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Mikey's Recovery Update Archive 6 Back to archive page | to Archive 5 April 9, 2001 through July 27, 2001 11-27-01.... Well, what a difference from the last time I saw Mikey last week. He was alert, vibrant, and very, very, vocal today. I pulled him into the sun lounge (or the cloudy lounge - depending on the weather) and began to brief him about the next phase of his care. Apparently, the time has come for Mikey to be moved to an alternate care facility since Spaulding is an acute rehab hospital and Mikey needs some longer term care and therapy. He fully understands that he has to leave what has become his home for the last two years but doesn't want to. I told him that one day when he gets his voice back and starts eating real food again that maybe he could come home. Out of the blue without any tears or prompting, a slurred "I wanna go home" came out of his mouth. I fell over. The first full sentence I have heard him utter in a long time. Of course when trying to get him to do it again, nothing but mouthing the words came out. Damn traumatic brain injuries, they wield unpredictable results (like speech on demand) and are so frustrating to caregivers. We all want Mikey to speak again.. He's been doing so well verbalizing sounds since Val has been working with him practically every day. But his move will probably throw his progress back a few months. Right now the only facilities that deal with Mikey's injuries aren't even in Boston. Please remember that wherever Mikey is moved, he will still enjoy your company and your presence makes a big positive difference in his life. Tina Bugara <tbugara@earthlink.net> medford, ma USA - Tuesday, November 27, 2001 at 18:01:55 (EST) Spent a couple of hours with Mike yesterday and I've noticed that he seems a bit more down this week. He had seemed this way on the other two days that I had seen him this past week; I think this may have something to do with when his pain pump was last filled. I've noticed that right after the pump is filled, Mike seems to have a false sense of euphoria; then, as the weeks go on, he generally becomes more weepy. This sadness seems much more natural to me and Mike is still willing and able to work around it. Mike and I have continued to go back and forth listening to his old radio tapes, which still manage to bring his spirits way up, and then we switch to taping some of his speech exercises. Yesterday Mike was able to get out some clear "buhs" and "wows" and lately his mouthing has gotten more controlled and broader. Functional, useful speech still eludes him though, and he still isn't able to say a word more than a couple of times over the course of a couple of hours. This frustrates Mike soooo much because he seems to be doing the same things with his mouthing and breathing but not achieving the same results. Mike could certainly use some new motivation right now, so if anyone out there has some old tapes of Mike's shows, please make a copy and contact someone from the team because it really does seem to encouage him to keep trying. Also, Mike's hero Elton is coming to town in a couple of months, so if someone out there has any good connections get the guy to visit Mike! That would be the ultimate motivation for Mike to yell out a really loud "WOW"!!! 11.16.01: Mikey was hanging in the hall, watching the end of one of his Elton tapes. He looked pretty uncomfortable÷lots of wheezing, skewed in his chair so that his head was pushed forward by the headrest·but he still managed a big grin when he saw me. I was glad he was still in his chair, since Iâve been trying to cut his hair for 3 weeks. The nurses said theyâd been teasing him, threatening to braid his hair! So I got him in his room and gave him a good close trim÷nice and fuzzy, just like he likes it. I started petting the new do, and he closed his eyes, took a deep breath, and said ãWOWä nice and loud. Unfortunately, he wasnât able to do it again for the rest of the visit, but the concentrated effort he put into it, the focus, was clearly visible, and clearly something Mikey can initiate when he has the strength. We snuggled in bed for the rest of the visit, listening to the robo-dj and trying not to eavesdrop on the conversation between his new roommate and his girlfriend. Well, not trying very hard. Or at all. Hey, we gottta get our entertainment where we can get it. Mike was sound asleep when I got in yesterday morning. A very rare sight and a very moving one--he looked sooo peaceful that I just watched him for a while until a nurse came in to give him some meds and woke him up. I was afraid that he'd be upset to be woken up out of whatever dream state of mind he was in, but he smiled when he saw me and, after putting his new glasses on and readjusting pillows etc., he was ready to work. On Tuesday I discovered something interesting. While Tina was in his room cleaning out his shelves to make more room, Mike and I hit the 8th floor to do some speech therapy. I was going through my usual methods of demonstrating and describing how to get deep enough breaths to make sound, but Mike wasn't into it. He seemed really tired so I asked him if he wanted to listen to the tape that I had made of us the week before. He nodded an enthusiastic yes. Amazingly, Mike was completely enthralled by the tape and did the exercises as we were hearing them described on the tape! He did them very well too! Also, whenever he would hear some of the controlled sounds that he had made the previous week, it seemed to motivate him even more and he would laugh a lot and get re-energized. Yesterday we had a similar experience, except that we added some more to the tape, which we then immediately listened to and repeated the exercises. It's puzzling that Mike now seems more attentive to my voice on the tape then he does in person, but it's actually much easier for me and enables me to focus a bit more on what he's doing. It also allows for me to work on his hand and foot movements. I'm hoping that this new twist keeps getting the same positive results! 11.9.01: Dee was abed when I arrived, and gave me a big ole grin when I walked in. His color and tone were good, but his breathing was a little whistly and labored at times. This lung congestion seems to be his biggest obstacle, and from what I know, is all too common for locked-in patients. Apparently, Dee had a Big Day Out at the Museum of Science, where he and some other patients took in an Omni movie. His eyes got bog and wide when I asked him if he had a good time and he nodded emphatically. Still, the field trip tuckered him out, so he was not up for much therapy. Actually, Dee and I have a new kind of therapy going on·Actually, its reminiscent of something we used to do back in the day. We had a growing collection of what we called ãsleepytime cds,ä since Mikey has always liked to listen to music while falling asleep. These days, sleep is much harder for him to come by. He says he gets the spins when he closes his eyes. I laid a facecloth across his eyes to shut out the light, and crawled into the edge of the bed with him, set the robo-dj on a soothing cd (maybe Halo Bit, maybe something else), and we went to Nodsville. Deeâs hand coordination/strength is really getting powerful, on both sides. Today, I was on his right (formerly totally immobile) side. I said, ãSqueeze my hand for yes. Are you comfy?ä (squeeze) ãDo want to try to nap?ä (squeeze) ãDo you like listening to music like this?ä (bone-crunching squeeze) I don't think he slept, but he was very calm and peaceful when I left him, listening to the Sheila Divine. I just read Tina's update about her visit with Mike yesterday and it reaffirms what I've known for quite some time: that Mike's health and mood can vary wildly even from one hour to the next. Therefore, depending on when each of us visits we have very different experiences with Mike. I was in for a couple of hours in the early afternoon yesterday and had a very different day with Mike. He was very alert and very enthused and focused on working with me. We did lots of deep breathing and tried to get him to vocalize at will. He did better with this than I had seen since last year. He whispered lots of words and did very broad mouthing--better control with the movements etc. Mike's mood also seemed more up than usual. We always make sure to take breaks in between the various exercises and he laughed quite a lot when I pulled out various old guaranteed-to-make-Mike-laugh schtick. Also I was really happy with the clarity of his yes/no responses. I asked a series of questions having to do with how he was feeling and what he wanted me to do (he always seems much clearer when he's asked things that have some immediate relevance), and I would ask them in several ways to get a yes nod and a no head shake which end up conveying the same answer. He was 100% on those--truly better than he's been since I moved back. Mike wasn't feverish when I saw him, but I do notice that when I spend all day with him he occasionally goes in and out of fevers that tend to last only a short time. I had also visited Mike on Monday and had a similar productive and "up" visit. Mike's been maintaining great eye contact and we seem to be connecting much better lately--he seems to be more energized and able to work better and for longer periods. Thereby giving me a lot more hope for improving his life--though at an agonizingly slow pace, which unfortunately includes many heartbreaking steps backwards. 11-7-01... Mikey was in bed and zoned out when I stopped in to see him today. He sounded congested and seemed like he was having trouble breathing. I asked him if he felt ok, and he shook his head 'no'. So after calling the nurse, shifting him around to his other side (still having bedsore issues), and insisting she take his temperature...sure enough he had one. I had brought him some new videos and he opted for "O Brother Where art Thou" and really got mesmirized by the whole movie. Dr Lang (the best acupuncturist on earth) popped in and began her healing rituals on Mikey who was so absorbed in the movie... didn't budge. After a few needles and some chi rearrangement, Mikey seemed to become more relaxed and began breathing better. Its amazing what a few needles in the right places can do. Left Mikey laughing at the movie and watching it with Dr. Lang - a lot more alert and feeling a bit better... Tina Bugara <tbugara@earthlink.net> medford, ma USA - Wednesday, November 07, 2001 at 20:21:09 (EST) 11.2.01 ö I had a very mellow visit with Mikey today. We agreed that by the time I get there at the end of a week, we are both running on fumes. So he was still in his chair, waiting to get to bed, complaining of a sore butt. Nathaniel got him back under the covers, after a request. There was a little space on one side of him, so I asked if I could get in there too. Mikey nodded, and so I climbed in. Arranging his left arm so that we could hold hands, we just relaxed, listening to the robo-dj, doing deep breathing, letting out some ãhaaaasä and ãbaaaasä (the plosive ãbä syllable is tough for him to do÷he doesnât seem to have good enough control of his lip muscles to make the requisite curl/pressure), and some very solid, controlled hand squeezes. I asked him to show me some thumbs up, which he obligingly did. Mikey yawned every so often, and his head was heavy against mine. I hoped that he might doze off, but he said his mind was too active (typical!) I asked if he was trying to move, and he nodded. ãHow Îbout your toes?ä I asked, and got some serious wriggling of the left foot. It seems that bedsores and colds be damned, our Mikey is on the verge of regaining some important skills·I only hope that our efforts at therapy can help him enough to advance. As always, I urge everyone to bring a little optimism, a little determination, and a little spare time to help Mikey achieve his goals. In a time when so much seems out of our control, here is something that you can play an active role in. Our world is still a place of beauty and joy, despite the lights that have been dimmed. Please help to bring the light that lies trapped in our friend to the surface again.
I went in to see Mike for a few hours this past Monday and a bit on today and we listened to an old radio tape of one of Mike's shows. Mike was absolutely mesmerized--laughing a lot while listening to a very silly on air conversation between himself and his old friend Liam. I had also found an old demo tape of one of his earlier bands he'd been in which he also intently listened to. Mike had had a very similar reaction last March when he watched an old video of himself. Mike is his own best audience and it seems to REALLY give him a lift to see and hear what he was like before the stroke. I plan on trying to dig up more old tapes of him and sprinkle them into every visit because it seems to bring his spirits and also his energy level way up. We took advantage of this newfound energy quite a bit on Monday and Mike mouthed tons of lyrics singing along with Elton. We attempted some bubble blowing and whistle blowing but he wasn't getting into it much so I asked him if he wanted to do some "instant gratification therapy"--mouth and tongue exercises--and as usual Mike was up for it. Afterwards Mike was able to mouth a few words to me and say a very clear "bye" as I left him listening to more of Elton's soothing songs. 10.31.01: Popped in for a quick visit tonight, to drop off Dee's laundry (thanks, Linda!). He was in bed, not watching "Mafia!" and who could blame him·Luckily, I took the liberty of grabbing a couple of videos for him at Hollywood Express on the way over, so he nodded eagerly at an offer of "The Nightmare Before Christmas." I think he's always related to Jack Skellington, the Halloween spook who wants to break out of the role he's been cast into·I tried to make him more comfy (for a guy on a liquid diet, he is one heavy mother), and pulled the tv closer to get his attention. He was quite alert for such a late hour (well, five-thirty, but everything's relative now), nodding clearly at questions and the like. His bedsore must be healing, for he was on his back in the sack and looking more comfortable than he's seemed lately. Yet on this ghostly evening, I can't help wishing that this cruel trick Fate has played upon him could be exchanged for something sweet...
10.30.01. Had a sweet visit with the Dee last Friday. I came in to find him still in bed rest mode but with the lovely Naama giving him some deep massage, he looked very relaxed. He seemed weak still, and somewhat peaked, but perked up when he saw me and engaged in some excellent eye contact without spasms. Naama showed me some wonderful deep tissue techniques for his arms, which relax his hands almost immediately. Since his hands were so relaxed, I worked on them some more while Naama continued on, and Mikey gave lots of good hand squeezes as well as some strong thumbs ups. Naama and I worked together on Mikey for a while, and I learned a lot from spending time with her and Mikey. She is great with him, incredibly gentle, kind, and understanding. Mikey and I spent some time "checking" in, and he nodded yes to my standard questions about his spirit, strength to carry on, etc. He is so courageous! I could not find any drumsticks again (any drummers out there - come visit and bring a stash of old sticks with you! And put them in Mikey's hands and help him to keep the beat!)I was hoping they would get Mikey up that day and he was still in bed when I left but I heard later from Mary that they did get him into the chair for a short time - which is better than nothing! Lying on your side all day has got to be a drag. Mikey got weepy at one point, I think the massage brings up a lot of feelings naturally, and also because I was telling Naama some stories about Mikey, and describing his true personality, and when I was talking about what an incredibly verbal, opinionated, dynamic individual Mikey truly is he broke down. I cannot imagine trying to reconcile those parts of oneself with his present condition. He seemed to work it thru though, and we got some good cuddling in. I left him relaxed and peaceful, with some good tunes playing, as loud as the place will allow, knowing that more dear friends were on their way to offer comfort and courage. Bright blessings to all. Linda Viens <linda.viens@eudoramail.com> USA - Tuesday, October 30, 2001 at 11:07:02 (EST) 10.26.01: Mikey was up in his chair for a while today÷apparently this first day heâs had doctorâs approval to sit on his healing butt. I was joined by Stephen Fredette, musician, stroke survivor, and all-around good guy. Mikey was really touched by his visit, and so was I. The nurses put Mikey to bed shortly after we arrived, so we had a nice visit in his room, listening to Elton and trading stories. Though he still battles the eye spasms, Mikey gazed at Stephen for much of the visit, and seemed more engaged at that hour than he usually does. Being unable to locate the remote for his robo-dj, I fiddled around with the cd player until I got it programmed to play all discs and then rewound a couple of movies for later. I got Teddy snuggled into the crook of Mikeyâs left arm, and slipped his paw into Mikeyâs right hand. Thus situated, he nodded that he was all set for the night, and gave me a very soft, secret ãbye,ä which I returned, and headed out. M.A. Ricciardi <parkdale@mindspring.com> USA - Friday, October 26, 2001 at 18:54:15 (EDT) Arrived at Spaulding aound noon today and got a very vocal happy sorta-sounded-like-"hiiiiii" greeting from Mike. Unfortunately, he still has that sore and has been in bed for most of the past two weeks--it has gotten a bit better though, so I was told that Mike may be able to get out of bed tomorrow. That will be wonderful for Mike because he could really use the change of environment. Despite the confinement Mike has been up to working on various therapies everything from the usual breathing and mouth exercies to trying out different modes of techie communication with the folks from ATEK. The verdict is still out on how well Mike will be able to work with these devices, but we're all hopeful that something will click, and Eleanor is ordering some things to try out next week. If Mike can get the hang of this it will enable him to communicate his needs and thoughts much more effectively so that everyone (not just his intimate circle) will be able to accurately converse with him. We also worked a lot on his hands. First we relaxed them, and then after some time he was able to lift his thumb on command. I find that bringing his hand up so that he is able to see himself move his fingers etc. really helps to motivate him and the movement comes more easily for him. The more feedback that Mike gets, whether it is audio,visual or touch (or better yet all three!), the more motivated he gets and that seems to create a nice domino effect of actions and reactions. So next time you visit with Mike, try to use anything and everything to get him psyched up--of course just seeing a friendly face will motivate him! Got in to see Mike yesterday right after Naama finished up her magical massage therapy so he was quite relaxed and in good spirits. Mike got a new bed and some new cream for that sore on his butt so hopefully those will help to heal him and insure some better sleep! Mike was feeling better than he had been during my last couple of visits so we got right to work. We went through the usual mirror exercises and he was able to mouth all sorts of words and letters, then we worked on breathing. We skipped the bubble blowing and he blew into a whistle instead--I taped him while he made some noise and then played it back for him. Mike REALLY lit up while listening to himself--I counted the seconds that he was able to sustain one long noise and made it to seven! Mike loves the instant gratification that this method provides--hearing the noise as he blows (and afterwards on tape)--but also gets a lot from the bubble blowing which also provides him with the needed visual stimulation of seeing the bubbles that he just blew. Mike did quite well with some new yes/no questions--his long term memory never ceases to amaze me--completely intact! However, his short term memory remains very inaccurate--very common for people in similar situations but still frustrating for all involved. Mike did manage some audible "buhs" and a whispered "bye" or two but too quietly to be heard on the recorder. I'm really anxious for him to hear a word or two played back, since while he's well aware of saying it and certainly reacts very positively, I know that hearing it over and over again would encourage him even more. 10.12.01: I know it’s a bit after the fact, but I just wanted to report on my visit to Mikey on Friday: Mikey was in his chair when I arrived, watching of all things Pokemon on his tv in the hallway. He was looking quite a bit better than I’d seen him on Wednesday, when he was in bed and coughing incessantly. As I approached, I was followed by one of Mikey’s old nurses, Tim, who had dropped by. Mikey let out a vocal greeting when he saw Tim; they always had a great relationship, so he was very pleased to see him. We chatted for a few, and then Mikey and I went into his room to work on some stuff. I put the Cars on the cd player, and began trying to get Mikey to vocalize. I encouraged Mikey to mouth the words of the songs, since I knoew he knows all of the words. He did seem to be trying; his lips were quivering, and working their way through some of the words. When “Bye Bye Love” came on, a particular fave of ours, I urged him to try to sing along, and as I put my ear near his mouth, I distinctly heard him whispering “Bye/Bye” along with the cd. He was also nodding his head in time to the beat. Hooray! People, please encourage Mikey to do this, when you are there, and when he is alone. One of the people profiled in that “Sound Affects” VH-1 special is a stroke survivor who reconnected with her voice by singing along to favorite cds. I strongly believe that lung capacity or no, Mikey has the power to regain his voice if he keeps working hard and steadily. This is something that anyone can do with him. While we were rocking, Ken Field came by, prompting another flow of syllables and wide smile from the Dee. Ken brought an Allan Sherman cd and lots of constructive encouragement in his brief and welcome visit. If you haven’t been by to see Mikey, please do! He’s got long stretches of nuthin-to-do time, and a friendly face would do wonders for him. Please email me with any questions, concerns, or what have you. It’s difficult to come down and see him if you haven’t been by before, but I urge you to do it. I haven’t heard from anyone yet who regrets making the time to visit. And he won’t bite, unless you stick your finger in his mouth. 10.14.01: Sunday: Today was another Singalong for our boy and, despite the gloomy weather, he was once again regaled by some of the music scene's coolest folks... thanks everybody, you know who you are!!... As usual the Beatles' catalogue dominated the proceedings but T Max led us (twice!) through a rousing version of Calendar Girl, Moon sang Heaven (Talking Heads), Frank Rowe sang a few Classic Ruins classics and Gary made Dee (and everyone else) cry with Imagine. We had a couple of other patients and their friends stop by too. These singalongs have become important for both Mikey and the people who come by to sing. Its like a special club. And its a good chance to visit the Dee if hospitals make you nervous too. Write anybody on the Team for details about the next one. Dee wasn't really feeling 100% though and seemed especially tired because of this continuing chest cold he has. But he's getting the nebulizer treatments, which help, and it doesn't seem like this will turn into anything too serious (we hope). 10.11.01: Thursday afternoon: Mikey seemed a lot better than earlier in the week or even, according to Valerie, the day. Found him up in his chair again and in the hall. We moved back to his room and got settled with, first, the new Elton CD and then misc. music. Robo-dj rules! Mikey thinks it does pretty good segues too. I asked him if he was feeling better and he nodded yes. Asked him if his sore bum was the stage-right or stage-left bum and he gave me a big grin. He did seem a little out of it at first (eyes darting around, etc.) but got focused and worked really hard all afternoon managing some really impressive vocalizing. Fortunately some of it was in front of speech therapists Megan and Molly too (Mikey consistently "performs" better for friends than his therapists so its always cool when they see what he's really capable of sometimes). He let out a series of "Buhs" (byes) for them and was also really accurate with his signaling. He also showed them how he can almost mouth MFO (we've practiced "F" a lot, M and O are pretty automatic by now). He also showed off the range of motion he has with his mouth and tongue now. They were impressed, which cheered Mikey up a lot. After they left we did a lot of bubble work. He did really well, despite the congestion. That usually gets him pretty warmed up for vocalizing. The funniest moment of the day was, after continuing with some seriously loud "Buhs" I got him vocalizing "Huhs." I then suggested he say "Hubba" and he did! In fact he said "Hubba hubba", which set him off laughing so much I thought he was gonna fall out of his chair. Anytime he can repeat a sound, or make a variation on a sound it's exciting. We communicated about needing to work on articulation constantly if he wants it to develop into real speech. He nodded about needing something to "trigger" him to remember. So I wrote out all the articulation sounds we'd been working on on his whiteboard, propped it up in front of him and suggessted he look at the board, choose a sound and try and vocalize it. Maybe this visual cueing will help. He seemed to think it might. He also wanted a real shave so I gave it my best with the Mach 3. He held his neck up unassisted really well and seemed to appreciate the effort. (Can't say I'm really good at it though). Toward the end of my visit he was having a bit more trouble with the coughing and phlegm so the respiratory specialist came in and set him up with a nebulizer session. It will probably help a lot. Left him listening to tunes in the twilight. 10.10.01: I stopped by today to pick up Mikey's video rentals and to drop off his brand-new copy of Elton's latest CD. Though he was in bed and feeling crappy (didn't slep at all, eyes red, sore on butt, etc.), he gave me a wobbly grin at my arrival, and at the CD. We inhaled the new CD smell, and I popped it in to the baffling robo-dj.(Tina: Manual! Please!!)The mellow, old-school tunes had the soothing effect I'd hoped for, as did a cold compress. I left out little fighter dozing to Elton. Please send your prayers, good vibes, and any sleepytime CDs for Mikey. You'd think he could get a lot of rest in the hospital, but sadly, sleep is hard to come by for him. Good night, sweet prince. M.A. Ricciardi <parkdale@mindspring.com> USA - Thursday, October 11, 2001 at 14:13:32 (EDT) Before I get into today's visit I want to write a bit about my visit with Mike from last Thursday because it connects to what I mentioned in my last update. I had mentioned that there seemed to be a missing piece to the speech puzzle. Mike has made progress with some of the tools needed for speech so why was he unable to say the words that he could say a year ago--well, that still remains to be a mystery. However, after a few hours of assorted exercises Mike was finally able to say a purposeful word. As I was leaving I told him I would be away for awhile in D.C. and I really NEEDED to hear him say "bye" and at that moment he did!! We both got really excited by this and I asked him to say it again--he repeated it and said it louder that time! Maybe begging is the answer--especially useful if you're going out of town for awhile--maybe Mike wants to leave you with a good impression so you'll keep coming back??! I also had brought in a standard sports whistle which Mike had been working with and had produced lots of noise. Because of the nice progress Mike had made I was really enthused about today's visit.I brought in a mini-tape recorder to tape all the long whistle sounds and words that I was sure Mike would make. Unfortunately, Mike had had a bad night. He had a headache,was very weepy and hadn't slept well due to a recent sore on his buttocks. Therefore, he wasn't up for much therapy--I did tape him but he was only able to blow the whistle for a couple of seconds at a time. The goal is to get to at least five seconds (which I know he had done many times last Thursday but of course I had forgotten the recorder!) in order to be able to sustain enough breath control to say a clear word or two. I left Mike listening to some mellow tunes on his newfangled cd player. The staff plan on leaving him in bed today so he can get some rest(on his side so his butt can heal quicker) and hopefully tomorrow morning when I go in he'll be up to making some major noise and we can both listen and count off the seconds together. 10.8.01.Had a good but poignant visit with the Dee last Wednesday, a beautiful early Fall late afternoon. I found Mikey in his room, unshaved, in his chair but with no TV on or music playing - looking rather lost. Mikey did give me a pretty animated greeting though and seemed to come out of his "daze". Unable to ask for any stimulation, what else can he do but "zone"! It never hurts any less when I first spot him in Spaulding -to see him so bereft of what he once had in abundance - what a natural communicator he was! The anguish of his silence is at times unbearable, and those who visit have to try not to let that show on our faces. Which is why every clear communication, every little gesture, every breakthru is a cherished high. Since it was so nice out we decided to take a walk, downstairs on the promenade by the river and then back up to the patio area, where we found a nice warm spot with indirect sunlight, tools in hand. Mikey did great once again with the bubbles - mustering enough breath for a bunch of long waves of bubbles and he laughed each time too - very satisfying. He also knocked quite a few off the wand with his nose, and was able to lift his head consistantly out of the head rest on command, looking at me, looking at clouds, looking at the sky. Mikey also did well with making faces in the mirror, although did not seem able to work on articulating letters or gathering enough breath to make sounds which he HAD been doing six months ago - which is frustrating. He was able to mouth "bye", and "why", but he had seemed close to saying more words earlier this year. He did hand stretching, and some thumb movement, and we hung out in the gorgeous air - musing once again on life and fate and the cruelty of being where he is. Back in his room, he chose music over a movie. He seemed content as I gathered up his clothes until a song came on in the cd shuffle that wrenched at his heart, a soaring pop anthem (I don't know who): "lift your arms up to the sky, pretend that you can fly, everything is beautiful.." and he burst into tears. I comforted him as best I could but inside I wanted to cry too - it's so unfair! Will he never reach his arms to the sky again? God!!!! My apologies to all you readers for this rather melancholy update..I want so much to be positive but I have to share what is real and dark too. As we come face to face with the duality of life in all that is happening in the world, and pray that goodness will prevail on all of our parts - please keep your prayers for good positive healing energy for Mikey coming..it keeps the abyss at bay - it matters. Linda Viens <linda.viens@eudoramail.com> USA - Tuesday, October 09, 2001 at 10:28:40 (EDT) 10.6.01 ö I dropped by Spaulding armed with 3 rented videos: ãThe Kids Are Alright,ä ãHurlyburly,ä and the Don Knotts classic ãThe Ghost and Mr. Chicken.ä Someone had sent Mikey some cds for his birthday, so I opened up the robo-dj and loaded them in: ãThe Cars, Ron Sexsmith, and Guided by Voices. As we listened to the Cars, we worked on his tongue exercises÷he showed greater strength and fluidity of movement÷and vocalizing. Twice, Mikey was able to get out an audible ãbyeä and each time, his eyes widened with surprise. Since he was looking a little scruffy (seems some of the weekend staff still doesnât get Mikey as spruced up as the weekday staff does), I gave him a shave with his Mach III. Now clean-chaven and comfy, he was ready for a movie. I popped in ãMr. Chicken,ä and walked out to the sound of Mikey laughing his butt off at Don Knotts. M.A. Ricciardi <parkdale@mindspring.com> USA - Monday, October 08, 2001 at 10:02:16 (EDT) Mike was more awake and alert this morning than usual so we got right to it. Mike's breath control was especially good today so he blew tons of bubbles--up to maybe eight or so off of one blow in the wand! We did the usual mirror work and Mike was able to do many faces and various exercises on command. The thing that we find sooo frustrating and puzzling is that while Mike's basic speech skills have increased lately he is less able to produce words. It was over a year ago that Mike said his first clear word "hello" and within weeks he was up to maybe ten or so understandable words. Now a year later it's rare that he is able to even say a "no" or "hi" on command. There seems to be one key piece of the puzzle that is missing that would tie in his current skills... Mike is well aware that he used to be able to say some words so it is difficult to get him interested in doing any therapy that is not directly related to improving his mouth motor movements or breathing. We've used a slide whistle in the past, but it's disappeared, so if anyone knows of a place where I can get some kid type instuments that are easy to blow into and that produce a really loud sound please contact me or bring one in next time you visit. They would be very helpful in figuring out exactly how long Mike is sustaining each breath. While Mike and I were taking a break Pete Sutton came by and was met with a very happy and vocal greeting. After they visited we did various hand stretching exercises, and I asked him about a dozen or so yes/no questions which he answered accurately and clearly--I had been having some trouble recently getting solid "no" head shakes but today was a good day in that area. It's nice to end on a good note so I called it a day there and left him watching a silly video. 9.28.01: Mikey was in the hallway sans tv or music today, looking bored. I find him here more and more often, and it disturbs me. How frustrating it is to not be able to ascertain whether or not he prefers to be so; is he working on movements, lost in daydreams, or bored stiff but unable to ask for help? I am never sure. Enough impotent observer bitching, on with the visit· Mikey nodded eagerly at my suggestion we listen to music in his room, so we went in and I powered up the cd player. No sound came out, until I realized that someone must have bumped the ãTape 2ä monitor. Again, I wondered in frustration how long this had been the case÷it must be maddening to not be able to do anything for oneself or even to articulate wishes or needs·Got it working finally, and we settled in for some ãStop Making Sense.ä Mikey laughed heartily when I took his hands for a ãdance,ä and nodded his head in time to the music. I put his new birthday maracas in his hands, and tried to get him to make some noise. I chose them specifically for their lightness, but arrgh!!---The beads inside must be shaken vigorously to produce any sound, and Mikeyâs wrists are not up to that yet. We focused instead on clicking the heads together, much as weâve done with his sticks in the past. He made some great faces in the mirror on command: ãlook mad, Mikey·.look surprised·..now smile at yourself·and so on. We also worked on tongue movement; first I had him stick it out as far as he could 10 times. Then I had Mikey put his tongue up behind his top front teeth÷something he has difficulty with, but needs for speech÷for 10 reps. Feeling a bit like a hybrid drill sergeant/Richard Simmons, I pushed him through 2 sets of 5 repetitions, with a 30-second rest between sets What was particularly impressive were the times that Mikey remembered the action without having to be told where I wanted him to put his tongue. (Sometimes, the act of moving the muscles is so tough that he forgets what/where/why heâs doing it. I think this may factor into the spelling issues a bit, too.) Pleased with his efforts, we chose a few movies, and settled in for a compendium of British comedy (another gift). We watched most of one tape, but then Mikey seemed to be craving a narrative of sorts, so I put in Tin Men and called it a night. Mikey vowed to practice his tongue exercises, so when you visit, keep him at it!. 09.27.01: Spent the afternoon with Dee. Found him in the hallway, natch, but he gave me an eyes up to relocating to his room to listen to tunes and do a little work with me. He looked pretty good. I hit the play on his "robo-dj" -- his cd jukebox, got Dee settled and started out by working on his hands. While the finger wiggling of late is promising its, unfortunately, undermined by a lot of cramping. PT uses splints to keep him from cramping up too much but it's always a balance between having his hands free to work on movement and keeping them extended. I massaged his arms and hands and Mikey worked with me on breathing and trying to relax. He was pretty flexible today. But before we got started on any more therapy I had to ask him whether he enjoyed his night out on Sat. Believe it or not, he went to the Middle East.... Downstairs. It was the Noise Magazine's 20th anniversary party so of course Dee had to go since he was such an important part of the zine and the scene. I didn't really get a chance to talk to him Sat night so I wondered whether he had a good time. Despite the Ride messing up once again (Tina called a wheelchair accessible cab instead at the last minute but it cost a fortune...) he made it to the club, down the rickety elevator (bet you didn't even know they HAD an elevator...) and up to the side backstage area. He saw some of the night (his curfew and fragile health prohibit him shutting down clubs anymore) and nodded that it was definitely worth the trouble even if he did have to sit out on Mass Ave forever waiting for the cab to return. He didn't think he'd ever see the inside of the Middle East again and was really happy Tina and Valerie helped him get there. I asked Mikey to choose his therapy from the phrase book and he chose breathing exercises, which is never a surprise. We did bubbles, he did great, and then some deep breathing. As if it knew the robo-dj then selected his Andrew Weill breathing CD so we followed it until it segued (quite nicely) into a Morphine track. I then worked with Mikey trying to get him to say (articulate and produce a sound) MFO -- the call letters of the radio station he dj'd for. He can articulate M and O quite well most of the time. F is harder, but not impossible. He promised to keep working on it. We also did some letterboard work but he quickly grew tired. Last week his spelled a little for me but is still having a hard time trying to use this form of communication. But, after not doing it for a few months he's at least giving it a try again. As the robo-dj would pick a tune I'd ask him to give me the first letter of the name of the band playing. He'd try (got some of them although I really had to coax the X out of him for XTC) and then I'd call out MFO and he'd try to articulate it. Relearning the dj skills... all in a days work for the Dee. I think one of the biggest highlights for Mike during these past few days was the long visit to the pet therapy room. We spent a really nice hour with Daphne the adorable pug. I put her on Mike's lap and she promptly gave him many kisses, Mike laughed sooo hard that his face turned totally red--I hadn't seen that happen to him in ages. I've seen Mike respond very animatedly with other dogs but this pug really cracked him up! If any of you have any mellow pets you may want to bring them along on your next visit with Mike. Mike and I have continued to work with the spelling board and we've had a bit of success, with Mike indicating the first couple of letters in answer to a couple of questions. I also think Mike made the most progress with his hand/arm movements than I'd witnessed in awhile. After about ten minutes or so of moving his arm up and down for him he was able to push down hard on my arm whenever I asked him to. We went through this exercise maybe a dozen times each day, and I noticed that Mike definitely seemed to push down harder the more we did it--as long as we took long breaks in between. Another way to get Mike to really work on his hand exercises is to place his more active left hand on his right hand and then have him squeeze his own hand. Mike really smiled a lot when he first did this and when you see him you may want to leave his hands in that position and remind him to squeeze as often as he can. I think like the mirror this will give Mike a good sence of what he's able to do. 9.21.01: Found Mikey in his room on this rainy day, looking tired and deep in thought. He was listening to his new 200 CD jukebox, which he received as a birthday gift. Each time I see Mikey, I notice that he seems more and more alert÷his face is taking on more of its old expressiveness, and he seems more himself. These subtle changes are so gratifying to see·if only they came faster! But I try to be patient. He seemed tired, and had had some visitors earlier in the day, so I asked him if he was up for watching a movie with me. He perked right up at this, I think because all too often, a video signals the end of a visit,. I usually put one on as Iâm leaving÷its just too hard to walk out otherwise So I offered up the two I had brought in from home: ãHarold and Maudeä and ãRemains of the Day.ä He signaled eagerly for ROTD÷no surprise, since he knows its my all-time favorite movie and dear to him as well. We saw it together, twice, in the theaters and both times Mikey had to be squeegeed off the chair when the lights came up. Not too many of his pals know that this wacky guy has a soft spot in his heart for the gauziest merchant-Ivory period piece, and this film, with its message of emotional courage, and misplaced loyalties, always captivated him. And though he reacted vocally to some of our favorite scenes, we were tough, and didnât cry once. We were quite engrossed, and Mikey got visibly annoyed when we were interrupted for such trivialities as vital signs and Jevity doses÷he snapped his head around to me as if to say, ãCanât they see weâre busy? Get rid of them!ä But I hit the pause and he was quickly dealt with. All of the nurses and aides have grown very attached to Mikey÷even the ones who for months mad no visible effort to talk to him while doing something for him, have all opened up and stop in on their way by to say hi or give him a gentle ribbing. He is loved.One of his new nurses is a beautiful Muslim woman÷not sure of her ethnicity, but she looks perhaps Ethiopian or Egyptian÷is very kind, gentle, and attentive. It struck me as I was leaving tonight that her simple acts of care and kindness would be a wonderful lesson to those of us caught up in grief and anger over last weekâs attacks. She is a ãregular person;ä one of us; an American, who each day makes my dear friend comfortable and safe. I thank God, in whatever name, for her. I recently moved back east so I thought I'd write an update on my last three visits with Mike. Grouping the visits together kind of gives more perspective since Mike's moods and abilities seem to vary quite a lot depending on when you see him. For instance last Friday Mike was indicating "yes" to nearly everything I asked him. I would ask him to show me what his "no" looked like that day and he would remain still. Every now and then I could get him to mouth "no" but not with any real regularity. (Mike did wow me by blowing lots of bubbles at a time with one really good breath! This was much improved since my last visit in late July when he was unable to even blow one bubble--I think this is a combo of tons of breathing exercises by the group and taking him off some of the drugs that may have been compromising his respiratory system.) On Monday and today, though, Mike was very accurate with his yes/no responses. I asked him many different types of concrete questions and he was able to shake his head for no or mouth it very effectively. He never seems to have any trouble with his "yes" head nods--but the head shake for "no" can sometimes allude him--maybe just too tired to make that movement sometimes? Also on Monday Mike indicated that he wanted to try some spelling (not usually something he wants to do with me) but he got halfway through the word "Michelle" and then started laughing his head off--he never seems to tire of that joke. I lectured him a bit because it is frustrating and puzzling to know that Mike can spell if he chooses--he very efficiently indicated those letters--but for some reason unknown to any of us he often chooses to spell the same thing over and over. I'm trying different methods to avoid that: I asked him a question and then gave him three possible answers and he had to pick one of those (none of which began with the letter "m"). It worked a little--he started one of the words than started laughing again--I'm hopeful that we can break through this soon. Overall, Mike's mood seemed remarkably upbeat given the circumstances--he laughed and smiled a lot and was very focused thoughout most of my visits. He was also quite vocal--another area that had improved a lot since July! I couldn't really make out any words aside from the rare "no" or a "help" but I think it's a good sign that his breathing and vocal chords are working together enough to get sooo much noise out! Mike does have a long, difficult road ahead of him but I think he has the spirit to make some incredible strides! Valerie Kahn-Dorato <vdorato@mediaone.net> Swampscott, MA USA - Wednesday, September 19, 2001 at 20:13:13 (EDT) 091701: The look on Mikey's face as he entered the 8th floor conference room at Spaulding yesterday, decked out in party splendor and full of many friends, was priceless. Many thanks to everyone who made it. Obviously this week has been incredibly hard for us all. Many people know someone (or know someone who knows someone) who has vanished as a result of the terrible attacks and none of us can separate ourselves from what happened or what is to come. But, as so many of us are doing this week as we start to get back to our routines, out of necessity or defiance, life must go on and yesterday was yet another reminder of how many great people there are out there and how much we need each other. I can't begin to mention all the cool folks who were there but special thanks to everyone who performed: Ad Frank, Shawn Wolf-Wortis, Sugar Twins, Boy Joys, Mick Mondo, Tommy and Mark from SuperZero, Scaramooch himself, Chris Mascara, Al Janik, those Damn Dirty Apes, T Max, Pete Sutton and everyone who joined in for the rousing version of "We Are the Champions." Indeed, there were many champions there yesterday (I'll post some pics). Also thanks to Tina, Mary, Shireen and little ol' me I guess, for the food and planning and to Naama for making sure Mikey was comfortable. Dee was animated, expressive and did his best to connect with everyone who came over to say hi. He got lots of cool gifts including videos, a mechanical kitty -- mesmerizing!, t-shirts, cds and some fuzzy dice for his wheelchair. The team also got him a cd changer for his room so now he can listen to music all the time. A real milestone is that he was able to blow out his candles. We had two, a 3 and a 9 candle and he used two quick short breaths to blow them out. He's been working so hard on his breathing and has been slowly but steadily progressing with it so it was nice to see him be able to do that. For anyone who was at his party last year it was obvious to see how far he's come. But, no rest for the weary. Mikey's friend Valerie is back living in the east coast and will be spending a lot of time doing therapy with him in the coming months. Mikey still has much work to do to re-connect with communication systems and work on his voice and swallowing. But, the past few weeks have, for the most part, been very promising and we're hopeful that some intensive therapy will help him reach the next plateau. Eleanor R. <eleanor@rockopera.com> USA - Monday, September 17, 2001 at 13:10:21 (EDT) 9.12.01: Although its not my regular visiting day, I decided to pop in on Mikey today. At some point during yesterdayâs horrific events, it occurred to me that Mikey, who has many friends and colleagues in New York, might be unaware of the tragedy, or even worse, have only heard bits and pieces. Linda Viens and I went in to see him, give him the news, and reassure him. As it turned out, Mikey said he had heard nothing of the story. His eyes widened as we told him what had happened, and as Linda read to him from the Globe, his emotions overcame him several times. Mikeyâs lips moved vigorously throughout the story, and he clutched at my hand fiercely. He was clearly frustrated at not being able to verbally express his feelings and opinions on the situati on, but his eyes, as usual, spoke volumes. Despite his obvious sorrow, he insisted on hearing the full story, and on watching the news when we took him back to his room. Note to Mikeyâs New York friends: Our hearts ache for you, and share the pain and loss that is particularly keen for you and your neighbors. We long to hear news of your safety, so when you have a moment, please send Mikey an email (mikey@rockopera.com) to let him know you are okay. May blessings, safety, and peace be with you, and with us all. 9.7.01: Mikey was abed this afternoon. He wasnât ill or anything; it just seems that no one had gotten him up today. I didnât want to argue with anyone about it÷unfortunately most of the staff we know well have all moved on from the hospital to other f acilities, so most of the people we relied on for the straight dope are gone. And its hard to know who can get things done, and who will just get pissed off. Besides, it was late afternoon, and he seemed comfortable. We watched some classic Looney Tunes, which had Mikey laughing his butt off, anticipating classic lines that we used to sprinkle through our old conversations·it was fun. After that, we did some deep breathing with the Andrew Weill cd, and Mikey worked on getting bigger exhalations. His lung capacity seems diminished from pre-stroke (not surprising), and the few setbacks and pneumonia bouts he has suffered in the last year. But he was working hard, and when I asked him to blow some bubbles, he gave some good strong breaths and got a lot out o f the bubble wand. This led us back to an earlier topic of conversation: his birthday. Mikey will be celebrating his 39th in another week, and his second birthday at Spaulding. This inevitably brought on some tears÷he canât, on one hand, believe heâs st ill stuck there÷the birthday is a cruel time-marker for him, but he did cheer up at the idea that he could enjoy some frosting this year, and blow out his own candles this time. Tiny gains, but gains nonetheless. PARTY ALERT! If you would like to celeb rate Mikeyâs birthday with him and the Team, come to the 8th floor conference room at Spaulding on SUNDAY, SEPTEMBER 16, from 2ish to 6 pm. This coming Sunday, September 16th, we'll be celebrating Mikey's 39th Birthday with a special singalong and party. Please come on down, sing or just hang out. Hell, we'll even have cake (and pudding for Dee!). Let's show Mikey how much he still means t o us. Last year's party was quite the shmooze-fest -- Mikey would have it no other way! Singers, performers, get there at the usual 1pm for a quick, umm "rehearsal." The party will start around 2:30 and go until around 6pm. 8th Floor conference room, Spau lding Rehab, 125 Nashua Street, Boston, MA. (behind the Fleet Center). You can email me for more info. 09.07.01: Mikey's been impressing the hell out of everyone who's seen him lately. He's been working hard on his breathing exercises and is getting closer to being able to produce a sound at will. While Mikey's ability to vocalize has ebbed and flowed duri ng the long months of his recovery, his recent accomplishments, while subtle, show greater purpose and consistency. I reminded him Thursday that his full time job right now was working on his breathing. He nodded seriously in agreement. It's still what he wants more than anything, to get his voice back, and, boy, would we like to hear it again. The more conscious of proper breath control his is now the more likely it will become second nature again later. He seems to have almost recovered completely from the setbacks of the pneumonia earlier this summer. Mikey's breathing has been so compromised by the stroke that it's not surprising, really, that it's taken him this long to get back up to speed. That said, Thursday was a mixed day for Dee. He did some promising breath work but was also plagued by some neck spasms that completely took the wind and focus right out of him. Before he had the spasms though, he was displaying some of his best posture I've seen yet. (His seasonal allergies seemed to be getti ng the better of him too, he was pretty sniffley). We did manage to go through a new list of 52 rock and roll, movie and personal history trivia questions and he got most of them right. He was stumped by a few of T Max's trick questions but I bet he'll ge t those ones right next time. Last Thursday Mikey worked really hard with me and did some good eye-tracking and letter/icon board work. This week he wasn't having any of it so I gave him my usual lecture and shifted to other exercises he was more into doi ng. We worked some with his drum sticks, I read him some email. (Last week I got him trying to give me rim shots while I read him some of the awful jokes his friend Julie sends him regularly. It was pretty funny). Later we went back to his room and picked out some tunes and worked on thumb wiggles. I left him with Reverse the Curse playing and a final query... Do you remember what your current your full-time job is? Nod. Show me. So he gave me a nice deep breath. I gave him a nice big hug. Keep it up Dee. 8/31: Mikey was watching ãA Civil Action,ä as I arrived today. He looked pretty bored, and was breathing rather loudly through his mouth. He sounded as though he was congested or something. I asked if he was sick, but he said no. Later, I asked his nur se, who said he had been suffering from a slight infection and receiving antibiotics, but was no longer on the medication. She presumed that this meant the infection was gone, but Mikey still seemed under the weather. We went into his room, and he picked out a cd: Gigolo Aunts. He was already holding his drumsticks, and I asked him to click them for me, which he is getting better and better at. I think if heâd been feeling up to snuff heâd have done very well, but as it was, he managed a few soft clicks. He shows an understanding of how to manipulate his hand to get it to hit the stick, something he didnât seem to be processing 2 weeks ago. I saw from his log that he was really sick of his questions, so I went ahead and asked him 10 random questions that I made up as I went along. Most of them were about movies, though one or two concerned music, such as: ãCan you get enough of the Ad Frank cd?ä (Headshake no) and ãDid the Cavedogs get a crappy deal from their label?ä (Nod yes). We were just sitting an d resting when Ruth from Amusia came in, which perked Mikey RIGHT up. Sometimes a new face is just what he needs to lift him out of his doldrums. She brought some videos and a sticker-film camera, with which we made some stickers of Mikey, who posed oblig ingly. Mikey really enjoyed seeing her, catching up, and showing off his new abilities for her. He very consistently alternated between blowing bubbles off the wand and breaking them off the wand with his nose. He kept better track of it than I did! I was interested in meeting Ruth, since Mikeyâs had the amusia disc with him since way back in the scary days at Childrenâs. It was one of the few discs that would soothe him to sleep, so it has remained in heavy rotation. We look forward to getting the next o ne. 8.30.01. It took me a while to find Mikey yesterday because some old friends from the Boston music scene, Lea and Ed, had taken Mikey outside and kept him quite busy for a couple of hours, walking, chatting, enjoying the beautiful day. He eventually t urned up in his room, a bit bushed, but mellow and in good spirits. I could not locate Mikey's drumsticks and I was disappointed because I had been excited to "rock out" with him, and continue the process of helping him to hold the sticks and click them together - which is just a great sensation. Even though he was a tad laconic, I asked him if he felt like working and he nodded yes. I pulled out the list of questions that we have been peppering him with in order to gage consistant responsiveness, and began. Even though we revamped the original speech therapy questions to make them more interesting and relevant to Mikey, he could not help but show annoyance that he was being asked these questions AGAIN. The first couple he responded to accurately but then he began to tease me. Asking him "do Nabil and Joseph own the Middle East", he cocked his head and mouthed "no". I asked him again and again he mouthed "no". He had a twinkle in his eye and I said "are you disgusted with these questions?" . Nod, " yes". We went on to other questions, and again Mikey purposefully answered incorrectly, with me yelling "stop being fresh!" or "stop being a wise guy!" and making him laugh and chuckle quite riotously!. And instead of bumming out because it was not going "smoothly", we turned it into a game, teasing back and forth, and having..dare I say it.. fun!! I realized - we all work so hard to create meaningful, puposeful, healing activities for Mikey that sometimes the fun piece is neglected. This is a call to all of you out there that want to visit - come on down and just hang out, play, be silly, tease, laugh, entertain the man that entertained us all so often. We need you. He needs you! Blessings.L.V. Linda Viens <linda.viens@eudoramail.com> USA - Thursday, August 30, 2001 at 16:33:19 (EDT) 8.24.01: Mikey seemed pretty listless today: eyes at half-mast, slow to answer questions, and nodded when I asked if he was tired. He was up for his monthly trim, though, so we pulled into his room and put on some soft Elton. While I continued to perfe ct the 2 1.2 minute haircut, Mikey showed me that he could hold his head up unsupported for a full 3 seconds. Very impressive. One of the reasons PT has been reluctant to work with him is his lack of "trunk strength," so we will be trying to develop his s tamina for this more and more. I let him rest on me for a few minutes, and as usual, he was a real trouper, and full of grins for the nurses who stopped by to fuzz his head. Dr. Lang came by to deliver a series of needles as well as the electrostimulat ion treatment, which Mikey quite enjoyed. It really seemed to focus his energies, and he stopped the eyeroll spasms for quite a while, entranced by the needle sticking Clive Barker-like out of his third eye. Dr. Lang was appalled to hear of the lack of PT Mikey gets, and vowed to come in more often and work his "skinny butt." She knows Mikey loves pork, and has promised him a pork sandwich from Jake's. She asked if he liked beer, and when Mikey and I finished chortling, she said she'd stake him one of tho se too. After she left, Mikey and I blased some Queen ("We Are the Champions" indeed), and worked with the drumsticks. It's impressive that once the sticks go in his hands, he instinctively begins trying to flex them now, without prompting. He clicked them twice, and I cheered and said, "Great job! Just 10 more." Mr. Silly thought that was a good one, but when he saw I wasn't kidding, he struggled to obey, and after much effort, managed 10 more clicks! Following that, we ran through 10 questions (I fol low the yes/no alternation, but make up my own questions to keep him from getting bored, such as during "Bicycle Race:" Did you and James once sing this song over and over again, all the way from Allston to Harvard Sq.? yes). Snack Time! I put a slice of banana in the Babysafe feeder and plunked it into his mouth. He chewed away gamely, and did not, as I feared, chew right through the bag. We had some giggles over the goofy and yet somehow erotic act of holding the feeder for him to chew on, and he man aged to get quite a bit of banana down. Brisket or bust! All this activity seemed to wear him out, and he became zoned out again. But I know my lil' kosher ham, so I put in a tape of his appearance on a SCAT show, waxing wise and witty about the radio b iz. What a bittersweet sense, seeing him just 4 years ago, clowning around, doing his radio show, imitating Peter Sellers...goddamn, I miss that kid. When the tape ended, I left him in the capable, corruptible hands of Mr. Black and Mr. Flash, rocking o ut to BRO's "Preservation Act II." Come back soon, Mikey. 08/23/01: Spent a nice afternoon working Mikey's skinny lil butt off. They were just getting him up following one of Naama's fabulous massages when I showed up but he was ready to do some breathing and hand work. We went into the gym where Mikey likes to work. It has a wall of glass and the air conditioning works better there than in the older wing of the hospital where the rooms are. We started with breathing and the goal was to get Mikey making sounds. He worked hard breathing deeply and trying to ge t a sound out. He got a few raspy "has" out and was able to build up the breath quicker than at other times. We also went through all his facial exercises and he was very accurate with each one. This was really encouraging too. Next we moved to hand exerc ises. I'd work at getting his hands to relax and then we'd try flexing fingers and thumb, trying to get some of his earlier movement back but, this time, trying to keep the movement under his control. Then we worked a little with his drum sticks. He can h old them quite well and I worked at encouraging him to move his left wrist to click the sticks together. He did move the wrist slightly, not enough to make a sound with the sticks but something. About this time Molly showed up and she ran Mikey through sp eech therapy's daily paces. He answered the dreaded questions and did breathing and bubble work for her. Mikey's been having great success with bubbles again lately. We also worked on the "nose nudge." Mikey was able to knock the bubbles off the wand with his nose and would also tap against a pen that I was holding as though it was a switch. He had total accuracy with it and was even able to hold off triggering until a count of 3, 5 or 8 seconds. This was really exciting because he's had a lot of trouble up 'til now being able to make a movement based on a timed count. It was also encouraging to know he was able to count off in his head and then make a movement. I knew he was doing it because I'd count along silently with him and he got it right each time . So we had a chat about using this movement soon. ATEK is supposedly on the trail finding a suitable switch to test with. We also worked with some icon boards I made for him. He's still just having a terrible time with his letterboard so the icon boards are to practice signaling with instead. One of them has icons he might actually use to direct conversation. The phrase books are still AWOL so we couldn't work with them but I felt he'd probably done enough for one day anyway. After all that work we r etired to his room and organized the rest of his cds. He'd just gotten a few new ones in the mail and immediately wanted to hear the Pills new cd. True to form you could have almost swore it was recorded in 1966. But the songs were good and Mikey put it i nto rotation. After that he requested his hit of the month, Ad Frank's new cd which has not strayed far from the player since he got it. I hit the replay button on my way out as I bid Dee adieu until the next time. 08/20/01: Sunday found some of the usual crew at Spaulding "entertaining" the Dee with another Singalong. Mikey was subdued and somewhat glumly watching a baseball game in the hallway when I arrived to get him ready to join us on the 8th floor -- Watc hing the game? nod. Want me to turn it off? big nod -- But he brightened up considerably when his friend Jonathan Scott (of the infamous Butterscott) peered into his face and exchanged some jokes that only he and Mikey could deconstruct. Mikey also verbal ized the word "pillow" perfectly when I inquired whether he wanted his chair tray or pillows to rest his hands on. It always takes me back when he says something (as it does Mikey) but it reminds me that, someday, somehow, he's going to get back his abili ty to speak. In general, after another frustrating plateau, Mikey's had a few good weeks, even the aides have noticed. We chose the pillows so he could hold his drum sticks and then, sticks, jevity and Jonathan in tow we went up to listen to an afternoon of oldies performed by some of Mikey's pals. Thanks to our ringleader T Max, Mr. Curt, Gary C, Mick M, Linda V, Judy D, "Damn Dirty Apes" Stan and Moon, Peter M, Jonathan, Chance and Tara for the singing. Next month, September 17th, is Mikey's 39th bir thday. We're not sure how we'll be celebrating with him yet... but I'm sure there will be singing... we'll post details soon. 8.17.01 Friday found the Dee in good spirits, still high from his trip off-campus the previous night to see the Tribe of Judah. He nodded when I asked him if he enjoyed it, nodded again if he agreed with me that some of the songs were a bit on th e lengthy side (Dee's a proponent of the 3-minute ditty), and laughed when I asked if he enjoyed the drum solo. We got down to business in his room right away, picking CDs (High Ceilings, Ad Frank, Barnies), and massaging his hands. After some thumb work, he was able to flick his thumb around, which is a vast improvement over the last few weeks. I slipped his sticks into his hands and we began trying to click them together, mainly by having him flex his fingers on his left hand to pivot the stick into the other one. We had some small, tentative success with this, enough to raise his eyebrows and mine, and to convince me that we should all be working on this with him each time we visit. Seeing Mikey with his sticks brings back a little shred of the normalc y we have lost, and I think he feels a bit more like himself. I think much of this new success is attributable to the Symmetral; he says he still feels a bit dopey, but is much more focused in his responses. I asked him the new 10 questions, threw in a few follow-ups to test memory, and had 100% success. Bubble blowing was a little less robust that it has been, so we should also be working on building up his lung power. The Andrew Weill breathwork CD needs to come back into heavy rotation. It's good for speech and good for health in general. Next week: Dee's monthly haircut, and a test to see how well he holds his head up without help. 8-16-01.... It was a grand night for singing... so Eleanor and I took Mikey to the Hatch Shell to see Gary Cherone's new band "Tribe of Judah"... We tried to get Mikey "The Ride", but their account of same day service doesn't match with ours. So we walked him over from Spaulding in his wheelchair. We now know that RTE 28 is not handicapped accessible at Leverett Circle and we had to wheel Mikey almost all the way to Memorial Drive to just cross the street... We also learned th at some of the city sidewalks are in such disrepair that anyone in a wheelchair could get stuck in a pothole... I'm gonna write the State of MA. Mikey did have a good time though. He was all smiles for friends who came up to say 'hi', enjoyed the fresh air (sometimes tainted with that cigarette infested club smell), and basically just getting out to see a show. This dude dressed as a h uge cup of Dunkin' Donuts coffee came up to him and had his picture taken with Mikey. He laughed so hard at this huge cup of coffee guy. It was a riot... It was good to get Mikey out and about and walking back to Spaulding by the water seemed so peaceful and almost magical in a sense.. It was beautiful out, Mikey was enjoying the scenery and even napped a bit. He definately wants to do it again... so we will... 8.14.01: Mikey and I hung out in his room today, listening to music, and stretching his hands and arms. He was feeling good, very relaxed, and pretty spasm-free. I worked his arms and hands until I got them good and relaxed. I asked if he wanted something to hold onto to keep the hands limber, and he nodded. He can't really grip the squeezy balls that he has, so I got an idea. "Want your sticks?" Big nod. I got his drumsticks from his closet and placed them in his hands. He gazed at the m, no doubt recalling the many times he'd held them before. I put on a Ramones cd and we bopped along. After a while, I started clicking the sticks together for him, and asked him to try it. He struggled and squirmed, and eventually was able to produce a few soft clicks. YAY!!! He looked pretty surprised at his own abilities. Mikey shall drum again! We did some bubble blowing, and Mikey showed me how he breaks them with his nose--again, an initiated movement made without prompting--his short-term memory is working. He also blew some off the wand, and even blew a few out of the wand. He is getting better at controlling his breathing; he can take deep breaths without too much prompting now. While we were hanging, Dr. Lang arrived and began a course of needles for his circulation, stomach, and brain functions. Once she got him stuck full, she drifted out for a little bit. Mikey, who had been very alert and resonsive to the needles going in, began to relax. I decided to try the questions on him anyway, to see if he could answer in his punctured state. Since Mikey had been not responding (or answering incorrectly) to the old questions, I tried the new questions, designed to access h is memory and knowledge base, and had total success. He even answered a few followup questions I threw in for good measure. I then had him do a few of the other exercises: vocalizing, and bilabial positioning (to say the word "bye"), both of whi ch he did very well. After all of this work, Mikey looked beat, but was still up for more. I gave him a spoonful of custard (bought fro the cafeteria downstairs), which he spit out rather quickly. Not sure of it was the taste, the texture, or just too tired to dea l. So I set him up with "Traffic" assuring him that it would rate 4 stars on the Mikey Dee scale; ever since I saw this, I'd been waiting for him to get to see it. I sat there for a few minutes reading the subtitles aloud to him, but he said he could see them, so I headed for home. 8.13.01. Mikey was not in the hallway when I arrived last Thursday and I tracked him down in the gym where he was working with Eleanor on different tasks, and he was tired but in good spirits. Eleanor was very excited to show me a newish breakthr u that Al Janick had improvised with Mikey: instead of asking Mikey to blow the bubbles, blowing some for him, catching them on the wand, and then asking Mikey to knock them off the wand, "pop" them, with his nose. This was repeated over and ove r with consistant and happy success! Eleanor explained to Mikey that this is so exciting because a clean, consistant controlled response means the future use of some kind of toggle switch for a computer etc.! I'm sure El will write more about it but it wa s very exciting to see Mikey do it and to see the confidence and pride it gave him. He has had a hard time with some recent approaches to his communication therapies, and the team/hospital is trying to come up with a way to track consistancy of response t hat is meaningful to Mikey, and does not cause outright rebellion. Mikey's body was good and calm - no head spasms, or rocking, and I know it helps that he had had more physical therapy that day than he has been getting, so he was stretched, worked, relax ed. I spent the rest of the late afternoon with Mikey in the sunny gym, and he did use his breath to blow some wonderful bursts of bubbles and worked hard at some hand squeezes, and mouthing "no", and nodding for yes. Bit by bit he is getting hi s strength back, and gearing up for more intensive therapy the team is designing for him for this fall. We headed back to Mikey's room and popped in the new Ad Frank cd which I know he has been listening to a lot and I was dying to hear - it's great! Mike y just radiates with energy and feeling and life when he is listening to music; he is so animated, so full of heart and longing that it is both thrilling and devastating. Oh may the toe tapping lead to finger tapping lead to hand tapping lead to drumming one fine beautiful joyous day...! Linda Viens <linda.viens> USA - Tuesday, August 14, 2001 at 10:43:52 (EDT) 08/13/01: I visited w/ Mikey yesterday to facilitate the "great CD reorganization." We wanted to come up with a way for him to be able to survey his collection better. He was in bed when I arrived but was feeling ok (I think it was real ly just because they are so short staffed there on the weekends). He was also roommate-less again which meant we could spread his stuff all over the place and turn up the tunes. Mikey was totally focused and involved in the organization scheme of his cds and unmistakably happy to be listening to music (he admits it, he watches too much TV these days) and see some cds he probably didn't remember were there. He'd signal whether each CD was "book worthy" or not. Nixed a few, wanted most of them. So me were instant yes'es, I didn't even have to ask. Some he'd think about before deciding. We started by putting each one in a CD holder book (a gift from Wayne Viens). Elton first, natch, (he currently has 14 Elton cds at Spaulding and just laughed when I declared that his Goodbye Yellow Brick Road CD had to be a bootleg). We then went through all the CDs, dividing them up between local bands and national acts and ended up filling the rest of the first book up w/ just the local CDs. So when Tina showed up a little later I went out to Best Buy to get another book. We filled that up too w/ the rest of his pop, rock and compilations. By the time we'd done that he was getting pretty tired (it had been a few hours) but he hung in there. He left a few for later consideration. It was good to see him remain so focused on a project for so long. I just wish his 5-CD changer hadn't crapped out. Someday we'll have to get another one or, better yet, one of those CD jukeboxes and stick the whole collection in. Tina also asked him "the five questions." These are simple questions that speech therapy has devised as benchmark tests of Mikey's signaling accuracy. They ask the questions every day along with having him do some demonstrations of o ther skills he has (blowing bubbles, saying Bye, letterboard stuff) He hates doing it... really hates doing it... and usually (or seemingly) won't cooperate. He'll reluctantly answer them for us so we're keeping track of his responses too. The thing is th at Spaulding uses tests like these to determine further therapy directions so we're trying to figure out what to do. The questions are really stupid so T Max came up with some Boston Rock Trivia questions to ask instead. We'll see if they'll substitute th e questions with those. Tina also gave Mikey a shave and did his nails. He rewarded us with some left toe wiggles and later, while listening to The Jam some toe tapping. Good to see he's still got it. We also talked to Mikey about getting some physical therapy with a n electro-stimulator machine. These machines are used in stroke therapy (for weakened muscles and to help with spasms) and also for back pain, but not usually for Locked-in patients, the standard medical view being that it can't help with the severity of that condition. However, we know of a patient who is having some success with one and have run across it in one or two other studies so we say, why not try it at least? Although Spaulding is generally conservative in their approach to Mikey's therapy, muc h too conservative we think, at least they never put up roadblocks when we find things on our own we like to try, so Tina's chiropractor will speak w/ his Neurologist and he'll get a trial with one. The hope is that it might help with his motor memory, so he'll be able to relearn movement and so the movement he does regain stays with him and stays functional. So, send your good vibes his way too. When I visited Mikey on Thursday to do more structured speech and vision therapy he also had a session with Molly (one of his speech therapists). She went through the "five questions" and skill assessment and while doing bubbles, ins tead of blowing a bubble off the wand, which is something he does to build up breath control, he leaned over and popped it with his nose. I laughed of course which probably encouraged him to do it again. So we did a few more and he'd either blow at the bu bble or pop it. He'd lean forward slightly and move his head slightly to knock the bubble off. Later that day I asked him to show Linda and he did five in a row, no problem. Al Janik also stopped in Sunday with his son Calvin in tow so Mikey showed him hi s new skill too (Al also does bubble therapy w/ Mikey when he visits). If this movement stays clean and under his control Mikey could possibly use it to accurately hit a small toggle-type switch soon. Something which, although he's had limited success for stretches with either his head or thumb, has thus far elud ed him. He's also currently on a drug, symmetral (amatadine) which may help with movement (it's similar to the sinemet he was taking earlier, which also showed some promise). So far, cross your fingers, the movement hasn't triggered any neck spasms or bec ome spasmodic. Plus, the other really significant thing about it is that Mikey initiated it. It was his idea. That's really cool because, so far, with some exceptions, initiation of movement without some sort of prompting has been almost impossible for hi m. So maybe he'll be putting that shnoz of his to good use soon! 8.7.01: Been having a little computer touble, but I wanted to post a brief update...Mikey's distance vision seems to be pretty good, given that he recognized me from the end of the hallway today. He's off the Ritalin (Mikey's doctor has been cycl ing him through a variety of drugs from Sinemet on down the line, to see which one is the most effective in controlling his spasms and facilitating his motor/communications skills). Ritalin clearly won the award for Least Helpful. Mikey is now trying one called Amantadine, which has had success in other stroke survivors in reawakening motor functions. Only 2 days into the trial, the only function it seems to have awakened is neck spasms, but it takes a few days for these drugs to get going in the body. Speech Therapist Molly arrived shortly after I did, and put Mikey through his paces. Sadly, Mikey's been having trouble communiocating with his therapists; he can answer just fine when one of the Team asks him a question, but he seems to shut down when it's a professional. I think that to some extent, it's "performance anxiety" since he is being evaluated, and he knows it. Of course, sometimes, he does the same thing with us, but we are still trying to get to the bottom of the issue. We'll keep you posted, and do want to assure visitors that Mikey is very aware and responsive. You should not feel as though you cannot connect with him, or should not visit. After Molly left, I put the Dee through some paces of my own, to the tune of some chocolate pudding. He eagerly took in four or five spoonfuls, and even managed to swallow a little of it. You may recall that these food trials are primarily to stimulate the chewing/swallowing/tongue movement that eating (and to some degree, speech) requires. We're not actually feeding him by mouth yet. Given that earlier trials just 2 weeks ago were met with apprehension and refusal on Mikey's part, I am encour aged by his progress in this area. I mean, it's food, it's Mikey; the two just go together. 8-4-01.... It's good to see Mikey smile... It's even better to see Mikey laugh... Arrived at Spaulding with a head cleaner for Mikey's VCR.. it seems its been played so much that snow, snot and schtuf was just preventing it from playing.. Once th e head cleaner did its job, Mikey was back in action. Found him in the hallway (he should get paid for that duty).. watching crappy tv. He greeted me quite animated and we had a pretty good conversation.. His yeses and no's were quite clear and now he is off the Ritalin which proves that it backf ired on poor Mr. Dee. While reading him the latest music gossip from Rolling Stone, Dr. Altschuler (the hospital dentist) stopped by to say hello to Mikey in the hallway. He later appeared with O.T.- vibrant little dog who, when placed in Mikey's lap, pro ceeded to lick his nose and head continuously. I haven't seen Mikey laugh so hard in such a long time. The dog just went to town and Mikey was thrilled.. Dr. Altschuler got a great laugh as well and said it was great to see Mikey so animated. He's going t o try and bring the dog in more often to see the Dee (Dr. Altschuler's wife is a patient)... Keep laughing Mikey.. it made everyone's day a little brighter... Mikey Dee Updates April 9, 2001 through July 27, 2001 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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