Paul's intense therapy continues... the good news is that his speech is getting better all the time though still baby steps as opposed to huge strides. And, with the harness and treadmill, he is able to practice walking every day and we are seeing improvement there too. Again, it is a long, long and very hard road but Paul is determined as ever. Please check out the link below to see see a video/photo montage of a recent treadmill workout put together by our good friend, Pete Lacker.
http://www.youtube.com/watch?v=R5EIoDF7QlE&feature=youtu.be
Thank you all for checking in!
Patty
patty.jerde@yahoo.com
Wednesday, May 18, 2011
Thursday, February 3, 2011
New Year, New House, New Equipment
It has been a busy five months since I last posted on the blog. In October, some wonderful friends of ours put on a second Jerde Cup and it was amazing. Rosemary Westerhuis and Anne Clarrissimeaux were the main organizers and they did a great job putting together the tournament, which was at Hackberry Creek Country Club in Irving. They left no stoned unturned when it came to organizing it with great goody bags, cool Jerde Cup hats, and a raffle with many fun prizes, including an iPad and a Behind-the-Ropes with David Feherty, which was the chance to hang out with golf commentator David Feherty behind the ropes at any PGA Tour tournament. A friend of ours, Reggie Cusick, actually won the Behind the Ropes prize but, being a PGA professional himself and already having experienced being behind the ropes several times before, Reggie generously put the prize on the auction block and it was auctioned for $500. It was the grand finale to a beautiful day weather-wise but also one of friendship, family, fun, and a lot of goodwill. The best part though was that Paul was able to participate somewhat. Our friend, Gary Pickle, who oversees golf for RISE Adventures, brought the golf cart that Paul had been practicing with all summer so that Paul could use it while hitting on the driving range and then he played a couple of holes with his old golf buddies.
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!
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
What Paul Did This Summer
Paul's therapy has continued throughout the summer with walking on both the treadmill and with his Rifton Pacer Gait Trainer; speech three times a week, physical therapy, and now even a personal trainer to help work on his strength and balance. In addition to walking in therapy, he walks several times a week with the walker on an indoor track. Some days Paul does great, and other days are really hard but he never gives up and never wants to stop until it is the point where I have to encourage him to rest or, I am afraid, he will pass out. Our real challenge now is finding a facility that has a treadmill with a harness (which helps him balance) that he can use as much as possible. I feel like this is a key to his walking; that he walk as much as possible as often as possible. If anyone has any information on a place that has this type of equipment and would be open to Paul walking there, please let me know.
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!
Patty
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!
Patty
Monday, April 26, 2010
Jordan 63, Jerde 62!
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!!Air Jerde, anyone?? :-)
Willie
Wednesday, April 7, 2010
I can't believe it is April already. Things have moved pretty fast in the past few months. Paul left Baylor in February and no longer is in an all-day neuro program. However, he does have therapy every day and continues to work very hard on his recovery.
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.
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
Back at Baylor - But Not For Long
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.
In addition, Paul's talking continues to improve too, although still very slowly. It is always baby steps but if he continues stepping, eventually he will get to where he wants to go. He also is getting better at using the Dynavox to spell out what he can't say so, overall, he is communicating better and better each day.
Paul has improved so much cognitively and is becoming more interested in doing the things that he did pre-accident. As you can see from Willie's post below, he has been going to the basketball court and practicing his shooting. He also has been reading more, something that took a long time for him to get back into. The first full book he read was Cormac McCarthy's "The Road," which is kind of a downer as it is about the apocalypse but what he chose to read. I probably would have picked something a little bit more uplifting but to each his own. Other activities he does more and more are painting (he and Buzz have their canvases side-by-side on the wall); working a little bit designing on the computer, listening to music, watching "The Office" (Willie lent us seasons 1-4 so we went on a binge a couple of weeks ago), and playing table tennis. He also still has his sense of humor.
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.
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.
Thanks for reading!
Patty
Sunday, January 17, 2010
He shoots, he scores! :-)
Happy new year!For the past several months Paul has been going to visit his old basketball gang on Saturday mornings. Although he's still not able to stand on his own, he is able to stand with support and use his left arm to shoot baskets. The first time he went back he shot over a hundred shots and made one. The next week he made two, then four, then eleven. This past Saturday he made 38, and his best week ever was 44! The guys have been giving him lots of encouragement, which of course includes some good natured ribbing. Paul claims next week he'll make 50. :-)
Paul consistently inspires me. Onward and upward!
Willie
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.
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.
Surprise!
George "helps" with the decorations.
The gang.
The not so reverent gang.
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.
Surprise!
George "helps" with the decorations.
The gang.
The not so reverent gang.
Tuesday, June 30, 2009
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,
Patty
Patty
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.
Patty
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.
Patty
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.
Patty
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!
Love,
Patty and Paul
Thank you again everyone for following the blog, especially Mary Ellen up in Manistique, Michigan. We can feel your support 1,200 miles away!
Love,
Patty and Paul
Saturday, May 9, 2009
Tuesday, April 28, 2009
A note from Dave Cowling (Paul's brother in law)
Willie,
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.
Thanks,
David
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.
Thanks,
David
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!
Blessings,
Willie
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.
Patty
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.
Patty
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.
Patty
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.
Patty
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