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-

Update 3/27/08

We have finally gotten back into a routine with a new schedule. Derek attends Maine Center for Integrated Rehap in Rockland on Monday mornings. This is the same place that he had been going for rehab for the past year and a half. He goes for speech therapy and recreational therapy. When he returns home at noon, I take him to the Camden YMCA and help the therapist give him aquatic therapy in the pool. We have been working on strengthening and simulated walking in the pool.

On Tuesdays at noon he goes to Pen Bay Physical therapy for OT to work on strengthening his hands and getting more use out of them. From OT we go directly to the YMCA for another session of aquatic therapy.

Alternating Monday and Tuesday late afternoons each week, Derek works with
Jill Glover on cognitive work and writing. Thank you so much Jill for all your help.
We also fit in a visit with Dr. Buckley, the chiropractor who has been so generous to donate his time for Derek, on either Monday or Tuesday. Thank you Dr. Buckley.

Mondays and Tuesdays are very busy days fitting everything in so that Derek can attend Project Walk on Wednesdays, Thursdays, and Fridays. Derek started Project Walk three weeks ago. Shannon drives him down on Wednesday so that he can work out from 2:30 to 5:30. They then drive to Dustin's in Marlborough and spend the night. They have to get up early to commute back to Canton to work out from 8:30 to 11:30 in the morning. They again commute back to Dustin's for another night and back to Canton Friday morning to work out from 8:30 to 11:30. They head back home to Maine after that. I encourage everyone to go on Project Walk's website and check it out. The website is www.projectwalk.com Derek loves it and we all feel that it is the best thing that we have done for him other than going to China to try the stem cells. The sad part is that they don't take insurance, so Derek will probably only be able to go a couple of months. I am not going to go into detail about Project Walk because Jill is working with Derek on writing another article to post on the blog with his version of what he is doing in Project Walk.
We have noticed that since we got back from China and started Project Walk that Derek's memory has gotten a little better, but the most improvement that we have seen is his energy level and motivation. He now has the energy to stay up all day and is motivated to try to do things on his own. This is a big improvement.

Keep looking for Derek's article on Project Walk. Thanks for all your support.

Kathy

Derek's story of China

The following is Derek's recollection of his trip to China. He has been working very hard with Jill to remember and write this himself. He hopes that you enjoy it. Derek has started Project Walk, so keep watching for his messages and updates about it.


My dad was doing some research on the internet looking for a place for me to live. Stem cells came up as an option so we figured that we had nothing to loose. My dad found a company in China doing stem cells and bone marrow transplants. We made contact with Beiki. We thought we had everything to gain. Nicole did follow up research to make sure it was legit. My mom made the travel arrangements. We had to get immunizations prior to leaving. My mom and I went to Augusta to get visas. For the next couple of months we packed all my medical supplies, clothes, and some food. We didn’t bring many clothes because the majority of the space was for medical supplies. Nicole brought propel packets to put in water. To help us fund the trip since insurance won’t cover it, we did some fundraisers.
On January 10th my mom, sister, and I embarked on a journey of a lifetime. So we set forth to China for a chance I may get something back from stem cell injections. We flew out of Portland to JFK where we met up with Nicole. We stayed there for several hours until our plane left for China. I was able to find a bench to lie down on and rest. It was time to board the plane for the 13 ½ hour flight. Everything was fine with the flight. Except for the seating, it was cramped. Being our first real international flight we didn’t know that you had to find a row all to yourself so that you get your own to lie down. So there we sat all three of us, in one row, the only people like that on the plane, cramped. We made it there! The food on the plane was horrible; it was rice and beef or fish. Why would you serve something that smells that bad?
We finally made it to China, and they have no concept of handicapped people. They had no isle chairs so they had to physically pick me up and carry me on and off planes. We finally made it to Shenyang Airport completely exhausted, and we met up with Tony, our Chinese interpreter who works for Beike. He took us to the hospital from the airport. Beike is the company that we went through. The trip to the hospital took about an hour. It was dark so we couldn’t see anything.
We got to hospital late, and we had no desire to explore, just sleep. The room was very sparse, not luxurious, definitely no Best Western, but we weren’t there for that. The room came with 3 beds, TV, DVD player, water cooler, hot plate, microwave, card table, two chairs and a bathroom.
The first day consisted of many evaluations: EKGs, MRIs, x-rays, and meeting with doctors. We met with Lucy who’s another Bieki employee who would help us the next month.
The next day we got a good look at the hospital which is huge and only three years old. That day I got my schedule for the month. It consisted of acupuncture and two sessions of PT a day. I had that everyday until my surgery.
I had my first stem cell injection in my lumbar on January 15. After the injection I had to lie still for 4-6 hours on my side so I didn’t get a spinal headache. (A spinal headache is a migraine type of headache marked by severe head pain lasting several hours or more.) I then had my bone marrow taken out and they let that grow for seven days before they injected it in me during my surgery.
The reason I needed surgery was because my spinal cord had adhered to the side wall of my spinal column, not letting my spinal fluid flow freely. I also had a cyst that was putting pressure on my spinal cord that needed to be drained. It wasn’t that hard of a decision because I knew if I didn’t have the surgery the stem cell injections would be for nothing.
Before my surgery Nicole went to Beijing to see her long time friend Whitney who now lives there and teaches English with her boyfriend. They got to catch up. She took Nicole to lots of different places like the Great Wall. The Great Wall is so high up there is little oxygen. You can’t even use a lighter. I gave her my camera to take pictures for me. She ended up having Whitney’s boyfriend take the pictures because the wall was really steep, and Nicole is afraid of heights!! Whitney was able to get us some good American food. Whitney came a few days later to visit us. It was nice having somebody around who spoke Chinese. Nicole came back the day of my surgery.
We were there for ten days before the surgery. So I had the surgery, and it went fine. They put me under so I didn’t remember it. After the surgery I had to stay in the ICU for two days with no food or TV and only visitors twice a day for a short period of time. Thank God I was only there for two days. After those two days I went back upstairs, and it felt real good to be back there.
When I went back to the room, I had to stay there for ten days with no therapy or acupuncture. That was extremely boring. We watched a butt load of DVDs. Ben and Paul, two Australians who were there having stem cells organized an outing to go to the Antique market to buy cool old Chinese artifacts. Mom and Nicole went with them. They went to Strange Slope which is a hill that pulls you up backwards. I wish I had got to go but I was still laid up. They also had a traditional Chinese lunch.
The last week was the beginning of the Chinese New Year. They set off huge fireworks for ten days straight all day and night. It was pretty for the first few days then it got annoying. It sounded like a war zone. During the New Years everything shuts down. The reason why we got therapy during the holiday is because we made fuss. The only people who got therapy were Beike clients.
Everybody goes home during the New Years to hang out with their families.
Lucy the Beike employee went home and celebrated the New Years and made dumplings and set off fireworks. When she came back she brought us dumplings, and they were real good. We asked what was in them but she wouldn’t tell us what meat was in them. They tasted like sausage but maybe it was dog.
It took us some time to pack because we had a lot of stuff, but we left a good amount for others. That’s what you do is leave stuff for others.
We met some pretty neat people there, two guys from Australia who were there by themselves. They were two strong individuals who came there by themselves. There was a Canadian couple and a family from Arkansas as well. When we left we gave them stuff that we didn’t want to bring home.
The day finally came and it was time to go home. The trip home took 31+ hours. It seemed like forever. We had some major layovers, but we made it back. Nicole went her way at JFK. It was nice coming back, and I got my own row to lie down.
When we got to Portland, my dad met us and took us home.
So far I haven’t seen too much from the stem cells, but they say to do really intense therapy and give it six months to see what you get back, so now that’s what I am doing.
Thank you Nicole and Mom and many others who helped.

Message to Elizabeth

Hi Elizabeth,
We would be happy to exchange information with you about China. You can email us at
obandsons@roadrunner.com and we can exchange phone numbers. Thank you for the well wishes.
Kathy