Wednesday

Thankfully today was a bit less agressive than yesterday. At breakfast, Linda did a bit of self-feeding with her new assistive device. She doesn't really like it, and it doesn't quite make her completely independent (she still needs a bit of help getting the last few inches to her mouth). Hopefully in a week she'll be strong enough to do some without any assistance.

Her other big new thing was the afternoon PT session. She rode a stationary bike for 20 minutes. It wasn't really tiring, and she enjoyed it a lot, so you can guess she'll be doing it again. The motion should be helpful for training to walk.

Tuesday

Today was a very productive day. Obviously having Linda's feeding tube come out on its own was very convenient. She told me later in the day that it happened when the nurse came in at 4am to flush the tube with water. Apparently it was stopped somehow and the water forced it out. Pretty painful according to Linda, but I don't think the alternative was going to be great either.

Breakfast this morning included a bunch of new foods. Because of her good swallowing test yesterday, she got to have all of her liquids without thickener. This morning it was orange and pineapple juice and coffee. Because of a mixup, her tray came with soft food instead of puree food, including real biscuits and gravy and real waffles. I thought it was part of the order, so I fed it to Linda anyway. Luckily for her, the speech therapist was 15min late, because the ST was freaked out about it and ordered the kitchen to bring up some puree items instead. Linda ate both, and it went pretty well.

Linda also experimented today with a new assistive device for her arms. It's kind of a sling that hangs from a spring. The idea is that it gives her arm support while leaving her lots of degrees of freedom for movement. The OT suggested it for self-feeding, but Linda is also interested in using it for handwriting and for reading. We probably practiced with it for 2 hours today.

We were both pretty tired because we worked a lot even when there weren't therapies. Linda was pretty teary tonight. I finally told her that if she didn't stop crying I was going to wheel her around the halls in her chair. She'd have to behave better in public. We roamed the halls for about 30 minutes.

We started The Fellowship of the Ring on DVD tonight. You know Linda is tired when she will do something passive. Neither of us fell asleep during the first disk which is probably a small miracle. I'm not sure when we'll get to the second disk. Life is pretty busy around here.

Linda Has Finally Agreed to Let Us Put Pictures of Her at Rusk on the Blog
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Peg tube comes out

We saved ourselves a trip to the surgeon this morning. About 5am it worked itself out on its own. Linda says that it hurts a lot less now. She just has a gauze dressing over the wound which will heal quickly now. No fuss. We celebrated by eating a tub of chocolate pudding.

Monday night

Well, today was a big day. In no particular order, these were the events.

At 1:30 this afternoon, Linda had a swallowing test. They gave her thinner liquids to try and a few pieces of fruit and bread. Her swallowing is much faster and more coordinated, so she can now have liquids as thin as she can tolerate. She is also starting to have some food ground rather than puree. She had some ground sloppy joe tonight. The only thing she wasn't so great at is drinking thin liquid from a straw. Straws deliver a lot of fluid fast, and that can be hard to handle. She can use a straw, but she needs to really concentrate on taking controlled, small drinks.

Linda almost got her peg tube out today. The doctor wrote the order and came by in the late morning to remove it. The procedure is simple. Water is removed from a bladder that holds it in place and then the tube is slipped out of the hole. She gets a bandage, but otherwise it just grows closed faster than you would expect (like pierced ears when you don't wear earrings).

Unfortunately when the doc got to the "slip it out" part, the tube was stuck. They tugged a bit, which you can imagine Linda didn't like and had one of the senior nurses give an opinion. In the end, they decided to go with the conservative treatment. They left it in, and they are sending her back to the surgeon who placed it to have it removed. We already know the procedure that will be used. It's straightforward and goes by the title "pull real hard." They just want to be careful, so they're sending her to the experts.

All of the therapists were delighted with Linda's wheelchair work. The physical therapist found some grip foam to put on the wheels so Linda can hold them better and we pumped up her tires. She is doing better than ever. Everyone encouraged her to practice all she wants, although they disagree on the details. The PT suggested that she use her legs a lot, "walking" her chair. The OT suggested that she use her arms a lot. I suggest we lock them in a room with boxing gloves and see who wins. I'm sure Linda will do both.

Feeling bad about getting around

Today we went to our first residence. I took Linda over to Wayne and Kathryn's to see where I was staying when I wasn't with her. There's a bit of a step going in which was a challenge, but we managed. I learned a few things there. First it's easier to push a wheelchair on tile than carpet. Second, it's tough to turn corners in a hallway. And finally (or really first), steps are a pain. It made me realize that our own house is even worse. There are more, taller steps; and our hallway is very, very narrow.

We went from there to the Panera Bread Store near by to get coffee. The coffee wasn't too great, but the bread was pretty good. Linda had some, and it went pretty well, so I suppose I'll be bring some back from Java Co. She likes their bread a lot. She seemed down, so I asked her what was wrong. The inaccessability of the house bothered her. She spelled I NEVER FELT HANDICAPPED BEFORE. That just goes to show how profoundly important the laws about handicap accessibility really are.

Linda is doing well physically. I think she'll be pushing her wheelchair (in a successful way) soon. She spent a good bit of time practicing again today.

Ellie was here. She has taken to sitting in Linda's lap when she visits. They both really like that. When Linda is working on something, Ellie will take her hands and help place them where they belong. She has obviously been watching someone do it, because she always stretches the fingers open the way the therapists do. I can't believe what kids pick up on.

Saturday

Lots of little things have been happening lately, but the biggest is that Linda tonight pushed her wheelchair about 20ft. It took about an hour I suppose or a bit longer and came in increments of about 1 inch. I helped her make turns but that was all. A good bit of the time was figuring out how to get her hands on the wheels to grip and push, and there was a bit of a slope to get over at the doorway.

She can only grip with her left hand, and she uses friction against the forearm of her right hand as well. Needless to say, the OT who has been off for the week is going to faint when she sees it. Linda also has enough strength to get her brakes off if you help her get her hands to them. She is almost strong enough to set them as well.

When she was done, she used her feet to push backward. It took about 2 minutes to get back to her starting point.

She is obviously a superhero.

Wednesday

Linda had her first bread today, some sourdough from the coffee shop. She had about 5 bites of the soft middle. She really enjoyed it but decided that chewing was still too tiring, so we put it away. We can try again next week. She also had a few corn flakes. Same kind of experience. She didn't really have trouble, it's just too hard still.

She was a bit down today again. She worries that her ankles will have to be cast. If you can't get your feet flat on the ground, there is a regimen of casting that you can do to get the calves stretched out again. Basically you stretch them as far as they can go, cast them for a few days. Then you get a break and repeat it for a couple of weeks, slowly making progress. No one has said she'll have to do that, but they haven't said she won't. At least she knows they aren't intending to break her ankles (which she originally thought was part of the deal).

Her shoulder is still bothering her. They still feel that it is from the shoulders pushing forward, although she doesn't seem to have that much spasticity in the muscle that would be responsible for it. I discovered this morning that the pain is less if you give her some traction on the shoulder (i.e. you pull on her arm some). Apparently that indicates an impingement, which isn't something I'm familiar with, but they said it has something to do with tight muscles I believe. In any event, she was tired this morning anyway so her morning PT session was stretching and massage on her shoulder and calves.

ironically my shoulders are beginning to hurt as well. I think it is primarily from picking up Linda so many times doing wheelchair transfers, although lifting Ellie and holding the steering wheel during the commute probably contribute. I told Linda she has some kind of obscure shoulder disease which she infected me with. I guess I'll try to stretch every muscle I can find that attaches near my shoulder and then take some ibuprofin before bed. We'll see.

Linda's speech therapy was about the same. I admit even I am getting impatient for her to be able to make more consonants well. I think a big part of it is the muscle in the back of your throat that lifts your uvula (the hangy-down thing back there). That muscle separates air from your mouth and nose and is what lets you build suction and pressure in your mouth. It lets you use a straw, and it also helps you get volume by making air go through your mouth when you talk. You need it to build pressure to form consonants like T and B, which otherwise come out as N and M. Apparently it is hard to exercise it; in fact you probably didn't even realize you were using a muscle for that. So we'll probably just have to be patient while it improves.

OT is going very well. Linda's arms have lots of (weak) strength in lots of directions. She has surprisingly good coordination, by which I mean it is surprising that she has any coordination at all. Her posture is improving and her sitting balance gets better and better. Probably her OT sessions are her strongest showings right now.

Tuesday update

I didn't see any of Linda's therapies today, but I talked with my sister who did. She said that Linda worked on a kneeling balance exercise for her afternoon PT session. Linda apparently found the exercise really hard, because it left her pretty unhappy this evening when I found her. I was surprised, because usually the things she does with Fred don't upset her.

Her occupational therapist ordered some kind of arm support for Linda to use during meals. I think the idea is that it should lift her arms enough that she can begin to feed herself. It sounds difficult, so we'll have to see. Linda usually succeeds at things up pretty quickly as you already know by now.

Tonight Linda told me that the doctors said she should start taking all of her medications by mouth. They apparently forgot to write an order for it, so the nurses didn't know, and she still got her meds tonight by tube. According to Linda, the doctor would like to remove her peg tube by Friday. I was surprised that she wasn't in a better mood with news like that; the tube really makes her feel not-human.

She also told me that the doctors want us to have Ellie tested for Linda's blood disorder. This is the second time they have mentioned it, so I suppose the mean it. Even if she has it I don't think there is anything they specifically would suggest for treating it at such a young age, but it's something we should know about if she has an accident or breaks a bone, etc. I'll have to set that up with our physician. They said her siblings should all be tested, and I think they would want her mother to do it too (since the trait seems to run on her side).

A trip to the mall and lying down on the job

Sunday we went to the mall. We didn't see anyone we knew, and we only stayed about 2 hours, but it was fun. We started at the Kaffeeklatsch and had coffee. We also picked up some of our favorite scented shower soap at Bath and Body Works and some new clothes for Linda at Eddie Bauer. Everyone was very nice and accommodating. The sales person at Eddie Bauer actually fetched clothes for us and brought them to where we were for Linda to look at. It felt vaguely like Pretty Woman.

Today Linda got some new tongue exercises to help her build up K and (hard) G sounds. You can try it. Put the tip of your tongue between your front teeth and try to leave it there while swallowing. You can really feel how the back of your tongue has to work at it, and that's the point. Linda can do it with effort already, and I expect soon she'll be a lot stronger.

My favorite therapy of the day was the morning OT session. The therapist had Linda lie on her back on the mat and then do various hand/arm exercises with her hand in the air (generally with the elbow on the mat or supported by the OT). I was very impressed by the amount she could do, particularly with her right arm. She could do all kinds of coordinated bicep, tricep, rotator cuff types of movement. There was only one movement in the whole set that she seemed very weak on yet, bringing her bent elbow up to her chin. Her left arm was nearly as good although not as strong. The OT suggested that the hand-over-hand feeding was responsible for strengthening her right arm. Perhaps we'll start making her eat with her left.

I didn't see the afternoon therapies since I was headed back to Kirksville. I did have a pretty good evening with Ellie. She isn't so different than before, and threw a fit about 10min after I picked her up from day care. She ate a good supper (provided by a volunteer) at least and was pretty fun to play with all evening. As usual, she resisted taking a bath, but she went to bed pretty much without event.

Out on the town

Our funnest news of the day is that we went out this morning. We were out for about two hours. Linda didn't know exactly where she wanted to go, but she had a few ideas. We started by going to Boone Hospital Center which might not have been every person's first choice. I took her in through the lobby which she, of course, had never seen. I showed her the coffee bar and the computer with the chicklet keyboard where we would compose updates for the blog.

Then I took her up to 4th floor. We visited the nurses desk where Linda had stayed after being in ICU. Many of the nurses recognized us and came over to express surprise and delight over Linda's progress. They were all strangers to Linda, but I think she enjoyed all of the well-wishing.

She wanted to see ICU as well, so we wheeled over. I showed her the waiting room, and told her how no one ever used it. As usual there was a whole slew of furniture in the hallway. I showed her how you have to pick up the phone and ask to be let in. I picked it up and asked if any of the nurses on duty had treated Linda Bindner a month ago, and after a moment they buzzed us in.

Now if you think the nurses on the floor were pleased with Linda, you can imagine how much these people were stunned. They had seen her at the worst, so having her come in, say a few simple words, and just generally be a real, alert person was impressive. They told a few stories about how I would come in and sit with her when she was sick. It was all news to her, of course. She didn't remember the room or the people or the events. But I think she was pleased to have visited.

We finished with a run past the cafeteria then back through the lobby.

After Boone, we went to a small coffee shop called "Coffee Tea and Spice" and ordered some coffee. It's very near Rusk, and we sat for a bit. I brought Linda's portable communication board which turned out to be helpful. I still can't understand a lot of what she says yet, but we were able to visit a little by spelling.

She seemed very unconcerned with being seen in a wheelchair or being effectively unable to speak (of course we were the only customers in the shop). Perhaps it's like breastfeeding. You wouldn't normally bare yourself in public, but compared to having a child and all that goes with it, that seems like something pretty silly and inconsequential to worry about.


In other news, Linda used a straw for the first time last night. She has a hard time generating an initial vacuum to make it work, but once she gets it, she does pretty well.

Her eating is incrementally improving. At the suggestion of one of the speech therapists, I ordered French cut green beans (not puree) today to see how Linda would do. It seemed to go well, and I expect her regular speech therapist will be open to trying other soft foods like macaroni and cheese or soft desserts. I think they may also start letting her have some thinner liquids.

After dinner tonight, Linda and I did what was probably an OT exercise. I put a fat pen in her hand and asked her what she was able to write (I was supporting her elbow the way they do at dinner). If you help her move her arm, she has enough hand control to mark in a box. She can't necessarily make a full X although sometimes she does pretty well. She did make a recognizable LINDA in block letters (although you would only recognize it if you know what she was writing). I dated it and put it in my scrapbook "Linda's signature 3/20/04."

I congratulated her. I said she can now enter into written contracts. She could get her own apartment and decide she's done with me. I don't think she's really considering it.

You'll want to read this:

One other big piece of news. There is now something of a culprit as to the cause of the stroke. The doctor at Rusk ordered some more obscure blot clotting tests and it turns out that Linda has an elevated level of clotting factor number 8 (I know no more than you about this). This is probably responsible for the clotting problems in her family history, and the doctor suggested that her close family members be tested. I forgot to ask what we should do about Ellie in this regard, since she is so young.

I asked the doctor why she would have gone so long without problems having been a heart patient, mother, and so on. I asked if he thought long hours doing the sedentary work of university life might be a factor, but he really couldn't say yes or no to that. I know she has had less time to exercise because of her work and family, but I suppose there's no way to know if that made a difference. She'll be treated for the clotting problem now that it has been identified; it should be similar to Sarah's treatment.

People are always offering to bring me things I need. I could use a box of "bill sized" envelopes (perhaps they call those "letter" sized). I could also use a long telephone cord. Long enough to stretch across the room. I think 25ft cords are commonly available.

Thanks.

Friday looking forward to the weekend

So what started a couple of days ago as cone stacking turned this noon into self-feeding. Linda was eating lunch with the occupational therapist doing hand-over-hand. Then the OT just supported her elbow and asked her to try and scoop. Well soon it was trying to get the spoon in her mouth and then several successes. All with just a little support.

I asked Linda if she felt like a super hero. She just turned a pair of tired eyes toward me and shook her head.

The doc signed us out for tomorrow and Sunday. So sometime in between therapies we are going for a drive. I don't know where Linda will want to go or how much stamina we will have, but I brought the map in from the car so we can decide, filled the gas tank, and cleaned out the front seat. We're all set. I would have washed the car, but I didn't want to be away for too long.

Benefit CD's

Thank you very much, Ben Ogden, for digitally mastering the tapes we made of Linda's benefit. Thank you also to Bob Mielke for providing the videocamera and manning it for long periods, and to Dereck Daschke for his assistance with the videotaping.

Ben said that the sound quality on the tapes of the music is not great-- you hear a lot of background conversations on the tapes-- but we think it will be great for Linda to see the bands, to see the crowds, to see the love.

Index Article

Bindner begins amazing recovery
By Laura Uhlmansiek
Published: Thursday, March 18, 2004

They thought they would lose her.

But Linda Bindner, lecturer in English, has amazed doctors, friends and family with her turn-around recovery from a stroke five weeks ago that left her entire body paralyzed, except for her eyes.

"Linda's recovery is a singularity," said her husband Don Bindner, visiting assistant professor of mathematics. "In statistics, we would say Linda is an extreme outlier. Her recovery is so good it just doesn't fit with the rest of the data."

Linda suffered a stroke Feb. 7 that damaged her brain stem and left her in a condition that doctors diagnosed as Locked-In Syndrome. The syndrome is a rare neurological disorder that leaves patients mute and paralyzed but fully conscious, according to the National Institute of Neurological Disorders and Stroke Web site.

With Linda's ability to move her eyes and communicate, she qualified to be transferred to the Rusk Rehabilitation Center in Columbia, Mo., on Feb. 19, said family friend Jen Creer, a former University instructor in English.

Don said that since then, Linda has been undergoing physical, speech and occupational therapy, and her progress has been tremendous. She slowly is regaining her arm and leg movement, her ability to speak and eat pureed foods, and her ability to walk with her weight supported in a harness, he said.

"She is always going to be a person that had a brain injury, and there are going to be things that are hard," Don said. "I'm very optimistic that she is going to recover reasonable life skills, that she will be able to speak and be understood, and that she will be able to walk."

Don Bindner said Linda has gained the sensation back in most of her body, but making the slightest movement is very difficult for her.

"I asked her if it is like when you fall asleep on your arm and you can just barely move it and it's an absolute effort, and then it moves a little bit," he said. "You go to move it, and you get a little tiny movement or you don't get any movement."

Her therapy sessions require a lot of effort and can leave her frustrated, especially her speech therapy, Don said.

"Sometimes she'll go to say something, and it will not come out the way she wanted it in her mind, not even close, and she'll laugh at how absurd it was when it came out of her mouth," he said.

Although some days can be tough, they still manage to keep a sense of humor through it all, Don said.

"We goof around and have fun a lot," he said. "She can say something, and I can't understand it, so I'll make up some dialogue for her, and she'll laugh. Or I'll tease her about if it is unfair to tickle a paralyzed woman."

Creer said the response from the community has been a tremendous help.

"It has just been terrific who has come through, people we know, people we don't know," Don said.

Creer said the fund-raising event friends and family hosted Feb. 20 at the Dukum Inn was a huge success and exceeded what they had hoped for to help raise money to help the family cover medical and child-care costs.

"It was amazing," Creer said. "We had 180 people come, and people started coming through the door before we were even ready. Don's family came, and his mom just had tears in her eyes to see so many people there."

Creer said this fund will be helpful because the costs for medical care will continue to add up for years.

Linda's colleagues also have showed a lot of support not only by supporting and helping the family but also by covering for her classes.

Dennis Leavens, professor of English, is teaching her Literature for Children class and said the response from professors has been a great help.

"The whole faculty has been very supportive," he said. "In fact, we have had more offers for volunteers than there are spots, so it has just been wonderful."

Leavens said many of the students were concerned about Linda.

"I think the students were quite upset, and many of the students in Children's Lit wanted Linda as a teacher and wanted what she brings to the classroom with her effervescent personality," he said.

Freshman Becca Maddox said she was upset when she heard about Linda's stroke because Linda was her professor for World Literature last semester.

"At the beginning, we didn't know if she would improve at all," Maddox said. "And now with everything that is happening, it all just seems so amazing and [my friends and I] are so thankful for that, and I hope that she just keeps improving."

Don said he is heartened by her progress and is optimistic for the future.

"Having her in her own clothes and having her be able to sit up and look around and turn her head and have her be able to say 'Fine' when you ask her 'How are you?' is wonderful," he said.

Child's play

It seems that every time I am gone for 24 hours I come back and there is some surprise. Today it was in occupational therapy. I learned last night that Linda had done something new, but when I asked her about it, she said it was too much to spell. We did it again today.

Linda asked to do a bit of rocking in the rocking chair, so we were in the gym already when the OT was ready for Linda's session. We moved Linda to one of the mats and Lindsay brought up a table. On it was a board with two blunt cones glued down on it (point up). There were a couple of stacks of identical cones sitting to the side.

I've been talking about Linda getting various small arm movements backs, but I have to think that you will be as surprised as I was to learn that the therapy was having Linda stack the cones up. The OT would set one cone to the side and position Linda's hand around it. Linda can grip, as I reported this morning, so she can hold the cone. With her elbow and wrist supported, Linda's job was to bring the cone to the center of the table, raise it 4-5 inches up and slip it on top of the cones already there.

With her right hand, Linda didn't even need to have her wrist supported. Just a little support at the elbow and she could do it. With her left hand she needed more help, particularly at the wrist. However she has a great left-hand skill as well. She can extend her fingers enough to drop the cone. She can't let go on the right yet.

That would have been enough to make me delighted for the day, but there's a bit more. When working with the left hand, Linda exhibited some really nice thumb movement after just a little bit of prodding. She can touch her thumb and index finger together. On a lark, the OT asked her if she could touch her thumb to her middle finger. She could do that too! And her ring finger! Now she couldn't get to her pinky, but really no one would have expected any of that. So she has a bit of homework to do touching her different fingers and working at getting to the pinky.


In physical therapy we practiced car transfers, i.e. getting in and out of the car from the wheelchair. It's pretty easy actually after you have a standing pivot, and we've been doing that for about a week. We took a turn around the parking lot and Linda didn't get dizzy, so the Dr. is going to sign an order saying we can leave and take a drive this weekend. It'll be Linda's first ride anywhere since Feb 7th that wasn't lying on a gurney.


For some home news:

Tonight I'm home with Ellie, who's growing so fast I can't believe it. She wanted to sit on the potty tonight and make farts. She is very concerned with how they smell, so we did it for about 20 minutes. After I got impatient, I told her we were going to get pajamas on and go to bed. She said she wanted to pee, but she hadn't yet so I said no. Well, since she didn't want to go to bed she ran off. I went to get her bed clothes and turn down the bed. The next thing I know she runs into the bathroom, steps up on her footstool and pees in the toilet. Who'd a thunk it. Miracles never cease I guess.

Wednesday lunch

I thought I would just drop in a note about this morning. I was feeding Linda breakfast, which has turned from speech therapy into occupational therapy. That means that we do hand over hand feeding. I put a spoon in Linda's hand and place my hand around that. Then we/I lift it up for a bite. The same happens with cups. The big thing is, after a while, when I wasn't giving Linda drinks fast enough, she instinctively moved to bring her cup up herself. It wasn't strong enough to do it, but I could distinctly feel all of the muscles move inside my hand! It was very neat.

Linda is getting stronger gripping, and we now have a ball of fancy Play Doh to work with. You put it in her hand and she squeezes finger impressions into it. As she gets stronger, we will transition to other colors of stiffer putty.

Where's my update?

I know you guys are wondering where your update is. Here it is. I stayed up a bit talking with Linda last night and was too tired to sit down at the computer and post the news. Tonight I am in Kirksville. Ellie just got out of the tub and we're watching a bit of Sound of Music before bed.

The weekend went pretty well. It's always quieter on weekends because there is less therapy. Although Saturday had a lot of visitors, Sunday was particularly quiet, since we only had one therapy, OT. Our physical therapist asked me to make sure that Linda got a chance to have weight on her legs and keep her calves stretched, so Linda did the standing frame for 30min too. She likes the rocking chair, so we worked that in for 30min.

Today was a pretty typical day, except that our speech therapist was out, so we didn't have speech. Eating meals counts somewhat as speech therapy, so it isn't exactly like abstaining entirely. And Linda and I worked on word pronunciation with cards. I tried to take us through words she uses a lot, the small connective words. She asks a lot of questions, so we did WHAT, WHY, WHEN. Obviously words like THE, AND, DO, and so on are important. We also ran through the therapists' names.

We had a long grueling occupational therapy today. They did electrical therapy again which means that electrodes were taped to Linda's arms and then electricity is used to contract the muscles over and over. Probably the most tiring part of it is sitting up without much support. She did that for about 45min (we ran over into the canceled ST slot). Since she was tired, we brought the rocking chair up and then did vision exercises. So she got an hour and a half of straight occupational therapy.

I left during the PT session, but she was just getting up in the standing frame. They really want her to do some weight-bearing standing each day, to keep her calves stretched and to prevent her bones from getting soft. Her morning session had been walking in a harness that holds your weight. Since you can't fall, you are free to really work on moving your legs the way you want them to go.

Mary (Linda's twin) just called tonight to say that Linda had bicep contractions on both sides. Over the weekend she had been showing some right arm contraction; she can sometimes bring her hand up to her chest. She can now do that on both sides. According to Mary, Linda was pretty excited. They brought all of the evening nurses in to check it out.

Saturday Visit

Yesterday, we went to see Linda on the way home from Kansas City. It was a short visit because we were all beat. She looks great!!! She was reclining in bed, and dressed when I came in, in a peach striped shirt and jeans. I can't remember whether she was wearing shoes, but I think so.

She smiled when I came in, and I can't remember what I said, but she shook her head in response. That was a little surreal-- because it was simultaneously very normal, and yet not normal. It's one thing to read what Don writes about what Linda is able to do: smile, laugh, shake her head, nod, but it's another to actually see her do it, particularly since it has been three weeks since I last saw her, and she was still in the hospital, with oxygen in her nose, able only to look up or down.

She has now regained use of all of her facial expressions (she does a great eye roll too), which is great because now she looks like Linda, albeit a Linda who is able to keep her body very still. Don says the facial expressions really have happened over the weekend.

She said when I was there: Pineapple (when I asked her what she had for lunch, though first I guessed waffle, and she laughed); eyebrow (the word they accidentally discovered, and are very proud of); she told me "bye" when I left, and she said something else, but I don't know what it was anymore. Maybe yes or no?

Mary and Phil were there-- there are able to understand her very easily, and fortunately, Linda is in pretty good humor about people guessing what she is saying. Two of my children were in speech therapy for years, so their speech was perfectly intelligible to me; I'm guessing it wouldn't take me long to decipher Linda's speech if I were able to make a longer visit. Mary was just beaming-- it was such a great visit.

There was playdough in the room, and I asked her if she had been playing with it, or if Ellie had been there, and she laughed. I said I had just seen her mom leave, and asked if Ellie had been with her. She nodded.

She looked so great that I just wanted to hug her, and I did. I had left Dereck and kids in the car, so I couldn't stay long, though it was so hard to leave; when Dereck came up, Linda was spelling on the letterboard, which I hadn't gotten to see. Dereck was jubilant, "She does look great!" It's not an exaggeration at all. Linda is back.

I asked if there had been any other Kirksville visitors-- now that we have scared you all away with the blog, it's time to re-invite you... She's feeling much better now and able to have more visitors.

Becky, I forgot to ask what rocking therapy is.

Saturday

Today was a light day in some respects, only a little therapy. She did some speech work and some physical therapy (the standing frame). I also did the rocking chair with her early for about 30 minutes.

She ate well today, although she wasn't too hungry at supper tonight. Still I think she is getting a lot of calories, which is what you need to discontinue tube feedings. I think eating real food generally makes her feel better as well, both physically and emotionally.

We had a lot visitors today. Eleven if you count me, although I suppose I don't count; actually most of them were familly.

Friday update -- end of week 3

In case you haven't guessed, Karen Smith found a ride back to Kirksville.

It's been another good week. Linda continues to make good progress. I thought you might be interested in knowing what a typical day looks like by describing today in detail.

Our day never really ends. Nurses come in at night and check vital signs, reposition Linda, give tube feedings, etc. Often they are kind enough to turn on all of the lights, so you can't really miss them, but they usually don't stay long. Things kind of pick up in the morning around 7am.

7am: Things start to pick up a bit around this time of day, with people in and out. Linda generally gets a breathing treatment around this time of day. That means she inhales a mist of albuterol (an asthma drug) for about 5 minutes. She doesn't have asthma, but they do it to keep her lungs open and working well.

7:30am: The doctors' rounds occur around this time. We see the head doctor for a few minutes and he answers questions and evaluates her. We usually see the internal medicine doctor as well.

7:30-8:00am: Linda gets dressed. Two people assist, usually me and a nurse. This morning we had a nursing student, so I taught her how to dress a person who can't help and transfer them from the bed to the wheelchair.

8am: Breakfast. For us this takes a long time, so we try not to get started late. This morning it took about 2 hours.

9:30am: Speech therapy. All therapy sessions last 30 minutes. We are often still eating breakfast at this time, so we just work on swallowing. Then speaking skills when we aren't eating.

10:30am: Physical therapy. Today Linda stood in the standing frame (with her upper body essentially free) for 25 minutes. They worked on wrist and finger movement while she was standing. Linda is starting to get various weak and a few stronger forearm and hand movements.

11:30am: Lunch. We ate until about 1pm and went back to our room to rest.

2pm: Occupational therapy. This therapy typically focuses on skills related to living. That might mean working on vision, upper body, sitting, or something specific. Today we worked on doing transfers (lifting Linda) to and from the wheelchair. For obvious reasons it's an essential living skill, and having me able to help enhances our personal independence even here at Rusk.

2:30pm: Speech therapy. Today the therapy consisted of Linda reading her Monday menu preferences aloud well enough that we could understand and mark her food selections. It doesn't sound like much, but it took the whole time and left Linda exhausted.

3pm: Occupational therapy. Today we did an electrical stimulation therapy to bring out wrist movement in Linda's arms. They used electrodes to contract the muscles in her wrists. She did it yesterday too, and she seems to have some new skill as a result.

3:30pm: Physical therapy. Today she walked with the therapist between the parallel bars. Monday they are going to try walking while suspended from a harness that can hold her weight with a focus on bending her knees (which tend to stiffen when she fears a fall).

4pm: It was nice outside, so we went out on one of the smoking decks for a while to enjoy the sun.

4:30pm: Dinner. Another hour and a half eating and hanging out with the speech therapists.

Linda was wiped out after dinner, so we laid down for a while. We had done a rocking chair therapy on Tuesday, so I asked her if she would like to go back to the gym. Strangely this offer made Linda cry, which I didn't expect. I finally got Linda to spell what was wrong and she told me that the therapists (both the PT and the OT) give her options for what she wants to do, but both went past the rocking chair option faster than she could say yes. She's been wanting to do it again all week, but missing her chances.

So around 7pm we we rocked for about 40 minutes. She was too tired to go long, and I brought her back to the room to nap. At 9:30pm I helped one of the nurses give Linda a sitting shower and dressed her for bed. She's sleeping so soundly now that she's snoring.

A ride for Karen

Karen Smith called to say that she is fine, but she smashed up her car in a wreck yesterday. If you are planning a visit today, she would appreciate a ride home. You might call and leave a message for us so we can tell her.

Visiting comments

I keep forgetting to say it, but as Linda gets stronger, she can probably tolerate more visitors. She is particularly more free on the weekends, but around 6pm during the week is probably good too. Each therapy lasts 30min, so if you come during the day when she happens to be busy, you might have to wait but often not for long.

She has some trepidation about visitors and having people see her fed like a baby, etc. I don't see any solution for that since I think visitors is better than no visitors.

Thursday update

Wow the days run together. I almost labeled this post "Monday update" but then I caught my error and changed it to "Wednesday update." You can see I realized my error there too.

I spent most of the day running errands, so I didn't make it to most of her therapies. Karen Smith was here for most of the day though and said things went well. Linda is eating well and faster. She only needed an hour and a half for dinner tonight.

Linda seemed pleased with how her therapies went today. She wanted me to report that she has a new skill. She can flex her right wrist up and down, and she's pretty pleased about that (she was formerly right-handed).

Her new wheelchair is working out well. She has no problem holding her own head, and I know she feels more actively engaged in the world since she isn't so reclined. She did report last night that she was short of breath whenever in her wheelchair, but it turned out to just be posture. Once she straightened up it was fine. Strangely she has a bit more trouble voicing when sitting up well, but she seems to be working through that obstacle quickly.

She personally feels that her progress is very slow despite the reality that her recovery is so good as to be off the charts (or at least an extreme outlier as my stat friends would put it). I told her that rehab is like a dissertation: weeks and months of mental anguish feeling like you are going nowhere at all, then looking back and seeing that you did a lot. Or maybe dissertations are like rehab. You probably never want to have to do either.

She said she likes me to stay the night because the sound of my breathing makes her relax. Then she told the nurse that I snore. So I don't know if the sound of my snoring makes her relax. All I know is that she likes to have me around.

During our conversations I discovered that Linda doesn't remember the hospital at all. She doesn't remember being visited, or the nurses, or much of anything other than small fragments. It's not really much of a surprise, and probably a blessing. She does remember a few tiny things, including the plexi-pulse boots that squeezed her feet, and the sound of her neurologist's voice, and the manicure that one of the volunteers gave her (thanks again, Doreen). I was really surprised when she remembered the manicure. I didn't even know she was awake for it.

The creation plexi-glass letter board seems to be the turning point for forming lots of memories. I suppose that just goes to show how important being able to communicate is for establishing memory.

Scheduler for Linda

This morning I received an email with an attachment for the Linda Bindner Scheduler. Many shouts and thanks go out to Jon Beck for developing this, especially all of the time that went into it!

If you will look to your right, you will see a link called Schedule for Linda or something like that (I've already forgotten what I called it). If you click on it, you will be able insert times you plan to visit Linda and then scroll down and "submit" your entry at the bottom of the schedule. (Jon, if I have this wrong, please email me ASAP!).

I haven't actually tried the scheduler yet, because I'm in Pennsylvania this week (and I feel acutely removed, anxious to return so I CAN visit-- Thanks, Don, for continual posting).

Please remember, of course, that the scheduler is optional, but it surely would be a nice way to make sure that Linda is not going for long stretches without visitors, or alternatively, that she is not overwhelmed with visitors on any given weekend.

Many thanks, again, to Mary Shapiro and Jon Beck for developing this.

j

Wednesday

Linda got the results of her SPCT exam. It was completely normal aside from the part about having had a brain stem stoke. So, that's good.

We're still eating, if slowly. It took about 2 hours to eat breakfast this morning.

She is getting a new skill. She can contract the thigh muscles used to lift your knee from the floor (i.e. marching highstep). It's really weak and she can't actually lift her foot off the floor, but it seems to be there.

She got a new wheelchair today. This one is much smaller and lighter, and she sits up straighter in it. It doesn't have a headrest so she has to hold her own head up all of the time, but that doen't seem to be a problem. Although it sounds small, a new wheelchair is actually big progress.

Her speaking skills are improving really well. She has a few words that can be understood in context, like "no." At lunch, her "ham" was unmistakeable as well. Most of the time, her language can't be deciphered yet, and sometimes what actually comes out of her mouth is so far from what she expects that it makes her laugh. But she did manage to answer a question for me completely orally tonight. She often laughs at unexpected times, so I asked her what she was laughing at. I had to have her spell the last word (orally, not with the letter board), but she was able to say, "I laugh at myself." I'll be honest; not even her speech therapist would have understood the whole sentence, but I talk with her a lot and have some advantage there.

We did have one fun speaking moment this afternoon. The speech therapist encouraged us to write down words on 3x5 cards to practice with. At the end of our session, I announced that we had a surprise (a word we had sort of stumbled upon). I held up a card reading EYEBROW and the therapist said, "No way." We all laughed a lot when Linda gave a slightly abused but completely distinguishable rendering of the word, including the BR sound.

Tuesday update

Today was Linda's first day with all three meals. Everything was pureed or thickened of course. She had biscuits and gravy for breakfast, chicken and mashed potatoes for lunch, and salmon (which wasn't that good) and cottage cheese and apple sauce for dinner. She ate a lot and got to skip some tube feedings today.

Her speech continues to improve. Her 'l' (ell) is very good as is her 'm' and 'n'. Interestingly enough she can pronounce words better when reading them than when looking at and naming an object. The speech therapist discovered that and it was really really surprising when she did. In general, most of her words are still indecipherable out of context, but you can often hear some of the consonant and vowel elements.

Linda's facial movements are becoming more expressive all of the time, although her expressions are somewhat more pure and unguarded than before. They're something like the expressions of a toddler, which have the same qualities. It's not that she can't hide her emotions (because she often does) and it's not that she can't lie, because she can do that too. Especially if it might get her food.

She was down today when she wasn't distracted by therapy. She is really understanding tangibly what being disabled might mean in terms of independence, even after a recovery, and that is very very hard for her. I can't really imagine it well. I had many of the same thoughts when Linda was still in the ICU and they were overwhelmingly sad for me. I couldn't even measure how much worse it must be for her.

Monday

We took a little ride to University Hospital today to get a test that the doctor wanted. It's called a SPCT (people always say "spect") scan. It works like all of those kind of scans. You sit in a little machine that rotates around you for 15min and shoots particles at you. This one shows blood flow in the brain and we'll get the results in a few days in color. The test was pretty uneventful, except that the dye they inject you with made her tongue tingly for a while.

It was a real drag going to a hospital, even for a test. As much as Rusk doesn't feel like home, a hospital is worse. Linda put a good face on it, but she was just being brave--she hated the whole thing. At least we didn't have to wait a lot, so we were back fast (about 2 hours). She perked up as soon as we returned and was laughing within minutes.

She's eating dinner tonight in the meal room with her sister Mary. Dinner in this case means mashed potatoes with gravy and thickened Pepsi. She had a sublime smile on her face when I left to make this post. The speech therapist there said she was doing great. According to Linda, mashed potatoes are harder than ice cream (it takes a lot of tongue work to get them to the back of your mouth).

Sunday update

Linda is doing well this weekend. She has one new skill that she is working on. She can now supinate her left hand (go from palm down on your lap to palm up). She doesn't have quite enough to completely turn it over, but the movement is unmistakeably there. She can also pronate her right hand pretty well now.

She also had her first ice cream this weekend. On Saturday she had Ben and Jerry's Double Chocolate Fudge. Ice cream is very difficult actually, but she did pretty well. Linda had some guilt about it because no one remembered to tell her that she could have it. She thought we were breaking the rules. I told her the rules on her board read, "Only the speech therapists and husband may feed the patient." The speech therapist said I could try ice cream with her over the weekend if we were careful. We had Starbuck's Coffee ice cream today and she did even better. She said it was nicer when you know you're not getting in trouble.

She should get to start eating pureed foods this week, including warm foods.

She stood in the standing frame today for more than 15 consecutive minutes. The top of the frame was loosened, so she had to contol her whole upper body for the duration of the exercise.

Post from Stephanie Weber

Jen,
I wanted you, Don, and Linda to know this...I tried to post a comment, but it was too big. (me and my wordiness). Anyway, I do have a package for Linda...and donation money. Should I still mail it to you in Kirksville? ( Answer: You can mail it directly to Rusk (I'm out of the office next week)-- look in the righthand column for the address)

-Stephanie

***********************************************************
Go Linda, GO!!! Oh that's so great to hear about her walking!

You wouldn't believe it, but there are quite a few people here at Disney cheering her on. I shared her story with my team, particularly the post Don put up about "Life's Unwritten Rules". Why did I do that? Well, I work with a relatively small, close, team at Disney and we've recently had lots of discussions about Diversity, stereotypes, and rules--things you think you know about a person.

So I thought of Don's post about rules. I thought of how none of us can imagine what going through this can be like, and how few of us even know how to react. But to know that rules are never rules, and that humor & love survive...that's just the best. Plus with Linda taking steps...honestly what rules really exist anymore?! =)

For me, it's tough knowing friends of mine are in trouble and being pretty powerless...for someone just hearing the story, it's even more removed. But this blog really helps. It's a true testament to the human spirit, and I hope it helps Linda too! So for that I have Disney support for Linda, Don, Jen and anyone else who needs to know we're still cheering for Linda and her family!

Here are some of my co-workers' (Operations Integration team) comments...we are sending a donation package as well and will continue to follow the blog:

"What beautiful spirit in the face of such a devastating [event]...but isn't it just at these times that we show our true character?"

-Rosely Piraino, Secretary

"This [is] very moving, and your friend is fortunate to have such a loving and common sensical husband."
-Barbara Higgins, Director

"We take so many things for granted in this life. Let your friends know they are in my prayers, and I do believe in miracles - thank God for her amazing husband!"

-Ann Marie Randolph, Secretary

"Life is so precious! May I contribute to the care package?"
-Fay Golding, Secretary

"Amazing. Life is so precious."
-Carrie Presson, Manager

"Let me know if I can help. I'll be adding their names to my church's prayer list. Miracles do happen!"
-Sandy Smith, Communication Specialist

Stephanie Weber
Web Maintenance Administrator
Operations Integration

Friday update

Linda is still eating very well today. It was chocolate pudding this morning and raspberry yogurt this afternoon. Around lunch I brought a very special treat. I stopped at Java Co. and picked up her favorite coffee drink (Milky Way), prepared just the way she likes it by her favorite server. She was all grins when I walked in with that. We thickened it up a bit and drank that for about 1/2 an hour. There's still plenty left to have another snack.

For the curious, thickener is just corn starch and maltodextrine. So it is basically like thickening foods with corn starch. Just mix it in and stir.

Food isn't the only big news in Linda's life this week. It turns out that she took her first steps yesterday with the physical therapist. I didn't see it, since I was away, but they repeated for me today. It's pretty halting, and she is getting a lot of support, but the idea is there. She was a little less tired yesterday, so it was apparently more dramatic the first time she did it than today; I'll just have to wait for a better performance.

Friday

I feel a sense of responsibility for at least Don or I to post something daily. I will just admit right now that it is my fault there have been no updates since yesterday: We dragged Don out to El Vaquero for dinner last night and then stayed up talking to him waaaay too late last night. So, there was no blogging going on.

I must say though, that Don travels through Kirksville now with a sort of celebrity status. Instead of handing out autographs, he hands out the blog address...

I will just say a brief word or two about the blog, if I may.

Don and and I talk a lot. And we have very similar personalities, in that there has not yet been any subject that either of us considers taboo, not any subject we won't talk about. There are simply subjects that do not translate well to print, so we don't. However, what I post on the blog, the pieces that have my name on them, regardless of how personal, how intimate they seem, I never post these things without speaking to Don first.

I have not posted anything Don and Linda are uncomfortable with. If I did, believe me, it would be removed immediately.

Linda is a writer. You cannot exist as a writer without the details.

And believe me, if anyone thinks what I have posted is too personal, too intimate, it is only because you have not been present during our actual conversations...

I just wanted to clarify that point.

As Don said, last night, "You have not appointed yourself the arbiter of schedules and meals and such. I appointed you. I asked Karen Smith to call YOU."

And it does seem that most people who do not know the Bindners (or do not know them well) do appreciate having a liaison to help them remain involved.

Thanks for reading!

I found this article on salon.com today, and couldn't help but think it applies here as well...

In sickness and in health


My husband is sleeping in another room tonight, not an unusual event. Phil is very, very sick, and this is my new reality. But I still don't like the fact that he chooses to go to bed somewhere without me.

Tonight he's coughing so loudly, I wonder if I'll find a dusty lung deposited outside his room tomorrow morning.

Many of you have snoring, coughing, irritating husbands, and it's not such a big, hairy deal. But mine is recuperating from a bone marrow transplant and so ... with every cough I wonder whether I will soon become a widow.

I have a love like the ones in the movies. Not so much Deborah Kerr and Burt Lancaster, but Deborah Kerr and Yul Brynner, very "King and I," very much the older, sexy, crazy king falling in love with a younger, yappy chick who gives him "what for." I have actually seen my guy pinch his chin, musing, "She's a puzzlement," as he wanders around our house, trying to figure out whether he wants to kick me to the curb or f*%$ me. Very dreamy and insane and painful -- and that's even before he fell ill with not one but two rare blood disorders.

I can't believe it's been only two years since he collapsed on our kitchen floor, in the best shape of his life, clad only in a cunning pair of Hugo Boss boxer briefs. Only to be released from the hospital three months later, after having his blood swept clean every day like Keith Richards at his worst. While he was in the hospital suffering from this weird blood disorder, we found out that in fact he had another, worse disease that the docs wanted to keep him from knowing about till he was "better." That disease is the one he is suffering from now, again rare and incurable -- the only famous person to die of it is Carl Sagan. To cut a long story short, a bone marrow transplant followed, and my lovely guy is doing really well except for the fact that he is in the downstairs bedroom coughing his guts out.

Marriage is the subject. And how married I am. I wish I could find words to explain it. How his body feels like it's mine. How I wish that we could have issues to deal with like infidelity and boredom. Those problems would be so much easier to contend with than whether he's going to live or not. How weird it is to lie beside someone, even if they're starting to resemble Jerry Lewis because of Prednisone excess, and love them so much and worry that maybe this time next year all you'll be left with is your memories.

When he was first in a coma, I used to gaze at his body, running my eyes over it like a pornographer, or at least a theater director -- his big dancer's thighs, his newly buff biceps, his prematurely gray but refusing-to-recede hairline, his fit body lying inert in a short, paisley-sprigged shift, a wheezing ventilator clapped over his once-sensual lips. I would try to find some part of him that was not be-plasticked or be-hosed, usually his ear or his foot, and I would caress it and kiss it, yes, I would.

Now he's gone from underweight to overweight, his body betraying him over and over again. He's still bitchin' handsome and sexy and swell, but he's tired of being so sick.

My husband is sick enough to die. I haven't had sex in over two years. But he is my partner. He is my love, my life. There is nothing more important to me than this man. I would give anything, anything, to have him well. We want to live together for as long as we've got. By the sea. With coffee and newspapers -- and maybe some sex. That's what marriage is to me. -- Susan Duligal

Afternoon snacks

I'm at home in Kirksville, in between errands here. The phone rang, and it was Tori the speech therapist. She was so excited by Linda's afternoon performance that she wanted to call me and tell me about it. This afternoon between 2:30 and 3:30, Linda ate 4 ounces of cola that had been thickened and 2 ounces of yogurt. She said the main doctor was in at the end of the session and he was just raving about how well she was doing. Naturally, Linda was grinning the whole time. They make her ask for "more" between sips (which usually come from a teaspoon). It doesn't sound exactly like "more" yet, but the important part is that you can hear her dry voice. If it is gurgly, then you know she needs to swallow again first.

As for the email thing, people have been sending us emails at Rusk for several days. They generally print them off about once a day and bring them by, so we do get them.

The Link Is Updated...

Fire away.

Email Question Answered

Mary, if you ask me a question, just like Dear Abby, I will try my best to get answers for you!

I called Rusk, and a case manager called me back.

It seems that the best way to send Linda email is to send it to her case manager; the CM will print out the email and get it to Linda. So, I suppose it would be nice of us not to flood her with too many emails, but I am not going to dicate or organize or schedule or anything else. I'm just gonna go send her an email...

(just give me a minute to update the link, and you can do that too!)

Email Linda At Rusk

I have just put up a permanent Link you can use to send Linda email at Rusk.

HTML is pretty picky, so it took me several tries to get the exact link you need to send her an email, no fuss no muss.

Cautionary Note:

From now on, if Linda doesn't like your well wishes, she is going to chew them up and swallow them.

Swallowing Test

Don just called me. He's on his way up to Kirksville today, so he won't be near a computer, but he was very excited because Linda passed her swallowing test today with flying colors! They were the colors of pudding and applesauce, thin liquids and thick.

It's not that it was easy, exactly, but she did fabulously.

This is important and significant because it means she can have pepsi. And ice cream. Coffee. All the things that make life worth living.

She was drinking pepsi with thickener when Don left. I had to ask him to repeat that about three times, and then, finally, to unpack it for me: They add a thickener like a gelatin to the pepsi to make it easier to... eat.

She was just grinning away, thrilled, when he left. He wants to bring her a Milky Way (a coffee drink from Java Company, the local coffee shop) tomorrow, and add a ton of thickener.

Linda will get yogurt this afternoon during speech therapy, but Don doesn't think the nurses will get to feed her, so she'll have to wait til tomorrow for the good stuff.

Don said the speech therapist had been very nervous that Linda wasn't ready, wouldn't pass (no big deal, they try again next week), but Don practiced and practiced with her, and she aced it.

Now, let me tell you, it strikes Don and I both as absolutely hilarious that we are talking about things like practicing for swallowing tests. And I will leave to your imaginations the scandalous conversations we have had regarding "practicing," "swallowing," and "tests." They are not fit for blog consumption, but satisfy yourselves that if we ever want to write the script for "Linda, the NC-17 Movie," we can.

Serendipity

I just found out that Johnny Depp will be starring in the film version of The Diving Bell and the Butterfly.

That should be gripping. Action packed.

Maybe they could hire Linda to be a consultant?

Who should play Linda in the movie? What should the title of this screenplay be?

Jennifer Aniston? Renee Zellweger? I would like to see Jodie Foster do it. Not Ashley Judd, though, unless they cast Morgan Freeman to be Don.

Wednesday update

Two news items. Linda has a new skill today. She can pronate her left hand, i.e. if you lay her hand palm up in her lap, she can turn it palm down. She can also go backward some, but it's very weak. She seems to have a bit of weak pronation in her right hand too. The doctor is pretty sure there's some left-hand finger squeezing too, but I haven't felt it myself. I still believe him of course.

The bigger news item is that Linda has her swallowing test tomorrow, or at least her first one. If she does well, she'll get to have a bit more than ice chips. She had a really hard time with 1/2 tsp of applesauce today, so you can imagine it'll start slow. But she's sure to get a little chocolate pudding if things go well. The speech therapist said she can just spit it out if she can't get it to the back of her mouth to swallow.

For the test, Linda sits in this interactive sort of X-ray machine which shows her head on a TV monitor. I was disappointed to find out it is just her head. I had been preparing a bit of levity for the occasion, "I can see through your clothes. It's not as great as you might think. I can see through your skin, too." Anyway, they feed her various textures mixed with barium (so they show up). I think they expect her to do best with thick liquids. They're relatively easy to get to the back of the mouth with your tongue, but they don't run down your throat before you can react.

Life's unwritten rules

Today was a day of incremental improvements. No specific new skills, but she is doing the old ones better. She's still eating ice, saying a bit more variety at times like "ma", "ba", "ha" with difficulty; stronger control of what she has. So instead of an update, I thought I would reflect on one of life's unwritten rules.

You would think that one of the unwritten rules of life, one of the taboos that you just don't break, would be, "You don't taunt and make fun of a paralyzed woman." It turns out that this isn't true. You can make fun of a paralyzed woman and she may find it pretty funny.

If your life was full of play and teasing before a stroke (even if you had forgotten sometimes), then it will quite probably be the same after. You'd probably be surprised how funny it was to say to her, "Is it cheating to tickle the feet of a paralyzed woman?" You might not have expected to see the humor in laying out 5 short-sleeved shirts and prompting, "Point at the one you like."

But strangely enough, life is like that.

More Monday stuff

I forgot to mention that Linda said "ma" today. That is she made the right mouth movement, beginning with lips together and ending open, while vocalizing. She did it again this evening very convincingly.

For her afternoon physical therapy, Linda worked on trunk control some more. Her task is to transition between various sitting positions. She starts leaning forward, then slowly straightens up to the balance point and then back to forward. It's hard, but she is improving very quickly.

We spelled a good bit today, although now that we have been so successful that Linda is spelling more elaborate messages and they sometimes don't get across. Not every idea is easy to express in one sentence, but we're still doing pretty well. It isn't like it was at least; now I generally understand the subject of the sentence even when I don't understand the context or importance of it.

For those interested in our new spelling board, as I said, it's an 18in by 24in plexiglass board covered with 2in black letters. It has a blank space in the middle so we can see each other through the board. She looks at a letter and I read it out. If I'm wrong she just shakes her head. Otherwise she moves on to the next letter. I made a pdf of the design for you: plexi.pdf

Monday update

It turned out that Linda does not have a swallowing test today. That was apparently a misreading of the schedule. It has still been a big day, however. She told the speech therapist again that she wants to eat ice cream. It's a bit too soon, so Linda asked for ice chips. It turns out that ice chips are what her therapist always starts people on anyway, so Linda got to swallow small ice chips this morning. It went well, so it's reasonable to think her swallowing test is not too far off.

The physical therapist was impressed that Linda could use her abductors and adductors. He asked her if she wanted to try some of her leg muscles with weight. She'll try about anything, so, instead of the standing frame, they wheeled Linda's wheelchair between a pair of parallel bars. Using only Fred (the physical therapist) for support, they had her stand up. Understand that Fred was doing a lot of the work here, but he was very very impressed by how well Linda did--it's much more advanced than the standing frame. The exorcise was even harder because Linda kept laughing, which makes it difficult to use your muscles.

We're still spelling a lot, which seems to keep Linda in a better mood. If nothing else, she can more easily ask silly things that are bothering her and have her questions answered, so I think she is mentally more calm. The speech therapists were very impressed with my letter board. I have a computer version done up, which I intend to upload later for those interested.

Monday (and This Week's Meals/Babysitting)

Don has asked me to pass along (and I will send emails to those who need them) that he is remaining in Columbia, so he will not need meals/childcare this week. His mother has taken Ellie up to Iowa.

I talked to Don twice yesterday-- and the second conversation was very sweet and funny. He and Linda had some fun yesterday, which may seem difficult, but not really for two people who are best friends and still love each other.

Linda has been spelling so rapidly that Don doesn't even write down all of ther phrases anymore. How wonderful for her to be able to communicate so easily again!

I know that Linda has a swallowing test today. She asked what would happen if she fails it: she will have to take it again in a week, and keep taking it until she passes. If she passes, I think there are some possibilities for some real food! She apparently asked for ice cream and pepsi all weekend (to no avail...)-- but Don posted that, I think.

Even though Linda didn't have a lot of therapy over the weekend, she can curl the toes in her right foot now, and bring her knees together. Don overheard the nurses saying that the hands are always the last to come back.

Don says that they (the professionals) don't say that Linda will do things, but they have not put any limitations on what they think she will be able to do.

The prognosis is just so hopeful and miraculous compared to a week ago, two weeks ago! I am not going to get into an essay right now about the tenuousness of life, perspective, living in the moment, hope, or anything else that will distract me from my responsibilities. But I could.