she flexed my foot and ankle and stretched my calf muscle as far as it would go, my knee bent and my leg jumped up. This is the same reflexive action that your leg muscles take when you walk - once your weight moves from your heel to the ball of your foot and your ankle is as stretched as it can be, you pick up your foot and move it in front of you. Basically, my legs still want to do this, even though my brain isn't telling them to do it. Laura said that it takes some patients a long time to get to that point (lots of repetive walking motion is required to remind those legs what to do) and that it's a really good sign that my legs are already there. She was very excited about that, which made me excited too!

After working with my legs a bit (with me lying down on the exercise mat), she had me get down on the floor and sit with my back up against the wall and my legs out in front of me. She was testing my core strength and my ability to keep my pelvis neutral, which is not very good - I tend to either arch my back or slump over to steady myself, as opposed to being right in between. I did a few weights and other exercises to test various muscles in my core and in my back, then they put me on a stationary bike. With my feet strapped into the pedals and people keeping my legs steady on either side, I was able to push my legs down into the pedals with my hips and actually use the bike, which was certainly a good workout for my abdominals!

After this initial evaluation, we had a lot of free time, so Allison, Laura and I went to lunch in downtown Del Mar and then headed to the airport to drop Laura off (or so we thought) and pick up Carter. Laura planned to check out the possibillity of taking Tuesday off at work and taking a flight out Tuesday instead (Southern California really seems to do that to people...no one ever wants to leave. Or so I'm told...) When we got to the Continental counter, they told her that it would be $150 to change her flight. Bummer! Then more bad news - her flight (which was supposed to leave at 5) was delayed 30 minutes, meaning she would have only 10 minutes to make her connection in Houston. In order to make the flight, she would have to leave in 45 minutes, and miss seeing Carter for the hour or so that they would overlap in the airport (Carter's flight came in at 3:15 or so). The Continental rep then got this twinkle in his eye and looked at Laura and said "Well, since you're going to miss your connection, I could bump your flight to tomorrow at no extra charge..." and all was right again! So Laura got to stay for another whole day, and spend the evening with Carter after she arrived!

When I went back to Awakenings that afternoon, I had a pilates session with Andrea Plichta. It was much of the same type of exercises that I remember from pilates classes I took over the years, just slightly modified. We talked a lot about working on my low back and getting my pelvic alignment right, which seems like it is something I am going to be focusing on a lot. I really liked her method of teaching - she uses lots of helpful metaphors to explain the exercises and appreciated my dance background!

After pilates, I had my massage evaluation. I had never had a professional massage prior to this, so I was really excited...and a little nervous. Complete relaxation has never been my strong suit, so I was a little apprehensive of my ability to relax and experience it appropriately. Matt McCall is my massage therapist (I learned from the AHI website that almost every trainer is also a certified massage therapist) and he talked a lot about breaking up the scar tissue at the site of the injury to my spinal cord. He said he could feel a lot of it and explained that breaking it up if at all possible is an important step in making it possible for the nerves to reconnect. Needless to say, it was a pretty intense deep tissue massage, and he said that it will take a lot of work to break up the scar tissue - that's what the next two weeks are for! He also relieved a lot of tension in my neck and in my hands and fingers (an area that you don't usually think of as tense - unless your hands are what you propel you on a daily basis!).

Needless to say, I was pretty relaxed after the massage, but unfortunately that relaxation didn't last. I encountered some problems with some medical supplies that were supposed to be shipped to the hotel, and long story short, I was in a desperate search to find what I needed. CVS and other 24-hour pharmacies don't carry urological supplies, but luckily Laura (from Awakenings) was able to find a client of theirs who was generous enough to lend me what I needed. It wasn't the most fun way to spend our one evening together (Allison, Laura, Carter, and myself) as a foursome, but we definitely made the most of it.

Tuesday
Allison and Carter rented a car for themselves for the week, and on Tuesday Allison took the car to visit her grandmother near LA. Laura and Carter entertained themselves in the town of Solana Beach while I was at Awakenings, and were also able to see some of the other activities I participated in on Tuesday.

I had personal training again 9 am (Monday-Friday), this time with Andrew Braga - a JMU grad. Apparently there are an awful lot of East Coast transplants out here. He did some workouts with my legs, similar to what Laura had done, then had me work on my core and upper body strength on the floor on my hands and knees. He came up with a lot of creative exercises to work different muscles, and I was throughly wiped out at the end of it!

After a short break, I used the gait trainer. This is basically a treadmill with a harness hanging above it that is suspended from the ceiling. Once I am fitted in the harness, they wheel me up onto the treadmill and strap me in so that I'm secured from the ceiling and the sides of the treadmill. My weight is entered into the machine and a percentage is chosen of my body weight that I will be supporting myself. I started at 70% - meaning that the machine is still holding up 30% of my weight and I'm supporting the rest on my legs. As the conveyor belt starts to move, trainers seated on either side of the treadmill hold onto my feet and legs and facilitate the walking motion. This is where my muscles' natural walking reflex comes in handy. When my legs are completely extended, they pick up and want to kick forward on their own. The trainers just have to hold onto my feet and make sure they step in the right spot. I was on the gait trainer for about half an hour and it seemed to go really well. Laura and Carter were there to watch and they said that they could the muscles in my legs and my gluts really working as I was walking.

After a trip to the airport to drop off Laura, I had a Jin Shin session with Chris Capitelli. I have to confess that even after he explained it to me, I probably don't understand it as well as I should. This website can describe it better that I can, but Chris basically told me that it's a method of channeling energy in the body and "fine tuning" the energy. For people with spinal cord injuries, it's especially important to bring energy down into the limbs that are paralyzed - to balance out the body's energy so it isn't all concentrated in the head, but flows throughout the body. His method is to touch two different points on the body and feel the beats of the pulse in each point eventually sync with one another. He told me that people tend to get very relaxed and often fall into a state of quasi-sleep during the session, which definitely happened to me. I kept falling into these really intense through processes, only to "wake up" out of them and realize I was still in the massage room. It felt like I was in there for hours. Chris also said that people often notice very intense dreams in addition to a change in energy levels, which I haven't noticed too much. He is learning the technique of Jin Shin from a woman who has done work with people with spinal cord injuries, and he said that there have been some really good results for many people. I was more relaxed during that Jin Shin session that I have been in a long time.

Carter and I decided to order sushi Tuesday evening, since Allison got back late from her visit with her grandmother and had already eaten dinner. We had an entertaining experience trying to physically find the restaurant we had ordered from (that we found online) and eventually discovered that it had moved 30 minutes outside of Del Mar. Whoops! We found another restaurant that was luckily still open, and had our first taste of delicious California sushi.

Wednesday
I worked out with Matt Wednesday morning, followed by another gait training session and more pilates. Wednesday's new experience was acupuncture. I sat down with Adam Gries, the acupuncture director, before our session. He talked about the benefits of acupuncture, especially for people with SCIs, then asked me many questions about my accident and my goals. He told me that the high level of muscle tone in my legs is quite rare for a paraplegic 1 year post-injury, and that if I really want to pursue recovery, I'm already well on my way. That was uplifting and exciting for me to hear, and made me all the more interested in what acupuncture could contribute! I was definitely nervous about the acupuncture - the thought of something poking needles all over your body isn't exactly calming - but it was really very relaxing. Adam said that in addition to targeting the muscles in my legs, he was also going to target my bowel and bladder, because some people have seen improvements in sensation and function in those areas after acupuncture. After inserting the needles in my calves, quadraceps, abdominals and obliques, he attached a cord (that looked like a miniature jumper cable) that was hooked up to an electric current to each needle. Once all the cords were attached and the current was turned on, all the targeted muscles started to pulse together. It was surprisingly relaxing. Adam told me to visualize myself doing the movements that the targeted muscles would control, like flexing my ankles or pulling my legs up toward my chest (calves and quads). He left me there for about 20 or 30 minutes to visualize and feel the effects of the acupuncture, and I actually almost fell asleep a couple of times! It was very relaxing and just really cool to see all my muscles working in harmony.

Wednesday evening was Allison's last night here, so she, Carter and I went to an Italian restaurant with a beautiful plant-filled, twinkling patio for dinner.

Thursday
Thursday was a relatively short day, as far as workouts are concerned. I had personal training with Andrew in the morning, then another gait training session. In the afternoon I got on the stationary bike again for about half an hour. Carter and I had lunch at a great sandwich shop in Del Mar and just took it easy for the evening - napping and reading and such. We ate some Chinese for dinner and enjoyed Thursday night TV.

Friday
I had personal training again with Andrew on Friday, then pilates and gait training back-to-back. After gait training, I ate lunch with Matt, one of the trainers, and returned to Awakenings to find that the FES bike, which had been missing a part all week, was fixed! Angela, who is the nutritionist and is also a chiropractor, set me up on the bike. She attached electrode patches to my quads, hamstrings, and gluts. Laura programmed my information into the machine, so all we had to do was plug in my unique ID number and password and the machine logged my usage statistics as I exercised. Once the machine is turned on, it sends an electrical current to the muscles where the patches are, stimulating the muscles to fire. That firing, in conjunction with the pedals on the bike turning, causes the legs to start pedaling the bike. I don't have to get out of my wheelchair - I just wheel up to the bike and strap myself in. I used the bike for an hour and could definitely feel it when I was done. I also noticed that I could feel my glut muscle on my left side firing as my legs were working. I'm not sure if it was the actual internal muscle working that I could feel or the external patch on my skin, but either way that is an area that I don't usually have any sensation or control. I've been told that the FES bike is the single most important piece of equipment, other than a standing frame, that I should have at my home. Using the bike every day is the only way to give my leg muscles constant exercise and keep them from atrophying. After being told so much that the muscle tone in my legs is a great sign, I really want to keep that up by using the FES bike. Now that it's fixed, I'll be using the one here 4 times a week, and even more if I'd like to.

Friday night, Carter and I went to downtown San Diego and had a fabulous dinner at a beautiful restaurant. She left Saturday morning to return to Atlanta, and I spent the day running a few errands and just enjoying the time to myself. Kasey arrives on Tuesday, so I'll have a few more days alone before the last member of my entourage (as the people at AHI called it) arrives.

After my first week, I feel fantastic. I can't believe that I only have two more weeks to continue what I've started here. Awakenings is an amazing place, and that is 100% due to the incredible people who work here. Every person is genuinely invested in the recovery of every client, but they are all still personable, fun, and extremely inspiring. They are all also incredibly knowledgeable about what it is they do. They are able to come up with creative exercises on the fly to work specific areas of the body, and notice even the smallest details in muscle movement and control. As a former dancer, I really appreciate working with people who view and work with the body as intricately as I do. They all have given me the motivation and inspiration to work really hard while I'm here, and the positive feedback that I've gotten already gives me a kind of hope that I haven't really experienced since my accident.

The atmosphere at Awakenings is laid back but at the same time intense and focused. One gets the sense that every client, while still able to joke around and join in the general camaraderie, is on a mission to push his or her body as far as it will go. The same goes for the trainers. I really get the sense that they see each other as family - they share in each others' (and the clients') successes (and they bring their dogs to the gym!)

I have to say that I am going to have a really hard time going back to Virginia, and that's after only one week here. Aside from the great feeling I get from being at Awakenings, southern California is just an ideal location. Everything (and everyone!) is so wheelchair friendly, the weather and the land is absolutely gorgeous, and the atmosphere here is just different. I am very excited to see how things go over the next two weeks, because I can already notice a difference in my body. I don't think that the type of workout experience I get here is something that I can replicate when I return. So much of it, for me, is about the environment and the people that I am starting to wonder if this is the place for me!

Southern California: pre-Awakenings

Sunny California!

I've arrived in San Diego and have been attending Awakenings Health Institute for a week now. I can definitely say that I'm so happy to be on the west coast, for so many reasons - #1 of which is Awakenings. For more information about what exactly Awakenings is, please click the link - I have enough other things to describe that I'll refrain from going into detail about what they do in this post.

My friend Allison and I arrived in San Diego last Thursday evening around 8:30 pm (Pacific time) after two relatively uneventful flights from Richmond. The experience of transferring into a miniature aisle wheelchair and being strapped in, then wheeled backward to my seat is a slightly harrowing one to say the least, but was much better on our second, much larger plane from Houston to SD. Upon arrival I called Enterprise, our car rental company, so they could send someone to pick us up and take us to their off-site location. Allison and I were a little concerned that we didn't know what sort of vehicle we were looking for to pick us up curbside at the terminal, but that proved to be irrelevant when a sleek, black Hummer H3 pulled up and a young guy in a shirt and tie got out to load our bags into the massive vehicle. Picking up the car was no problem at all, and they even waived the $20/day under age 25-fee because the car has assistive controls. Once we got in the car (a Dodge Avenger), I realized that the controls were actually different than the ones in my car, so that took some adjusting. Luckily the new controls are relatively intuitive, so I'm managing just fine. We headed for our hotel, a Hampton Inn in Del Mar, checked in, and passed out.

After a good night's sleep, we set out to explore Del Mar and Solana Beach on Friday. First, we checked with the hotel to see if we could move to a bigger wheelchair accessible room, because the one we were in was a little tight and the bathroom wasn't quite big enough. They moved us when a much-improved room came available in two days. We drove out to Solana Beach so I could scope out the Awakenings location, then we found a cute little cafe called "Americana" where we ate lunch. We wandered around the town for a bit, Allison dipped a toe in the Pacific, and we headed back to the hotel. We stumbled upon this really nice Italian restaurant around 9:30 for dinner and had a fantastic meal.

On Saturday, we did some more exploring. We drove down to La Jolla, parked the car, and started looking for a place to have lunch. While strolling down the sidewalk next to all the waterfront restaurants and shops, we found a public wheelchair lift that allowed access to several floors in a large plaza. Not knowing what to expect, I took the lift up to the first floor of the plaza, and Allison and I followed "To Restaurant ---->"-type signs around some corners, up a couple floors in the elevator, around another corner, and through a blank looking door. We popped out at the back entrance of this beautiful, trendy terrace restaurant with a fantastic view of the ocean. Pretty lucky! We definitely felt like we were at the "place to be" on a Saturday afternoon in La Jolla.

view from the restaurant

After lunch (which basically turned into dinner), we did some shopping and headed back to the hotel. After a couple of hours, it was time to pick up Laura from the airport. To pass the time, we decided to have a drink and an appetizer in downtown San Diego near the airport while we waited for Laura. We ended up at a very authentic Argentinian restaurant, where we had a glass of wine and some empanadas before picking up Laura and heading back to the Hampton Inn.

We expected Sunday to be the only full day the three of us would have to spend together, so we decided to go on a little scenic trip up the coast. We got to Laguna Beach around 2 and had chips and guacamole, fish tacos, and margaritas at La Brisas (thanks to Crystal's recommendation). The view from the patio was amazing and the food was excellent.

view from the gazebo next to the restaurant

After lunch/dinner (seems to be a theme with us...), we drove up to Newport Beach and watched the sun set over Balboa Island. Then we made our back to the hotel so I could get prepared for my first day at Awakenings!

One of the things that I noticed immediately here is the accessibility of all the restaurants and public places. Everywhere we've been has had a ramp and a wheelchair accessible bathroom, no matter how remote or small the place. I can't express how much easier that makes life for me - I feel like I have the freedom to go wherever I want without the constant worry of being able to get in or get to the restroom. It's definitely helping me fall in love with Southern California...

It's been several months since my last post - my apologies! But the fact that I haven't posted anything means I've been busy, and that's good, right? I'm not sure where to start, it's been so long. I'll start by warning my reader that this post will probably become quite lengthy as I attempt to catch everyone up with my comings and goings. In my last post, I talked about getting into a better wheelchair, driving, and doing some more rehab. I'm 3/3 on that list I guess, but with complications, of course.

This summer was relaxing and pretty enjoyable. I spent a lot of time with my friends, out and about in Richmond and sunning by (and in!) the pool. In early July, I went to Sheltering Arms in Richmond to do a seating evaluation for a new wheelchair. I ordered my chair based on my needs at the time and the recommendations I received from the therapist and wheelchair technician from Rehab Health Care. They promised me my chair within 90 days...and I was naive enough to believe them, I suppose. It's now January and I think the frame for my chair has arrived, but the back wasn't right so I'm waiting on that piece to come in so I can go in and have the chair adjusted for me and finally take it home! Luckily, I convinced the Rehab Health Care tech to give me a loaner chair that would be small and light enough for me to take it apart and put it in the car when the time came for that. It's a good thing, too, because I would be extremely miserable right now if I was still in that monstrosity of a chair I got from HealthSouth in Charlottesville. The loaner chair serves its purpose, though. It's nice and small, so I take up a lot less space than I did before. That means it's easier for me to push and get around, plus I can fit in smaller spaces that would have been closed off to me before. Plus, it's much easier for people to pick me up, chair and all, and carry me up steps - something that has definitely come in handy!

Late in July my life had a very exciting new development...a new car! I looked into getting a new car to get equipped with hand controls, and I decided (with gas at $4.00/gallon at the time) that a Prius was my number one choice. I asked a good family friend in the car business, Doug, if he could possibly find me one (since they were very hard to get!) and he came through for me in a big way. In two weeks, I had a car! The new car has made a HUGE difference for me, even before I could drive it myself. It's easy for me to get in and out of and has a ton of space, not to mention the fantastic gas mileage! I owe so much to him for finding the car for me and making it so easy!

August brought with it the reality that most of my friends don't live in the Richmond area. They all went off to school (undergrad and grad) or to start real jobs, leaving me with a little less of a social life. I still managed to have some fun, though. Crystal and I went to Annapolis in the beginning of September to visit with her brother Kurt and his wife Louise. I had never been there, so I enjoyed touring the Naval Academy and exploring the city a bit. I also went to Jack's father's wedding with my mom later in September, which consisted of a lovely dinner at the Commonwealth Club on Friday evening and the service followed by a lunch at CCV on Saturday.

At the end of September, I had my first driving lesson at HealthSouth in Richmond. I went in expecting to just complete a written/mental/physical evaluation in preparation for the actual driving, but the occupational therapist didn't think that was necessary and had me in the car the first day! Needless to say, I was very nervous. The car was equipped with a lever to the left of the steering wheel, a spinning knob on the wheel itself, and another smaller lever attached to the blinker. To accelerate, I had to push down on the main lever. To brake, I pushed forward. When I was in a small space (like a parking lot), I had to use the knob to turn the wheel around with my right hand, since my left was occupied by braking and accelerating. The other level exists so I could operate the blinker and headlight switch with my right hand as well.

This isn't the view from inside my car, but that should give you an idea of the gas/brake lever and the spinner knob. The lever attaches to the back of each pedal, so anyone else could get in my car and drive it without ever having to use the hand controls.

On my first day driving, we went to a big parking lot and I practiced just braking and accelerating and turning around the parking lot a few times. Once I felt comfortable enough not to accidentally run into anything, we ventured out into the adjoining neighborhood and I drove (verrrry slowly) around the neighborhood for about half an hour. By the end of our session, my left arm was sore from being so tense the whole time! I went back a few days later and felt much more comfortable. We started out in the neighborhood and then I actually drove on the real road, going through stoplights and turning and everything! At the end of this session, I felt pretty good about my ability and asked the therapist to give me a recommendation so I could get the controls put on my car. Once I had my car equipped, I was able to practice in Powhatan and driving around town as much as I wanted. About a week and a half later, I went back for my final session and drove for a couple minutes on the interstate, so the therapist could see that I was comfortable merging and dealing with high-speed traffic. After that, I was home free! Since then, I've become as comfortable with the hand controls as I was with the foot pedals before my accident. It's amazing to me how well the brain is able to adapt. Using my hand for the gas and brake feels as natural to me as using my foot did before. The brake in my car is pretty sensitive, so sometimes I think my passengers are a little concerned about my ability, but I like to blame it on the car ;)

Just after I started learning to drive, my friend Kyle and I took a road trip to Chicago. He grew up there and really wanted to go back and visit, and I hadn't been so I agreed to go along. We stayed for four days and had a great time. The weather was unseasonably warm, so we were able to spend lots of time exploring the city. We had dinner at a fabulous steakhouse one night, visited the Art Institute, Sears Tower, and the Shedd Aquarium. It was a long drive there and an even longer one back, but all in all we had a great time.

Later in October, my parents' friends organized a charity tennis tournament for me at ACAC in Richmond. They had a silent auction in addition to the tournament, along with lots of food and drinks. So many people showed up to play in the tournament and just to be there, and they were all incredibly generous! I was genuinely touched at how willing people were to donate their time and money. They ended up raising over $23,000. A portion of that momey went toward the renovation of the downstairs bathroom in my mom's house to allow me to spend some time there and spend the night, and the rest will be used for my rehabiliation and other medical and living costs. My parents and I are so lucky to have so many wonderful friends who are so willing to help us out, especially in the current economic climate. We are more grateful for their help than I think any of us are able to put into words.

Halloween weekend was also Homecoming weekend at UVA, so my friends and I trekked up to Charlottesville for a weekend filled with costumes, football, and catching up. I stayed in a hotel room on the Corner to make life easier when coming home at night and getting to and from the football game on Saturday. Unfortunately our football team lost, but I don't think anyone expected great things from us this year (good thing...). It was so great to see so many of my friends together in one place! Plus, so many people were in town that weekend that it almost felt like we were back in school. Going home Sunday to our new homes all over the country was a rude awakening!

my friend Chase and me at a bar on Halloween night (we opted out of the costumes)

I spent a day volunteering for the Obama campaign in Powhatan the day before the election. I drove pretty much all over the county while my volunteer buddy put flyers in mailboxes reminding people to vote. While Powhatan certainly did not go blue on Election Day, at least Virginia did!

December was an exhausting blur of Christmas parties and Christmas shopping! Christmas itself was a lot of fun. I spent Christmas Eve with my dad, Crystal, and our used-to-be stray outdoor cat Madge (and the possum that has been hanging out around our house, Paul). We opened presents Christmas morning, then I headed to my mom's to exchange gifts with her. Once we were done, we headed up to Bethesda for Christmas dinner at my aunt Michele's house. That evening I stayed in a hotel in downtown Bethesda. Michele had a bathroom remodeled on the first floor so I could get into it and use it while I was at the house, which was incredibly helpful, but there wasn't really a way for me to stay there overnight - no accessible bathroom with a shower and bed all on the same floor. We went to see The Curious Case of Benjamin Button the next day and went to Iota in Clarendon to see my uncle Chuck play in his band that night. Sunday my mom and I headed home. It was really nice to spend a couple days with family just relaxing and having fun, and we all had a great time watching Chuck play.

Crystal's mom came to visit on December 29 and stayed for about a week and half, so the house was much more entertaining for a few days! For New Year's Eve, I went to Washington DC with a few of my friends and had dinner at Olives. The six of us crammed into a hotel room that night and groggily left the next morning. We had an excellent dinner and lots of drinks and of course, a champagne toast at midnight. We also sang our own version of Auld Lang Syne - the Good Old Song - twice. With applause, I'm proud to say. I was grateful to be able to ring in the new year with some close friends...even though it was freezing cold that night!

New Year's Eve dinner

Since New Year's Eve, my most exciting news has to do with my rehab plans. I've been doing a little bit of physical therapy at HealthSouth in Richmond, mostly to learn how to transfer in and out of my chair from the floor - which I've now mastered! That gives me the freedom to get out of my chair and be on the floor, which is really fun.

I met with Kristin Beale and her mom at their home in Richmond last week to talk to them about all the different places Kristin has been to do rehab. Kristin is 18 and a paraplegic at the same level as I am. Her injury was almost four years ago, and since then she has been to San Diego, Baltimore and Ohio, among others, for different types of therapy. Her family has invested in a variety of equipment for their home so she can continue her recovery at their house. She met her personal trainer, Sheila, at Project Walk in San Diego, and Sheila has been traveling with her ever since. They told me all about the places they've been, Awakenings being Kristin's favorite. Awakenings Health Institute is in La Jolla and focuses on mind and body recovery. They offer intense personal training, craniosacral massage, acupuncture, nutrition counseling, and other services. They believe that through all these avenues the body has its best hope of regenerating nerve connections from the brain. Kristin has also been to the Dominican Republic for stem cell therapy, and is going back soon for more. Since starting an intense workout regimen, along with these other therapies, she has seen improvement in her ability to control her hips and gluteals, as well as her feet.

Kristin's mom offered for me to use the equpiment in their house to work with Sheila for a few weeks, so I could get an understanding of the workouts Kristin does and what they've learned at all the different recovery centers. We had our first meeting yesterday, and met again today. She works with my legs to exercise many of the muscles that I no long am able to work, and encourages me to imagine that I am actually the one doing the movements. Even after two days I feel like my body is healthier and my legs are in better shape!

Now that I have some outside input, I'm seriously considering going to Awakenings or Project Walk (or both) to take part in their programs. I would probably go for a couple weeks, getting personal training several hours each day. Project Walk encourages you to bring your own trainer and offers a "Train Your Trainer" program, during which they teach your trainer all the exercises they do. This allows you to stay for just a few weeks, but to continue the same exercises at home after you leave. I think this sounds like the most feasible option for me, so I can get started with a job and looking for a place to live sooner, rather than spending 6 months to a year out in California doing rehab before really starting my life again. Unfortunately, this is definitely an expensive plan, with personal training sessions upwards of $60 per hour and full-week intensives costing several thousand dollars, but the results seem to outweigh the costs!

I'm hoping to find a job in Washington DC if possible, and I may have an in working in Mark Warner's senate office! I'm not sure yet, but that is a very exciting possiblity! I also am exploring the possibility of working for Racepoint Group, the PR firm that I interviewed with before my accident, in DC.

I'm hoping by spring to be working and living somewhere on my own (as nice as it is living in my parents' house...). I'm not sure of the timeline of any of these things yet, but that's what I'm aspiring to do! As you can probably tell from all of my adventures over the past few months, I'm feeling much more independent and mobile. Driving really has given me the freedom to feel like myself again, and I've gotten stronger every day. While I still am not in the best possible shape to be living independently in my chair, I am certainly on my way. At the same time, I'm really excited at the possibility of going somewhere to do some more experimental therapy and learning about all the alternatives to the traditional approach, which is basically just to be good at your life in your chair and have that be as far as it goes. There are people out there who believe that there is more to it than that, and I'm very interested in seeing what they have to say. It's all been a learning experience, to say the least, but I still don't believe that this wheelchair is something I'll be confined to for the rest of my life. Stem cell research and assitive technology research is moving quickly and it seems that it will only be a matter of time before there are options out there for me that don't exist now. We can hope, right? This seems to be the year for hope, and I'm certainly jumping on that bandwagon!

Thanks again to everyone who has encouraged me and supported me through all of this. I'm so grateful and I'm sorry to have waited so long to update you!