Surfer's Myelopathy Recovery Update: August 2007

The past month has been so exciting with all of the improvements and recovery that we have seen!

FATHER FERNANDO
On July 13 (soon after I wrote the last post), Tita Fe (Jeff’s aunt, sort of my aunt too) insisted that we meet up for lunch and to attend a healing prayer from a Filipino healer. So my dad and I hung out with Tita Fe and we went to lunch at a Sushi restaurant and then went to a religious convention in Burbank. First we attended mass in the auditorium. Immediately after the mass, Father Fernando Suarez had a “healing session”. He spoke for about 30 minutes and then started going around the room touching everyone and quietly praying over them for a few seconds. It was like one of the shows you see on TV. They had “catchers” there catching people who would fall right when Father Fernando touched them. He started with the handicap row where I was and proceeded to touch my forehead.

From stories I had heard, with Jesus’ intervention through Father Fernando’s touch alone, sometimes the blind could see, deaf could hear, mute could talk, dead would come alive and crippled walk.

The moment he put his hand on my forehead and shoulder, my legs spasmed out and began to shake furiously. It was at that moment that I got a sense of divine peace and heard in my head, “In God’s time…” Although I was at this healing mass and Father Fernando touched me (with no guarantees), I cannot do anything to expedite or change God’s intentions. He has a plan for me and hopefully He is using me and will use me as a tool to do good things. If I walk (and hopefully I will), it will be in His time, when the time is right. After asking me if I had noticed any immediate changes, I told him that I felt my hamstrings and gluts spasm for the first time. He then smiled and said, “I will be praying for you,” and went to the next person. Father Fernando also touched and prayed over my dad and my aunt. Tita Fe actually collapsed when he touched her, triggering the catchers to gently place her on the ground. Father Fernando said that each time someone collapses, they are “resting with the spirit”.

As we left, we all felt relaxed and I shared with my dad and aunt that I felt that I would walk again, if it’s God’s will, in His time.

You can check out more on Father Fernando at: http://www.fatherfernando.com/

IMPROVEMENTS
Each day that passes, each day at Project Walk, I get better and better. At first I downplayed some of the improvements mainly because some of the movements weren’t coordinated or graceful or easy. And they were so simple. Or at least used to be so simple and easy. But Ivette really helped me realize that each improvement is such a big step. She reminded me of my poor condition and limited mobility in rehab and where I am today. Each small movement, each small sign of improvement is a big deal. Project Walk has been going so well that I went 4 days this week (I usually only go 3). My parents usually come down with me on Mondays and Ivette usually comes down with me on Tuesdays and Thursdays. It means so much to me that they make the huge sacrifice to come and support me all the way in San Diego, foregoing their normal day. It’s always exciting too when I do something new, someone is there to celebrate with me.

Also note that each of the listed improvements happened AFTER I received the blessing from Father Fernando. Coincidence? I think not…

-Squats
It all started when during therapy, I was actually able to do somewhat of a horizontal squat. I was on a machine and I was lying on my back. I was able to bend my knee and push up. Albeit only a few inches, I was doing all of the movement myself! Since then, I have progressed to doing the same motion while inclined.

-Lift leg on bed
One night, I was lying in bed and my right leg fell off. I tried to lift it back onto the bed, and it worked! It wasn't necessarily graceful or extremely coordinated, but somehow (not sure what muscles or anything), I was able to have my right leg off of the bed and somewhat lift it up onto the bed. I first tried the same with my left leg and it didn’t work. However, a few days later when I tried it again, it worked with the left leg as well.

-Crawling
At Project Walk, they had me crawling. I did really well. It again wasn't the most graceful or coordinated of movements, but I was able to crawl a little bit, forwards and backwards and side to side. My feet drag a little bit, but again, more balance, more control, more strength…

-Medical procedure (and standing frame)
At the end of July, I had a diagnostic medical procedure at UCLA and they put me under general anesthesia for more than 2 hours. The results came out negative. I was out for the next few days. The same day that I had the procedure, my dad, James and Ivette put together my standing frame that my parents ordered for me! We kept on (and still are) fighting with insurance to get this equipment funded, but we could not wait any longer because this equipment is too important, so my parents graciously purchased it. It’s a mechanism that helps me safely stand straight up rather than sitting in the chair all day. It really opens up my hips and puts weight on my legs and feet.

-Walking in water
I was able to walk in water…sort of. Ivette and I went swimming. Dr. Flores supported my knees so they wouldn't give out and I held onto her shoulders for support. It was pretty difficult but I was able to lift up my leg a little bit and move it forward. And then the other one. Moving them forward was not that difficult actually; it was getting my leg to lift so that my foot wouldn’t drag. However, that was very weak and most of the time my foot dragged forward. I think most of it was coming from my core, gluts and hips. That's what Ivette said she felt firing as well. Also, Ivette's mom, Lisa, was watching from out of the water and she said that she could see me moving my legs too. Ivette also said that she could feel some power against her leg when I was moving mine meaning they weren't flaccid movements but actually had “oomph” behind them.

-Free standing
Last week, one of the trainers, Dave, tried some interesting things with me. It was my first time being paired up with him. On Monday, he had me standing at a bar with him and an assistant supporting my knees and hips. But I was standing without holding onto anything! He then alternated bending my legs and I started swinging my arms. For a brief second, I felt that I was sort of walking again or that I could actually walk away from that exercise. Then starting on Wednesday, Dave got a little more creative. I did so well at the bar, why use a bar? So I stood up only with his support! I was free standing. He was still somewhat supporting only my knees and hips, but not as much as the previous time.

-Walking with walker
On that same Wednesday, he said, “We need to get over there… Want to walk over?” At first I was thinking he was crazy and had no idea what he was thinking of, so I said, “Sure,” just to see what he was going to do. He went and got the walker and then brought about 4 other trainers to help him as well. So he helped me stand up and I held onto the walker. The other trainers supported my hips and knees and then bent my legs for me. I was able to go from one point to another (albeit with the trainers moving my legs)! I used the walker again on Tuesday this week with only 3 trainers helping and I did a lot better. Then today, we tried walking again… this time with only 2 trainers. It was the smoothest one yet! Everyone at Project Walk is amazed at my progress and I’ve been told that I’m the “talk of the town” because I only started less than 2 months ago and have improved so much. I remember when I first visited Project Walk and saw people using the walker or other devices where they would “walk”, thinking how amazing that is and how lucky they are. I cannot believe that I have progressed to the point already where I am switching sides and now I’m the one using the walker.

CHALLENGES TO EVERYONE
Now that you have checked out what’s been going on, I have some challenges for you as you go forward from this entry.

-Handicap parking
It’s unbelievable how inconsiderate people are sometimes. I have a handicap parking placard. I usually get good parking. But I would trade this for walking any day. Handicap parking used to be an afterthought for me. Yeah, it’s there, I can’t use it, move on. However, it really serves many purposes for those of us who need it.

1. SPACE TO EXIT THE CAR. When I exit the car (either from the passenger or driver side), I need to swing the door fully open so that I can safely transfer into the wheelchair. Normal parking spots usually do not have enough space to open a door completely.

2. SAFETY. When I am finally out of the car in my wheelchair I can safely immediately cross the parking lot into a store or access an elevator (next point). If I were parked further away, I could easily get run over. Imagine an SUV parked in a parking lot and I have to pass the SUV to get to my car. When the SUV looks to backup, they’re not going to see me when I’m 4’ something in the chair and could potentially back up and hit me.

3. LOGISTICS. The handicap parking spots are usually close to elevators (if applicable). I CANNOT EASILY TAKE STAIRS, which are sometimes located at other parts of the lot.

This may be stating the obvious, but some people apparently think they are above the law and their car is special. It is NOT OK to park there only for a few minutes while running an errand. It is NOT OK to park there because it’s close. It is NOT OK to park there because you’re running late. This compromises our safety and makes our lives even harder than they already are.

Thinking about it realistically, almost no car who parks in a handicap spot will ever get a ticket or towed if parked illegally. Police usually have better things to do. So I encourage you, if you ever see a car parked illegally in a handicap spot, report it either to the towing company or security.

-Handicap bathrooms/stalls in bathrooms
This is something that I used to be guilty of all the time. When you go to the bathroom, I would sometimes use the handicap stall because it’s bigger, it’s nicer, I don’t know why… But I used to use it. Now, when I need to go to the bathroom, it’s the only stall that my wheelchair can fit in. I’ve tried other stalls and I do not fit. It kills me now when I’m in an empty bathroom and someone is in the handicap stall and I have to wait 10 minutes until I can go. Please try not to use these unless others are not available.

True story. I was at LAX. I had to go to the bathroom. I went to the men’s public restroom. There were open stalls, but the handicap stall (there was only 1) was taken. The guy did his thing. Then he proceeded to begin unpacking his clothes to change, wash up, whatever. I waited 15 minutes. By the time he exited, I was waiting in my wheelchair right in front of door and as he exited, he said sorry— twice. I looked behind me and there was another guy in a wheelchair waiting for the same stall.

-Challenge to sympathize
This is a more hands on challenge more for perspective I guess. Some people ask me what it’s like to be in a chair and do normal things in a chair, etc. My challenge for those of you who wonder this is, TRY IT! Sit in a chair in front of the bathroom sink and try to do your morning/nightly routine—brush your teeth, shaving, wash your face, contacts, etc. Try the same while washing the dishes. Sit in a chair in front of the kitchen sink. Sit in a chair and try to reach for a glass so that you can get a glass of water. Sit in a chair next to your car seat and try (without legs) to use your upper body to bring your whole body into the car seat. Remember, you have to try everything WITHOUT using your legs at all. And some paraplegics can’t even use their core (abs/lower back) to stabilize themselves on a chair. Feel free to leave comments on this post too about your experiences in a chair. Hopefully this will garnish more a response than the few for the tattoo idea (thanks for those).

FUNDRAISING SOON
Also, keep an eye out because we will start fundraising very soon. We have the website registered that will be the main site and will probably link to this blog. It’s called http://www.helpjoewalk.com. There’s nothing on it yet, but there will be soon. Between myself, my parents and Ivette, we’re up to about $20,000 in expenses that have been incurred due to this injury and it’s not looking good anytime soon as I am still heavily fighting insurance to cover Project Walk, which is between $2000 and $3000 per month.