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last updated 1:00PM Eastern Time, 5/6/2002 January 2002 Journal
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Wednesday, January 2 10:00pm Eastern Time, 1/2/2002 Happy New Year! It's been a little while since the last update, but hey, it's the holidays.The Smethurst family travelled to Colorado this holiday season. I flew into Colorado Springs on Thursday morning, Dec. 20 and Mom, Dad and Dave showed up that evening...after having driven from Virginia in two days! (UPS has got nuthin on Dr. Smot!) Dave was very excited to be out of the car and after dinner even deigned to kick all of our butts in backgammon. (The boy has a gift for rolling double sixes in the last half of the game.) Friday, I had the opportunity to go with Dave and Kath to two different therapies that Kathy had lined up. The first was a cranial-sacral (sp?) session. This kind of therapy deals primarily with the brain (that the "cranial" part) and the spine (all the way down to the sacrum). There is not a whole lot to describe about this session. The therapist puts her hands very gently on Dave's head, neck, shoulders, chest, arms. Dave lies on his back, closes his eyes, and looks altogether quite comfortable. The therapist never applies much pressure -- this is not a traditional massage. Instead she seems to look (or feel, actually) for rhythms, tensions and weaknesses in David's head and neck. She is focused on his energy instead of his muscles. When she finds something out of balance, she then works with it very gently to try to bring the rhythm or energy back into balance. She asked Dave a lot of questions, all of which he answered, but I'm not altogether sure that he understood them all. Some of them sure had me scratching my head, but then again I couldn't feel what she and Dave were feeling. Next we moved onto a therapy that the medical establishment has not altogether embraced. This is a combination of different approaches that this woman developed to help her own child (I think) with ADHD. It is called brain integration therapy, and Kathy described a little bit of it before. The theory is an interesting one: in order to function properly, the brain must be in balance and integrated (working together). This means integration between left and righ, between front and back, and between the top and bottom. This therapy works to rebuild connections in Dave's brain that have been damaged by forcing different parts of the brain to work together. By having David look a particular direction or say/think something in particular, she can activate very specific parts of the brain, e.g. the speech part, or the smell part, or the part that controls his eyes or his leg. She tests how strong each of these parts is, but you wouldn't believe the test if I told you. Then she works to connect the weak parts of the brain with a strong part. This is done in two ways, so far as I could tell. First, if you're at all familiar with massage or Eastern beliefs about the body, you might be familiar with the concept of energy meridians -- these are major centers and/or channels of energy that traverse your body. The idea is that poor health comes from an imbalance or blockage in one or more of these meridians. The first way to strengthen Dave's brain, then, is to give a little electric shock to particular points along particular meridians (it's less than the level of shock you'd get if you scuffed your socks along the carpet and touched the doorknob). She shocks very specific points depending on which part of Dave's brain she's trying to activate. Second, with Dave looking in a particular direction and thinking a particular thought, the therapist would force Davids brain to coordinate movements on the left and right. This was done, quite simply, by having David touch his left knee with his right hand, and then his right knee with his left hand. Kathy and the therapist each moved a hand, and they each lifted a leg to meet the opposite hand. They would do twenty or more reps of this focusing on a particular part of the brain, and then shift focus and do it again. Kath had had quite a workout by the end. Dave seems to enjoy these therapies. He doesn't understand how exactly they are supposed to help, I don't think, but I'm not sure either Kathy or I understand, either. But Dave likes to be working, and whatever it is he is doing seems to be making slow, steady progress. I had last seen Dave at Thanksgiving, and I saw noticeable progress by Christmas. At Thanksgiving, David was still relying a lot on the cane, even around the house. His balance seemed a little bit precarious, and he still had trouble getting his right foot over the lips of stairs as he climbed. By Christmas, David seemed a lot more steady on his feet. He walks around the house with much more confidence -- walking to the bathroom or making breakfast without the help of the cane. (How can a cane help to make breakfast...?) David did a lot of walking on snow and ice while in Colorado, and there was not (as far as I know) a single incident of slipping or falling. We walked with him, of course, but he was very steady on his feet. We did check with his doctors about skiing-as-therapy for him. What we were told was that while this may be good in another year or two, it would not be such a great idea this close to the surgery. Apparently David's skull will slowly grow onto the prosthetic that was implanted in September. This will eventually form quite a good shell for Dave's brain, but we need to give it more time to grow together before we risk any kind of fall. I think Dave had a pretty good trip. We went to Frisco, CO, for the week of Christmas istelf, and spent a good amount of time with the Barbara Bell and Steve and Becky (Bell) Huff. Dave got to ride a snowmobile up to a restaurant in the mountains while the rest of us hiked and snowshoed up. We were welcomed with a delicious hot chocolate and a very nice meal. Christmas itself was quite good, and it was great for all of us to be together again as a family. We even left the kids with the grandparents one night and had a great evening out with Dave, Kath, Brooke, Steve and Becky. And yes, I got to go out with the big kids. Dave was a little uncomfortable at first in a bar setting, but the crowd thinned out a bit, and we finally got the opportunity to try to draw Dave out a little more. With patience and careful questions, we actually got to have a pretty good conversation with him. Mostly he aswers with Yep's and Nah's, but he also starts to put together three and four-word responses that convey quite a lot. If he thinks you're serious, and he's in the right mood, and you're in the right environment, Dave can respond well to questions of the "How was the trip out here?" or "What was the best part of the dinner/game/movie/trip?" You might get a "Long drive!", or even a "Turkey was tasty!" Dave still gets a little overwhelmed by lots of conversation going on around him. He does much better with a small group of people, especially if they can include him in the conversation. During a normal dinner conversation, Dave often tries to listen for a while (you can see the effort on his face), but eventually he will just have to tune out. It's just too much for his brain to process and keep track of. So, the biggest challenge for Dave right now is his speech and cognition -- both of which are tied to aphasia. He is getting VERY excited for the six-week, intensive aphasia rehab program that he will be starting at Woodrow Wilson towards the end of January. He will be living at Woodrow Wilson during the week, and will be at home on the weekends. There are (I think) five other patients in the program with him. David's goal is the get better. If he were into New Year's Resolutions, that would be his. The more he can do to get better, the happier he is. He loves to work out, because he can see the results. (We found a gym in Frisco, and Kathy could hardly keep up with him on the stationary bike.) He loves to do his homework for speech therapy, because he knows it helps. And he loves, more than anything, to see his friends. So, friends, we ask that if at all possible, please come visit Dave. That would be a great resolution to actually keep, right? Come spend a weekend, or a night, or an afternoon. Take Dave to a game or dinner or a movie. Take him to a concert, because he's dying for live music. Even a little show in Charlotteville would be great, or Richmond, or DC. Go to the Foxfield races or a UVa lacrosse game. Mom and Dad WANT you to come. Have a cookout, or (these days) just sit inside by the fire. This is the best way to help right now. Boredom is the worst possible state of mind for Dave, and he has already gone through most of the movies at Blockbuster. Even a little visit or an afternoon chat would be great. Mom and Dad try their hardest to keep Dave entertained, but it's just not the same to hang out with your parents. And frankly, visiting Dave is a tremendous help to Mom and Dad as well. They get to spend very little time alone in their retirement, and even an evening alone while Dave is at a movie or out to dinner is a real treat for them. So can I be any more blunt? PLEASE come visit! Everyone in the house would love to see you! You won't be imposing at all! Just call Mom to let her know when you might like to come, so that she can coordinate things. 540-456-6210 Whew! That's it. I've got a few photos from Christmas that I'll post as well (one of these days). I wish you all the very best for 2002. It's gotta be better than last year! All our love in the
new year!
Monday, January 14 4:00pm Eastern Time, 1/14/2002 This message is from Kathy: I don't know about you, but yesterday was a bit surreal for me as I pictured how upside down my life was turned one year ago to the day....January 13th when Dave had his fall. I still don't let myself feel the full emotion of fear, the "what if's" if Dave had not survived his surgeries. Remember the call? The panic, the racing to the nearest airport paying whatever ridiculous price just to get to San Fran ASAP before Dave.....what died? I never let myself believe that he would leave me. I prayed avidly for him to just hold on until I got there. I'd call Tuts between flights to get any information that he had. That was one the the hardest days of my life; right up there with the day Molly's pediatrician told me that Molly either had a brain tumor or autism. I wasn't sure which one of those options to pray for in her case but in Dave case I knew that all I wanted initially was for him to live. Then I wanted him to have a "full recovery" once we began clarifying our prayers. It's truly amazing that Dave has come as far as he has. He's NOT a vegetable, he CAN feed himself, he CAN walk, and his talking is coming a long. He WILL live an independent life. I saw Dave's neuro-surgeon on Dateline the other night. Dr. Holland was treating the photographer who got knocked down on the sidelines of a San Francisco 49er football game last winter. The man went in to San Fran General because he was knocked unconscious and needed to be looked at. It was emotional for me to recognize the halls of the hospital, the beds in the ICU, as well as one of Dave's doctors. As it turns out the man was fine from the fall but they discovered a brain tumor in his CAT scan. The patient felt blessed that this accident had occurred because otherwise he would have never found the tumor until it was possibly too late. He had surgery to remove the tumor and he was back to work in 6 weeks. The reporter asked Dr. Holland if he saw very many patients with that kind of positive outlook on such an awful situation. Dr. Holland smiled and said that though they couldn't explain it, patients with a positive attitude tended to fair better than those without. I had to wonder if he was thinking of Dave too. It was great having the family here for Christmas though 3 weeks got to be a bit long for Dave. I think that my kids were starting to drive him crazy, and quite honestly I probably was too. I was really second guessing the close friendship that Dave and I had before his accident. On this trip I realized how much of our prior relationship was dependent on Dave keeping me entertained. He always had me rolling with funny stories and details of his fun life. Now that that was different, I found myself to be quite unentertaining. Brooke, sweet Brooke, helped me to have a better perspective and not take the whole situation so personally. The reason I'm sharing this is to help other friends who may also experience a similar feeling of inadequacy. Because conversations with Dave are not always reciprocal, stories end quickly and there is silence hanging between you. My brain was constantly trying to come up with something else to talk about and when Dave doesn't have his own story to throw in I'm left feeling like I'm not very good at conversations. Brooke shared that he too had a hard time (which made me feel better because Brooke is pretty funny) and that while watching golf Brooke would make a comment about some shot. Generally Dave would have jumped in with a story about one of his games and the conversation would have continued. Now, Brooke says, the conversation dies before it starts because either Dave does not want to respond or he doesn't yet have the ability to. I don't want to sound negative because Dave has come so far and his language continues to develop. It is just interesting to me to learn the different stages of brain trauma recovery, to learn better ways to help Dave as he works hard to recover, and to give his friends a realistic picture of Dave's challenges so that they are not uncomfortable or surprised when they get together with him. I love too seeing the same old Dave in this body that is fighting so hard to get his life back. He has that same twinkle in his eye. That same cute sense of humor. That same athletic ability that pushes him forward. I know that being with his friends reminds him of what he wants to regain. He spoke often of living on his own again...of driving a car. After spending the day with his co-workers at Jack Nadel, he was hopeful of rejoining them one day but did say "Got a long way to go" before that will happen. Neat that he's aware enough to recognize that. Today Mom and Dad are attending an aphasia workshop to help family members better understand how to communicate with Dave. I can't wait to hear what they learn. I'm also looking forward to the book that Jay is writing about this whole experience. [Editor's note: this book idea needs a lot of work... -- Jay] You will all buy a copy won't you? Many of you will see yourselves in the stories I'm sure. Do you think that Dave's ego would get too big knowing that there is a book about him? I'm sure he's been hoping for something like this his whole adult life. As long as Jay portrays him as a guy "that just wants to be held" I'm sure he'll be fine with it. Kathy Tuesday, January 15 12:30pm Eastern Time, 1/15/2002 A message from Dad. David has started his aphasia clinic at Woodrow Wilson. (See the address below.)
We had
a good trip over the WWRC yesterday and left Dave seemingly First a quick quiz
about aphasia (correct answers follow the quiz). ANSWERS: As more and more of
Dave's friends call or visit, they will need to be Needless to say we
thank all of Dave's friends who have already engaged Dave will be residing
at the Woodrow Wilson Rehabilitation Center He will come home
each weekend and socialize with those who can plan a Tuesday, January 29 10:30pm Eastern Time, 1/29/2002 This message is from Kathy: I have to say that last year at this time I really thought that all of your prayers were going to have my daughter Molly talking by now. Did you stop sending those positive thoughts her way 'cause she still hasn't said a word? Molly's 5th birthday is coming up in 2 weeks. We already know the location of the 1st word party, who the entertainment will be, what food and drink (lots) we'll have. We've had lots of time to plan.....we just don't know the words that will be celebrated!! So send out those prayers again, okay? Since last year, Molly has made some wonderful progress. She is learning sign language which has decreased much of her frustrations with us when we couldn't read her mind and get her what she wanted. She is playing more appropriately with toys and her brother. She is understanding much of what we say to her which is VERY cool. She needs to understand before she will talk, right? She smiles and laughs often and doesn't seem so trapped in her rigid routines. We continue to remain hopeful that she will lead an independent life one day. The struggles remain of course. Molly eats practically nothing which stresses me out. She is so hypersensitive to texture that she refuses to eat most everything and throws up if we force it into her mouth. She wakes up for 2 hour spells in the middle of the night which makes for cranky parents the next day. Her crazy therapy schedule keeps me on my toes driving her from occupational therapy, to cranial sacral therapy, to speech therapy, to school, to 20 hours a week of home based therapy, to the chiropractor to her MD..whew. We all would do ANYTHING for our child though wouldn't we? So here I go again getting ready for our 2nd Annual Autism Golf Tournament. I'm composing a letter to try and lure a known "someone"....an athlete, movie star, politician etc. to come to our event on Friday, July 12th. This is where YOU come in. If you're famous...call me :) If you know someone that is who might be willing to help us....call me. (719) 685-4593 They'll get to golf on the prestigious Air Force Academy Silver Course and enjoy the company of lots of fun people. I'm hoping Dave will be there and we all know how much fun he is. All you golfers out there, mark your calendar and come on out and join us in July. Like last year, all of the proceeds will benefit local families trying to get services for their children with autism. Thanks for your help and connections! Love, Kathy |