The Road Ahead….an Update on Christine

November 28, 1999

Susan Pappalardo

For those of you who read the article I wrote on my sister Christine, here’s an update a little over two years later since I wrote the article. For those who didn’t read the article, Christine was hit by a drunk driver while out on a bike ride in May of 1997. She is an athlete who’s true love was to run. In April of 1998, Christine moved back into her apartment with her husband Bob after eleven months of grueling brain injury rehabilitation. She was very happy to be back in her familiar surroundings even though life was still very unfamiliar. To manage at home, she requires an aide from 7:30 in the morning to about 9pm (there are two shifts a day). Her husband and my parents are a core part of her support. Bob is amazingly committed to my sister and makes sure that they continue to have a full life no matter what they do. He manages to organize and arrange events for Christine and himself that out do most of us. They go to church every Sunday, go to plays, visit Cape Cod, attend alumni cross country events, go to road races, etc. This is all fit in between getting ready for the day, therapy, getting regular medications during the day and taking naps two times a day.

My parents are there, wherever that may be, whenever they are needed for feedings, medications, therapy at home, driving to therapy visits, sharing a good laugh, or sharing a good cry. My mom goes over to my sister’s apartment around 10:30 in the morning and comes home shortly before supper. My dad, who retired last year, has become the man behind the woman getting meals ready and doing what he can to fill in where he can help. They do take breaks and rely on friends at times to help out.

Christine has made a lot of progress since she went home, but still has some goals she really wants to achieve. Her primary goal is to be able to walk and a close second after that is to be able to talk. She works hard at both of these, but finds that simply getting through a day takes up a lot of time and energy, so the pace is slow.

Christine made remarkable cognitive recovery from her brain injury and being in a coma for two and a half months. She is virtually herself inside. We are all thankful for this fact.

She receives physical therapy and speech therapy during the week. Just recently she went through a big transition with her therapy and overall care. The rehab hospital that she first went to told her that they could no longer help her and a lot of her therapy was scaled back over the summer. My understanding is that they couldn’t keep her on their patient list based on the hospital’s insurance coverage and the doctor’s were at a plateau with what they could do. She was pretty down and frustrated. You can imagine the desire to maintain training no matter where you are in your training program.

Bob knew this was coming and had researched a clinic in Pennsylvania, the Moss Rehab Clinic. This was a place that Christine and Bob could attend for four days and go through a thorough analysis to see if Christine could achieve her goals and to get their recommendations on a therapy plan that would help her. They went in September and it was a successful trip from the standpoint of looking at her condition in a new light. Motor control analysis as well as gait and motion analysis was performed. The doctors that saw and analyzed her had some concrete recommendations and feedback for her. There were several multi-page reports generated with details on how her muscles were firing and what her range of control was for each of her limbs. The clinic had connections at another rehab hospital near where Christine and Bob live in CT. So, they left the Moss Rehab Clinic with a new physiatrist to visit in Hartford, CT and a new game plan for her therapy. This was a much-needed spark in her outlook on the road ahead.

Christine can vocalize, but still primarily communicates with her letter board pointing to each letter to spell out her thoughts. We bought her a voice integrated laptop computer earlier this year to help her communicate in social settings. It makes her sound like Steven Hawkings, but she’s willing to use it and it helps. Setting it up is not easy enough to be a part of her everyday communication so it only comes out when she has guests. I’m hoping we can use it while I’m on the telephone, but we are having some speaker phone problems on their end that we need to work out first.

Christine still has her stomach tube and this is where she intakes her food, liquids and medications. She does eat food through her mouth, but it has to be mashed up so she can manage it. Eating through her mouth is a form of therapy and it doesn’t happen every day. My mom has found that after she eats a mashed up banana she is able to vocalize better. The eating has warmed up her muscles! Btw- Christine loves Cran-Rasberry Juice and it’s a daily part of her food intake.

My husband Brad and I went back east for a trip to visit Christine and family this past August and it was great to see her and witness the progress she continues to make. We planned the trip early and around two very famous road races. Joan Benoit’s Beach to Beacon in Portland, Maine and the Falmouth Road Race in Falmouth, Massachusetts. Christine and Bob traveled up to Maine for the Beach to Beacon. Bob and I raced the 10K while our two nieces raced in the Kid’s race. It was a beautiful day and we even got to meet Joan. Christine and Joan have been developing somewhat of a friendship. She received a signed poster from Joan after a request was made via a friend of Joan’s husband and Christine was very touched by the gesture. Bob is the man behind the connection. He races every road race he enters with his Team Christine t-shirt on and if he’s got a number for Christine, he wears both numbers. They loved racing the Falmouth Road Race together and Bob continues to enter both of them. Last year he wrote in an article about Christine and scored her VIP passes for her to view the race. That’s when she met Joan for the first time.

Joan is a wonderful person and knows how to give a human touch to all that she does. She hosted an excellent race at this year’s Beach to Beacon and her giving spirit permeated the event. She’s a great beacon for the sport of running.

After Portland, we headed down to Cape Cod to my parents summer home where Christine and Bob love to visit. It was August, but it was a lot more like a wet and cool summer in Washington for the four days we were there. Go figure. The day of the Falmouth it poured…I mean down poured. Brad and I got Christine to the VIP parking area and it was filled with ankle deep puddles that got deeper as we waited to get out of the car to view the finishers coming in. Bob and a friend of Christine’s did the race. When we finally dared to get Christine out, we were wading through calf deep puddles. It was a sight to watch Brad and me manage her wheelchair and umbrellas toward the VIP area. Christine was all smiles and was psyched to be watching the finishers bring it in. We cheered on Joan as she went by and then when her friend and Bob crossed the line. You should know that it was Christine’s deep love of running and of the Falmouth that we all went out and endured the elements that day. It was well worth it. I think that Falmouth will go down in history as the wettest they’ve ever had.

Another amazing therapy event that we got to witness on our trip was Christine in the pool. We get her into her suit and tape up all of her tubes so she can be in the water. She enters the pool by transferring from her wheelchair to a hydraulic lift. Several people assist in this process and it’s exciting to watch. Once in the water, a therapist, my Mom in this case, works with her to kick her legs and try walking. She loves the water and she looks very happy without the force of gravity weighing her down. She feels the subtle movements she is able to make much more in the water and is able to control them better. This pool session was at a YMCA on Cape Cod and the very helpful instructor at the pool gave my sister a new floatation device to try around her neck. It allowed her to be free of all of us and be on her back kicking her legs. It was great to see her be independent. She was all smiles.

One of my sister’s favorite places is being on the beach at Cape Cod. We took her there a couple of times and we put her in her beach wheelchair which has great big puffy tires so that we can easily push her on the sand. I’ll never forget the first time we stood her up and walked with her. Therapy on the beach is the best. Christine’s left side has the most control and she is able to mover her left arm, hand and leg. Her right side is not as good and she can only initiate movement from her hip and shoulder. The therapists are working with her to improve the imbalance, but it’s unclear how much it will improve. She has a couple of braces for her legs. They keep her from hyper-extending and make it easier for her to shift her weight to walk. She is getting a new set of braces as a result of the gait analysis that was done in September. The Moss clinic didn’t think that her existing braces were helping her in the way she needed and were actually making it harder for her. This reminds me of the process of getting orthotics. Everyone has a different approach on how to build them.

My sister is very lucky to have such a strong support team keeping her moving forward. It can be overwhelming to have so many people helping at times, but in the end life has changed and her support team is required for her to get through each day. Christine is still the warm and outwardly caring person that she always has been. You can’t say hello to her without her complimenting you in some way. She does not receive compliments well and likes to keep the conversation on what you are doing and if you are a runner, what you are doing with your training. Christine’s pace may be slow but it is a steady effort and as she passes each mile marker in her therapy there is a huge amount of cheering from her supporters.

Susan, Bob and Christine standing on the beach in Dennis, Cape Cod.