Sorry for the lack of updates - my daily routine has been pretty repetitive .
I have just been trying to figure out where I want to go to school and what I want to do with the rest of my life . I think I have figured that out- I would like to major in New Media at University of Maine Orono and long term would be to work for a disability magazine doing digital design work.

In October I went to the Kennedy Krieger spinal cord injury unit in Baltimore, MD for two weeks of out patient therapy. While I was there they put together a home exercise program for me. They do a lot with electric stimulation and they use an FES bike a lot . I would love one of those. It is a bike that sends electrodes to your muscles and makes them contract. Kennedy Krieger's philosophy is that they want your muscles ready for the cure when it comes. Because when there is a cure for somebody 20 years post injury who has not kept up there muscles the cure would be use less for them. My mom and I stayed with Nicole & Neal at there house - thank you!

While I was there I met with old college friends and family and others it was awesome seeing all of them. One thing I wanted to accomplish while I was there was to eat at my favorite old eateries. Which I definitely accomplished! One of the weekends we went to Catholic University it was nice to go back and visit.

I got approved to drive so that part is done now I am working on getting a car. I would like Honda element that would be ideal - they are a lil expensive but no more than a van and they are much cooler.
I worked with Jill on my UMO application and got that done. UMO seems like it will be a great place for me and when I went for a visit everybody seemed really nice. There are a few things that I will need before I go the. I will need a new computer and cooking equipment to live on my own. My mom and dad made the trip with me to Orono.

I now work with Meredith Ralston . She helps me do my home program that was sent home with from Kennedy Krieger. Sometime soon Shannon and I are going to Tuscan to visit friends that live out there I can’t wait.

I designed a brochure show casing my photography work - Mark helped me out a lot with that it came out really nice if do say so myself.
For all you crazy Polar Bears out there: Peter Roper is organizing the 4th Annual Polar Bear Dip to benefit Derek O'Brien at Lincolnville Beach on New Years Day at 12 noon . Don’t be late. It only last for a few minutes and it is a sight to see even if you don’t go in. Come watch. Peter Roper can be contacted 236-0074 (home) and 338-7526 (work).

Bye - Derek

Back from Shake

Camp was great did so much, Ropes Course, Hand Cycling, Kayaking, Red Sox game. At the game I got lost with Dave, a trainer that works for Shake, we ended up getting lost in a sky box seat. It was sick. We got so hooked up.

They wanted to go Kayaking again but I was all set since we already done that so I had a plan to go to Fox Woods. I organized it and it happened. It was an awesome trip. I played three card poker. I love that game.

Matt B., Walter and I went to the ABC which is an outside bar on the weekends. The place is happening. I learn so much from others each year- that's my favorite part about Shake. A mentor Walter order me a set of Ds Brakes. They are a set of amazing brakes and are guaranteed to never move. They're like having a set of crossed drilled rotors.

I worked really hard on making my morning routine independent. I think I have solved some problems. It was great working with Carrie since we hadn't worked together since Spaulding.

Now I need to start thinking what my next step will be. I really need start thinking about Dustin's wedding. I need to see about the Kennedy Krieger Rehab place before I start thinking about school. We will see.

Bye Yall

Update from Camp

Hello everybody!

Everything is going very well down in Newport. Time is really flying by!

So far we’ve done some pretty awesome recreational activities such as kayaking, hand cycling, going to a rope course, and going to a Polo match. This year I successfully went out in a kayak without tipping over! As for hand cycling, it was a gorgeous day down at the park and we got to test out various hand cycles. Also, this year we got to enjoy the ropes course again. We went on two harnessed activities in which we were pulled up by staff members and brought to a height of 50 feet. It was a great feeling being lifted out of our chairs. Lastly, I went to my first Polo match between Scotland and the US.

During our free time, I have been able to hang out with old participants and meet new ones. We have gone to many restaurants and bars since being here. This year I’ve had to find a happy medium between socializing and being independent. Although we go out to eat a lot, the weekend brunches here are the BEST because Shirley, the house cook, prepares us any food we would like from breakfast foods to lunch foods.

At camp this year, I’ve been very fortunate to work with amazing therapists. For example, it’s been great working with Carrie, my old PT from Spaulding Rehab in Boston. She has not seen me since rehab. The changes I have made have been astronomical! She is very knowledgeable at what she does. This year, some of my main goals include working on making my morning routine independent (from getting up out of bed to going to the bathroom to getting dressed). It’s been going well. I have found that the key to a successful morning routine is problem solving. With Liz’s help, a newly graduated OT student from Boston University, I have made some great modifications to my manual chair. She made it possible for me to insert my side-guards that protect my pants. The best thing about being at Shake-A-Leg is being able to learn tricks of the trade from other participants. You really find out what works and what doesn’t. For example, there are participants here who are working on transferring into and out of their cars! There is a fellow participant who has a Volkswagen Rabbit that has been modified with hand controls, etc, that allow him to drive. The car has been tricked out with rims and it looks pretty SICK! Furthermore, a former participant showed up the other day in his Acura NSX sports car and showed us how he transferred in and out of it. By looking at it, you would never know it was an adapted car.

Sorry for the lack of updates, but I have been extremely busy. Thank you for reading my blog! When I get home, I will be very busy with my brother’s wedding and reapplying for school in Portland, Maine.

Derek

June 16, 2008

June 16, 2008 update

Project Walk changed its name to Journey Forward. I went to Journey Forward for two days last week with my mom. We stayed at a hotel instead of Dustin's because it was closer and easier. My ultimate goal is to go back there when I get home from camp.

Yesterday with Shannon and Laurie's help I was able to attend a massive fundraiser for Journey Forward in Dedham, Massachusetts. At the fundraiser I was able to sell my photographs that my grandmother and mother helped me prepare. I did very well. I still have left over photos that I am planning to sell at the Bagel Cafe. There were many pieces of sports memorabilia sold, and movie memorabilia too.

Thank you to Shannon and Laurie for driving me down.
Thank you to Pat and his wife. They showed up at the fundraiser.
Thank you Dustin and Mackenzie for showing up.
Thank you Morgan for taking care of me this weekend.

I have been packing for Shake-A-Leg all weekend. I leave for Shake-A- Leg tomorrow morning. I will be there for a month. Shake-A-Leg requires me to pack for a month--clothes, supplies, and many other items.

When I return from Shake-A-Leg I will begin the process of applying to the Photography Department of the Maine College of Art in Portland. They require 20 pieces of artwork done within the past year for my portfolio. The hardest part is not finding 20 pieces, but determining what 20 to choose. You want a variety of images from portraits, to landscapes, to still-lifes.

With the help of Jill Glover, I hope to do updates from Shake-A-Leg. Please make me feel loved and send me lots of mail while I am at camp. My address is:

Shake-A-Leg
Attn: Derek O'Brien, WLT PARTICIPANT
P.O. Box 1264
Newport, RI 02840

Update 6/9/08

June 9 2008


I started Project Walk right when I got back from China it’s the best thing I have ever done but the worst part is they don’t take insurance. Project walk didn’t care to expand so the Canton board decided to turn it into a new company called Journey Forward. They are hoping to decrease their prices by doing the name change and a large fund raiser. The fundraiser is on Sunday, June 15, 2008, 3 pm to 9 pm location: Moseley's On the Charles, 50 Bridge Street (Rt. 109) Dedham,MA 02026 for more information , call 866-680-5636, attention Dan Cummings, there will be some unbelievable things. Like there are going to be celebrities, and many live and silent auction items. The very awesome silent auction items are as follows: 2 VIP tickets and backstage passes to Bon Jovi, meet and greet with Curt Schilling at Fenway Park, plus 4 tickets, 6 pairs of Celtics Tickets (2009) Manny Ramirez Autographed Bat, TomBrady's signed Patriots's jersey Mike Lowell signed jersey and many many other good things.
They are allowing me to have my own table to sell my pictures. I have been really busy getting pictures ready, matted and framed, with the help of my mother and grandmother. Shannon will drive me down on Saturday to the fundraiser. I have been doing Project Walk for the last 3 months but I can’t go for much longer because they don’t take any insurance. I do Project Walk for 3 hours a day on Wednesdays, Thursdays and Fridays intense physical therapy “training." They said when I got back from China to do really intense therapy this is filling that need. Since attending I have become really strong in my upper body and have got some feeling in my legs.
We stay at Dustin and Mckenzie’s house, they aren’t that far from where it is, about one hour. I would love to continue because it is the best thing I have ever done. I know it works because there are people there who are walking, taking steps.

On Mondays, I still attend the YMCA for pool therapy.

Once a week, I attend hand therapy to work on my left hand, strength. And I am going to Dr. Buckley’s and he works magic.

On June 17, I go to Shake A Leg for a month in Newport, Rhode Island. While I am there I will do various therapies and I learn so much from others and their experiences. I will be bringing down the Ibot wheelchair to Shake A Leg.

My address at Shake a Leg is:
Shake a Leg
Attn: Derek O'Brien
WLT PARTICIPANT
P.O. Box 1264
Newport, RI 02840

A few weeks ago I got my manual chair fixed. It desperately needed it after my trip to China.
I got brand new castors, brand new back rest, brand new brakes; brand new tires that won't go flat, and new push handles. It feels like a brand new chair it really needed the work. I had out grown it. My needs have changed but my chair hadn’t changed. I will try to do an update at Shake A Leg if you want more information about the fundraiser you can email me at dobball40@yahoo.com. BYE

Shake-A-Leg

Shake A Leg is a camp for people with paralysis. There is one in Newport, RI and Miami, FL. I attend the one in Newport. This is my third summer attending, I will stay down there for a month from June 17 to July 17 at Salvia Regina University on their campus. When we are down there we stay for a month. We stay in the dorm rooms usually by ourselves. Usually the first day is set for getting to know everybody.
Breakfast is always in the common area, and there is no set schedule for breakfast because everybody is doing different things. Lunch is always at noon in the cafeteria on campus. Dinner is at five everyday at the dorm, and it is brought to us.
We do various activities sailing, aquatics, cooking, PT, OT, recreational, life skills, outings, a regatta, counseling, Rolfing, reiki and yoga and many other things.
Sailing is done in Newport Harbor once a week on little JBoats. Newport Harbor is gorgeous and is always loaded with beautiful boats. In our boats you can fit 5 people in each boat comfortably.
Each week we do aquatics. It is done at a local Boys and Girls club. We go in small groups so we can have at least two therapists to one client ratio. When we are there I do various exercises in the water like weight bearing, arm exercises and other things. We do this once a week.
Every Friday consists of a cooking group. We cook a meal together and that works on our dexterity. It’s a good time; we get to eat it after make the food. When cooking we get to use various adaptive cooking devices. Each week we have different themes such as pizza day and many others. We talk about nutrition facts of the different foods.
Every week we work on PT two to three days a week. We do various sitting balance exercises to help strengthen my core, as well as mat work. We do work at their gym to help strengthen our muscles in our upper body.
In OT we do a lot of work when it comes to dressing, bathing, etc. and we work on different techniques. They helped me learn how to tie my shoes. They have all the toys. Adapted tools like button hooks, shoe horns, sock aids, etc.
The recreational activities consist of various wheelchair sports like wheelchair basketball, hand cycling and other chair sports. They like to expose us to a variety of different sports out there.
Various life skills are taught to all clients. They teach us how to adapt to life in a chair. They teach us ways to live independently. They do that by bringing in others that give their own personal experiences in living independently. You learn the most from others and their experiences. Their advice is better than what you learn at rehab.
The outings are always a good time. We go to a Red Sox game. It’s always a good time. We went last year. They are no green monster seats but they’re still good seats. We go to a local ropes course. That’s always a good time, and we do a couple activities there. It’s nice getting up in the air out of your chair. The outings are really fun.
Each summer we do a regatta. It’s a two day regatta on 30+ ft boats. These are world renowned race boats. It’s fun being on race boats even though I’ve never understood how it works. I personally think we are all winners. At the end of the regatta there is a large fundraising dinner where we all come together dressed up.
We also do various therapies that aren’t traditional such as massage, rolfing, reiki, and yoga. These therapies are as important as the others because they bring each person a sense of peacefulness. There is a 3: 1 therapist to client ratio. This provides us with adequate amount of attention.
Its great being in downtown Newport because it makes going out really easy and fun every time we go out. It seems like there is something going on every night. We usually go out in a large group. We go to a place that is very accessible because it has a deck outside.
Shake A Leg is the best place for people with paralysis. There really needs to more places like it out there.

Project Walk- Derek's Update

Where do I start? Project Walk is the best thing I have ever done. Project Walk is a really intense physical therapy program, like nothing I have ever done. It’s great. I feel if I am going to get anything back it is by going there.

There are currently three locations California, Seattle, and Boston. I really want to go as long as possible, but they don’t take insurance so I am not sure how long I can go. I will go until I can’t go anymore. Hopefully, I can go longer than shorter.

I learned about the Boston site through their web site. The guy who started the Boston site is named Dan. He is a pretty amazing guy. He can walk now with a walker. Before he did Project Walk in California, he had very limited movement in his hands and was confined to a chair, but with hard work and determination to get out of that chair he made it. Dan got hurt diving off a boat into shallow water and broke his neck. He did all the traditional therapies with minimum success similar to me. He knew if he was going to get better he would have to do intense therapy. That’s when he decided to go to Project Walk in California, and he went there for 5 years. But now he is out of a chair, living on his own, and driving. Even though he can walk now he still works to maintain what he has gotten back and to get stronger. He still has minimum hand strength but enough to live on his own. He is a really good motivator because you can see there is light at the end of the tunnel. Dan is at the Boston site everyday. He is a liaison for prospective clients.

We made contact with PW before China to make sure I could go there when I got back. Bieke Biotech said to get intense therapy when I got back from China, and this definitely is intense. So when we got back we didn’t waste any time getting in touch with them.
The hardest part is finding funds for it. They do not take insurance because they don’t want to be regulated on what they can do. They know some people take longer than others and insurance companies want to see instant progress. At PW they know that some may progress faster than others.

I had to have a bone density test done before I started because they do a lot of weight bearing exercises. I did that at home around here. That wasn’t too invasive on me.

The next step in the equation was how would I get down there and where would I stay? It is very convenient that Dustin and MacKenzie live near PW, 45 minutes away so we would stay with them. To say thank you for letting us stay with them, we bring them down dinner. With Shannon’s help, she drives me down, takes care of me, and takes me to PW. It works out great.
I am at PW for about 3-4 hours, 3 days a week. When I am there it is non-stop from the beginning to the end. They don’t give your muscles too much time to relax. They like to keep them fired up.

I do many different exercises there. They do a lot with your core because you need your core to walk.

They have an FES bike which is a bike that helps move your legs with electro- stimulation. Your legs feel fatigued after it. I also use their power plate. It is a machine that sends an intense vibration through your whole body. They get me standing on it to get full potential out of it. The Russian astronauts invented it so they would not loose bone density while in space. It’s a pretty awesome machine. I do a lot on their total gym. The total gym is a board on an incline so I can lie on it and do leg presses. We also do various core exercises because you need that to walk. I do the hand bike, but I do it standing so it is much more intense. We do various mat work exercises, the standing frame, and many other things.

There are thirty-seven people in the program currently, people who go there and also people doing the home program. Everybody is in different stages.

I see some of the same people each time and some new ones. There was a client there who was going to China to the same hospital I went to so he had a bunch of questions for me.
I’ve meet some pretty neat people. There is a girl there from Pennsylvania. She was in a car accident, and her goal was to walk down the aisle for her wedding. She was able to walk with leg braces under her wedding dress. She said there was not a dry eye in the church. She has a Newfoundland as a guide dog. There was a guy at Shake A Leg, who has a dog, but it’s no Newfoundland.

I am going back to Shake A Leg this summer. I can’t wait. I am so excited. It should be a good time. I will keep you informed on how things are going.

Bye –D-