Wednesday, May 18, 2011
Thank you all for checking in!
Thursday, February 3, 2011
There were so many great and touching moments during the tournament but I would say the best part for me and for Paul was just seeing all of our friends and knowing that after 2 1/2 years, so many people still care and are supporting Paul and his efforts to continue to recover. And, the tournament raised a lot of money that has gone and will continue to go toward Paul's recovery for a long time. We are so thankful to have so many caring and generous people in our lives.
Around the same time as the Jerde Cup, we were blessed in another way when we were contacted by Bob Green, whose son goes to school with Buzz. He had been following the blog and had seen our last post that mentioned we were looking for a facility that has a treadmill with a harness. He didn't know of a facility but he had an even better solution. He works for a company called Associa and they have a foundation, Associa Cares, to help people in need. He told us that the foundation would donate funds to pay for the equipment with the harness, called a Biodex, that we needed. I was completely surprised and overwhelmed because this equipment is not cheap but also so happy because, as I have said, the key to Paul walking is repitition and practice. It was like a dream come true and so kind of Bob to even think of us for the donation. The one caveat was that, in order for the equipment to fit in our house, we would have to have at least 9 foot ceilings, which we did not.
However, it was also right around this time that my sister, Amy, was working with someone who had bought a house conveniently located much, much closer to most of my family, and was renovating the house with plans to put it right back in the market. Not only does the house have really tall ceilings but a perfect "workout" room for Paul's equipment. And, although we loved Lake Highlands and never planned on moving north of LBJ, it seemed like God was trying to tell us something so we put our house on the market, sold it to a young couple about to have a baby (which made me happy because I felt like I was passing on the baton), and moved into our new house Dec. 18. It was a whirlwind few months but things are now beginning to settle down. Buzz is continuing in the same school so, aside from having to wake up 30 minutes earlier so we can make the longer drive, his world hasn't changed too much.
We now have the harness but have not been using it yet as, because Paul is so tall, the vendor is readjusting some handrails that are necessary to help Paul stand up straight while he is walking. As soon as we get everything tweaked, we will be posting some photos of Paul walking with it on the blog and on both of our Facebook pages. We are going to work hard in 2011 to get more connected to the outside world and engage our friends in exactly what Paul is doing to get better. It is a complex recovery that obviously is a slow process but that will only happen if Paul continues to challenge himself, and that includes in communicating with others.
For us, 2010 ended with a bang - lots of changes but all good and all propelling our forward momentum into 2011. We are so lucky to be surrounded by so many caring, supporting, and loving people that believe in Paul and will do, it seems, anything to help us. It is amazing to experience and we are thankful every day!
Sunday, August 22, 2010
We also tried to incorporate some leisure activities into the mix to keep things interesting for all of us but mostly because everything that Paul does new and different is going to "work out" his brain and help him heal. Through the RISE Adventures program (the non-profit that offers golf), we were able to enjoy a couple of picnics at Grapevine Lake that included some water sports.
As soon as we got to the first picnic, the volunteers were quick to get Paul in the water and on a waterski tube. He said it was fun but didn't push to do it again when the opportunity arose. (I don't think he is a lake person. I know that I am not.)
Buzz, on the other hand, had a ball. He also rode on the waterski tube, swam in the water, and kayaked. The above photo is on the sailboat. Paul and I were there too, although getting Paul in and out of the boat was quite a challenge and almost comical at times. I was too busy holding on and worrying the boat would overturn to take more photos. Again, not a lake person. The good things about the lake excursions are that Buzz had a great time and it was something that we could do as a family and laugh and talk about afterward.
We also spent an afternoon at the Fort Worth Museum of Science and History where we saw an interesting exhibit on Leonardo da Vinci.
Paul practiced some golf this summer (although the heat kept us from going as much as Paul would have liked), went swimming quite a bit, and worked on a little bit of design on the computer. He also is really into working the daily crossword puzzle.
As his physical therapist keeps saying, "His brain is only going to learn things through repetition, repetition, repetition." So, the key is discipline and focus right now. I have to keep Paul from getting sidetracked. Back in the old days, I was the one who was easily sidetracked so it is my turn to keep Paul in line and working on those things that will help him as he continues his road to recovery, which is a very, very long road but there is a destination and each day he gets closer to it.
Thanks for reading!
Monday, April 26, 2010
Remember when Michael Jordan scored 63 against Bird and the Celtics? This past Saturday Paul Jerde scored a record 62 baskets in one stretch of shooting. Without resting or taking a break, Paul broke his own record of 56 (which he made taking some breaks in between). Several times he made at least 5 in a row, and at one point he made 9 in a row, till someone (who shall remain nameless) jinxed him by mentioning the streak. Paul's balance was also much better this last week, and was almost standing on his own for a few shots. Great job Pablo!!
Wednesday, April 7, 2010
Since leaving Baylor, he began working with Karen McCain, a physical therapist at UT Southwestern. She is a big believer in using a body-weight supported treadmill to regain walking and that repetition is the key. The treadmill Paul is using has an overhead harness system that provides partial body-weight support, which gives Karen the freedom to help guide his feet to ensure that he is walking correctly. Prior to this, Paul was practicing walking with a quad cane and assistance from a therapist, which I believe only made him overcompensate in ways that weren't beneficial to him and never really triggered his brain to figure out what it needed to be doing in order for him to walk without assistance.
One thing that I have learned since Paul's accident, as I am sure anyone has that has dealt with a serious health issue, is that medicine is an art as much as a science. And, that brain injuries are like snowflakes and each one is different. There are so many solutions and routes for us take and we have to constantly research our options, look at other cases, and read the latest news on traumatic brain injuries and to always be monitoring whether what he is doing is working for him. It is much like networking when your are looking for a job. You just keep your eyes open and talk to everyone that you can. (Not that I was ever great at networking. That was always Paul's forte but I am learning and much more passionate about Paul's recovery than I have ever been about working.) I am, however, a big believer in the power of forward momentum so as long as Paul is showing any improvement at all, no matter how small, we will keep moving forward, even when it takes us to a few deadends, we always seem to learn something new.
In fact, we came about working with Karen McCain because a friend of Paul's sent a YouTube video of another brain injury patient working with her and, in the video, she was talking about the very same walking techniques that Lisa Ann (our other PT therapist) had been pushing and that I have read about a lot but we didn't have access to the equipment. I contacted Karen after watching the video and she was great, talked with me about Paul for quite some time, and now is doing everything she can to help Paul walk again.
In addition to Paul's physical therapy, he is involved in a speech program through the University of Texas Dallas called the Callier Center. Three times a week, he participates in group therapy and also has one-on-one therapy with speech therapy students who are working toward their masters and certification. It has been a good social outlet for Paul and, his speech also continues to improve little by little. He isn't speaking in full sentences but has gotten much better at getting out one or two words that help him communicate without always having to rely on the Dynavox. This has been a great because he can interact more with Buzz, even if he is simply telling Buzz to "move back" when Buzz is too close to the TV. It is the small milestones that make me grateful these days.
Paul also is back on the golf course, sort of. Each Saturday, there is a clinic, through an organization called RISE Adventures, at Dallas Golf Center off Walnut Hill and 35. It is very secluded and off the beaten path. The first day that we went, I felt sure that we would either find the golf course or were being set up to be killed. Fortunately, we found the golf course and Paul has been working with a golf pro, Gary Pickle. Right now, he primarilly is on the driving range sometimes just hitting while he is sitting in the wheelchair but sometimes standing with assistance. Gary makes custom golf equipment for people who have physical challenges and has made a club, with a special grip, that Paul can use just using his left hand (as he still cannot use his right hand). Gary also has a special golf cart that Paul can drive right onto the course and turn the seat and putt or hit while still sitting. Of course, it is not the ideal situation and the goal is for Paul to get his game back as close to normal as it was but we have to take it slowly and, again, figure out the best way to get there. It is still nice to see him back on the driving range, especially when he is alongside Buzz, who, I have to say, has a pretty good swing for a 7-year-old.
Thursday, January 21, 2010
Paul is back at Baylor Rehab where he was about six weeks after his accident. He had been at Pate for more than a year and we decided a change of venue and environment would be a good thing for Paul at this time. (In addition, the decision had to do with insurance and some assistance we are receiving from DARS, the Texas Dept. of Rehabilitative Services, which is a godsend for people who have received brain injuries and, from what I hear, is unique to Texas).
Leaving Pate wasn't easy for Paul but it was ulimately his decision and he knew it would be a good thing for him. He had become very close with many of the therapists and members of the staff (pictured in the above photo) and felt comfortable, although sometimes bored, being there everyday for so many months. His last day there
was Dec. 23 and, as his family was in town for Christmas, the transition turned out to be fairly easy. He started at Baylor on Dec. 28 and it was quickly apparent that Paul thrives when he faces new challenges and wants to impress new people (some things never change). That said, he will only be at Baylor Rehab full-time for a short time, through February maybe. So, right now, we are looking into some options as to what Paul can benefit from next. Most likely, he will continue with physical and occupational therapy sessions there a few times a week and we'll get additiona therapy for him elsewhere.
In addition to basketball, Paul has been playing table tennis. We upgraded from ping pong when Paul began weekly visits to the Dallas Fort Worth Table Tennis Association's practices so he can use their Robo-Pong. It's kind of like going to the batting cages. The machine just shoots out balls for Paul to hit, holding the paddle in his right hand. The group has been wonderful in working with Paul to try to help him as much as possible. They even took photos of him and featured him on their Web site with a story about him. Pete Lacker came with us to one session and took above photo of Paul hitting the ball while standing, with some assistance. For us, going to table tennis has been a family affair. While Paul practices, Buzz takes a lesson, and I get some exercise by running around picking up all the runaway balls. It actually is quite an experience and, for anyone that likes playing the game, I recommend you come one evening as there are probably 9 or 10 tables set up with people at all skill levels challenging one another for play.
Paul currently cannot walk on his own, although we still see improvements and recently came across a new type of walker that, hopefully, will help him regain that very, very important function. We are looking into purchasing the equipment for him as soon as possible and working with new therapist who has seen positive results with other patients. Although the baclofen pump has helped somewhat with his spasticity and tone, he still fights his muscles contracting and tightening when he exerts himself (walking, standing). Paul is at a high dose of baclofen right now and the doctor increased it last Friday, which ended up being too much for Paul. Throughout the weekend, he was confused, emotional, had trouble verbalizing at all, and was very weak when it came to walking and standing. Monday morning, we were back at the doctor's so that he could decrease the dose in the pump back to what it had been the previous Friday. It has really taken all week for Paul to get that extra medicine out of his system and now seems to be back where he was. Sigh of relief. That experience served as a reminder to how far Paul has come.
As I said, I am excited about the prospect of this new walker for Paul so I will keep everyone posted on that and as to what Paul's next steps (both literally and figuratively) are after he leaves Baylor. It will be a change for us as Paul has spent the last 19 months in rehab full time but there are many opportunities out there for him to continue working and healing so I am optimistic about what the future holds.
Sunday, January 17, 2010
Tuesday, November 3, 2009
Saturday, September 12, 2009
I recently applied for Paul to participate in an intensive aphasia therapy program at the Rehabilitation Institute of Chicago, which is the No. 1 rehabilitation hospital in the United States. In speaking with the director of the program though, we determined that the program is not appropriate for Paul's needs. The aphasia program focuses mainly on language comprehensive. Paul does not have a problem comprehending language or retrieving language, his speech deficit is apraxia, which means he has trouble coordinating his muscles to make purposeful movements - in this case it is saying the words. He has no trouble comprehending and his master of the English language shows when he is using the letterboard and the Dynavox. Although Paul will not be participating in the aphasia program in Chicago, the director of the aphasia program thought that Paul might be a likely candidate to participate in other therapies that RIC offers so we are looking into that. As well, she passed on some names of researchers and therapists here in the Dallas area that I have contacted. So, there are options and opportunities out there, we are working on finding some that fit Paul's needs. I have to say though, everyone that I have talked to has been very kind, interested, and generous in sharing any information that could help Paul.
Several months ago, an acquaintance of Paul's, Michael Langley, contacted us to suggest that we call a therapist that he knows named Lisa Ann McCall, who has more of body/balance philosophy than traditional physical therapies. I finally contacted her over the summer and she has been coming to the house to work with Paul a couple of days a week and she has been great. She is very optimistic, energetic, and upbeat and has been teaching us ways that Paul can easily do therapy at home and incorporate it into our everyday lives. For example, we now have Paul holding a ping-pong paddle with his right hand and hitting ping-pong balls. He can easily do this while he is sitting on the couch. It is often a family affair, with me tossing the ping-pong balls to Paul, who hits them and Buzz has his own paddle and tries to then hit Paul's ball, which can go anywhere in the living room. The ping-pong balls end up all over the place but it is fun and something we can do as a family. Lisa Ann also has us making sure that Paul always is doing something therapeutic, even if he is doing it while he is watching TV. When he watches golf, we try to make him hold a golf club, which can be difficult with his right hand, and practice putting from a sitting position. She just believes the motion of doing something, especially something his brain is so familiar with (golf) that it will trigger the neurons to create more pathways. She also has suggested some different leg exercises and stretches that will help the spasiticity. We always both feel very optimistic after sessions with Lisa Ann. (Michael, thank you for the suggestion.)
As for his talking, Paul can say words more spontaneously and can repeat phrases but we still rely primarily on the letterboard and Dynavox. In fact, we are pushing him to use the Dynavox more because 1) it has word prediction so the more he practices using that, the faster he will be able to communicate, 2) he can sometimes say a word more easily if he sees it written down first, and 3) if he can't say it by reading, it is always good for him to repeat it once he has heard the Dynavox say it. The Dynavox also gives him some independence in that he can spell out what he wants to communicate without having to have someone there to spell out each word with him, as he does on the letterboard. I am all for that, because it gives both of us more freedom.
Paul still is not walking on his own, although we continue to see progress, albeit small but still progress. It is very frustrating for him because that has been his main focus. His therapists have suggested that, while he should continue working on walking and always have that as one of his goals, in the meantime, he also needs to become more independent while he is in the wheelchair. We all set our sights on the walking so, in the meantime, I've been doing more for Paul than I should and now have to push him to do more everyday things on his own at the house.
Buzz is now back in school and I am working part-time at ClubCorp, where I used to work prior to Paul's accident. So far, it is working out great for me because I can work mostly from home. However, since ClubCorp is located right across LBJ from Pate, on the days that I do go to the office, I can easily go by Pate on the way home and get Paul.
Well, I think that is enough for now. Once again, I am making a commitment to update the blog more often so, as Willie says, it doesn't turn into me writing a book each time.
Thank you all for your support and for following Paul's recovery.
Thursday, July 16, 2009
Paul's very special hat.
Cake! Marc, Shane, Tom, Gary and Sandy dig in.
Paul gives a thumbs up that Ed is still older than he is.
Paul hugs Jeff, who is also still older than he is.
Blowing out the candles.
George "helps" with the decorations.
The not so reverent gang.
Tuesday, June 30, 2009
Sunday, June 21, 2009
And, to bring things full circle, Paul and I watched the U.S. Open this weekend and, since much of the play was delayed due to rain, NBC showed a lot of highlights from last year's event so, as it turns out, Paul did get to see much of the tournament. It couldn't have been as thrilling as watching it live but it was still pretty exciting.
Monday, June 8, 2009
Of course, our hope was that Paul would be able to walk into the show but, since he is not quite there yet, we took the wheelchair. We rode over with some friends, Pete and Micki Lacker, and got their early to look at all of the artwork that was displayed before taking a seat at our table with the group from MasonBaronet. From that point on, person after person stopped by the table to see Paul. I don't know why I was even worried! Everyone was so nice, so encouraging, and so genuinely excited to see him. By the time the show started, I think we were both extremely happy that we were there.
Then, Jennifer Brehm, the current president, began the show off by acknowledging that Paul was there, explaining to the 400 or so in attendance what had happened to him, said how happy they were to see him, and how far he has come this year. Suddenly, there was a spotlight on Paul and he was receiving a standing ovation from the crowd! It was one of the most amazing things that I have ever experienced so I can't imagine how Paul felt. If I remember correctly, he looked a little shocked but I know Paul well enough to know that he would never admit it, but he loves being in the spotlight , although I don't know about an actual spotlight. He did spell out for me later that he was overwhelmed. It was just so touching. Since Paul's accident, it has seemed like our life has been so far away from what it was before, I honestly never thought we would again be attending a DSVC banquet, which incidentally was a big night out for us each spring. But, while we were there, it felt right and I realized that our pre-accident life and post-accident life are slowly beginning to come back together. And, that designing will always be a part of who Paul is so no matter what. He still has the passion and the determination and, even after receiving a standing ovation, still expressed regret that he didn't win an award this year so I know he still has the drive and competitiveness.
I just want to thank the DSVC Board, especially Jennifer Brehm, Samantha Reitmayer, Tom Dennis, and Brandi Lefleur for going out of their way to make attending easy for us, for making us feel so welcome, and for providing an exceptional experience. It was a special night for both of us and I know that, for Paul, it was like a pep rally that gave him a boost to keep working. I included this photo of us at the banquet and have more that I will try to post soon. Unfortunately, I don't have one of Paul during the ovation. I had a camera but was overcome by emotion and wasn't thinking clearly enough to pick it up and take a picture.
Thank you, everyone, again for you support.
Sunday, May 24, 2009
Monday, May 11, 2009
Thank you again everyone for following the blog, especially Mary Ellen up in Manistique, Michigan. We can feel your support 1,200 miles away!
Patty and Paul
Saturday, May 9, 2009
Tuesday, April 28, 2009
Hope all is well, I wanted to pass this along. I use getwellsoonpaul.blogspot.com as a sigline on a couple of blogs I visit. I received a note from someone who happened to go there and was moved to write. Feel free to include it in the blog if you like.
This is what they wrote;
"Wanted to Thank You for your sigline. I sat and read the whole blog. What an inspirational ongoing story of a man's recovery and those whom love him. Paul's wife Patty has become a hero to me this morning as I read the blog."
Just a quick note, but it illustrates the power of Patty and Paul's example and the blog itself.
Thursday, April 23, 2009
Paul came to the annual new warrior crawfish boil a few weeks ago and I'm happy to report his appetite for crawfish has not suffered much at all. :-) Everyone was happy to see him there, of course, and Buzz, Patty and Beth too!
For the past few months Paul has been attending our weekly warrior men's group meetings and has been doing great. He still mostly spells out his input (which is typically very insightful), and does say an occasional word or two. It's great to have him back!
Sunday, April 19, 2009
His long-term memory though almost seems better than it was before his accident. We played Trivial Pursuit one night a couple of weeks ago and he did great. (We had tried playing at Christmas and some of Paul's answers were pretty off-the-wall.) I couldn't believe how many answers he got right this time or at least how close he was. For instance, in 1973, what musical received more Oscars than The Godfather? It was Cabaret, and Paul got it right. I was surprised. I would not have guessed that he would have known that pre-accident. In fact, I wonder why he even knows that at all... it is curious. And one more movie trivia bit, last night, Beth, Paul, and I were watching The Graduate and discussing the actor playing Mr. Robinson when Paul pointed out that his name was Murray Hamilton and that he also was in Jaws. I think of myself as fairly knowledgeable about Hollywood and, although the actor seemed familiar, I had never heard his name before. Is it me or does anyone else know Murray Hamilton??
Now, if only his body could catch up with his cognitive recovery. He continues to slowly but surely recover his speech. And he works hard every day physically but still cannot walk on his own or even stand balancing for long. We will now see the doctor regularly to have his baclofen dosage increased. It is recommended that the dose only be increased by a certain percentage weekly so we'll be there every week until we start to see more dramatic changes. I know that Paul's determination can carry him far but I think he needs to see some progress soon to keep the momentum going, especially as he becomes more aware of the outside world. He continues to express interest in art, and, although clearly not ready, wants to begin designing again soon. This is all wonderful to hear because his passion is still there but he'll have to relearn the basics of the computer and design programs and it is going to much more challenging this time around. I have to say though, Paul continues to amaze me as I see more of the old Paul coming out, and, with each day, he makes me smile and laugh more and more. He even has become more cynical the past few months, which I guess is a good thing.
And, this week Paul will also getting Botox shots in his right arm. Although temporary, this should help the spasticity there as the baclofen pump primarily targets the baclofen to his trunk and leg. His occupational therapist continues to work hard with his arm and push him to use it whenever he can. More on that, and his baclofen, later.
Thank you, everyone, for sharing our story. I don't know how we could have gotten this far (almost a year!) without the support of everyone. And, I am thankful every day.
Tuesday, March 24, 2009
His physical therapist also has said that Paul has to now, in a way, relearn how to use the muscles on the right side of his body, not just physically but mentally as well. It is complicated but, for someone to make the smallest movement, it takes a lot of neurons sending messages through pathways to the muscles. The therapist explained that, basically, up until now, Paul was using many, many neurons to send messages through many pathways with the goal that he'd be on target and eventually something would trigger his leg to move or him to be able to pick up his foot. This is not only exhausting for him but also counterproductive as Paul ends up using opposing muscle groups to perform simple tasks. For example, he may be using the correct muscle to lift his leg while an opposing muscle is pushing it back down. As I said, it is all very complicated and I think I only understand it enough to know that Paul still has a lot of work ahead of him. He'll need to retrain his brain to only use the correct neurons he needs for specific movements. The therapists plan on trying biofeedback, a computerized technique which will measure particular muscles being used during certain movements, to help determine where he is "misfiring." He'll then be given certain exercises or thought processes to utilize to try to help him use only the correct muscle groups. Again, this will be a challenge for Paul as he still has a severe memory deficit. But, as I have said in the past, this continues to slowly improve.
His speaking continues to slowly improve as well. His speech therapist, Megan, is great with Paul. She makes him speak as often as possible, works vigorously on his writing, and she has a great sense of humor too. She and Paul joke around and I know that helps him stay motivated although he is in the last place that he would have ever choose to be.
The really good news though is that cognitively Paul is getting better and better all the time. I feel like his mind is improving and his body just can't catch up. In fact, Saturday night, some of Paul's friends (Ed Schafer, John Hampton, John May, Tom Dennis, and my brother-in-law, Dave Proudman) brought dinner over and the group played several rounds of blackjack afterward. Ed even brought his professional blackjack kit, which is something he also brought on annual golf trips Paul used to go on with the same group. Paul had a great time Saturday night and everyone commented on how well he was able to play and how he held his own against the other players. The idea of a night of blackjack was Ed's, who reminded us that Paul was so into blackjack during the golf trips that he once showed up at Ed's house for a private lesson. As silly as that is to me (I don't ever remember any big "winnings" after the golf getaways) it is another reminder to me that Paul will go the extra step to succeed.
Paul has been sketching more and more, watches golf constantly, and also has been reading quite a bit. He also maintains his sense of humor. The other day, he, Beth, and Buzz were talking after watching the movie Surf's Up. Beth commented that she wondered where the term "Holy Mackeral" came from and why no one ever said "Holy Sardines." Then Buzz started saying "Holy Sardines" and Paul spelled out, "C-o-d D-a-m-m-i-t." Of course, we told Buzz that he couldn't repeat that phrase but we all got a good laugh out of it.
Although my updates haven't been regular (I think I was avoiding updating it until the "miracle" baclofen pump started working but I found that, with most things following a traumatic brain injury, progress is very slow), I hope that you will continue to check the blog often and keep Paul in your thoughts and prayers.
Tuesday, February 24, 2009
Paul also is less tired as we've weaned him off the oral baclofen. Not only is he less tired but his speech seems to improving a little bit. When I say that, I don't mean he is talking and holding conversations but he seems to be able to say more words on his own without being prompted. This is still a very long and slow process and he continues to primarily use the letterboard and Dynavox but it is still progress, which is something we are thankful for every day.
His therapists report that he is very upbeat during therapy and has a great attitude. The other day, a group of patients was playing darts and Paul went to join them and said, "Bring it on!" We've practiced this phrase a lot but it is wonderful to know that he said it on his own.
Paul's brother, Jim, and his wife, Lori, were in town this weekend and we all had a great time. Jim, Paul, and Buzz played Frisbee for quite some time on Sunday and Paul did very well, despite having to catch and throw with his left hand AND while sitting in the wheelchair.
We expect that Paul's rehab will continue for many more months. That is okay though, because as long as there is improvement, I don't think anyone wants to stop now. Thank you again everyone for your continued support.
Wednesday, February 11, 2009
Thank you, everyone, for keeping us in your thoughts yesterday. Paul read throught the blog messages at the hospital as we waited to be called in for the surgery and I know he appreciated all the support and encouragement. I did too!
Thursday, February 5, 2009
Paul's short-term memory continues to slowly improve. We've learned that we have different types of memory and each is located in different areas of the brain. A doctor at Pate explained it, in very simple terms, by using this as an example: You have a doctor's appointment in the morning. One part of your brain stores the information that you went to the doctor, another stores the information about what the doctor looked like, and yet another will store the information about what the doctor said. Basically, it comes down to taste, smell, vision, hearing, and physical feeling - all are stored in different areas of the brain. If one of these areas of the brain is not working properly for Paul then that leads to confusion when he tries to put the pieces together. He is currently being tested to see if it can be determined which areas are affected so that we can help him with those specific memories.
That said, Paul's longer-term memory continues to amaze me. We went to see one of the doctors for the first time at Pate here in Dallas. The moment we walked in, both Paul and I, and the doctor, knew that we all knew each other from somewhere but couldn't figure out where. We went through the usual scenarios of work, school, neighborhood, etc. but still couldn't figure it out. Then, near the end of the visit, Paul spelled out O-L-D D-A-Y... and before he could finish we realized it was from Buzz's daycare. Her son was in Buzz's class for a time but that was almost three years ago. So, the dynamics of the brain and all that Paul can and cannot do continues to fascinate and frustrate at the same time.
Please think of Paul, and say a prayer for him, next Tuesday around 3:30 pm as he goes in for his surgery. It is minor surgery but could bring about some major changes.
Wednesday, January 28, 2009
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
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 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.
Wednesday, December 31, 2008
Sunday, December 28, 2008
As happy as we were that Paul was home, those first few days were pretty difficult and emotional. Logistically, it was hard to get the hang of maneuvering him around the house in the wheelchair, transferring him, and getting him in and out of the house. We also are all getting used to being out and about with Paul in the wheelchair and the amount of planning ahead and time involved. It is a learning experience for all of us and has certainly opened my eyes to many things. I think it is hard for Paul to be home and out in familiar places because it has magnified his limited abilities but it also has made him even more determined to continue to practice his walking and his talking.
That first week, the mornings were chaotic. Since Paul is continuing his therapy at Pate in Anna through part of January, someone from the facility arrived each morning at 8:00 to pick him up, which is about the exact same time that Buzz goes to school. Thank goodness, again, that Beth is here to help. Right now, Paul needs assistance showering and dressing and takes a variety of medications in the morning so it took that whole first week to get a routine down that ensured Paul was ready when the van came and that Buzz made it to school on time.
We've also had many visitors, which has been a great thing for Paul, especially in helping him put the pieces of the puzzle (his life) back together. The home environment has really made a difference. For example, about a month ago at Pate, we tried to log on to Paul's e-mail and he could not remember the password. But at home, on our computer, he knew it immediately. We also took a field trip to MasonBaronet, the agency where Paul worked before the accident. Holly Mason, who owns the company and has been wonderful to us throughout this ordeal, met us there on a Saturday. Paul seemed enlightened by the visit and I really think it opened his eyes to his career and what he did. Again, putting the puzzle pieces together. Prior to that, he knew where he worked and knew his co-workers but I'm not sure that he remembered exactly what he did or some of his work. He still often gets confused and, although his short-term memory is improving, must constantly be reminded about things or told things several times before he can remember them. It is hard to tell for sure but I am excited because he has now showing more of an interest in his work and has begun drawing a little bit more too. His art and creativity is so much a part of who he is and I really hope that he finds that again.
On the Monday before Christmas, we were just finishing up dinner when there was a knock on the door. Samantha Reitmayer, who was instrumental in organizing meals being brought to the hospital daily those first few weeks after the accident, and Willie Baronet, showed up at our doorstep with a bundle (I don't even know if bundle is the correct word!) of gifts. They had four enormous stockings full of gifts and additional presents not just for Paul but for all of us. I thought Buzz's head was going to explode. We had a wonderful time opening the gifts and were all overwhelmed, once again, by the generosity and kind hearts of so many that donated money and gifts or have stopped by with packages and gift bags. That evening, Paul seemed touched as he opened his gifts and heard the names of those who had participated and spelled out on his letter board that he would need to thank each individually. (pictures below)
I am so touched to know that so many of Paul's colleagues and friends had participated. I've been so focused on Paul and his recovery that I feel like we've been living in a time warp and the rest of the world is moving on but knowing that so many still think of Paul and support him and us was touching. Especially everyone in the design community, which has been such a big part of his life.
Christmas was great too. We had a fun morning at home opening gifts and then went on to my mom's house where, because of various family obligations, traveling, and even the flu bug, we had a small turnout compared to most years. That was probably a good thing though because we stayed for more than four hours and I don't think Paul would have lasted that long had everyone shown up.
Thank you all again for all that you've done and for following Paul's story and his recovery. This has been an incredible experience for me - I've learned so much, gotten to know so many amazing people, and been deeply affected by all of those who have cared and offered assistance. I can't even begin to think about how things would have played out for me, Buzz, and for Paul had we not had the incredible amount of help we got from my family, our friends, and the design community. We now are looking forward to 2009 - a new year with many new opportunities.
Friday, December 12, 2008
Paul B., Willie, Mike, Paul J., Dave, Brent, Gary (seated). Some of the Saturday morning basketball gang.
Hey, who's the wise guy?!
Patty and Paul
Willie, Paul and Jeff
Paul and Jeff can't stop laughing...
Oh, and did I mention, PAUL COMES HOME TODAY! :-)
Tuesday, December 9, 2008
Lovingly "borrowed" from a stash of pics that Paul's mom brought down on her last visit.
Blessings to all of you for continuing to send love to Paul.
Monday, December 8, 2008
Paul still is not verbal so we continue to communicate via the letter board. We don't have the Dynavox machine yet as there is paperwork involved because the machine, which is fairly expensive, is being provided by the state. (Thank you, everyone in Texas, for paying the universal service charge on your phone bill. Now you know where some of the money goes.) Right now, we have a Dynavox trial software program on my computer that we've been practicing with but since Paul is still adapting to using the keyboard and typing with only his left hand, it is slow and he prefers using the letter board. The letter board works fine, but is time consuming since you have to concentrate as he spells out each word. If you miss a letter, it gets very confusing. Of course, oftentimes, I can guess the word before he finishes spelling but sometimes I am wrong in my guess. For example, on Saturday a friend who we had not seen for some time even before Paul's accident was visiting. It was an emotional visit and I was teary eyed when Paul began spelling out, "C-R-Y..." Before he could finish, I said "Crying, yes, I was crying but don't worry about me, I am fine." Paul shook his head and continued spelling, "C-R-Y-S-T-A-L L-I-G-H-T." It turned out that he was not really concerned about me but just thirsty. The old Paul continues to shine through!
I expect that the actual Dynavox machine, which is touch-screen, will be easier for Paul to use. Again, he continues to work on his speech and I remain very hopeful that it will come easier in time.
Paul's other main focus still is his walking. He wants to practice all the time and often just tries to get up out of the wheelchair. I think when he gets home, his determination will multiply and we'll have to keep an eye on him until he has more control and balance.
The renovations on the house continue and, right now, it is a mess but I think most of it will be done by Friday and we'll be able to clean up the coat of dust that covers just about everything. We plan Paul's arrival home to be low key because we think he will be overwhelmed enough simply by being here. His coming home is just one more step forward on his journey to recovery. I've been doing some research on traumatic brain injuries and have read that, although much of the recovery takes place during the first year to two years, the brain can continue to heal and change throughout a lifetime. Right now, I believe he is far from done with his recovery and nowhere near where he'll be in a year.
That said, I'll continue to update the blog even after Paul's homecoming and perhaps, one day soon, Paul will be able to take part in updating the blog too.
Friday, November 21, 2008
Not everyone in my family was there but we still had 7 adults and 5 kids. We figure this is good practice for Thanksgiving, when the head count will double. It was a nice visit. He had a long conversation (via the letter board) with my sister about William Faulkner's "The Sound and the Fury." I'm not really sure how it came about, sometimes the topics he wants to cover come out of nowhere, but he definitely remembered reading the book and all the details and meanings behind the plot. Dinner went well too but shortly after we ate, the kids started to get a little rowdy and the noise level rose quite a bit. Paul let us know that he was ready to go.
As I've said before, he still gets confused and often spells out that he feels out of it, scrambled, or scared. The neuropsychologist at Pate has said that this is a good thing because Paul is moving toward comprehending the bigger picture, that something has happened and his life is out of whack. Apparently, many traumatic brain injury patients never even reach that point.
Little by little, Paul also seems to be getting his short-term memory back as well. For a while there, Paul would ask me every 15 minutes how long I would be staying at Pate that day. It actually got to be a little bit comical. He now seems to remember for the most part but he still acts a little surprised when I do say I am leaving. He also can forget what happened earlier in the day or that he had recent visitors. The doctor feels this should get better but may always be somewhat of a problem.
We are excited about Thanksgiving (Paul's mother will be here for a week) but we are even more excited (and nervous too) that Paul has been given a discharge date and will come home Dec. 12. However, his rehab will continue as he'll have out-patient therapy through February, if not longer. We are preparing the house for his arrival by renovating the bathroom to make the shower larger and by adding grab bars. We also are installing French doors in the front of the house that will allow Paul easier access into the house. We continue to be very hopeful and optimistic about Paul's walking but the reality is that, by December, he still will be using the wheelchair.
Both Paul and Buzz have countdown calendars to Paul's homecoming and we mark off the days as they pass. I cannot believe that five months ago I didn't know if Paul would ever be returning home and now he will be here for Christmas. What a wonderful gift for all of us.
Thank you again for following our story.
Monday, November 17, 2008
Here's a pic from after lunch.
Then it was time for haircut number 4 since Paul's accident. Here's Paul getting prepped.
Here we go!
Jim soaks in the sun and listens to the buzz of the clippers.
And we're done! Paul forgets to tip the barber. :-)
It was a great visit, and Paul showed some progress in spelling out some longer sentences using his alphabet sheet. He also was eager to do some walking, so with some support on each side he walked several times across the patio. He is getting stronger, but it's still quite a task for him to lift his right leg. Paul is such an inspiration, and I am so grateful to be his friend.