Tuesday, November 3, 2009

the putt

the putt from Willie Baronet on Vimeo.

A few months ago Paul took up a golf club for the first time since his accident, and this is a little movie about it. :-)

Saturday, September 12, 2009

We're Still Here and Still Working

It has been nearly two months since the blog was last updated, and I apologize. I am not sure how the time passed so quickly but I guess we've been really busy. Although the summer has gone well, it also has been hard. Paul still struggles with talking, walking, and use of his right arm. Not to mention that he is burnt out on being at Pate. Everyone is great there but the every-dayness of it has gotten to him, especially because he hasn't seen the progress that he had hoped for and expected. So, while he will continue there because they are good, he needs to keep working, and insurance continues to pay, I am always looking for alternative therapy options that will help him.

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

More highlights from Paul's birthday!

Paul's Thursday night men's group had a belated celebration in Paul's honor. Here are some of the highlights!

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.

Streamers galore.

Paul hugs Jeff, who is also still older than he is.

Sugar crash.

Blowing out the candles.


George "helps" with the decorations.

The gang.

The not so reverent gang.

Sunday, June 21, 2009

June 21 - Father's Day

It has now been over a year since Paul's accident. Officially, it was last weekend, since it was June 14, but for me, this weekend has really felt like the anniversary. When Paul was in the accident it was the Saturday of Father's Day weekend AND of the U.S. Open golf tournament, which is like the Super Bowl weekend at our house. I remember the Thursday night before the accident, I had my book club. When I left the house around 7:00, Buzz and Paul were eating pizza and watching coverage of the first round of the Open. I left my book club after 9:30, expecting that, when I returned home Buzz would have taken a bath and maybe be asleep and Paul would most likely be asleep on the couch, which was the norm on book club nights. As I was walking to my car, Paul called. He and Buzz were driving home from TopGolf, a local driving range. Watching the U.S. Open had given Paul the urge to practice. I was very surprised because once Paul got home from work, he rarely ever wanted to leave the house again. But, they must have had a great time because Paul was very animated during the conversation and I could hear Buzz singing in the background. That is a memory that I cherish as one that was a spontaneous but great father/son moment that I believe took place that night for a reason. It was an exciting night for Buzz and he still talks about it nearly everytime we drive by TopGolf.

This has, obviously, been a tough year for all of us but especially for Buzz in so many ways. Which is one reason I posted what I think is a great photo of the two of them. It was taken by Pete Lacker while we were out to dinner a few weeks ago. They were looking at Pete's iPhone and Paul was spelling out something on the letterboard but I love that Buzz is looking directly at Paul. It has been hard for them to communicate this past year and has been heartbreaking at times. But, the bond between them is still there even if the dynamics are a little different.

We watched U.S. Open golf all this weekend and I couldn't stop thinking about last year and looking at Paul in ICU that first day and feeling so bad that he was missing the tournament that weekend. We even requested a television be brought in at the bottom of his bed so that we could have it on. I thought surely he would hear the commentators or the crowd cheering and wake up. Of course, at the time, I had no idea how bad his injuries really were. That would become apparent as the days passed. And they were bad. So bad, that when the doctor finally told me he was releasing Paul from ICU, it was to go to a skilled nursing facility where, the doctor told me, he would stay and, if Paul's condition didn't change, after two years I would have to decide what Paul would want as far as quality of life. He added, almost matter of factly, that making this decision wasn't really like the the Terry Schiavo case; that was all the media hype. It was one of the most horrifying and surreal conversations I've ever had. I was numb. That was a very bad day for me.

Fortunately, I have a good friend who serves as legal counsel for another major hospital in Dallas and she came to visit that day, asked me a lot of questions, and told me not to sign any release papers and insist that our goal be for Paul to go to rehab and don't take no for an answer. And that is what we did and from that day forward, little by little, Paul's condition improved and it continues to improve every day. I guess I am sharing this now because I want people to understand how little doctors can really predict with brain injuries, appreciate how much Paul has accomplished and what a fighter he is and how he will never give up. He continues to work so hard toward walking on his own. He even often requests a schedule of when that will be and has repeatedly told me that his therapists need to work him harder and that he spends too much time at Pate sitting around. They actually work him really hard and there is a reason behind everything he does, even if he doesn't see it.
He has started getting additional physical therapy at the pool at Baylor Rehab. Twice a week, Buzz and I pick him up from Pate in the afternoon and take him to Baylor. The session is only 30 minutes but he gets a good workout walking in the pool and he really likes it. One session last week, he did not have his usual therapist and the woman he did have, who was actually training another therapist at the same time, did not seem to know what to do with Paul or exactly what his capabilities were. They just sort of aimlessly wandered around the pool. After the session, Paul spelled out that that was a waste of his time, he doesn't have time to waste and that those girls were useless. I totally agreed with him but it was SO Paul to get so mad about it. He kept wanting to discuss it via the letter board even after I agreed to call and complain and try to get a make-up session. He just was not going to stand for any nonsense on his watch.

So, as this past weekend has been a milestone for us, I prefer to focus on how far Paul has come and how far that I know he will go, how our families have gone far beyond just being there for us, and how many amazing people that we've met or already knew that have shown extraordinary support, kindness, and generosity. I know I keep repeating the same thing but I feel like I can't say it enough to accurately show how I feel and I can't think of any other way to say it. But, thank you everyone, again for following us during this wild journey. I will continue to write on the blog because, in addition to serving as a great communications tool, it is a great outlet for me to talk about Paul and his progress and what we are going through, but also we get a lot of support from it too in all the comments posted. It is definitely a two-way street.

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.

Thank you again,

Monday, June 8, 2009

June 8, 2009 - The DSVC Banquet

This past weekend was pretty big for Paul. We attended the Dallas Society of Visual Communications annual banquet. Through the years, Paul has been very active with the group - which is the largest, independent visual communications organization in the country - even serving on the Board for several years and as president in 2002. The banquet serves as an award show to recognize exceptional work from Dallas area graphic designers, illustrators, and photographers for the year. As it turned out, two pieces that Paul worked on at MasonBaronet as creative director in 2008 prior to the accident were accepted into the show so that is one reason we decided to attend. The other is that the DSVC has been a huge source of support for us since Paul's accident and many of the members, who he has become friends with over the years, had not seen him since before the accident or early on at the hospital. I was very nervous about attending the show but I know that Paul has come so far this year and continues to improve every day. I also knew that the people that would see him at the show will see him again down the road and, as he continues to recover, will appreciate even more how well he is doing and how hard he is fighting.

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

May 24, 2009 - Update, Ride of Silence

This past Wednesday, May 20, we attended the Ride of Silence here in Dallas at White Rock Lake. The Ride of Silence is a worldwide event when cyclists gather and ride in silent procession to honor cyclists who have been killed or injured while riding on public roadways. The ride began here in Dallas in 2003, by a cyclist who wanted to honor a friend who had been hit by a mirror of a passing bus and was killed.

Paul, Buzz, Beth and I met Holly Mason, a friend of Paul's and her daughter by the stone picnic tables off Lake Highlands Drive and waited for the cyclists to pass. We didn't really know what to expect. Paul wanted to stand so Beth and I stood on either side and we all were amazed as hundreds of cyclists, led by a police car with flashing lights, slowly and quietly rode past us. It was actually very moving and kind of emotional. A couple of friends stopped to say a quick "hello" and give Paul a hug. The event made an impact on all of us. I think for Paul, he felt honored but also expressed that he would like to be a part of the ride next year.

The next day, I received e-mails from my uncle, Dick Stevens, who lives in Portland, Maine. He had participated in the event, in honor of Paul, in Brunswick, Maine. He is in the photo above showing a sign on his back. The sign says he is riding for Paul Jerde. My cousin, Hilary (Dick's daughter) also participated in honor of Paul in the ride in Newark, Delaware. I was so touched to hear about their participation. I can't even begin to explain how much strength and energy that both Paul and I get when we know there are people out thinking about us, supporting us and cheering for Paul's recovery. It comes in many shapes and forms but always helps, and in this case, I hope will also raise awareness for bike safety, which is something that I had not thought about prior to Paul's accident.

On another note, Beth, Paul's sister, will be moving to Berkeley, California, on Wednesday. She got a job there and starts June 1. We are all so happy for her because, although she has been looking for a job for a long time in cities all over the country, her dream was to find something in the Bay Area, which she did. We will miss her so much though. I am so grateful that she could come to Dallas last Sept. and help us at a time when I don't know what I would have done. Those first weeks when Paul was in Anna were extremely difficult. I did not want Paul alone there except when he was in therapy and sleeping, and Beth was my savior. She took care of Buzz when I was in Anna and was in Anna when I was with Buzz. And, because she was in Anna and with Paul so much, she became my ally in figuring out what was best for Paul. And, when Paul came home, she was strong and positive and helped us get through the adjustment period. Not to mention that she is fun to be around, makes great salads, and is forever doing laundry for us.

As I am writing this, I am wondering how we'll get along without her. I know that we'll be fine, we'll adjust and it will be good for us as a family, but there will be a huge gap when she leaves. However, she already has promised to return at Christmas and, some day, Paul, Buzz, and I will take a trip to Berkeley.

Thanks again everyone and I hope that you all have a good Memorial Day. Weather permitting, we will be having a cookout at my mom's house and are planning on getting Paul in the pool to practice some walking there.

Monday, May 11, 2009

Update - May 11, 2009

As I mentioned before, Paul was getting Botox shots in his right arm. He got the shots about three weeks ago and the purpose again is to fight the spasticity and to relax those muscles that are fighting the muscles he should be using. The Botox has helped. His right arm is less constricted and he can open his hand more than before. In addition, he is wearing splints several hours a day that stretch his elbow and his finger muscles. This is to avoid the muscles shrinking, which they will do if they are constricted for too long. Paul's occupational therapist, Kim, has been working vigorously with Paul by having him pick up, with his right arm, small blocks and objects. She also has given him a project of creating a photo gallery. He has taken photos, which he will upload to a photo gallery and write captions. Kim wants him to use his right arm as much as possible while taking the photos, using the computer, and writing the captions. As soon as the photo gallery is complete, I'll include a link to it on the blog and you'll be able to see Paul's accomplishments but also many of his friends at Pate.

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

A note from Dave Cowling (Paul's brother in law)


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

Recent pix at crawfish boil!

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

Update - Sunday, April 19

The good news is that, cognitively, Paul seems to be getting better and better each day. He is much less confused and his short-term memory is really improving. He remembers more day-to-day occurances, which makes life so much easier. We can now have a conversation, visit with someone, and watch a movie or television show and he'll remember most of it the next day and several days later. What a relief! I felt like I was constantly reminding him of things that I had just told him, which I didn't really mind. I was more frustrated when we would be with family or friends and something newsworthy would come up that Paul and I had talked about but Paul would just look shocked like he was hearing it for the first time. I had to keep defending myself that I was keeping Paul in the loop and Paul would just shake his head with a "no she isn't" look on his face. I am pretty sure that most people believed me but I sometimes wondered.

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

March 24, 2009

It has now been about six weeks since Paul got the baclofen pump and, although we do see a decrease in the tone, he still is not where we want him to be in his standing, walking and balancing. The amount of baclofen he receives through the pump has been increased twice now and we'll go to the doctor again this week and, most likely, the dosage will be increased again. This is called titrating the dosage, is normal and could take a few months to figure out the optimal dosage for Paul.

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

Update - Feb. 24

The past couple of weeks have flown by and I apologize for not updating the blog sooner regarding Paul's baclofen pump surgery. He is doing well although he still cannot do any rigorous physical rehab until tomorrow, which will be two weeks since his surgery and the incision should be completely healed. As we expected, he does seem a little weaker on his right side, however his right leg seems less stiff and his right arm is looser. That is all good. We had one follow-up appointment with the doctor, who increased the amount of baclofen Paul recieves daily and he will continue to tweak that amount to determine what Paul needs to get the best results.

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

February 11, 2009

I am happy to post that Paul's surgery went well yesterday. The procedure was over about 7:00 p.m. last night and the doctor said it went very smoothly and that he is very optimistic about the possibilities. Prior to the surgery, he videotaped Paul sitting, standing, walking with assistance, and stretching his arm so that he could measure Paul's improvement over time. Prior to the surgery, Paul spelled out, "I'll be happy once they implant this S-O-B" and he did seem very happy afterward but in some pain. Beth stayed with Paul at the hospital last night and it still is to be determined whether he'll stay over tonight as well. I'll keep you posted.

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!

Thanks again,

Thursday, February 5, 2009

February 5

The baclofen pump surgery is scheduled for next Tuesday, Feb. 10. Paul will stay in the hospital (UT Southwestern/Zale Lipshy) at least one night, maybe two but at this point we don't know. Once the pump is installed, I believe that the doctor will want to watch him as the first doses of baclofen are distributed via the pump and then fine-tune the amount and what time he receives the baclofen. We are excited but, as I said, a little scared. Paul has expressed sadness that he will have to have this device in his body but we've tried to assure him that, if it allows him to get stronger, gives him more control over his body, and, hopefully, walk with less assistance, than it will be worth it.

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.

Thank you,

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.