Last Updated Oct 2012
Track Jake’s progress
The Beginning-September 2010
After having surgery at Johns Hopkins Hospital in Baltimore, Md., Jake spent five days in the intensive care unit and then six days on a regular floor at this preeminent hospital.
He was then transferred to Magee Rehabilitation in Philadelphia, Pa., one of the nation's leading rehabilitation programs for people with spinal cord injuries. Jake is working hard every day, undergoing intensive physical and occupational therapy. He is making progress, but has a long, hard road ahead of him.
As it looks now, the doctors expect Jake to remain at Magee Rehabilitation Hospital until sometime in December. Then, he will begin out-patient therapy.
Jake and his family know that everyone is anxious to hear how he is doing. Updates on his progress will be posted here on a regular basis. Keep the prayers, support and positive thinking coming!
Click here to see Jake's 2010 progress and personal notes
Click here to see Jake's 2011 progress and personal notes
Back on track with the Project Walk program
Sunday, October 21, 2012
As most of you know I recently returned home from 5 weeks of intensive therapy at Project Walk in California. The program was very helpful and taught me a great strengthening regime to take home. Ever since I returned I have been looking for local gym and trainer to continue what I had learned and apply it over a years time. While I did have a good initial physical reaction from my stay at PW, the program really needs much more time to work. A good friend of mine, Margaret Duprey read my last blog and instantly contacted me as she wanted to introduce me to her gym. She set up an interview with the owner of Mitch's Gym
in West Chester Donna Markley. Donna was enthusiastic about helping me and paired me up with her head trainer. After a few workout sessions I knew I loved the gym and singed up. Donna offered me a free gym membership. Mitch's Gym, named after Donna's brother who has Downs Syndrome, has a mission to give back to the community. Margaret then offered to sponsor the cost of my personal trainer Doug who I will see three days a week. This gym is top notch and I am thrilled and relieved to both be started back into my training but also to not have the stress and burden of the cost. Doug and I are figuring each other and the PW method out right now, but I am very upbeat about what the next six months to a year will yield! I am again so grateful for this wonderful community we live in.
A month at Project Walk August 2012
I just returned from a very productive month at Project Walk
in sunny southern California. It was a great experience, everything I had hoped for. I went to therapy Monday, Tuesday, Thursday and Friday for 3 hours each day. I was assigned some great therapists who were very creative and pushed me hard. My goal was to strengthen my core muscles around my mid and lower torso. The reason behind this goal is that I would obviously be a lot more functional if I could sit up and balance without the assistance of a seat back or supporting myself with one arm. The therapy was customized to my goal and we were able to isolate and target quite a few of these important muscle groups. We were able to establish connections that I think had been dormant. A month is not enough time for any significant muscle building but I definitely made some muscle gain and even felt soreness in muscles I haven't had sensation in since the injury.
After two weeks I was even able to pedal an upright stationary bicycle using my hip extensor and lower torso muscles. To be honest this surprised the hell outa me! The first time I did it without assistance I thought the therapists were playing a joke on me. In general my therapists were very happy with my months work and said they saw significant progress.
Of course they are paid to say this but I'm just gonna go with it. I wish I could have stayed on longer as most of the clients do 6-12 month stints. One client I had met when I visited in March who had just started then, was now walking with a walker 6 months later. It wasn't pretty but he was grinding away at it. Of course everyone responds differently.
On my last day I was given a home program and I am looking for a trainer and a local gym that I can continue my new workout regime with. If I can find the right trainer and get on a regular schedule I would expect to be able to continue to build the muscles to the point where they can support my upper body once again. This is my continuing my six-month goal.
I was very fortunate to be in the best health I've felt in the last two years. I was so worried that I would get out there fighting a UTI or something stupid while trying to train. However I was feeling great and was able to give my therapy everything and have some energy left over to enjoy my surroundings. So I made the most of it and did my best to burn the candle at both ends. The first thing I did when I got off the plane was hit In And Out Burger for lunch. This is kind of a new tradition for me. Second, for dinner I went in search of the "best" fish taco So-Cal could provide. It took me 5 weeks and 40 tacos but I eventually found it! While we are on the food topic I just want to rub it in a little, that my neighbor brought me fresh picked tree ripened avocados every evening. One word "creamy". Yes you can hate me now…
The Del Mar racetrack was just down the road and I spent quite a few days there. It's a beautiful track right on the ocean. The meet only lasts a month or so and everyone in the business loves it because even though they're working its like an extended vacation. The atmosphere is just great and the stands are packed every day with all types of people! One thing that really surprised me was the purse money. Heck they would have three graded stakes on a Wednesday! I was also lucky enough to watch the Million Dollar Pacific Classic. The winner Dullahan looked so impressive in the paddock its no wonder he won. His energy and strength was just oozing out of his pores, he certainly is one healthy handsome guy.
I also had a chance to go jet skiing and sea kayaking. The Jet skiing was awesome and something I could do without assistance. Many of you have already read my remarks as to the fact that I quickly discovered, with the throttle pined down going 45 miles an hour through heavy chop that I had not lost the ability to scare the crap out of myself! Aww… what a good feeling that is… Sea kayaking was a different experience however. At this I completely sucked. Lol I wasn't 50 yards away from shore when I just simply flopped overboard without the slightest ability to even try to save myself. After two failed attempts to be a part of my tandem paddling team, I decided to just hold onto the boat and let my poor partner do all the paddling. In all fairness though I think it was just as exhausting for me to hold myself in the boat, as it was to paddle it. We were in La Jolla, which is a protected marine sanctuary. It was teaming with wildlife and is noted for a unique coastline perforated with cliffs and caves. Our tour guide allowed us to paddle into one of the caves and it was full of sea lions. Out in the open water we had a 4 ft tiger shark swim directly under us. Now that was a different kind of thrill altogether…
Another great highlight was being invited by Kristy Cecil to be a member of the live studio audience at a taping of this falls new season of The Big Bang Theory. I had no idea shows were still taped like this, and believe it or not there were no signs prompting any kind of response from the audience. The audience laughter you here in the background on the show is real honest to God mirth!! After the show I got to meat the cast and even play in the shows set of the international space station…
Now it's back to reality. The weather is beautiful and I'm excited for fall. Racing will start again soon and there are a lot of great community events coming up. Work is going well and it just feels good to be home.
Summer 2012 Update July 16, 2012
I have been pretty busy over this past spring. As many of you know I was given a John Deere Gator, which was modified so that I can both climb into and drive it on my own. It's been like a little piece of freedom. It has allowed me to get off the pavement and back into the fields and woods I love so much. I took it to most all of the local spring races where it not only gave me the ability to see the races properly but in most cases I was able to volunteer as a shuttle driver for the jockeys and officials. At two races I was even able to do the job of stable manager. It feels very good to be useful. I enjoy being an active participant verses a spectator, and it allows me to give back to the racing community after all support it has shown me. Fergie my dog also loves it as it allows me to take her running in the fields.
While I have not experienced any more progress in regaining use of my body I have gotten a lot stronger in the areas that continue to work. This has made my daily living a little easier. I continue to work out at the gym 3 days a week and now have the use of a recumbent handcycle that I can peddle with my arms. I try to take it down my road 2-3 times a week as well. Fergie also loves this!
In a very big move recently I cut my care giving help to between 3-4 hours a day down from twelve hours when they used to spend the night. This gives me a little more sense of privacy and independence. It hasn't been an easy transition but an inevitable one that I know will get smoother with time. What can be really annoying is when I get all settled down and tucked into bed and then realize I have left the kitchen light on arggg.
I just took my first vacation since my accident. I flew to England to visit my old fox hunting buddies and see the racehorse training Mecca's of Lambourn, and Newmarket and take in some racing at Newbury and Royal Ascot. Ascot was an amazing experience and I was lucky enough to witness Frankel win his race. Frankel is considered the greatest actively racing horse in the world, and is sure to go down in history as one of the best of all times. Unfortunately I contracted another UTI before leaving and my health was poor throughout the trip. The plane ride went surprisingly smooth and the accommodations were great. I was so nervous in anticipation of the trip and the thought of leaving the comfort and safety of my adapted home that I almost canceled at the last minute. I'm definitely glad I didn't and will be more confident the next time. This is of course frustrating because it is not in my personality to be so freekin timid.
Its funny but even as I get stronger and more independent I have found that I am more depressed about my situation. I just get so sick and fed up with it all. I always put on my smile whenever I go out but it really has been eating me up lately. I guess the stronger I get and the more I can do, I think about the even more I can't do. With the increase of strength comes an increase of my personal expectation and desires. Some days when I'm feeling my best I'm just happy that I feel good and nothing is bothering me like for example the dull tingling sensation of my butt that feels like an arm which has fallen asleep. But some days when I'm feeling good that energy just makes me want to get out and do something awesome. In June when my seasonal workflow lightened up and the racing season abruptly ended my idle mind started torturing me. I feel like every day is a fight between my brain slogging it out against my body. I just want to get out! I hesitate to write this but I have also been having some difficulty with my bowel management. This has got to be the worst part. When dealing with it, it makes me boil with rage and then I just feel so defeated and exhausted with the saga. I swear being stuck in the chair is not even the half of it. Of course like anything I try to remind myself that its just a phase its just a cycle.
That being said I am still marching forward. I have signed up for a 1 month long intensive therapy course called Project Walk (projectwalk.org). I will be traveling to Carlsbad California with my caregiver for the month of August. I do not expect any miracles but if they can help me to get a little stronger and to understand how to use my body better and get more out of it than it will have been worth it. Unlike conventional therapy that focuses on what works, PW focuses on what doesn't work and tries to wake it up through physical manipulation. They believe that with stimulation the muscles motor memory function can be triggered even if the brain is not sending the signal. It will be like boot camp and I would be disappointed if the trainers don't kick my ass. Another neat aspect is that all the other patients will be mostly injured athletes with positive outlooks, hopefully creating an infectious positive, motivational and inspirational environment.
This trip will not be cheap it will cost in the neighborhood of 20k. I have done a lot of research on this program and weighed the cost benefit of this and feel that it is justified. I am just under my two-year mark, which is considered the window in which one makes the most recovery. So I feel that in light of this I should give it another big push.
Financially my medical trust stands right around 100k. While we still continue to do fundraisers it is not at the same level as in the beginning. I use the money to primarily pay for my caregivers and some medical expenses. It is something I worry about. I need to make the 100k last as long as I can while continuing to cut my care costs. So far things are going in the right direction. One last major goal I have is to renovate my kitchen. Now that I have cut my caregivers down so much I do all of my food prep. Because of my kitchens design I find that I have to cheat a lot. I'm not proud to say I use the microwave and eat take out way to much. This is not my style as I have always cooked for myself and believe in a healthy diet. When I was in England I stayed four nights at the Oaksey House part of England and Irelands' Injured Jockeys Fund program. They had an adapted apartment designed by a wheelchair user that had an amazingly accessible kitchen. I took lots of pictures of the kitchen and hopefully I can recreate one for myself. At my current financial burn the money in my trust will last about two more years. If I use some of those funds to build a kitchen than that time frame will be shortened. This is why I am so grateful for everyone's continued financial support. It is of course my goal to one day hopefully sooner than later be completely fiscally self-sufficient. How long that will take is still a bit fuzzy. I thought about just getting a wife instead of renovating my kitchen but after further reflection I decided that that would much to complicated.
Looking forward, my belief in a stem cell cure is weakening. The more research I do the less optimistic I become. If you asked me today when a possible cure could be available I would say between 5-100 years and closer to the latter. The work done so far while successful in some animal trials has yielded nothing in humans and has hit a lot of dead ends. There is some promising research and technology out there but in the bigger world of medicine and finance there just isn't that much interest in finding a cure for paralysis. I believe it could easily be done but that it is simply not a priority in the global world of science.