Wednesday, January 28, 2009

Jan. 28 - Pumping Up Paul's Recovery

Although Paul has been working extremely hard on his walking, he continues to have severe spasticity, which is a form of muscle overactivity caused by his brain injury. Basically, it is an involuntary increase in muscle tightness (tone) through much of his body. The spasticity occurs because of damage to the neurons, or nerve cells, that send signals from the brain to the muscles that cause movement.

Paul is fighting that spasticity all the time and this has affected his ability to progress in his walking but also has affected his trunk strength and the use of his right hand and arm. Because of this, it has been determined that Paul would benefit from a baclofen pump, a surgically implanted programmable pump that delivers medication directly to the intrathecal space where fluid flows around the spinal cord. Paul was tested for this treatment last week during a 24-hour stay at the hospital where the doctor gave him a shot of the baclofen directly in that area. Within just a few hours, a physical therapist could see dramatic changes in Paul's spasticity so we are very excited about the possibilities. Of course, changes won't happen overnight. In fact, Paul may take a few steps back in areas of strength because muscles overpowered by the spasticity haven't been used since his accident in June.

The pump, which looks like and is about the size of a hockey puck, stays permenantly in his hip area and will need to be refilled about every three months with baclofen. This is done by inserting a syringe through the skin and directly into the pump. All of this is a little scary but knowing that Paul could continue to progress makes it seem worth it.

Paul's new physical therapist already has told us that she is impressed by how strong Paul is despite the spasticity he is fighting. She also has seen his competitive spirit in action. She shared a story of how they were practicing his walking and passed another patient who was practicing walking but had the benefit of another type of treatment (not the baclofen pump) that the therapist also plans on using with Paul. She was talking to Paul about it and telling how he could soon walk that well too. Paul then spelled out on his letter board, "I'm going to kick his ass."

We expect the baclofen pump surgery to be in the next couple of weeks but we are pushing it for sooner than later as the first year of Paul's recovery is the most important. Please continue to pray for Paul. He is determined to keep working and stay optimistic but does experience many moments of confusion, sadness and anger.

Thank you all again and I will keep you posted on the baclofen pump surgery.


Monday, January 19, 2009

Update - Jan. 19

Paul began his second week at the Pate facility in Dallas (near LBJ and Josey Lane) and things seem to be going well. Although he made great strides while in Anna, I think it is really good for him to be in a new environment with a different group of therapists that will mix things up a bit. A van comes to get him each morning around 8:15 and he is home by 4:00 and, although he still is tired at the end of the day, he doesn't seem as exhausted as after the nearly hour-long commute that he had.

The change to the new facility has reminded me in many different ways of how far Paul has come since he arrived in Anna back in September. At that time, he was extremely confused and scared and I don't think he understood where he was or knew, from day to day, whether or not I would be visiting. Everytime I arrived to see him, he got very emotional and wouldn't let go of me. Last week, Beth and I forgot to include Paul's letterboard with his things on his second day at the new facility so we drove over to drop it off. Paul glanced up, acknowledged us, and then completely turned his attention back to his occupational therapist, who was exercising his right arm. I felt a little bit slighted (after all I am his wife!) but, of course, recognized it as a great moment in his recovery. I also know that when Paul is focused on getting something done, he doesn't tolerate any outside distractions.

I also remember the first day at Pate in Anna, his group was playing Bingo and the therapists put a card in front of Paul. I thought there was no way that he could play Bingo, he seemed to barely know what was going on! He was able to recognize the numbers for awhile until once his card became cluttered with markers, then he started missing numbers. He became better and better at Bingo and other games such as Uno and dominos. Well, this weekend, a friend of Paul's, James Bland, stopped by and brought a Chess board and he and Paul played a few games. This is something they used to do together occasionally on their lunch hours. On Sunday, another friend, Pete Lacker, came by and they also played a few games of Chess. Again, I realized how far Paul has come in the past five months.

Paul, Beth, and I also went to see "The Wrestler" (Paul's choice although I have to say I did like it) this weekend. Paul was focused the entire movie and afterward we discussed it, via the letterboard. It was nice because going to the movies is one of our favorite things to do. We saw the movie at the Angelika in Dallas and realized that it was very easy to access by wheelchair and we will be going to see more movies there as Paul continues to work on his walking. (We went to see a movie with Buzz over the Christmas holidays at another theater and it was a production/fiasco getting Paul in and out of the theater. Again, this all opens my eyes to the many challenges faced by others in similar situations and how, although many people will go out of their way to assist you, others will not acknowledge you. I realize how important it is to help Paul maintain his dignity while he is going through this.)

As I said, Paul continues to work on his walking. We are looking into a medical procedure that might help and will know more about it at the end of the week. Paul also continues to work on his talking, which is very slow in coming but we do see progress so we continue to push him.

Thank you again, everyone, for your continued support.

Monday, January 12, 2009

Paul's first haircut at home - the movie

Paul's haircut from Willie Baronet on Vimeo.

Paul would like to thank the rest of the cast, the producers at Fox Searchlight, without whom this project would never have gotten off the ground, the entire crew (you know who you are) and all the members of the academy. Love and blessings to all of you.