But enough on that. I brought Mikey "My First Mister," it being a) a movie released after his stroke--we gotta keep him up to date with the latest releases!, and b) an Albert Brooks film, of whom he is a HUGE fan. We enjoyed it a lot, even though Brooks dies at the end (sorry to give it away, but frankly, I wished I'd known), and Dee got rather emotional. But he always did cry at sentimental movies...its part of his charm.

We found Mikey being wheeled into the dining room for a "service" which we figured he'd rather miss and took him back to his room. The three of of crowded into his side of the room and caught up with some gossip and presented Mikey with a slew of videos, many found at Building 19 and Good Will for $1.99. I noticed that he seems to have fewer videos than at Spaulding but figure that he had to get rid of some when he left there. "The Women" (an old classic) got a big eyes up. I asked if he was up for some work and he indicated okay... so I took out the mirror and proceeded to do some mouth exercises... open and close on command using the mirror and then having him try to touch my hand with his tongue on the side of his mouth. The last one got much better results than I expected, perhaps because I warmed him up (???). We did this for about ten minutes or so and then I started massaging his arms and hands and stretching the arm out some and asking him to pull back. One arm had quite a lot of strength in it, his left? It distresses me so to see his hands so curled up and inactive. I asked if the massaging and stretching was uncomfortable and I think he indicated yes. Oh. I gave it some thought and then apologized saying "I'm sorry Mikey but I really think this needs to be done. I'll be as gentle as I can be but your fingers need to be slowly straightened a bit." After a while, they seemed to loosen up.

Meanwhile, Anna was cranky and hungry and not being too cooperative so all four of us decided to go outside for a while. Anna and Perry went off to explore the garden and Mikey and I parked and just sat in the shade. He has some sunburn on his forearms by the way. I could tell he enjoyed just being outside for a while listening to the birds and just keeping each other company by simply being there. If I had come alone I might have been able to keep him out longer but we were both getting pretty hot once the breeze stopped. So I took him back in, wet a towel and wiped his arms, hands and face down to cool him off. He seemed to really enjoy it. We plopped in "The Women", put a headset on Mike and went out to the desk to tell the staff about the video. Now here is the good part: the staff person asked us to show him how to unplug the headset from the tv and plug it into the cd player. Fantastic, someone cares! Perry showed the guy what to do and picked out some CDs and we left. I hope it happened.

As nice as the facility is, as nice as the location is, visiting someone in a nursing home is not the most optomistic of times. I could not help but feel depressed when we left. We take too much for granted in this life. That place is filled with regular people, some forgotten, some who will live out the rest of their lives there. Thank God that the team found a place that is clean and that there is interaction between the staff and the residents. And as untrendy as it may sound, I pray that my friend makes it out. At one point, I looked at him and said "Buddy, when this is over and you get out of here, you owe me one cold beer."

Big eyes up.

Mike was sleepier than usual because PT had just finished up right before I got in so we didn't do a whole lot of therapy. I noticed that Mike's fingernails were getting close to that Howard Hughesish length so I clipped them and incorporated a few little finger exercises which Mike did quite well with today. As Mike woke up more we did some old mouthing exercises such as reps. of five open mouth wide and then go to pucker ones that somehow we got out of the habit of doing lately--he did them all with ease! Later we focused more on breathing and getting some sound out on the exhale which he did but still had trouble getting any real words out. He is able to mouth some words like "bye" and "wow" etc. but for some reason he isn't able to quickly make that mouthing connection with the exhale sound like he used to...very frustrating step backwards for him and not sure how to help him make that connection.

After peak sunburn hours had passed, we went outside and sat in the sun, practicing deep breathing and “wows”. He is really getting good at this—before when you’d tell him to take a deep breath, he couldn’t do it very well, and today, we got six wows out in about three minutes. Keep working on this with him! Watching the laborious yet determined movement of the other paitents there, inching up the walkways, lighting a cigarette through violent tremors, making a life out of enormous hardship, I asked Mikey is his injury had given him a new perspective on life. He nodded deeply. I asked if he admired the persistence that so many of his neighbors put into their daily existence. He nodded again, looking into my eyes with total understanding. I feel a deep sense of awe and respect each time I visit the Greenery. Brains can be damaged, bodies twisted beyond control, but life truly does go on; Nature keeps her cycles no matter what or where we are.

Back in Mikey’s room, we cozied up in front of the new tv (courtesy Tina) and got totally into “Harry Potter.” How I wish for a magic wand and the right incantation to free the Dee…in the meantime, we’ll just have to keep inching forwards.

Note to visitors: If you take Mikey outside (and please do!), slather him with sunscreen and put on his hat and sunglasses (in nightstand drawer).If you can’t find sunscreen, there are shady spots to sit in. Thanks!

Mike also looked better than he has in a while: eyes clearer and he was breathing much better, no coughing, and swallowing better. We took advantage of the fresh air and did some deep breathing and he was quite vocal on the exhales, but unfortunately didn't get any words out other than "no" and a very soft "wow". We also worked on his arm movements. It amazes me how easily he can push down on my arm after we make that same motion together for a few minutes; then he's able to do it on his own. I wonder why he's able to make those connections but not others? It's frustrating as hell for Mike, and after a while he gives up and pushes for different therapies that give him more immediate rewards.

Please Help! Mikey is in need of a new influx of films…if you have any videos lying around that are not irreplaceable to you, the Dede could use some new celluloid. He especially likes 60’s movies, Brit films, film noir, and indie films. He generally does not like feel-good movies for the whole family, or vehicles for former Saturday Night Live members.

Today Mike gave me a very big smile, after I broke him out of his zoney half-sleep state that he gets into when he's not fully occupied. Once we got back into his room, I asked him a series of silly trivia questions, and he answered them all correctly. He laughed quite a bit at various stories I shared with him. We always work on breathing, but the right way to breathe -- inhaling deeply through the nose -- is usually very hard for Mike; so this time we focused instead on breathing the "wrong" way -- through the mouth. Mike seemed to be getting better breaths that way and some good sound on the exhale, inluding a fairly loud and long "nooooo." We also worked on a variety of mouth exercises and he was able to impress me with some tongue movements I hadn't seen in a while.

Linda, Eleanor, and myself accompanied Mikey to the show. Our inspiration was “Charlie’s Angels” with Mikey being Bosley, of course. We Angels got up to the Greenery at 9pm, crept through the darkened hallways to Mikey’s room, and found him there, dressed in rock t-shirt and cap, in his chair…asleep. Upon waking, Mikey’s anxiety about going out manifested itself in some tears and trembling, but we quickly soothed him and gave him a pep talk. It was Saturday night, and there was rocking to be done.

Eric picked us up promptly at 9:30, and after strapping Mikey snugly into the van, we were off. The nurses had provided Mikey with a scopamine patch to prevent his motion sickness, and Eric drove as carefully as a mother bird sheltering her eggs.

Upon de-vanning, we ran into Nabil on the sidewalk, who greeted Mikey warmly. I took this as a good omen. We got into T.T.s just in time for the Red Telephone set, and Mikey’s fears evaporated as the band began to play. His face was suffused with a pleasure and contentment I have not seen in ages, and countless members of the old pop scene dropped by to offer hugs and welcome. The prevailing vibe seemed to be, “Ah, yes, Mikey’s here; as it should be.” The joy continued as Permafrost took the stage, as Mikey rocked out to all of his favorite songs. He even mouthed the words along to one (which Ad Frank noticed too, so I know I wasn’t imagining it). I was especially glad to make this scene with Mikey; I’ve often longed to hear Permafrost just one more time, and I couldn’t have imagined going to this show without him. Mikey and I seemed to catch every Miles/Permafrost gig they played in our years together, and he always grabbed my hands to drum along to “Clutter.” I returned the favor by drumming with his left hand last night, and all seemed as right with the world as it could possibly be since the horrible events of February 7, 2000.

True to Dee form, he refused to leave until the last encore had been played. We kept checking with him, since he seemed exhausted about halfway through the night: “Mikey, give me an “eyes up” if you want to stay some more”: eyes waaay up. So we closed the club, just like the old days, and Mikey went back up to North Andover for a good night’s sleep. No doubt it took a lot out of him, but as we all know, sometimes you have to do it for the show.

Thanks to everyone who was a part of last night: Linda, Eleanor, Eric, Drugless Douglas of WMFO, the bands, and everyone who gave Mikey love.

I didn't want to cut short his massage so I left the two of them and went back down to see who all was gonna make it up for the festivities. Once again we had a great showing of friends. Pete S, Nate, Mick, Moon, Mascara(s), Melissa, Carol, Surette, Ed, Judy, Lucky and the gang, plus others. We were supposed to perform excerpts from the upcoming BRO Aqualung vs Billion Dollar Babies show and let Dee cast his vote but since none of the Babies showed, Aqualung beat them by default. Naama's friend John also came by and played some trumpet while the crew jammed. Just a bunch of good sloppy fun. Afterwards, Mikey's old pal John Surette (who's Aqualung) was there regaling him about the upcoming "Malden MusicFest" that he and Gary Cherone and Linda Bean will all be playing at (all four of them are Malden High graduates). In general Mikey just seemed to be soaking in the good vibes, communicating clearly (nods and "nos") and laughing heartily. Thanks everybody!

Once he was comfy in bed, Joe took off, and we got down to business: ripping open the big envelope of goodies sent to him by the lovely Ruth from Amusia. She kindly sent along a couple videos, a Neil Finn CD (which he LOVES already), a Suzanne Vega cd, and the new Amusia EP. Yay! Despite his fatigue, Mikey was up for some work, so we went through a series of faces, teeth/tongue exercises, and deep breathing. Then we just snuggled and listened to the new Cds.

Given that Mikey’s been fairly unresponsive lately (his moods have been, for the most part, quite low, due to frustration, loneliness, and boredom), it was very gratifying to have such a nice, upbeat visit. When I left, Mikey was getting ready for a shower, and the nurses promised to put his headphones right back on when he came back.

Since Mike started off being vocal, we initially focused on working with the mirror: mouthing many words and then doing many reps. of wide open mouth to a pucker. After doing a bunch of these exercises, Mike tends to be better able to produce clearer sounds. Today he whispered some wows, byes, and no's but he wasn't able to get beyond those few words ... as usual, very frustrating for the both of us, and it led to some tears. During the last few visits we've been able to redirect the sobs into therapy. This worked out especially well last week, with some really strong and controlled finger movements along with some powerful squeezing of my waist and leg and Mike's own arm. This has been a great way to motivate Mike and also generally stops him from crying for too long.

I was talking with Mike today about trying new and unique aproaches and have been thinking that maybe hypnosis could be beneficial. Since Mike is capable of all sorts of controlled movements, especially with his thumbs and several fingers, maybe it's possible to hypnotize him to work on these movements when he's alone ... using a trigger word to get him started. From everything I've learned about these sorts of brain injuries, the only way to make any real progress is to constantly repeat the movements every day for many, many hours. Unfortunately, Mike isn't able to remember to do these movement on his own so most hours are wasted with Mike just spacing out and escaping into another world -- hours that could be better utilized. Anyway, I have no idea if Mike is even capable of being hypnotized and I realize it's a long shot, but he has indicated over and over again that he's willing to try anything. If anyone out there knows anything about hypnosis and its possible effects on stroke patients please contact me -- you never know what could work until you try!

Please rotate the discs as you visit; he has MANY to choose from. And I think I put them all in the right sleeves.

OSCAR ALERT! Did anyone happen to tape this year's Academy Awards? I couldn't watch much of it (past my bedtime), and I had no videotapes, so I couldn't. But as we know, watching the Oscars and making predictions was one of Mikey's favorite annual rituals. In fact, I find it a little too sad to watch them now without him. And even though Mikey hasn't seen many of the movies that were nominated, he loves a good Hollywood show. So if you have it on tape, please let me know! I can make a copy and get it back to you if need be.

I returned the following day, armed with a set of wrenches for his wheelchair and the means to make some signs for the staff. I found Mikey in the hallway again, and when I said, “I’m going to put my hands on your arm. They’re cold,” he bugged his eyes and said softly but completely audibly, “Wow.” These spontaneous outbursts are both heartening and frustrating: on one hand, we know he can do it; on the other hand, controlling it is still out of reach. But at least we know he can do it.

After taking off his hand splints, which I think are doing a very good job of keeping his hands fairly flexible, we worked on both hands. Mike is now able to move his thumb and ring finger on his right hand in a very controlled way, especially with the added motivation of touching and seeing what he's doing. Mike's left hand squeezes were very strong so I placed that hand on top of his other one and had him squeeze it periodically while we started some speech work.

Mike indicated that he wanted to use the mirror and work on articulation. The last two or three weeks Mike hadn't had much success with it (too tired?) but yesterday he really impressed me! After only a few minutes of facial expressions and mouthing some simple words into the mirror, I put my ear up to his mouth and instructed him to get a good breath and mouth "bye" on the exhale. He whispered it very clearly and then we went through a few more words until he got it slightly above a whisper. It was a relief to hear his voice again and know he's still capable of concentrating enough to get a word out ... since it had been a while I was worried that this ability had been lost.

Mike was getting tired so we just did some more finger/hand exercises (he's never too tired for that) while I asked him a series of yes/no questions. As usual Mike gave very clear and accurate responses to the questions that were about his immediate needs or feelings and to the ones that tested his long term memory (questions about our mutual past from 15 to 20 years ago). However, when I asked about the recent singalong, he gave inaccurate responses about who was there but did repeatedly indicate that he enjoyed it and would like them all the time!

However, today Mike was in better spirits and wanted to work so we played around with a musical hand toy. I had ordered this from a childrens catalog a while back and it needed to be adjusted to fit Mike's fingers. After some snipping and some velcro, Mike managed to move his thumb and press against his own hand hard enough to make some weird noises. This needs work but it's another tool to help motivate Mike and give him some additional cues whenever he does move.

Later, we got into the arm wrestling position and after a few minutes of pumping his arm up and down slowly with no resistance, Mike suddenly was able to push down hard and bring my arm down with some definite force. I've noticed that quite often Mike is able to move on his own after someone has moved that finger/hand/arm for him. The repetition seems to stimulate something ... this is an exercise that I greatly encourage others to do with Mike whenever you're with him. We continued this for a while, and Mike's movements got stronger and more controlled the longer we did it! We also got some strong movements from his right hand that were much more controlled than usual!

As the wintry sun waned, we watched Ruby go through her paces of running round the courtyard, jumping (mostly) over the shrubbery, and spinning around with all the exuberance of being three. Ruby is a magic talisman at the Greenery—as she walks through the hallways, patients deep in thought or rest perk up and smile at her. She, in turn, gazes solemnly at each person, waving a tiny hand. She walks proudly alongside Mikey’s chair, and firmly plants kisses on him as the spirit moves her.

Once back in his room, we got Mikey’s face washed and moisturized, including his lips, which tend to chap easily. Ruby needed a nap, so the two departed, leaving Mikey and I to sit and listen to music while doing finger wiggles and much deep breathing. I’ve noticed that when Mikey is not tired, he holds his saliva well, and swallows most of it. But as he tires, he seems to expel more of it—his swallow mechanism is still not an involuntary movement, and is hard to control when fatigued.

He was fairly weepy at times, especially during the odd Elton song (“Burn Down the Mission” sparked tears, while “Crocodile Rock” got his head bopping like the old days), but he is showing much more movement in his left hand and arm, which he has been working on. Likewise, his breathing is deeper and more easily controlled. I uncurled his fingers and lifted his arm so that his hand rested on the back of my neck as we sat together. He wrapped his fingers around my hair, but thankfully, didn’t pull it. He did, however, try to pull me in for a hug, but wept when he could not. Such simple movements that we take for granted…
Do me a favor: go hug someone right now, and send the love up north, to one who needs it.

Speaking of hairs, I was there to cut Dee’s, so we took him back to his room and I gave him a nice shave. He held his head up quite well, despite being tired (we noticed that his left eye seems to droop at half-mast when he’s tuckered out). As I’ve said before, I remember when doing the haircut was a two-person job—one person to hold his head, and me to cut. I guess now it’s still a two-person job, but Dee’s one of the people, since he’s the one holding up his own head. I’d enter us in a speed-shave contest anyday, though; we’ve got it down to a science.

After the haircut, we hung out and Dee played with his robo-hand thing, a toy that you attach to your hand and fingers to make DJ scratching noises. It’s made for kids, so Eleanor is going to bring in some Velcro to make it fit better. Mikey has lots of toys to improve his manual dexterity—many of them are in his toolbox on the bottom shelf of his CD rack—feel free to play when you’re visiting!

I had brought “The Lavender Hill Mob,” a classic Brit comedy, so I put his headphones on him and pushed play. I kept him company (and replaced the phones when his laughing/coughing at the film knocked them off his head) as he watched. Then it was time to go, so I left him watching “Cats and Dogs.”

We’re still looking for videos for the Dee…email me if you’ve got some lying around…or just bring them up yourself!

Later on Mike showed T his very controlled finger movements--especially his index fingers--on both hands now! Also Mike pushed down on my hands when I placed them against his toes; he is able to move both sets of toes but not simultaneouly---yet.

I had also been up to visit Mike this past Monday and again he was in a decent mood and ready to work. We warmed up with the mirror and he made many faces and we ran through the usual breathing and articulation exercises. After a while Mike was able to whisper several words to me, many times, into my ear. Yesterday, with very little warm-up, Mike was able to whisper loudly enough for T to hear him from several feet away.

O heavy day:
An accidental circumstance
Forever seared in the memory;
Hesitant messages in the night, left on machines all over town.
How is it that two years’ time vanishes in the blink of an eye,
Yet stretches like an interminable journey from a place we never
Bought tickets to in the first place?

Freak occurrence:
The fool’s fallacy of Other People is revealed
In the mirror. It is you; it is me.
It is when the routine is not routine, and spawns
A routine all its own: one of loss, longing, frustration, and waiting.

Already two years,
And only two years.

Mikey was pretty quiet today, but seemed in good shape. His lips were nice and moist (they get chapped easily because of the trouble he has managing his saliva), and I’d brought two “extreme” lip balm things in for him, so that he’d have plenty on hand.We sat in his room and listened to Elton softly. We had been planning to take him down to one of the Elton shows, but though efforts were made through Mikey’s copious connections, the deal feel through thanks to the Powers That Be. Thanks for trying, Planetary.

Mikey’s hand strength continues to improve and impress; he was able to push against my hand and wiggle all his fingers. Arm wrestling’s still a ways off, though.

I headphoned him and left earlier than usual, wanting to get on the road before dark. As I drove back down Route 125, I noticed the trees, their boughs heavy with snow, reaching overhead into the road like arms outstretched in an embrace. May those silent, snowy pines shelter our dear one, so fragile and so far from where he wants to be.

This first week of February is a heavy one. On Thursday, it will be the second anniversary (such an inappropriate word!)of Mikey’s stroke. If it is at all possible, please take the time to visit Mikey and let him know that after two years, he has not been forgotten. If you can’t make it in person, send a card, a letter, an email, or just some healing love energy. The road is long; please help Mikey carry the weight.

Yeah, I know, you don’t like hospitals. Well, this isn’t a hospital! It doesn’t look like a hospital, doesn’t sound like a hospital, doesn’t even smell like a hospital.

Oh, you’re not good with sick people. You don’t even take good care of yourself. What will you do there? Well, just talk about yourself. You can do that, can’tcha? Tell Mikey what you’ve been up to, what records you’re listening to, what movies you’ve seen, what bands you’ve taken in lately.

You don’t like to talk. Okay; don’t. Put on a cd—there’s plenty in the cd player, or you can bring your own—read the instructions on how to work it, and let the music do the talking. Maybe you could just sit and hold his hand and look out the window with him. If it’s a warm day, maybe you could take him for a roll outside. There’s a nice courtyard off the back of the place. Feed the birds; watch the squirrels. Don’t worry, it’s the suburbs. They’re clean.

Don’t have a long time to spare? No problem. Go for half an hour; forty-five minutes. Surely you’ve got that much time kicking around somewhere in your schedule. You’re worried that it’ll be too short a visit? Yeah, as though back in the day, Mikey ever refused a bite of dessert just because it was a bite and not a whole piece.

So why not do it? Spend a little time, make somebody happy. If that isn’t the karma deal of the century, I don’t know what is.

Mike was really wiped out so for the first three quarters of the visit. He was only giving us occasional head nods and head shakes--even the mirror could not motivate him to make any of the goofy faces he likes to make. However, towards the end of the visit he did laugh a bit at some of the really silly jokes that Tina and I were telling him. This seemed to open him up to a bit more communication and he was very clear about what videos he did or didn't want to watch.

After we went into his room and closed the curtain around us for that little bit of privacy (always difficult to come by in these environments)we got to work. I feared that Mike would go downhill during this transtion to a new place but so far he seems to be able to do everything that he was doing at Spaulding with the addition of some stronger movements from his hands and left foot. As far as communication, Mike is still very clear with his yes/no responses and enthused about working on all the usual breathing and articulation exercies.

Mike was very emotional yesterday--crying and laughing very easily. However, these emotional moments were very on target so I found them reassuring. His focus and constant eye contact are a comforting sign that Mike is trying to communicate through any means possible to him. It must be beyond frustrating for him since although we've seen the progress Mike's been making, his day to day life is still one of total dependence with few pleasures.

One of the few things that Mike can appreciate is being close and physical with others so we continue to incorporate that into our various therapies and he was able to lift his thumb up or move his fingers to touch my face or touch his own hand etc. this is best achieved when he's able to view it and this also helps him with eye control and head control.

As always, Mike is able to concentrate much better one on one, so T. took the hint and gave us some alone time. In just a short time, Mike went through a ton of different exercises and again surprised me by doing them so well. Mike really got into the mirror and, as I requested, he quickly made the faces and mouthed the words that I asked him to. Towards the end of the visit he was able to whisper several of his usual words (wow, bye, no ...), which I could hear when I had my ear right up to his mouth. This always gets us both very enthused and he gets a bit more vocal in general--laughing and trying to loudly sound out words.

Mike also did some great hand work, which we're all really focusing on because this could lead to using switches. When Mike masters this skill it will open up a lot of doors for him communication wise as well as gaining some independence.

May this new year bring us all peace, hope, and joy, as we continue Mikey’s long journey home. Hitch-hikers and other fellow travelers always welcome.

After signing about a trillion papers and the rest of the team setting up Dee's room, we decided to leave and let the nurses do their assessment of Mikey. Mikey was zonked anyway from the Valium. Mikey seemed OK when we left and the staff was quite receptive towards him, all coming in to say 'hello' and introduce themselves... We all hold our breath for promises of dedicated speech and physical therapy and a breakthrough somewhere soon for a quick fix for locked-in-syndrome. It was a relief but still heartbreaking to get him to a new facility and not 'home'.. Maybe someday.... Hopefully.... Cross your fingers....

We've all been reassuring Mike that we'll still be there for him and this move could lead to more progress with fresher approaches to therapy, etc., but no matter what we say Mike is naturally going to feel traumatized by the actual move. Spaulding is a known quantity and he knows and likes most of the staff there, feels safe there, so this is going to be a very tough week for him. If anyone has any extra time off during this holiday week it would sure make Mike feel better to see some old familiar faces! Check back here for details about the new place in N. Andover.

Since Mike was feeling kinda crummy we just curled up in bed listening to music and doing tons of hand and finger exercises. He did great with those and also managed to repeatedly push my arm down (very intentional) and got some really strong thumb movements especially when he could see what he was doing. Also, when a certain song came on he tapped his foot a lot and then did this over-the-top yell face expression that he used to do pre-stroke (Barrence Whitfield does that to him!). As always, music has a huge impact on his mood.

Later, Tina and her mom came by for Mike's goodbye party. He got very emotional when he saw Tina's mom--crying a little but it seemed very cathartic for him at that point--very good timing. There were all sorts of folks at the party but I left early so I'll leave that part of the story for someone else to fill in later.

Mikey was supposed to move this day, but the Greenery decided to hold his bed til after the holiday since they will only have a skeleton staff over the weekend. I think this is a VERY good sign. One of the most irritating and worry-causing things about Spaulding was the huge deficit in staff and care-giving over the weekends. It’s always been hard to leave him on a Friday night, knowing that he will not be as well-cared for over the weekend.

This is of course, a hectic time, full of family, festivities, and obligations. Those of you with a little cheer (and time) to spare, especially those who are not traveling away for the holiday, might consider stopping by to visit the Dee on Christmas. Holidays are a particularly difficult time for people who are in hospitals, so give a present that costs nothing to someone who really could use it. I promise you, you are just the right size for the Dee!

Its also incredible how Dee's mood changes quicker than a channel changer.. When I arrived today, he was getting ready to get up... I threw on Nirvana and he was actually mouthing the words (and doing a damn good job at it) to "Smells like Teen Spirit".... After he got moved into his chair, he was as catatonic as someone in "Night of the Living Dead"... Its amazing how worn out he gets moving from a bed to the chair... Poor Dee...

One of the highlights of the day was a small XMAS bash for the 4th floor patients, held in the Spaulding gym. We are all singing "I'm dreaming of a White Christmas", when one of the older stroke patients screams out "LOOK OUT THE WINDOW" right in the middle of the song.. obviously confused... Mikey and I couldn't stop laughing... A stroke, and its consequences are nothing to laugh about, but this guy was so inappropriate, we were peeing.... literally...

I'd meant to post a little about Sunday's wonderful Hanukkah/Christmas singalong. Dee was feted in hilarious style by Rabbi Max, a human menorah, irreverent songs, christmas jingles and a little sitar power from Chris and Deb Mascara. Also singing were the lovely ladies of Boston alt-pop, Jen Trynin, Merrie Amsterberg and Ramona Silver, the Damn Dirty Apes (natch), Mondo (natch), Valerie (!) and a few other pals. Thanks to everyone who has made it down to one of the singalongs, it really meant a lot to Dee and made Spaulding's 8th floor conference room one of the hipper spots in town... We'll get some more singalongs going in the new place (with carpool service probably) as soon as he's more settled.

Since Mike was still quite alert afterwards, he was able to vocalize fairly well and do some whispering. Sometimes I really hear his old voice in there, a deeper sound that comes out after lots of work. When we hear it, it takes us both by surprise and Mike will either cry or open his eyes quite wide and keep trying to get it back again--it gives us both a lot of hope.

We tried various switches he could knock at with head movement, switches triggered by eye movement (for some reason that made him laugh uncontrollably), a switch triggered by his breath (not there yet but maybe eventually, he did get out some great "buhs" but timing and predictability not there yet) and various kinds of thumb and finger triggered switches. When asked, Mikey indicated that the head movement worked best, but when asked to show which access he wanted to use most he moved his thumb. Also, despite pretty good success with the head movement it does trigger neck spasms. Yesterday we finally arrived at a sensitive little switch he triggers with his thumb. We also tried using a single phrase box (a little box one can record a single phrase or a set of consecutive phrases into). It's a much simpler device that the communicator box and the response-time (time it takes to say the phrase after triggered) is much quicker. Both of these items are with Dee right now (instructions on use in the purple book) in case any other visitors want to try it with him. Dee will be at Spaulding, most likely, for another week or two. He's then moving to The Greenery in North Andover (straight shot up 93) for an extended stay. They specialize in long-term rehabilitation.

We also spent part of the session yesterday discussing Mikey's various forms of communication. He showed off his repertoire of stylized faces, partly to see if any could be a trigger action. Jen and Kathryn agreed that Dee's facial movements were just too expressive and natural to inhibit (by making any of them trigger movements) so it was agreed to keep things away from his face. Besides his ability to communicate with facial expressions, he's also very good at yes/no communication. He'll begin using a small picture book of needs/wants with the new nursing staff (his reading ability comes and goes so pictures help a lot). He also insisted he still wants access to the dreadful alphabet board. Despite seldom using this form of communication, and not really liking it, he has used it occasionally, sometimes to get out important info that we could not have figured out any other way. Maybe someday he'll be more comfortable with it. Dee's come such a long way during the past two years but still has so far to go. I left him exhausted but pretty happy with his efforts.

The next day I got in later, after his massage, and Mike was very awake but spasmy and not able to do those same impressive finger movements that he had done the day before. It seems that sometimes Mike is at his best when he's still in bed half asleep. Maybe because he isn't trying quite so hard so the movements come more naturally and he isn't spasming as he's doing them.

I spent some time today with Mike initially working a bit with the usual breathing etc. and then was joined by Tina. Since it was incredibly warm out we took Mike outside for some fresh air and were promptly joined by T Max. T happened to have his guitar with him so the three of us made Mike laugh with a very silly little singalong. Always nice to end the visits on an up note!

While he's still far from using this device functionally, he has had some success. The trick is still finding the right switch. The therapists at Spaulding only want to work with low-tech switches but none of them seem sensitive or accurate enough for Mikey. It's frustrating to watch him concentrate on the accuracy of his movement (currently a head movement) only to not have the switch respond. But, this is only a start. Our hope is that he'll have a chance "start over" with a new, and hopefully more technically savvy, assistive tech crew at the new rehab he'll be moving to soon.

Speaking of, if you've been meaning to visit -- and are carless -- stop by this weekend or early next week. He'll be moving soon to a place that is not T accessible.