| Mikey's Recovery Update Archive 5.
Back to archive page | to Archive 4 January 1, 2001 through April 2, 2001 7.27.01 Found Mikey on his way out the door, as Eleanor had arrived and was encouraging some Dee to get some Vitamin D. So off we went to the 2nd floor deck. I'm still so pleased to see how many of the nurses and aides greet Mikey so warmly whenever they see him. Must be that 600-watt grin they get in return. We chose a sunny spot overlooking the water and the shoddily built Charlestown bridge, and began a double massage assault to loosen up Mikey's hands. We got his arms, hands and wrists pretty well relaxed, and he gave us hearty squeezes with both, and some good pulls with the left arm. He even arm wrestled Eleanor, and held his own very well. Eleanor asked Mikey a bunch of questions about his therapy: he agreed strongly that he wants/needs more; that he likes having new visitors (and old); that he worries that he watches too much tv; that he's ready to try some foods with me; that he wants to get off the hospital property a few more times this summer. After a good hour and a half, Mikey was ready to go back inside. We got up to his room, put in the new Ad Frank solo cd (thanks for dropping it off, Ad!), and when I left, they were working with the letterboard to see which therapy Mikey wants to increase the most. Please keep the cards, cds, videos and YOURSELVES coming in! Email me if you have questions about what to send or when to come. we haven't been to see mikey for a while and anna decided that today would be a good day. as she put it "we haven't seen him in a while and he might miss us." so i packed up a backpack and some umbrellas. we dropped perry off at the t at wellington station as he had to go to new york for something and then anna and i headed to the galleria mall. we had breakfast and walked over to spaulding. not recommended for the faint of heart, especially when pushing an umbrella stroller with one wheel that has a mind of its own. anyhoo, we got there around noon and were greeted with a big smile. this time i figured out he needed his glasses about 10 minutes after we arrived. we dropped off a taping of a Kiss special that was on E that perry made for him and a richard pryor tape that the clerk told me was the raunchiest of the bunch. also we brought back from virginia a hula honker for his wheelchair. mikey was in bed when we got there and stayed there the entire time. he did seem more relaxed and comfortable than i have seen him in the past. anna and i massaged his left hand for about 20-25 minutes and also stretched his arm out and moved it a bit. i worked on slowly stretching out his writst, not too long a stint and then a break and we would uncurl his fingers and rub them a bit, then massage the palm and then move onto another finger. we did get one fairly long spasm from some of the stretching but to me it seemed to indicate that something was reacting. i asked mikey if it hurt and he said no but i could tell he was getting tired. he did have very good yes and no signals at first but i could not get him to Say hello. and the clear nodding of yes or shaking of no seemed to get more confused as he tired. understandably. so we ended up using eyes up for yes about halfway through the visit. i think his face looks more animated than i have seen it since this began. i told him he looked more like himself = minus the hair than i have seen him in a long time. he got a bit tearful and i asked him "mikey, are you sad?" he said yes and i tried to comfort him and tell him how far he has come and that he would get out of there one day. i know that he has heard it all before but it seemed to work, maybe because i said it with conviction. and then a nurse stuck his head in and said that someone was downstairs asking if he could visit! it was howie altholz (sp?) who visited for about a half hour chatting away about the scene and music stuff. mikey was very very happy to see him. i do hope he comes again as it is one thing for an old friend to stop by but i can see how much it means to mikey to hear about what is going on music wise out there. the smile on his face was worth a million bucks, he practically glowed. naama came in to do her magical shiatsu and she has such a gentle way of communicating with mikey, it is touching in more than the physical sense. he did tell her that he didn't have a headache (she said that was the 2nd time in a row that he has told her that) and indicated that he thought the twice a week massage was definitely beneficial. we left while they were still doing the massage, he seemed so tired from the onslaught of visitors (who knew tuesday would be so busy?). naama said they would be putting him in his wheel chair afterwards and i asked her to set him up with the Kiss tape for amusement. she is a real treasure, genuinely warm and caring. ps his nails were beautiful and matched his roommate's wife's nail polish! 07/15/01: Yesterday was a Sunday Singalong and the crew stumbled through a decidedly wacky version of Sgt Pepper's. Surprisingly they pulled it off pretty well and it featured the added surprise of a visit from Susan Barnaby w/ hubby Malcom Travis and their two boys, Josh and Oscar in tow. They've been living in Nashville for the past few years but may be returning to the Northeast again soon. Since Sue appeared in the 1995 BRO version of Sgt Pepper's we immediately put her to work... Thanks also to Max from the High Ceilings, Al Janik, Randy Black, Amanda from All the Queen's Men, Chance, Moon and Stan, T Max and Mick Maldonado for giving Mikey plenty to laugh about yesterday afternoon. Just a bunch of old friends passing the time. Mikey was waiting in the hallway when I went down to get him and was looking pretty dazed. Unfortunately I think he'd just finished watching a movie without his glasses on. I retrieved his glasses which brightened his demeanor quite a bit since he's pretty blind w/out them. Suddenly it was Hello World... We did a little mirror work and hand relaxation exercises while waiting for the guys upstairs to rehearse a bit. It seems that Mikey's recent bout with pneumonia may have set his communication skills back a bit and it definitely did a number on his energy level. His signaling has been less clear (lots of no's when you're pretty sure he means yes, or lots of no/yes's). He had, using a nod for "yes" and an articulated no for "no," become very accurate for a while but lately his no's are becoming less trustworthy. So I gave him some time just reviewing his face in the mirror. Of all the therapy he gets the mirror seems to generate the most enthusiasm. Still, it's tough seeing him struggle to make facial expressions which had, only months ago, become almost second nature again -- which is the goal of so much of Mikey's work, to once again be able to do something, or express something, without having to think about the physical activity the whole time. So, if you visit him just give him a little extra time to process. He may very well articulate "no" first and then follow it up w/ an eyes up "yes". Generally, if you're patient, he'll get the signal he wants out and make his wishes clear. Eleanor <eleanor@rockopera.com> USA - Monday, July 16, 2001 at 17:42:29 (EDT) 7/15/01 -- Having slept 16 hours straight, I slept right thru the Mikey Dee Sunday Singalong and got to see Mikey about 5ish. He was on hallway patrol looking kinda tired. I had brought him "Spinal Tap" and "Waiting for Guffman" and Mikey was quite opinionated about both, giving Spinal a laugh and Guffman a no. In fact, it was a very "no" visit... With every question that I asked him, I got a "no"... Just to make sure that it wasn't a head spasm, I quizzed him on his favorite kitty (and got a big "yes" for Smudgie). I think he was just tired from the excitement of the day and hope that the rest of his week is a very "yes" week. Tina Bugara <tbugara@hotmail.com> medford, ma USA - Monday, July 16, 2001 at 16:21:54 (EDT) 07/11/01: Mikey was not in his usual spot when I arrived yesterday afternoon for a visit but I found him further down the hallway with Dr Lang, his acupuncturist, who was readying him for a session. Upon my arrival we decided to go to one of the conference rooms upstairs instead where it would be more relaxing. Since Dr Lang's visits are somewhat sporadic I hadn't run into her for a long time so this gave me a chance to both see a full session and also catch her up on some of the other therapies Mikey's currently receiving. He's still getting his shiatszu massages with Naama twice a week (which Dr. Lang was pleased to hear) and he's also back on the Sinemet, with a higher dose than the earlier trial. Dr Lang was remarking on how great Mikey looked and on the visible progress she's observed (she's been working with him since his arrival at Spaulding). She then set about sticking her fine needles at various points on Mikey's scalp and arms and legs. None of it hurt but as she manipulated the needles Mikey nodded that he could feel the "electricity," the tingling of the nervous system; his "chi." She also used the needles to try and relieve a spasm in his left shoulder (his shrugging shoulder) sometimes the spasm would totally stop but then it would also start up more in earnest. While it's hard to know what real benefit this therapy is, it, if nothing else, stimulates his nervous system, and since that is what is so compromised by the brainstem stroke, it really can't hurt and our feeling is that it is a good supplement to the more traditional drug and physical therapy he gets. I'd planned on doing as much therapy with Mikey as he could stand since he'd been a bit too under the weather the last few times I'd visited him to do too much. So after Dr Lang left I set to work massaging Mikey's hands and manipulating the muscles on his arms. With effort he got some wiggling going on both hands -- with more success on his right hand which continues to improve. I also got him raising his left arm, with assistance of course. He'd grip my hand and I'd get him flexing the muscles to lift the arm, we did it a few times, and got it all the way to his face (more flexible than in the past) and then I helped him scratch his nose which cracked him up of course. We also did a lot of breathing work and some articulation exercises, can't ever get too much of that. Then we used the phrase cards a bit and he picked playing games for the next therapy so we played tic-tac-toe and hang man (a game I don't think I've played since grade school!). His friend Cat came by, she hadn't been in to see him for a couple of months so they did some catching up. We also played one more game of hang man with the phrase being "The Cheap Seats", the name of Cat's show. Mikey would choose yes or no to letters as I slowly went through the alphabet. He started off well, and the phrase should have been obvious pretty quickly but then he seemed to be having problems, yes'ing letters that made no sense and no'ing the few that actually made sense. By the end of it, when he started cracking up, we determined that he was completely pulling our leg. He knew what the phrase was, I just think he wanted me to draw the stupid stick figure. SO the three of us hung out for a while talking about therapy, other brainstem stroke survivor's experiences, stem cell research and lots of other stuff. After awhile Cat had to get back to the Cape and it was past the Jevity hour so we got Mikey back down to his room and settled in with his favorite Elton John concert video and a Mary Tyler Moore box set. A nice afternoon. This coming Sunday is the next Singalong. The theme is a performance of Sgt Pepper's Lonely Hearts Club Band. While I don't think it'll have the finesse of the recent Abbey Road singalong it should be a splendid time none-the-less. If you want to be part of it contact T Max at TMAXNOISE@aol.com. As usual we meet at 1pm in the 8th floor conference room, go over the material and perform for Mikey and any other patients that drop by around 2pm. 7.10-11.01 - Mikey was being hoisted into his chair when I got there today. We quickly moved into the sunroom to hang out. Mikey was unsettled by the lift-he began to laugh and cry simultaneously-his typical expression of strong emotions. Before we had gotten much into our visit, we were joined by speech therapist Molly, who put Mikey through his paces. They began with some mouth-muscle exercises to warm up, progressed to lollipop work and then tried making a "hi" sound. Mikey wasn't too into it today, being somewhat slow to respond yes/no even to my queries, but he was trying with Molly, who is very positive and encouraging without being patronizing-a blessed combination. She offered Mikey a few spoonfuls of applesauce, which he was eager to try, yet still very apprehensive about choking. Again, the crying/laughter. I encouraged him to try it, and promised that neither one of us would let him choke. He braved it then, and took a spoonful from Molly. He moved it around in his mouth, and most of it ended up back out on his towel, but Molly assured me that right now, she's helping Mikey to just get the feel of food in his mouth again, without focusing on actual consumption. So he worked with a couple of bites, and now I feel confident about working with him further on developing this skill again. Please note: UNDER NO CIRCUMSTANCES SHOULD YOU ATTEMPT TO FEED MIKEY!! He is not ready for eatin g yet, and good intentions could lead to choking. Don't worry, we'll letcha know when you should start bringing in the brisket. Today, 7.11, I stopped by in the morning, as the nurses had told me the day before that Mikey was out of clean clothes. He was still abed, looking sleepy. I put in the Francine cd, and put away his new clean clothes. His feet were cold, so I put a pair of socks on him. If you don't have kids, you probably don't realize how difficult it is to put on someone's socks for them. While I was wrasslin' 'em on, I accidentally tickled the sole of his right foot. He nearly jumped out of bed, pulling his leg all the way up and away from me. While apologizing, I could not help being impressed; Mikey has little movement on that side of his body, so even though this was a reflex movement, I still think it was pretty significant. While I was straightening up the room, Mikey made a sound, which I took to mean, "Come here." He then initiated a round of face-making with me, duplicating the exercises Molly had put him through the day before. We added one to the repetoire: the DeNiro "You talkin' to me?" with Mikey imitating my sneer, and tossing his chin up, as I did. Yay! He got a little weepy as I was whispering encouragement in his ear about getting better. Sometimes, he worries that he's not strong enough to pull all this off. We all have to keep reminding him that he IS, and that he has a whole gang of people there to supplement that strength, to push and pull when he's too tired to. 7.6.01 - Mikey was just getting into the hallway as I arrived on Friday. His color was good, and he was quite alert; he saw me coming down the hall a good ways off, despite the flurry of activity around him. His purple nails, courtesy Tina and Shireen are quite fetching. After a round of facial exercises, we began watching a tape of classic cartoons. It was a beautiful day, though, so with some coaxing, I got Mikey to agree to go outside. Clad in his new Jamaica baseball cap and sunglasses, he looked like Truman Capote incognito, and he laughed when I told him so. We went out to the 2nd floor deck and sat in half-shade, overlooking the river. It was a little breezy, so I wrapped him up in his sweatshirt and my sweater. Behind the shades, I could see his eyes wide, gazing all around at the blue sky, fluffy clouds, and the slow current of the river. He took several deep breaths to expel that stale Spaulding air and take in some of the breezes wafting in from Charlestown. After about 15 minutes or so, he had had enough, so we went back up to the spot in the 4th floor corridor. While rooting through his movies to find something for later, I came across the storied tape from the Middle East. Recorded in 1991, the tape features one of Mikey's shows: "More Hooks Than a Bait Shop Pop": Jigsaws, Barnies, Burnbox, Sunspots, and Apollo Landing. I realized that I was at this show, though it was before I had begun talking with Mikey. I only knew him as the guy on MFO. Mikey crowed with delight at the sight of himself hamming it up onstage and off, and the nurses were suitably impressed with his suave goatee and skinny physique. I haven't heard Mikey speak since February 6, 2000, and the sight of him onstage, a beer in each hand, somehow made that time simultaneously evaporate and distend…was it just yesterday? Or has it been an eternity? The Jigsaws were late. Mikey was filling the time in by urging us to listen to his show: "every Wednesday night, from 9 to midnight, the best in local and live…"; to tip our waitresses; to come out often and support local music, etc. As the one punctual Jigsaw began a nervous drum check, Mikey told two terrible jokes and then fishing in his shirt pocket, offered the "first giveaway of the evening": a Sunspots sticker. This was followed by thank-yous to the bands, and to Nabil and Joseph, more radio/waitress plugs, and then a flash: "Oh, I know!" he cried, pulling something else out of his pocket: a cartoon from the days' Herald (no doubt scored for free on the subway to work that morning), which he proceeded to read to the audience. Goddamn, what's worse: never being able to see someone and missing them all the time, or being able to see someone anytime you want, and still missing them? Somehow, some day, some way, we've got to get Mikey back in the music. 7-4-01K... Happy Birthday America.... Shireen and I spent some quality time with Mikey today quizzing him on our country's heritage. He knew who wrote the 1812 overture, he knew what the red and white stripes on the flag symbolized, but we all didn't know who wrote the declaration of independence.. Oh well, we're all not perfect. Mikey was quite animated and in great spirits today. Mary had been in earlier to chop his ever growing locks and he looked very alert. He was satisfied in listening to shireen and I blab about gossip, bicker and etc.. It reminds him of just being home on a sunday istening to us bicker and gossip like we used to do. For fun and that glam rock effect, Mikey let us paint his fingernails purple... I told him I was going to find his elton wig and then he could really rock out. The greatest point in our visit was having Mikey squeeze both of Shireen's hands at the same time using both of his hands. Now thats a feat even a tarnished brain stem has trouble doing. It just proves that with a little more time, effort and therapy, we'll have him air drumming in no time.. Go Dee! 7.3.01: When I got to Mikey's today, his door was closed; his roommate, seated in the hall, said that the nurses were getting him up. When the inner sanctum opened, Dee was looking brighter and more alert than I'd seen him in a while. "Are you feeling better today?" I asked. Nod. We decided to hang in his room and do some basic therapy stuff. First, I gave him a haircut. He got a coughing fit in the middle of it, so, spooked, I stopped, fearing another aspiration. But he regained control, and wanted me to finish. Next, I massaged each of his hands, and tried to get him to give me a thumbs up. He was able to wiggle the thumb, but not really raise it. This pneumonia has really kicked his butt, and set back some of his abilities. But not his motivation. I lifted his thumb with mine once or twice, and then he was able to raise and lower it on command. It's like his muscles have "forgotten" how to make the motions he could make before the pneumonia. We worked on thumb motion and hand squeezes for a bit, then moved on to the mirror. I let Mikey gaze at himself for a few minutes, and then he began to make faces at himself, with no prompting from me. Soon I began to give him directions (move your tongue out, up, sideways, etc.). He followed all pretty well, and when I said, "Give us the nicest smile you've got," he gave it; and how. I couldn't help remembering last year, when I took pains to keep Mikey away from mirrors, turning the full-length one to the wall when we went into the activity room and such. I never asked him if he wanted to see himself; I don't know if anyone else put him in front of a mirror until we started using it as a therapy aid. I guess I was afraid that if he saw himself as he was then (and this was long before he could control his head, secretions, etc.), he would be discouraged. Knowing Mikey as I do makes for a battle between hope and despair, the good and the bad. Bad, because it makes me anticipate what will hurt/scare/upset him, sometimes to the extreme, which makes me worry. Good, because it makes me aware of just how incredibly strong he is, and how motivated he can be, even when he is uncertain, to attain a goal he has set. As I gazed down at that million-dollar, albeit crooked, smile, I realized: we have nothing to worry about. We have a LOT of work to do, but nothing to worry about. M.A. Ricciardi <parkdale@mindspring.com> USA - Tuesday, July 03, 2001 at 19:34:08 (EDT) 6.29.01 I hadn't seen Mikey for a week or so, following his first aspiration incident. Although he was in bed when I arrived, tilted at a somewhat awkward attitude, he responded immediately when I walked in. With a crooked grin warmer than 5 days in the Jamaican sun, he greeted me with a run of vocalized syllables, and the half-crying/half-laughing he does when he experiences strong emotions. After cooling his forehead with a wet towel, we had a nose-to-nose to catch up. I gave him the latest celeb death (RIP, Jack Lemmon), and pulled out the goodies I had brought him: 2 videos: "Brassed Off" and Mr. Smith Goes to Washington"; pictures; and a new baseball hat. Then the nurses came in to get him up. Several weeks later (that new trapeze chair lift is, shall we say, somewhat less than efficient), they opened the door again, and Mikey and I got down to some movie watching. We always used to do "theme nights" with our rentals: two (or more) movies with a common theme or thread, so today was no different. I had purposely gotten two "underdog" movies, in which the little guy has his or her triumph, big or small, over the Powers That Be. Mikey chuckled at my selection, and nodded emphatically when I asked him if he got the theme, and if he felt it had nay relevance at all to his own recent setbacks and recoveries. "Are you fighting?" Nod. "Do you feel how much you are supported, encouraged, and loved?" Big Nod. After a long double hand massage, Mikey was flexing his fingers pretty good, and engrossed in "Brassed Off." We both got a little teary (we got a soft spot for oppressed miners), and had a good chat after the movie about things. Then I changed the sheets on the bed, set up the cd player, lined up flicks for later, and popped in "Mr. Smith" as I was leaving. I hope Mikey got some enjoyment and a little more strength from watching his hero Jimmy Stewart bucking the system and beating the odds. It doesn't just happen in Frank Capra films, you know. 6-26-01... Stopped in after work to see the Dee. He was back on his hallway patrol looking very pink and very hairy... We performed numerous shaving techniques to thin his untamed facial hair and were quite successful. However, Mikey still seems a bit weak. I asked him to give me a full thumbs up and he couldn't go full force. Also, some aggrivating neck spasms were back.. a sign that the medication that we have been testing with him, is leaving his system. He will be put back on the Sinemet, but the doctor wants to give his body a rest from the pneumonia attack first. Tim, a favorite nurse of Mikey's, brought in a 1992 tribute video to Queen that was taped at Wembley Stadium. When I got there, Mikey was engrossed in the "Extreme" performance and we were noting how Gary Cherone's hairstyle and clothing style have definately changed for the better... There were also performances by Spinal Tap and Elton John... so I didn't stay long... I let mikey groove to the star studded performances and hopefully singing along in his head... 6.21.01. Got to Spaulding in late afternoon yesterday and found Mikey looking MUCH better than the last time I had seen him, with good color, resting comfortably in his chair, and nice and fresh from Tina's beauty treatment. He was still getting the oxygen "mist" for his lungs but his breathing was very good and the nurse said he was finally off the antibiotics. He's still weak from the pneumonia understandably but very much on the mend! As per Eleanor, I was also not going to push the therapy thing because I know Mikey needs to rest but it's hard to be with him and not push a teeny bit. Perhaps because he was tired, or the time of day, but today he was not very responsive in his hands, as El had reported he was last Friday. His limbs and head (no nodding or head shaking at all today) seemed more weary than usual although his facial expressions were in good form. He did mouth "hello" and gave me some wonderful funny faces and smiles, and throughout our "conversation" rolled his eyes and raised his eyebrows in humorous resignation at his latest health crisis, newest roomate, and other vagaries of life. I massaged his hands (nice manicure Tina!) and we cranked Steve Earle's Trancendental Blues CD. Mikey's most animated moment came when I was telling him about seeing Gary Cherone's new band (kicked ass!!!), Tribe of Judah, and I was describing Mike Mangini's insane drum solo. He got the biggest kick out of that and it was so adorable! The inner drummer lives and relishes the performance of others... By 6:30 he wanted to get back into bed. We picked out a movie which the nurse promised to play for him once he was settled, and we bid a tender goodbye. On my way home I was thinking about a BBQ I had been to earlier in the week with Mark Sandman's friends, and how sad we felt that he wasn't there to enjoy everyone, to watch the kids grow up, to savor the warm summer evening, drink cold beer and talk. He was robbed, we said, shaking our heads, robbed too early. Mikey's been robbed too, and there's no way to make it ok; it's horrible and unfair. The thing with Mikey is, how much can we bring life to him, and bring him out into the world, since he can't get there by himself. That, along with helping him to heal, is a job for all of us. Linda Viens <linda.viens@eudoramail.com> USA - Thursday, June 21, 2001 at 10:20:58 (EDT) 6-20-01K... A hot, muggy day both inside and outside of Spaulding.... Got in early to see the Dee.. he was being shaved by Michelle (not THE Michelle) another Michelle (from Haiti)....and his beard growth was so thick that the electric razor just wasn't cutting it. So I decided to give him the ole Mach III treatment. We blasted Buffalo Tom and went to work. Fortunately, I didn't shave his lips off or the tip of his nose.. but I noticed that one hour after I shaved him... he needed another... I decided once was enough for the day... Man, if only he could grow hair that fast on his noggin. Had a chat with Dr. Stein about Mikey's med trials. It seems that the Parlodel is making his blood pressure go down too low, and Dr. Stein has him on the lowest dose possible, so he is going to discontinue it so Mikey doesn't pass out. He is going to put Mikey back on the Sinemet because of the favorable results (alertness, etc), but is going to let Mikey's system rest for a while first. This nasty pneumonia is still holding on a bit. Mikey's still on oxygen, and antibiotics and wishing it wasn't there. He's sick of his room. He does have another new roommate today.. He's catching up to my roommate totals quickly...in fact, I think he's surpassed the grand total of 18... but its been a while. Left him watching a Val and Dee fave called "Blood Simple" - one of the earlier Coen brothers flicks. Also brought him back "Hairspray" because everyone needs a little "Madison Time" every so often. Keep breathing deep.... 06/18/01: Despite still being tethered to the oxygen mask and IV drip Mikey was in pretty good spirits when I visited him Friday afternoon. Knowing how lousy he's been feeling (he has pneumonia) I suggested we just hang out and listen to some of the new cds Planetary sent him last week which was a-ok with him. I'd also brought him a Travis cd which I thought he'd like too (he did). They were just getting him up when I arrived but I immediately noticed that he looked A LOT better than he had early in the week, in fact his tone was very relaxed and his breathing sounded almost normal. We mostly sat in silence sampling the new cds and I probably would have kept my "no therapy today" promise if I didn't notice him flexing his left wrist after they came in to check his vitals. I'd been massaging his hands while we listened to music, trying to get his left hand to relax and successfully relaxing his right hand. I checked the grip on his right hand and got some really good squeezes, then he started moving the fingers on his right hand, more than I've seen previously. We tried the left hand next which he was having less success with. He could get the fingers moving but the muscles were still very cramped, then back to the right. I'd flex a finger and rub all the muscles he'd need to move a digit and then he would do it. Then we tried moving the fingers on both hands at once and he eventually did it! This was pretty exciting, I don't think I've seen him do this before. Mikey was pretty psyched about it too. I then asked him if there was anything he wanted to communicate to me before I left and he nodded yes so I got out the phrase card book and he choose the cards that said he wanted to communicate something, then using a different spelling approach (me calling out the letters by frequency of use -- he just giving an eyes up when I got to a letter he wanted, no visuals, board or timed signaling) he spelled enough that I understood that he wanted to go to bed. While we were waiting for the aids to come in and get him back in bed I asked him if there was anything else, he nodded yes. From the phrase book he choose a card that he "needed me to do something of him", and then, a card that he wanted me to "talk to ___ about __," he chose the name of the person (a dee team member) from the people cards and then tried to spell his message. Again, after spelling a couple different words, some clear, some garbled, I got enough to start to understand what he wanted to talk about. Using some of the words he'd spelled (or almost spelled) I wrote out a question, he read it and nodded yes and then we went back to yes/no inquiries. The message was personal, so I won't post it here but the banner moment of all this is that he used the cards and spelling to steer the conversation and request something. This has been one of my major goals while working with Mikey on communication, to help him gain the ability to instigate and drive conversation and not be so at the mercy of us guessing what he wants. On Sunday we had an abbreviated singalong, again in his room but this time we got about 2+ hours of singing and socializing in. Mikey was still getting the oxygen, but it's just a supplement at this point and he'll probably be back on hall duty within a day or two. We kept it small, just T Max, Mick, Stan, Moon and me but Mikey was pleased to have company. Again I noticed him moving his right hand after they'd come in to change the antibiotic drip in his arm. It seemed to be shaking (or spasming) in a way I hadn't seen before. I adjusted his arm and the shaking stopped but then he started moving his right thumb which he hadn't been able to do on Friday. It seems like signals are getting through on his right side finally and we'll be keeping our own fingers crossed that this movement becomes functional. 6/14/01... Finally some color in Mikey's face....he's been looking mighty gray the last few days due to his raging infection. Today, his temperature was normal, his face was rosy and he was more alert than I have seen him be in a week. When I arrived he was surrounded by the entourage of nurses and aides on Floor 4, all learning how to use the new lift that is in Mikey's room. Mikey hates it, because it suspends him in this sling chair (looks like something out of a porno movie) and positions him in his wheelchair. For fun and laughs today, the nurses put me the sling (I wanted to see how comfortable it was for him) and hung me suspended from the ceiling. Mikey was quite amused at this sight and surprisingly the chair sling is a pretty comfortable contraption... Aah, these moments one wishes a camera were present... With Mikey in his wheelchair, he is still tethered to the oxygen mask which is helping dry out his congestion. He got a great present from his friends at the Planetary Group, a box of new cd releases and videos. Even in his weakened state, Mikey just had to listen to the new Angry Salad, Mishima, and Rocket from the Crypt (all a Mikey Dee thumbs up - btw..). I left him watching a video of him hosting a performance at the Middle East cafe from 1991 that planetary sent him... Pure Mikey Dee schtick and performances by the Barnies, Jigsaw and a whole bunch of other bands. Mikey was cracking up at his own jokes. He even sported a goatee that made him look like the lead singer of the Smithereens. Rock on Mikey Dee... even if it is on videotape for now.... tina bugara <tbugara@hotmail.com> medford, ma USA - Thursday, June 14, 2001 at 17:42:51 (EDT) 6/12/01 - Although I knew that Mikey had suffered a setback over the weekend (see earlier postings), I was still painfully struck by the absence of him in the hallway, and more so by the sight of him in his room, eyes closed, nodding off in his chair. His lower face was covered by an oxygen mask; his glasses removed so they would not fog up, his toes curled stiffly over the edge of his wheelchair footrests… He opened his eyes as I slipped into the room, and managed a crooked grin. His arms were quite cool to the touch, so I asked if he wanted a blanket. Still bearing a fever, he nodded slowly, and I obliged. Jessica assured me that he "was looking much better," at which I couldn't help wondering how he must have looked the day before. I noticed an old video of RnRTV, a cable access show back in the days before AT&T owned everything. We had a good chuckle over the "production values," the "special effects," and the costumes and hairstyles of the bands: Boo Radley, Here We Are, O Positive, and Big Dipper. Speaking of hairstyles, Mikey perked right up at a brief clip of himself doing On The Town, replete with his "bike messenger" hairdo (shaggy growth, down past his ears) Oh, those innocent days. Mikey was a little phlegm-y, so I gave him suction every so often, and Jessica quickly got him in bed by 5.30. He was more comfortable there, and I was able to bring the tv up close to him to watch some cartoons. You HAVE to have cartoons when you're sick. Mikey chuckled a lot at some of the classic Bugs and Daffy stuff, and asked for "Princess Mononoke" when I left. I stacked it up with an Elton concert tape and Airplane for later, and Mikey was dozing and watching quietly as I left. I'm assuming that the drug trials are suspended while Mikey fights his infection and concentrates on getting better. An infection causes his tone to tighten up, and generally makes him feel too crappy to do much therapy. I stopped outside on the river dock for a while after leaving Mikey's room, watching the cormorants and the ducks. While the summer weather makes for cheerier surroundings, I can't help but remember last summer, and wonder: How many more sunny days our Mikey will pass trapped in the ice of locked-in syndrome? 06/11/01: As Tina has already posted, yesterday was a reminder to us of just how fragile Mikey's health is and, also, of how much the under appreciated staff at Spualding do 24/7 to keep him comfortable and safe. It was supposed to be a singalong Sunday and some of the faithful had started gathering around 1pm. Thinking we'd have a small group anyway, after visiting w/ Mikey a little and seeing his complexion returning to a more familiar healthy pink, T and I thought, 'hey, if Mikey can't get out of bed today, we'll just bring the singalong to him,' especially since his good-natured roommate Jason had taken over Mikey's hall duty responsibilities. By the time we were 8 strong or so nurse Rochelle put the cabash on the whole thing and began shoo-ing away folks - as she so rightly pointed out, Mikey needed to rest - but we still got a song, some visiting and some dirty jokes in. Mikey, miserable behind his oxygen mask couldn't help but smile and crack up a few times. Thanks to T, Tina, Al, Joel, Stan, Moon, Paula, Pete, Karin, Gary and anyone else who may have stopped by. I promised Mikey we'd schedule another singalong soon. I'll post the date and details here. Eleanor <eleanor@rockopera.com> USA - Monday, June 11, 2001 at 12:16:03 (EDT) 6-10-01... Its a scary thing to round the corner into Mikey's room and find him hooked up to tubes and oxygen. Apparently, Mikey had a very bad night. He aspirated some vomit (damn that Jevity... I think his body is revolting and wants some real food).. and for someone like Mikey to do that is very bad. Because he can't move as well as we can, his body can't force vomit out like ours can, and he ends up breathing some into his lungs. This in turn can cause pneumonia and allows fluid to build up in his lungs. So when I found Mikey ashen gray with an oxygen mask on, I freaked. He definately did not feel well today, but allowed a few of the sunday singalongers to seranade him with the Beatles "Goodnight"... he wept silently. Eleanor and I stayed with him for a while and encouraged him to take deep breaths even though it hurt a bit. He pinkened right up after the deep breaths and also after the nurses came in to reposition him. He felt good enough to watch a movie, so I gave him his glasses and threw in "After Hours" which is always good for a few laughs. Send in some jokes, (the dirtier the better)... laughing is good for Mikey and will help his lungs clear out faster. Also, keep him in your thoughts. tina bugara <tbugara@hotmail.com> medford, ma USA - Sunday, June 10, 2001 at 23:48:12 (EDT) 6.8.01: Spaulding oughta change their name to Loew's North Station or something. I came down the hall on 4 South today to find Mikey AND his roommate Jake lined up in the hall watching a flick. I was later than usual, by about an hour, and I could see that Mikey was quite tired. He was not really focusing, on either the movie or on me, and he was very slow to answer queries. He did do some clear mouthing of answers, but only after repeated questioning. He also kept coughing; sitting forward, and getting quite red in the face. I asked if he was swallowing saliva and he nodded, agreeing that although it was "going down the wrong pipe" every so often, he was going to keep practicing. And keep practicing he did, and coughing too, unfortunately. I had brought a bunch of movies by: Some Like It Hot, a Muppets collection, The Faculty, Kroft Supershow, and the most recent Woody: Small Time Crooks (these last three thanks to Wayne Viens). I had been wanting to bring Crooks in for months; Mikey missed seeing it in the theater, and we all know what a big Woody fan he is. I have to say I became quite concerned when it was apparent that he was not focusing at all on the movie. Usually, Woody is the cure-all: for spasms, listlessness, moodiness, or any of the other issues Mikey grapples with on a daily basis. Pop in a Woody flick and he's all good. I asked him if he felt like the drugs were making him feel weird, and he nodded. He wanted to get into bed, so I grabbed a nurse and they got him in. Once he was in bed, he seemed much more comfortable; no coughing, more focused, more relaxed. He wanted to watch the '96 version Jesus Christ Superstar, so I popped it in, climbed carefully into the bed with him, and we took in the show, reminiscing about all the backstage stuff and other silliness. He laughed like a drunken clown when we got to his star turn with the donut, so we replayed it a coupla times, for our amusement and for the edification of his nurses, who were very impressed. eventually Jake came back in, and was hoisted into bed with the new lift they've installed in their room. The nurses say Mikey doesn't like it. It's like a sack/trapeze thing that carries the patient out of their chair and into bed, sort of like a breeches buoy. Doesn't look like much fun for someone who cannot move their limbs and is feeling extra vulnerable. Anyway, once Superstar was over, I popped in the Muppets and turned the screen a little so the guys could watch it together, and slipped out into the night. 6-6-01.... Finally over my virus, I made my way over to see Mikey this afternoon bearing tons of videos. He was on hallway duty and gave me the biggest smile when I snuck up on him. Pulled some classic videos out of my bag... some that he forgot existed. He immediately wanted to see his cameo appearances in the movie "Payoff" - a 1995 documentary about women in the Boston Music Scene. Mikey is one of three men in the whole movie and let out a big laugh every time his face came on screen... He wanted me to keep rewinding his parts. He also gave a great big smile to Brett Milano's cameo appearances as well. About halfway thru the movie, he started to nod off. I asked if he was tired or just bored... he nodded for another "classic" production. So I popped in "Jesus Christ Superstar" from the Boston Rock Opera - circa 1996. I haven't seen Mikey so glued to the t.v. since watching "Run Lola Run" about two years ago. He sat there mesmerized at the whole performance and I swear I could see his lips quiverring, trying to sing along.. I knew he was singing in his head. As far as the Parlodel trial is concerned.. I found Mikey alert today, however, I found that he is having not neck spasms, but up-eye gaze spasms. His eyes seem to wander up as if someone is over his head and he's trying to look at them. I asked him if he was doing that or if it was a spasm, and I got a big thumbs up for a "spasm". I asked him if he could control them and got a "no" that was almost audible. I also noticed that he is getting his yes-no signaling mixed up again.. He pauses after a question and will give false positive results and then change his mind after a few seconds. I feel that he was more alert and less spasmodic on the Sinemet, but parlodel is not supposed to do the same thing as the sinemet. I believe he would benefit from a trial of both drugs together, which I believe is in the works. I wish things were simpler for Mikey and that drug trials always worked positively...but then we'd all be healthy all the time... wouldn't that be great! Keep sending good karma to Mikey! 6.5.01. Ruby and I went to see Mikey last Friday in the early afternoon. He was still in bed, and was quiet but alert. We spent some time in the room with Dee, just playing and connecting, while the nurses got ready to get him up. He seemed subdued to me and I don't know if it was the new drugs he is on. But his response with mouthing some words (hello, no, bye), was quicker and clearer than it had been in a while. Once up at his post in the hallway, we worked with the mirror on mouthing and trying to sound out the alphabet, as well as blowing bubble and using the mirror. Mikey seemed good, gently alert, trying to work, and sticking to it. Ruby played with all of Mikey's toys and visited up and down the hallway while Mikey and I did our thing. When people would pass by Mikey's chair Ruby would tell them, "Mikey's just a little sick", and smile reassuringly at the strangers. It broke my heart, as I only wished it were true. But then I thought, there will come a time, when it IS the truth. Hard work and patience and love will get us there in time. xox. Linda Viens <Linda.viens@eudoramail.com> USA - Tuesday, June 05, 2001 at 13:40:38 (EDT) 06/04/01: First a message from T Max: Singalongers, Thanks to everyone who showed up for the last Mikey Dee Singalong. Mikey was touched (literally). [ed note: yup, that's true. At the end of the singalong we all laid hands on the Dee and sang the Beatles' "Goodnight." Mikey didn't know whether to laugh or cry, so he did both.] The next one is set for Sunday, June 10th, at 1:00 at Spaulding Rehab (8th floor). [if you want to perform something special] Please prepare a couple acoustic songs for you to do. If the songs are familiar or catchy, we'll all join in with you. This month's theme will be "songs that are sung by human beings." That means no barking versions of "Jingle Bells." See you then, T Max [ed note: we meet at 1pm for a quick rehearsal and then sing for the Dee at 2pm. This is a great opportunity to come visit if hospitals usually make ya nervous. If you need more info email T Max at TMAXNOISE@aol.com] Last month we had a great turnout, many faithful from the usual crew plus a bunch of new faces including Randy Black, Merrie Amsterberg, The Decals, Heavy Stud and Chilly Kurtz. Common by folks to sing or just hangout w/ the Dee. And now here are some excerpts of visiting notes from Al Janik who's been seeing the Dee on weekends: 6.1.01 (late afternoon): I snuck down the hallway towards Mikey and peeked at him from behind his tv, where he was watching "Meet the Parents." After a minute of so, he became aware of me (shifted his eyes past the screen to where I was hiding), and began to laugh loudly. As we got nose to nose for a catch up chat, I heard Tina behind us. She had stopped by on her way to mom's, since she still has her sinus infection thing. We hugn for a bit, and she helped me move Mikey and Jevity into the room to watch something else. Workmen had installed a new lift track in the ceiling, which Mikey confirmed was for a trapeze/sexual device he had requested. Later, Rochelle told me that it was a trial for a new device the hospital would be installing in more of the rooms. She also told me that Mikey was getting a new roomie, so we had to once again reconsolidate Mikey's migratory stuff, which had spread all over the room. Jevity Bear couldn't have his own bed anymore. Oh well. Mikey and I went through his videos 2 or 3 times, with him shaking no at every blessed one. This head-shaking unfortunately led to some neck spasms, which we tried to control with deep breathing. He's seen them ALL; Mikey has a lot of downtime, which he spends watching movies, so he goes through tape shipments pretty quickly. PLEASE SEND VIDEOS! Email me if you want to know what kinds or where to mail!! Finally, I said, "How 'bout I just pop one in and we'll see if you like it?" Nod. I chose Nora's "Sex & the City/Sopranos" tape. As we settled in for a cozy bit of Cosa Nostra, Mikey's new roommate arrived. His name is Jake; he seems to be in his early 40s, and he appears to have suffered a similar stroke to Mikey's, though there was no one with him, and I couldn't find a nurse to ask about him. Jake began coughing-he needed suctioning from an aide, and Mikey tried to turn his head to look at him, looking somewhat worried. I said "You remember when you were like that? You've some a long way, huh?" Mikey nodded. Perhaps Mikey can be a recovery model for this man-I think Mikey would like to help him, and it would do them both good. I noticed after a while that Jake was trying to follow the show, so I shifted the tv so they could both see the screen. It was great hearing them both laugh at Tony Soprano's prank on his neighbor; just two guys watching the tube. 06/01/01: When I arrived at Spaulding yesterday afternoon Mikey's room had been completely cleared out and inside, instead of the Dee, there were workman trying to put together some sort of lift, perhaps to help Mikey get in and out of bed on his own, or to assist him moving his arms and legs... not really sure because, while working they found something wrong with the Spaulding air conditioning system in the ceiling of the room and, well, things were moving slowly and hadn't progressed much by the time I left a few hours later. I found Dee in a room across the hall getting hauled into his chair for the afternoon. I planned to escape with him to some quite spot to show him prototypes of his new phrase cards but we ran into Molly, a new speech therapist there, who wanted to work with him. So we shoehorned Mikey and his jevity juice into Megan's tiny office for a speech session. We started with breathing exercises. Molly had a good approach to this and really got Mikey working trying to connect the breathing, articulation and sound. She was trying to get him to say "bye." After a few tries he did manage an audible "ba" and then managed to do it again and then a third time. It was cool seeing him really getting somewhere with it, controlling it. Keep it up and all that articulation work might really pay off! Next, Molly wanted to work with the dreaded letterboard. Since she's new to working with Mikey she has to see for herself what works, what doesn't, and needs to build up a report with him. I tried to keep my mouth shut while she painstakingly tried to get him to spell "the name of the person who visited you earlier today" (the answer was Naama). Mikey reluctantly and very slowly gave up the N and then the A, A but then refused to go any further. Finally, to prove to Molly that he could spell and spare him any more misery, I asked him to just "find the letters with his eyes" and we watched as he glanced down and right for the N,M and up and left for the A's -- had him repeat it a few times so she could see he was really doing it. Molly then wanted to work with the clock communicator and, since it was too small in the office to set it up, we went back to the sunroom. Mikey had no luck triggering the switch by moving his head to the left. Not that he couldn't do it but, once he started he couldn't stop and started having neck spasms instead. -- They have stopped the Sinemet trial and moved on to drug trial number 2; Parlodel. It will be a few days before we see any effects from it and, with the levodopa gone from his system the wobbling and spasms were back.-- I moved the switch to the back of his head, so he'd trigger it with his nod. This worked much better. Mikey had better luck both staying on the switch which moved the dial and releasing it when he reached the target (squares of color). He was enjoying it a lot more too so he and I kept it up for a while after Molly left. I then showed him his phrase cards. He read through all of them. Because his neck muscles were over stimulated by this time I had him signal for the next page with a shrug. He chuckled at some of the suggestions, nodded at seeing some of the phrases we'd worked on together and still seemed into the whole system. He was also really too tired by that time to do too much more work but agreed to try choosing a card. He picked "People" and then "Staff" and then shrugged through all the names and looked at me. "Are you looking for Michelle?" Nod." There is no Michelle card, she doesn't work here anymore." Hard stare. "Would you be happier if there was a card for Michelle?" Nod. Ok, I wrote her in. I also asked him to come up with an alert signal, something he could use to let people know he wanted something, or wanted to communicate. He nodded ok, he'd try (initiation --making the first move-- is very difficult for him). I asked if he wanted to see a movie. Nod. Showing him the movie choice pages he choose "comedy." I set him up in the hallway with "Bananas" and went to write up my visit in the Mikey Book. By the time I came back into the hallway "Bananas" had been stopped and Mikey was dejectedly looking at Fox News instead. What happened? Turns out one of the aids passing by saw the credits rolling (they start a little into the movie) thought it was done and shut off the video. I got it going again. "That's why you need that alert sign Mikey." Again, he promised he try. 05/29/01; Sinemet, day 7: Forgive the sort of "clinical" sound of much of this post. Most of these comments have already gone out to Team Dee. We're sharing notes on our observations of any changes we see in Mikey (good or bad) while he's on these drug trials. Monday: Mikey was in the hall and had just finished watching a movie when I arrived. I wanted to see how he was doing after being on Sinemet for a week. He greeted me with a lot of articulation which I could almost, but not quite, make out. He also seemed to be a bit under the weather (a little congested) and nodded yes that he was tired. I asked him about how he felt, to see if the drug was causing any negative or positive psychological side effects. Both yesterday and Thurs he nodded yes to "uneasy" and "anxious" (but no to "buzzy" and "speedy") so I'm really not sure of the exact feeling he was trying to express. Asked him about nightmares, got a yes, asked whether he was nauseous, got a small yes/shrug. Asked if he was in a bad mood, got a yes, mad at me? got a no. So, I guess he's just feeling out of sorts. I also noticed that his response time was very slow today but accurate/appropriate. On the plus side he was still very relaxed, no neck spasms, less of a tendency to repeat actions, grind, get "tense", easier to relax hand, open his grip and move fingers on left. His posture seems better too. Tested grip on both hands. Pretty good grip on left, although I've seen stronger, little grip success on right. Good thumb control (but slower response time) on left, less trouble inhibiting motion. I focused yesterday on testing Mikey's gaze and his eyes' range of motion because we're considering an eyegaze computer system for him. He did very well. Much better than I'd hoped and much better than in previous tries. I had him follow a pen. He did great both following it with his eyes and shifting his head to continue following it when it left his (stroke compromised) line of sight. I think all the TV watching, and possibly the mirror work, has helped improve his vision. I also asked him to spell his name (he spelled MIKEY DEE) and then SPAULDING while looking at the spelling board but not signaling any other way. I watched his gaze as he found the letters. He did fine with this too. I then asked him to spell Michelle the same way. I saw him find the M and then the I and then, just as he does now when spelling with a partner, he started cracking up and couldn't finish. When I asked him if he'd like the spelling board better if he could use it by himself by just looking at the letters he wanted I got a yes. We also did bubbles thurs and yesterday and both times had good success. After annoying him with these "tests" for about an hour and a half I helped him pick out his next video offering. After nodding yes to the "Soap" marathon that Chris and Deb have lent him he decided, instead, to go for some "Sex and the City" episodes. 5.25.01 - The first thing I noticed about Mikey, into his fifth day on Sinemet, was the total absence of neck spasms. Yay! He was sitting in the hallway, not really watching "The Next Best Thing;" in fact, he was peering out from around the tv as I came down the hall. The lack of spasms has definitely made it easier for Mikey to relax, but I did not see an improved focus, at least today. He said he was tired, which probably accounts for his somewhat slow response time. His nods and shakes were very clear to me; it seems he no longer has to wag his head to "get it going" the way he wants to, when answering a question. I brought him 2 new t-shirts and loaned him my copy of "Don't Shoot Me, I'm Only the Piano Player;" he teared up briefly at "Daniel" but bopped along with me to "Crocodile Rock." Visitors, please play music that Mikey knows and urge him to try to mouth along to the lyrics-on the VH-1 show "Sound Affects," this was how a stroke survivor regained her speech abilities. We were joined by Nora, who kep Mikey amused during his haircut. Another Sinemet breakthrough: Mikey did a much better job of holding his own head up during the trim. Usually, this is a two-person job, but without spasms or head wobbling, it went much quicker and smoother than usual-although I had become adept at the 3-minute haircut in deference to his compromised stamina of the past. These tiny steps towards recovery may not be dramatic to the casual observer, but they represent a real move towards the threshold of normalcy again for Mikey. Better living through chemistry, indeed. We left him watching one of his favorite movies, Ken Russell's "Crimes of Passion." What a pleasant leave-taking it was, going down the hall listening to Mikey roaring with laughter at demented priest Anthony Perkins banging on a piano, shrieking "Forget your troubles/C'mon get happy…" 5-27-01K.... It was a quiet day at Spaulding.. I was a little unnerved by all the silence. Mikey was at his post in the hallway watching television. I popped in the tape of the last 4 episodes of the Sopranos... it seems that since Livia has passed, the Sopranos just don't do it for Mikey this season. He found this season a tad boring without Livia's complaining and Stannah Stairlift appearances. Someone had brought in a movie with Nancy Marchand in it, and he opted to see that instead, laughing hysterically when she appeared on screen. Geez, maybe I should find some old Lou Grant episodes if just seeing her face makes him laugh that much. He seemed really really alert today and after spending a few hours with him, I noticed again NO SPASMS. The Sinemet must be helping with the spasms and the alertness. One of his nurses who only works on the weekend told me that she has noticed a big difference in Mikey's alertness and lack of spasms since last week and was quite impressed. Next week, Mikey's doctor will try Parlodel.. lets hope that it gets Mikey up dancing or at least swearing out loud. Cross every extremity you can for mikey. tina bugara <tbugara@hotmail.com> medford, ma USA - Sunday, May 27, 2001 at 20:51:44 (EDT) 05/24/01:(Thursday) Mikey was, physically, quite subdued today, very relaxed and calm with almost no spasming at all, even when concentrating, so you'd have thought he'd had a super massage but, actually, Naama's away so he didn't get one today. Since this was the first time I've seen him since he started the Sinemet trial I thought I'd sort of "test" his movements, his focus, breathing and articulation skills to see if there were any noticeable changes and also tell him a bit about some of the research being done using dopamine drugs on post stroke patients and for locked-in syndrome. Dopamine is a chemical that acts as the brain's messaging system. It sends signals between cells so they trigger the correct impulse; to move your limbs, get up, walk across the room, speak, think clearly, breathe, initiate. If you compare the brain and body to the internet and your computer, for instance, the only reason your emails or downloads get where you want them to is because of a complex addressing system that keeps track of all those billions of fractured bits. In brainstem strokes this addressing and receiving system is damaged so the messages don't get through. His doctor at Spaulding will be trying a few different drugs (levodopa, bromocriptine and amantadine) that might help replace or increase the dopamine flow. These drugs are now used routinely in the treatment of Parkinson's, however, it's use for TBI, locked-in syndrome and other stroke is still experimental and not that well documented. But there are some impressive recovery stories. Our hope is that they may help Mikey get more permanence and control over the motor skills that he's working so hard to regain. We met with Mikey's speech and ATEK therapists (Megan and Molly) and discussed the different communication systems we're working with, both low tech and high tech and also Mikey's preferences and problems with different approaches. They are reintroducing a device called the "clock communicator" which Mikey can use to choose phrases or selections. He's not crazy about using it but willing to work it in to his food sessions which are, slowly, moving forward. After they left I had him pick a food he wouldn't eat from a list of selections I came up with. It was hard, though, because Mikey would eat just about anything if he could, but he gave the definite yuck to head cheese and tongue. So, he'll choose between mashed potatoes, pudding or head cheese with the clock communicator device next time. I had Mikey communicate what he wanted to do next, therapy wise, by choosing from selections I'd written on his whiteboard. He chose articulation and mirror exercises (not surprisingly) and so I put him through the breathing, bubble, alphabet paces. He worked hard at it although success was varied -- good bubble blowing today. I've asked him to try to remember to keep "saying" the alphabet in his head over and over in his head while articulating as best he could. He really worked at it and every now and then you'd see a clear letter. Read him some email and one of the locked-in case stories, thumb wrestled. All in all a good day. 5-23-01K... Mikey was extremely alert and bright-eyed today when I arrived at his domain. He was just getting out of bed. I wheeled him down to the solarium to read him the latest Rolling Stone stuff. He wanted to hear about Joey Ramone's death and insisted that I read the whole (4 pages long) article to him. I was getting pretty hoarse, and kept asking him if he wanted me to go on at certain points and I got a clear "yes" for each time I asked. Dr. Stein came in to see Mikey in the middle of our Ramones article and informed me that Mikey has been on a trial of a drug called "Sinemet" since monday. This drug has been used in parkinson's patients to flood the brain with levodopa (an important brain chemical that allows messages to travel thru the brain easier). Eleanor has found a ton of research on trying out different parkinson's drugs on people with locked-in syndrome. Some of the people recovered dramatically. So we are trying out some of the drugs on Mikey. I did notice that he had NO NECK Spasms today (which is a godsend) and was extremely alert and clear in his responses to my questions. We are going to watch him closely for the next few days and see if there are any other significant changes. Lets all cross our fingers that one of these medicines work to at least help mikey regain his speech or better control over his extremities so he can communicate better. tina bugara <tbugara@hotmail.com> medford, ma USA - Wednesday, May 23, 2001 at 19:16:10 (EDT) This Just In: Received word from Kristin Gunst, who dropped in on the Dee on Saturday: 5.19.01: anna and i stopped in to visit mikey on saturday. we found him ruling the hallway, watching the end of a movie. the visit went okay, he played some with anna (the face game where they take turns making faces). they did some competitive bubble blowing and both seemed to get a kick out of it. mikey and i also did an exercise on his arms where i would hold his hand (he held mine back very tightly) and i would say "go!" and he would pull while i gave him some resistance. he was pretty strong at it for a while. it seemed to tire him out but i could definitely feel the pull. for an adventure, we took him to the cafeteria and i was directed to the 2nd floor. it was busy as lunchtime was just ending. i asked him he was there for the smells and he gave a chuckle and nodded yes. he is getting much better at nodding yes or no. and he scored BIG POINTS with anna because mikey said it was OKAY to have some gummi bears. i let him have a sniff and then she inhaled them before they escaped. i put some chapstick on him and the guy gave me a pucker up smooch. good job mikey. anna picked out some cds and asked mikey which one. he nodded yes at an elton john. we put it on softly and while i wrote in the book, i looked over and saw him watching her, dancing like little girls do, bobbing her head while sitting on the bed. he was smiling a little. we left him tucked in with his teddy and closed the door to let him dream. it looks like tina and i both hit the blockbuster $2off sale. i dropped off a few movies. one of them is a copy of the boston performance of 'hedwig and the angry inch' which perry played in. it may be difficult for him to pick up all the lyrics but i thought it would be a bit different from the usual "cinema". M.A. Ricciardi <parkdale@mindspring.com> USA - Monday, May 21, 2001 at 17:24:04 (EDT) I arrived late to the monthly singalong, and so missed the crucial rehearsal period, and subsequently had to rely on peeking over Randy Black's shoulder to follow along on the songs I wasn't completely familiar with. The Dee was in *great* form, giving me a huge smile when he saw my Ad Frank t-shirt, and basking in the glow of all the love coming from his friends. He seemed psyched and totally engaged as he listened to songs from The Decals and Heavy Stud; I'd encourage any local musicians who are thinking about coming by for a visit to try out new songs on Mikey -- it hardly seems possible, but he's more eager than ever to be kept in the loop as far as "the scene" goes. When you talk to him about what's going on out there, you have his total attention; his face just lights up. He was thrilled with his presents from The Decals: a cd, a t-shirt, and a box of Quisp (which I hear stays crunchy in Jevity), and expressed enthusiasm for Paula Kelley's upcoming album. There's an intense, palpable energy around Mikey lately; perhaps it's more dramatic and obvious for me, since I don't visit as often, but I left Spaulding yesterday afternoon more hopeful for him than ever. Keep on truckin', Dee! [posted by er] Lisa McColgan <lisamc@bu.edu> USA - Monday, May 21, 2001 at 12:37:57 (EDT) 5.18.01: Found Mikey relaxing in the hallway, sporting his new goatee. I had picked up for him a copy of "The Ideal Husband," for the Dee appreciates culture just as much as he appreciates slapstick. We moved into his still-vacant room, slid some power pop into the cd, and went through the alphabet. Mikey's articulation of these letter shapes continues to improve, as does his ability to control the neck spasms. I complimented him on the goatee, and asked him if it itched. He nodded vehemently. "Do you think you're gonna keep it?" He shook his head no. "Do you want it off now?" Big nod. I asked about 26 more times, just to be sure, since I knew Tina was keeping a hospital poll to see if Mikey should grow the goatee. Seven votes for yes; only two for no, counting Mikey. I guess when you can't scratch it, a minor itch becomes a major irritation. Well, how can you argue? Apologizing all the while, I began to shave off the growth. When he got to the Billy Bob Thornton look, I showed him the mirror. He laughed, and then declined keeping the mustache, in either a streamlined John Waters look or a Hitler brush, though he did agree that the latter would give the hospital rabbi a start. So clean-shaven and tired, we waited for bedtime. I put "Say Anything" into the VCR to pass the time, and bid Mikey goodnight as he watched everygeek hero Lloyd Dobler. M.A. Ricciardi <parkdale@mindspring.com> USA - Monday, May 21, 2001 at 08:48:15 (EDT) 5-17-01K... Mikey was zonked after his massage, sleeping in the hallway, when I arrived. If he can sleep through the mayhem wandering by, I'm sure he can sleep thru anything. He's been sporting a goatee and couldn't decide whether to keep it or shave it. So we are taking a poll of everyone who visits him and he has to abide by the end results. Mikey wanted to go back in his room (since he is roommate-less) and mellow out to some music. Soon after I wheeled him in and got him settled into "Goodbye Yellow Brick Road", the whole shebang of the Speech Therapy department waltzed in and kidnapped him. They brought him downstairs to the Assistive Therapy offices and set up some switches for Mikey to try. Today, he worked with a head switch where he turns his head to manipulate the switch. It was connected to a cassette player which turned on and off whenever Mikey nailed the switch. He did really well with this scoring a 10 out of 10 repetitions. However, as he got more and more tired, his neck started spasming and he would lose control over the switch banging it when he shouldn't be. We'd then have him take a rest and try again. The Assistive Therapy people were quite pleased with Mikey's improvements (I believe he was last assessed in August) that they will be working with him (hopefully) more in trying to get him to use some sort of switch hooked up to a computer for communicating. Lets hope this try works... Cross your fingers. Left Mikey watching "Evil Dead" and laughing his head off. I personally don't think the movie has a plot, but he seemed to enjoy it. tina bugara <tbugara@hotmail.com> medford, ma USA - Thursday, May 17, 2001 at 18:29:37 (EDT) 05/16/01:Mikey's door was closed when I arrived yesterday, an uncommon and instantly unsettling sight. However, upon entering I found the Dee contentedly receiving the ministrations of Naama, his room all to himself, pop music in the cd player. Such a (temporary) luxury to be able to spread out his stuff, open the window and turn up the volume. He was also sporting a goatee which he'd been growing for a few days. It suits him. How did you let them know you wanted that? I asked. shrug. Did someone ask and you say yes? shrug. Did it just magically appear? yes. ok. Naama mentioned that they had just had a moment of non-understanding. Mikey was trying to communicate something to her and she couldn't figure out what he was trying to get across. Is it about the neck spasms? I guessed. yes. Mikey likes his massages, and Naama works on his neck and ears but sometimes the stimulation sets off the spasms. So we discussed that, actually, almost any movement will set them off and asked questions to give him a chance to describe how they feel, and also how its his damaged brainstem that's messing up the signals passing through it. So, did he want her to continue working on it? yes. He also wants more work on his arms, which I knew from talking about it with him last week. One can't imagine how important it is for someone who can feel but not move, like Mikey, to be touched, massaged, stretched. While receiving his gentle neck pulling, Mikey was inspired to show me how he can stick out his tongue, really stick it out, which was a funny sight to behold, and he didn't spasm. There were a few messages in the Mikey Book (a notebook similar to these updates that we keep in Mikey's room so visitors can communicate with each other and quickly assess how Mikey's been during previous visits) insisting visitors make Mikey blow bubbles. Seems he's been slacking off. So, after Naama left, before they got him up for the day, I put him through the bubble paces. He gave it some good tries and got one full batch of bubbles out. Breath control is essential for speech. Mikey needs constant, and sometimes tedious, drilling to retain each new movement or skill. Regained skills don't easily become automatic so he just has to do the same things over and over and over... Once he was up for the day we went into the sunroom to work on communication and spelling. We're working together on a new set of phrase cards. Mikey has such a hard time with the spelling board and, lately, we've been discussing what goes wrong and what will work better. He has little trouble spelling words of pre-existing information (answering a memory question for example, or generic salutations) but has a hard time using this method to express complex, new thoughts. So we agreed to just continue working on spelling drills for signaling practice and focus more on developing the phrase cards to help him steer conversations. Yesterday he spelled a few more staff names he wanted for his People cards and also the names of two of Tina's cats, Lexie and Smudgie but it was slow going, yet better than some days when he can't do it at all. We also worked with a previous set of cards that we'd developed last year but that Mikey had had little success using (mostly due to last summer's frightful vision problems). They were set up with a similar protocol as some of the communication software packages. So, for practice I asked him to pick a subject from page one. He chose "Greetings." I then went to that page and asked him to pick a phrase. He chose "I love you." What a sweetie, he could have chosen "you suck." So we'll be developing this method more. We also worked on articulation exercises. Say Hello. I requested and he articulated a perfect Hello. Say it again. Not so clear the second time. Say shit. And he just started laughing. Just thought I'd pass along a lil' info regarding Linda's beautiful and inspiring message about her afternoon with Mikey. Mikey does indeed suffer from pollen allergies, which usually cause him to sneeze, sniffle, and suffer sinus headaches. Please use care when taking him outside; the pollen is very bad this spring (we've all noticed it, I think), so if you take him out, bring him in at the first sign of allergic distress. After all, that noble nose is VERY sensitive. Love, MAR. M.A. Ricciardi <parkdale@mindspring.com> USA - Tuesday, May 15, 2001 at 18:23:32 (EDT) 5.14.01. Spent a lovely couple of hours with Mikey last Thursday late afternoon/early evening. It was a gorgeous afternoon - sunny and warm, and we took a walk to the terrace outside the cafeteria. We spent about 20 minutes outside doing some mirror work but then Mikey started having terrible coughing fits and trouble breathing - I think it must have been an allergic reaction to pollen in the air or something (tried to find out if he had allergies but none of the nurses seemed to know - anyone else know?) so we quickly moved back inside where he relaxed and stopped coughing immediately. Back in I took a chance and opened the window a little and we sat in his room with the sunshine streaming in, doing some breathing and going thru mouthing the alphabet again with the mirror which continues to be a fabulous tool. The best part of our day was reviewing his experience at Lilli's being out and seeing BRO perform Abby Road and being greeted by so many fans and friends. When I asked him about it he seemed genuinely thrilled to have done it - gone out, and to have seen live music in a club again - considering that it had to have been a strange experience to have in such a different state. He truly absorbed the love and well wishes that were beamed into him from all sides that nite - and he positively radiated with tenderness reflecting upon it. We reminisced and discussed his emotional state/ there is a gentleness and peace in him (not always of course but more now) that is unbelievably moving to behold considering the frustration and anguish inherent in being "locked in". We listened to the Hoodoo Gurus cd a couple times thru and just enjoyed grooving to their music and lyrics. I left Mikey with the sun going down in the west and a sweet if a little sad smile on his face as the music played on. oh that the sun and the warm spring breezes carry you to a peaceful place in the long afternoons of each day dear Mikey.xoxo. Linda Viens <linda.viens@eudoramail.com> USA - Monday, May 14, 2001 at 12:02:51 (EDT) 5.11. 01 – Passed a pleasant afternoon with Mikey. His spirits were quite good, considering that it was Michelle’s (his favorite nurse) last day. Mikey bore it like he has borne so many other disappointments this year, with stoicism and bravery. Given that this is a person who had to be mopped up off many a theater seat at some of the movies we attended together, I was, as I am quite often these days, impressed. Mikey got her a bunch of roses, and nodded sagely as I reminded him of past partings, such as his favorite PT Joyelle. “You were awfully sad then, and you turned out to be okay. There are lots of people here who love you, and they’ll take good care of you just as they always have.” It’s hard, though; for better or for worse, Spaulding has been Mikey’s home for over a year, and there are certain souls there who really have a gift for making him feel safe and comforted. To be locked in, as Mikey is, without an easy way of communicating your needs must be a terrifying state to be in. We have been lucky to have people like Michelle, who intuitively grasp Mikey’s needs, be they physical or emotional, and provide the TLC that he thrives upon. We wish Michelle luck in her new job at Beth Israel, and know she will have more than a few patients enamored of here over there. We also hope she visits! Mikey was pretty spasmy in the neck today, and so drifted in and out of focus conversationally. We listened to the new Gravel Pit and Bleu cds, both of which got big nods from the Dee. Before leaving, I got him into bed with Jessica (thank god she’s still with us!), and went through about 26 videos before finding one he wanted to watch: the old standby “Annie Hall.” As I was rewinding, the tape stopped, and I hot play. “Is this the beginning?” I couldn’t tell. Mikey shook his head, so I hit stop and kept rewinding. Two seconds later, the tape stopped at the beginning. I looked at Mikey. “It was too the beginning; well, practically.” I remembered how Mikey would REFUSE to go into a movie if we’d missed even 1.5 seconds of the opening credits, no matter how far we’d trekked to see it. Mikey laughed; some things never change. I asked, “Is it okay if I go now?” and got a distracted nod, so peacefully absorbed in Woody’s malaise was he. GOT VIDEOS FOR THE DEE? Well, send ‘em along, for the luvva God! Mail to: M.A. Ricciardi, 41 Parkdale Street, Somerville, 02143. (Indicate if you need them back.) Or deliver them yourself in person! 5-9-01K... A bright sunny day and Mikey didn't want to go outside.. He's really serious about his hall duty... I think he just likes all the nurses coming by and patting him on the head... Anywho.. I read Mikey all the TONS of email he's been getting from everyone. He was really touched by the notes and encouragement that people he doesn't even know keep sending him. Mary came by later in my visit and read him and showed him all the beautiful cards the kids at the Elihu Greenwood School in Hyde Park made for him (thanks Nurse Jocelyn!). They were so cute and really gave us all a good chuckle. Mikey's been doing all these great mouth exercises while on hallway patrol. Last week, he couldn't get his tongue out past his lips, but has been practicing so much in front of his mirror, that this week he's basically really sticking his tongue way out.. I think our next big task will be trying to give rasperries to people (Its way harder when you think about it).. He's also been practicing his facial expressions... The best is his "puppy dog" face and his "I'm really angry" face. These faces also help him get more motor control over his mouth and facial muscles... all in good work and time to get him to speak and eat.. Pork.. look out, Mikey's just around the corner.... 05/06/01: Life is such a strange and ephemeral state. We take it all for granted because we simply must. When we are dealt with tragedies the strong among can sometimes grow in ways we never thought possible by channeling our grief and sadness toward something good, or powerful. Such power could be felt all over Boston this past week, and indeed in a more subtle way, all year, as Boston musicians and crowds of fans and well-wishers packed the clubs for the music festival and celebration that was For the Benefit of Mr. Dee. Thanks everyone who shared the experience. But this weekend also dealt a personal blow to Mikey with the sudden passing away of Joan Kahn, Valerie Kahn-Dorato's mother. Valerie is one of Mikey's oldest and dearest friends and Joan was in many ways a second mom to him and also a dear friend. Joan had visited Mikey in the hospital during her visits back home from Florida and followed his recovery faithfully and enthusiastically. She had shared in some of his recent strides with articulation and was proud of his hard work and determination. Valerie and her husband Stephen had planned to be in Boston this weekend for the benefits when they heard the terrible news. All of our hearts go out to them. That Valerie has been such a strong force in Mikey's recovery makes her pain and grief all the more terrible. Words can't really express how we feel. Tina, T Max and I attended Joan's funeral. We wanted to be there to witness and show our support for Valerie and also to stand in for Mikey because he would have wanted to be there. Joan was a very special lady who was taken too soon and I'm glad I got a chance to meet her. After the services we stopped by Spaulding to break the news to Mikey. He cried a bit and then we asked him questions about his feelings for Mrs. Kahn, to give him time to grieve and process. She was a real nice lady, right? Big nod... We hung out with Mikey for a while. T gave him a trim and a shave. Talked about some of the funny things that went on during the weekend shows. T asked him if he remembered what else started this weekend. Mikey needed more information. "Happens every year...." still not sure... T played a little air guitar... big yes and he articulated "Rumble" perfectly. He also showed off some of his hilarious faces. He had been working with the mirror before we arrived. It's been a great tool, not only for visual feedback, but also because when it's set up affixed to his chair-table its a constant reminder to practice. 05/07/01: I visited Mikey again Monday to help him with a quick interview and to work with him on some spelling and communicating some of his thoughts about life, love and therapy. He has been very clear and focused lately, and for longer periods of time, but after a few hours of seriousness he was ready to escape into a couple of episodes of The Simpsons. Tina showed up with a huge load of laundry and some new videos which was great because I'd gone through just about every comedy he had on hand and he'd nixed them all. One of the questions that came up today was, with all the uncertainties and cruelties of life was it still worth living? Big yes. Big yes indeed. 5.3.01 - Finally, a sight many a local music lover has longed to see appeared last night at Lilli's: Mikey Dee in the house! I picked up the Dee early Thursday evening; he had spent most of the day in bed resting up, but was dressed in a benefit tee and sitting in the hallway when I arrived. "Are you ready to ROCK!!??" Dee nodded somewhat uncertainly; he was a bit nervous about going out, not being used to car rides or crowds anymore. But as I suspected, Dee was feeling the love the moment he rolled into Lilli's. Several people commented on how appropriate it was to see Mikey stageside once again, ear plugs (thanks, St. Cherone!) in place, taking in the scene. The pure joy that illuminates Mikey's face as he receives visitors never fails to move me. Whooping with delight at old faces and new, Mikey accepted hugs, kisses, and pats, though, in an unprecedented shattering of reality, declined several beers that were offered to him. No, really. The BRO turned it out, rocking through the Beatles' "Abbey Road," as Mikey nodded and tapped his left hand along. When the chorus turned to "Boy/You're gonna carry that weight/a long time…" there couldn't have been a sentient being in the house who didn't appreciate the layers of meaning the lyric held. No longer the last one thrown out the door by bar waitresses, Mikey did stay out much longer than we'd anticipated, partly due to the throngs of well-wishers schmoozing him up before, during, and after the set; and partly due to some trouble with The Ride. Yep, in true MBTA fashion, the van broke down, and another was delayed in coming for us. T. Max led the crowd in creating more love and healing energy for Mikey, something he began at last year's series. Since it's so rare to get folks in this town to agree on anything, it was overwhelming to see the crowd focusing their hearts on Mikey; he HAD to feel that love washing over him. Finally, Mikey nodded when I asked him if he wanted to get some air, so we rolled out to Somerville Ave, Mikey nodding at the crowd and receiving benisons like he was the Pope or something. As we awaited the second van, a couple of lovely blondes stopped at Mikey's chair. "You don't know us, but we were at your show and we just wanted to tell you we had a great time and we love you," each said, introducing themselves and giving him each a buss on the cheek. As Mikey gaped in delight and laughed, I could only marvel again at his capacity for bringing people out and winning their hearts. Words fail. We were finally rescued by a passing van, which overheard the dispatcher's call and couldn't let Mikey wait any longer. We piled into the van, which was already carrying two venerable oldsters (and what THEY were doing on the town at that hour is anybody's guess), and headed for home. The driver's sense of urgency caused somewhat undue pressure on the accelerator, but I held on to the chair, petted Mikey's shoulder over and over, and tried to ignore the Kenny G. on the radio. The surreal aspect to the evening continued as we got Mikey back up to his room, sneaking past his nurse Rochelle, who busted us for being out past curfew. It was all Mikey's fault; he wouldn't stop laughing as we eased him into his darkened room. Seems like some people forget how to sneak in after a late night once they move out of their parents' houses. A-hem. The evening took a LOT out of Mikey, but he enjoyed it immensely. Thanks to ALL who made the evening a success: the BRO for a rockin' show; Tina and Drugless Douglas at the merch table; Lilli for hosting a great party; the audience, for both their hearts and wallets; Deb for general crowd control; Alex for TCB as per usual; Shireen for her soothing vibes, and John Whiteside for keeping me from hijacking the van and driving it to Spaulding myself. 5-03-01... Dropped into see Mikey today fairly early because I knew today would be an exhausting day for him. He's going out tonite!! Mary is bringing him to Lilli's for the earlier Abbey Road show. I brought him 2 copies of yesterday's Boston Globe and read him the great article about him that adorned the FRONT PAGE... He was so psyched to see his picture on the front page of the Globe! He loved the article as well and hung intently on every word as I was reading it to him... He's a STAR!!! Tonite marks the second night of "For the Benefit of Mr. Dee" and for Mikey to grace Lilli's with his presence is a big deal. He hasn't been to a club (let alone see Lilli's after its renovation from Club3) in a fourteen months. He got a massage from Naama and then was going to stay in bed to rest all day. We'll see you at the club tonite Mikey!!! Its an awesome summer night to go out and see a band... Why stay home and swelter when you can be out and about in the next few nights.. check out the band schedule on the homepage of this site... If Mikey can do it, so can you! tina bugara <tbugara@earthlink.net> medford, ma USA - Thursday, May 03, 2001 at 17:08:56 (EDT) 4-30-01.... Betcha you've never sat back and wondered how many muscles, nerves, and movements it takes to chew, swallow or even lick your lips. Its such a primal instinct-- we are born knowing how to suck.... Imagine having to really think through each movement to try and make them work in the way you want them to after not using these muscles, nerves, etc.. for about a year and a half... Exhausting....That's what Mikey's day was like... absolutely exhausting.... Today was Mikey's first taste of real food (mashed potatoes), and those of you who know Mikey, know that his love for food may even surpass his love of music...(its pretty up there)... However, Mikey must re-learn all the movements and instincts of chewing, moving food from the front of your mouth to the back of your mouth with your tongue and swallowing it without choking. Megan --his speech therapist-- has the patience of a saint because for Mikey to get just 6 small mouthfuls of potatoes in his mouth took about 1 hour. She would make him bite the spoon to get the potatoes off and then we would coach him immensely to try and lick the stuff of his lips with his tongue. Most of it didn't make it down the hatch...but it was a good first try. Its only the beginning of his eating re-learning process, but I'm sure with better tasting food (I asked him what he thought of the hospital potatoes and he made an icky face.. I'll have to make him some of mine.) he'll be back in good time. It really exhausted him today and he fell asleep as soon as we were done. But its a start... onto better tasting stuff... 4/28/01: Another Banner Day. I arrived at Spaulding yesterday afternoon for a meeting with Tina, Mikey and Megan to discuss his recent swallow test. Found Tina and Mikey in the hallway, natch. Tina was reading him Movieline and giving him the usual shit and gossip. Mikey seemed really tired but in good enough spirits. While we were waiting for Megan neuro-psych Dr Klein came by and, since we were all there, asked about moving forward an evaluation that had been scheduled for Monday to right then and there. Mikey nodded sure so we began. Regular readers of these updates may remember that Mikey's earlier evaluation with this doctor had not gone well at all. He had not been able to get Mikey to communicate and had, thus, not been convinced that Mikey was really all that with it or that he would be able to progress much more with his communication. This upset all of us on the team greatly, especially since we knew that Mikey was cognitively very much with it and could communicate very accurately and effectively most of the time. But it was also a wake-up call for us that we needed to continue to challenge Mikey to give cleaner, more accurate, responses, initiate more and work on spelling and communicating with "outsiders" better. So, while it frustrated us, it also got us working Mikey harder. Since then he's made real strides with his breathing (for verbal speech), has started spelling again and has done a variety of logic and memory exercises with us to both sharpen his communication skills and prove that's he's still 100% grade A Mikey Dee. Dr Klein started off by explaining to Mikey that he needed to be able to demonstrate his cognitive skills to the medical staff in order to continue to receive therapy. This sounds pretty harsh, but that's how insurance and medicaid works. No progress, no therapy. That's capitalism for ya. He asked us about the ways we communicate with Mikey, we discussed some of the things we did with him to "test" him, like playing Boggle, using the letterboard to answer a memory question, etc. Dr Klein seemed a wee bit skeptical, but since we insisted he was beyond the basics cognitively he asked Mikey if he could do some math. Mikey nodded yes and Dr. Klein proceeded to ask him a simple verbal math question (you know the "If you had 12 apples and ate 3 how many would be left?" questions that we all remember from elementary school). Mikey answered correctly. Dr. Stein was visibly pleased. Clinically, being able to accurately answer a question like that is a very significant benchmark skill. It states clearly 'This cerebral cortex is working fine, thank you.' He asked a few more. Mikey got most of them right and the one he missed was a logical mistake so even it proved he was really thinking about it. So the rest of the evaluation centered more on where the communication breaks down, the physical reasons it's so difficult. Physical Therapist Kathy happened to walk by. That not only gave her a chance to discuss with Dr. Klein where Mikey's range of motion is now but also a chance for us beg for some more physical therapy for him. We also showed how we used the mirror with Mikey and tried to get Mikey to verbalize. Got some laughs and good articulation, but no real words. Dr Klein was impressed with his expressiveness. He passed the audition! Yee haa!! What about the swallow test? While we were waiting to meet with Megan I asked Mikey how it went and he shook his head. Not Good? yes, not good. So I wasn't too hopeful. We actually discussed the results without Mikey present. Megan explained that while, yes, Mikey ended up wearing most of the food, once they figured out a good angle for him to receive it he did, in fact, swallow most of the last two attempts. So what this means is that Mikey will start to get some food therapy. On Monday he gets to start with some mashed potatoes and, as he gets better and more confident, we'll be able to start giving him purees of whatever he wants. What this does not mean is that he'll be off the Jevity any time soon because the amount of food he'll be able eat will remain limited for awhile. Also, very important, anyone not trained should not try to give him anything to eat just yet. There are risks of him choking. "So Mikey" I said to him when we returned to the hallway "you didn't flunk, Megan says you did good. On Monday you'll get to try some mashed potatoes. Food here we come!" The smile that crossed his face was priceless. 4/25/01... Mikey was fast asleep in the hallway when I got in today... probably due to the fact that he couldn't see anything cause his glasses weren't on his face... When I went up to him, he sensed someone there and woke up... I said... "you're fired! Sleeping on hallway watch huh?" he laughed a bit... then I asked "where are your glasses?" I got to my surprise, some garbled sentence that ended with the quite audible word "off"... "Well, would you like them on?" I asked? He nodded... ah, communication... So we sat and chatted for a bit (I did most of the chatting).. and then watched some Soprano's episodes... He likes the fact that Uncle Junior has cancer and is being a baby about it.. He laughed through all the whiney Uncle Junior is getting chemo scenes...some people just have no sympathy huh... The weird thing about today, was that Mikey had neck spasms, but they were reverse from the way he usually has them... They weren't as severe as his usual spasms but it was strange to see him spasming the other way... Maybe he is just having a backwards day. I wish they'd all just stop... Anyone have a good remedy for neck spasms? 4/23/01 Yesterday was Spaulding Singalong day and this time it was a command performance of Abbey Road, which BRO will be presenting at Lilli's (May 3) as part of For the Benefit of Mr. Dee (Reprise), the second annual 5 night music festival to benefit Mikey's trust. The series runs May 2-6, 2001 and features 140 different acts in 35+ shows spread out through just about every club in town. Adam and the Planetary Group have assembled a roster of some of the best Boston has to offer for it including some really hot up-and-coming performers. More details at the site. Follow the links from the homepage. It was a beautiful day so while the BRO folks were getting ready Tina and I took Mikey out on the deck for some sunshine. Mikey's been really upbeat and focused on his therapy the past few weeks. Maybe it's the spring, maybe it's the massages, maybe it's being honored with the Hall of Fame award from the BMA, maybe it's the continuing stream of visitors and well wishes, maybe it's just the mystery of the healing process but, as someone who sees him on a regular basis, I detect another small step forward. He's been doing more spelling than usual and he and I are also (slowly) working on a phrase card system to supplement his spellingboard and yes/no inquiry conversations. The idea is to use the cards to help him direct conversations easier w/out having to painstakingly spell out everything. We've also taken to using a whiteboard instead of the sticky letters for most of his spelling sessions (another step forward) and I also used that system to help him write his acceptance speech for the Boston Music Awards, writing out suggestions and then getting the nod or no from Mikey until we narrowed it down. He also seems more interested and connected to the world outside of Spaulding than he does sometimes. He fights hard to stave off the terrible isolation and not let it get him down. Well yesterday he was anything but isolated. The creu onboard for the acoustic Abbey Road were, (the band) T Max, Mick Maldonado and Chris Mascara on guitars, Carol Namkoong on keyboard, Corin Ashley on bass and Joel Simches on assorted percussion. Taking the leads and singing their hearts out in sweet harmony were (by initial appearance) Linda Viens, Peter Moore, Chris, Elaine O'Rourke, Gene Dante, Corin, John Surette, Brian Gottesman, Christine Zuffery, Mick, Bleu and Gary Cherone. Additionally the chorus included Judy Dombrowski, Megan Berry, Paula Morris, Stan LeRoy, Al Janik and Terra Fredrichs. Most of these folks plus a few others and a full rock band will be at the Lilli's show. On hand just to be darn cute were Ruby Viens and Brian's little dog Megan. Some of Mikey's friends came by to be the audience including Adam Lewis and Joan Anderman from the Globe. Mikey let out a shriek of delight when he saw Joan, who he hadn't seen since his stroke I don't think. The Abbey Road performance was moving and heartfelt. Mikey remained focused and in good spirits. Afterwards we presented him with his BMA award, since he couldn't be at the Orpheum show (T, Adam and I accepted the award for him at that event). And, in a return to true Mikey style, he was the last to leave the 8th floor yesterday. He was having too good a time, even if we did probably wear him out.
4.20.01 - Despite it being a glorious spring Friday, Mikey nixed my offer to sit outside. He nodded when I asked if being outdoors but confined depresses him, but he also agreed that fresh air is important, so we'll see. Since his roommate was off somewhere, we took advantage of the empty room to blast some music, so we kicked it old school with Tacklebox's "Grand Hotel." Mikey got very excited at the opening guitar riffs, and began bopping his head enthusiastically. A germ of an idea sprouted, and I grabbed his bongos from his closet. Once we got them positioned correctly (Mikey's wrists tend to be rather tight, so although he has some dexterity in his fingers, he can't always do useful things with them), Mikey drummed along!! "Do you feel that?" I asked. "You're DRUMMING!!" I shrieked. Dee nodded and laughed. Although his stamina is compromised, he did keep it up (with frequent breaks) throughout most of the songs. Mikey was very heartened by being able to do something (albeit tentatively) that he once did, something that gave him so much joy. He got a little weepy during one of the slower numbers, but as Skeggie says, "I'm a sucker for the sweet stuff," and so is Mikey. Mikey lit up when his old pal Nora stopped in, and he did a feisty round of tongue exercises for her. Seems that a new face can get more impressive results sometimes in the exercises, because Mikey loves to show off. We tried to do a little spelling, but he was stuck on MICHELLE today, so we gave it up for more drumming to the Barnies. And if you're wondering; the stroke had no impact on Mikey's "drum faces," all of which are in perfect working order. 4.17.01. No wonder Mikey looked and smelled so good when I arrived yesterday - he had been pampered by Mary that morning! He really looked wonderful and was very relaxed and in good spirits. He was watching "Mall Rats" when I arrived - I cracked up. We pulled out the mirror again and went through the entire alphabet - forming the letters with his mouth and tongue and trying to "sound them out". He does so well when he can see himself it's amazing. He worked pretty hard considering he had worked a lot earlier with Mary. He seems sooo close to vocalizing - my god it must be frustrating for him! The window was open - and his curtain was open so he could see the sky. When he wanted a break we read some articles in Spin and just cuddled. It was a lovely spring afternoon - soft air wafting in, and Mikey comfortable - such a blessing. When I was getting ready to go he chose music over a movie, and Elton John out of a bunch of cds. I left him gazing out the window...listening emotionally to Elton's "Believe"...nothing could have been more fitting. Linda Viens <linda.viens@eudoramail.com> USA - Tuesday, April 17, 2001 at 13:40:33 (EDT) 4.17.01 Mikey was still abed today when I arrived; they usually get him up sometime in the early afternoon. While he was down and comfy, I gave him a facial mask-hey, it's always a good time to exfoliate-and then when he was up, gave him a haircut. Looking fresh, smelling good, we did a lot of facial exercises (opening mouth wide, holding, tongue out-this one needs some work), and then hand squeezes. His mood was good (he got a big kick out of himself covered in cucumber/clay mask), and he promised to practice his exercises faithfully. I put some rolled towels in his hands for him to squeeze, so if you get there and he doesn't have 'em, please grab two small towels from the linen cart and put them in his hands. We've GOT to supplement his therapy and get him to do as much himself as he can-it's not like he doesn't have the time. I learned today that his speech aide has left, so he's waiting for a new one. I realize that Spaulding's a busy place with lots of patients and in-demand staff, but it does get frustrating. Please, visitors, help Mikey to help himself. Practice his breathing, mouth, speech, hand, spelling exercises with him! If you are unsure of what to do or how to do it, please contact a member of Team Dee, and we will help! 4.13.01 I brought Jevity Bear back to Mikey's waiting arms today. He communicated that he was feeling pretty good, a bit tired. He shrugged at my offer to take in the spring day-not sure why, maybe he's sick of looking at the Charlestown Bra Strap Bridge. We went into the sun room to do some spelling. We began with the customary warm-up; you guessed it: MICHELLE. Once we got that out of the way, I decided to test his memory again. We were talking about his mom's pet skunk Woody, so I said, "tell me what Woody used to eat." Laughingly, he spelled out HOT DOGS. His responses were clear AND he mouthed some of the letters as he chose them. I then asked Mikey if he wanted to tell me what he was thinking about (he was doing lots of staring at the ceiling, and being slow to respond to questions). He nodded, so we began: IN YOUR …Since Mikey's concentration is blown whenever there's too many people around, we had to vacate the premises when another patient and two visitors barged their way into the room. Oh well. We reconvened in the 4th floor dining room, but got something like IN YOUR AMIAI before he wanted to quit. Very frustrating for us both. I wonder what he would have said if we'd been undisturbed. After that, we made some faced into the mirror, but soon Mikey asked to get into bed. Once there, I put on the Barnies CD. This always gets lots of smiles, but this time, he lifted his head from the pillow to bop his head to each song! I put up his new Semisonic poster (courtesy Tina, as was "Pretty In Pink" n video, which he requested as I was leaving). He nodded when I asked him if he believed, as I do, that there are two kinds of people in this world: people who think Molly made the right decision to go out with Andrew McCarthy, and people who were rooting for Jon Cryer, aka Ducky. I think you can guess which camp Mikey is in. 4-9-2K1... It was a sunny, blue sky day in Boston today... so I dashed over to Spaulding and got Mikey outside.... We decided it was no coat weather. We sat out on the cafe deck where it seems the inner world of the hospital tried to escape to... we tried to escape them, they followed... oh well... Mikey did get this great glimpse of this good-looking redheaded employee.. he gave her a charming Dee smile... but she was entranced in her paperwork... bitch... anywho.. we tried to get our tans even by switching sides every so often.. but the sun tired Mikey quickly and he wanted to return to his galliant fourth floor watch. I gave him a new twist to his usual hallway monotony... I left him with the mirror clipped to his tray table, so he could practice his facial expressions. He completely ignored the fact I was leaving until I stuck my face in his and said "say bye to me".. and he promptly looked in the mirror and perfectly mouthed "bye".... I left him practicing his perfect "marty feldman", his perfect "I'm surprised" and his the the "perfect smile"... keep making faces mikey... facial movement is essential for good speech..... tina bugara <tbugara@hotmail.com> medford, ma USA - Monday, April 09, 2001 at 19:41:40 (EDT) Mikey Dee Updates January 1, 2001 through April 2, 2001 Mikey Dee Updates September 25 through December 28, 2000 Mikey Dee Updates May 21, 2000 through September 24, 2000 Mikey Dee Updates March 6, 2000 through May 20, 2000
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