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.