| Mikey's Recovery Update Archive 2
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9-26-2K... Saw Mikey breifly today earlier in the day while he was still in bed waiting for the therapists to get him into his wheels. When I saw him, he was missing his eyepatch and glasses and it took me a while to find them... I seem to find everything else that was lost in the last six months in his room and then realized that they were on his bed under his teddy bear the whole time.. Once I got them on him, he started to bawl... turns out that it was Michelle's day off and he was all discombobulated because she wasnt there today.... Unreal... thats love for ya... Anywho... We worked on some new faces today... The Mick Jagger Pout and Pucker and the Steven Tyler Lip Thrust... He did well on the Jagger Pout... The Lip Thrust needs work... we also worked on the Woody Woodpecker Laugh... he can get that out spontaneously but not in tune yet, but we're working on it... When the therapists came in, he started to cry and said "help me... wanna go home"... I told him that we weren't holding him in prison and that things could be worse, he could be across the street in jail being violated against his will.. He laughed.... He knows he's there to work on all that needs to be worked on, he's just frustrated and impatient... who can blame him... tina bugara <tina@eink.com> medford, ma USA - Monday, September 25, 2000 at 19:24:42 (EDT) 9/25/00.Wish I had gotten to see more of Mike's dear friend Valerie while she was here! Talk about giving Mikey a huge dose of TLC! Saw Mikey late afternoon on Sat. - when I got there, his acupressurist Janet was working on him and he was very relaxed and mellow but responding well to her work. While he lay on his side and she worked on him we held hands and as everyone has been reporting - he kept mouthing words like crazy. At one point Janet was working on his head and he started to get emotional - mouthing "why" and "why me" and then releasing his frustration in a rush of tears. We both reassured him over and over that as many times as this happens and as everyone of us knows - it's always a good thing - it's a release of pain and every release means that that pain won't turn poisenous in Mikey's body and soul. But he calmed down and used the spelling board a bit and we goofed around - making faces and laughing and being silly. Worked on using his breath and saying words out loud - there were some good noises but no specific words that I could make out. Just another day of hangin' with this remarkable person, who's personal courage and fortitude continues to astonish. The skies outside got cloudy and the hospital floor got more quiet, as visitors said their goodbyes to their loved ones and headed home to their bustling lives. Leaving Mikey is the hardest part..leaving him alone with his reality. A reality, that, thank the gods, at least is not static, but full of movement, small triumphs, and daily progress. Linda S. Viens <linda.viens@eudoramail.com> USA - Monday, September 25, 2000 at 10:51:55 (EDT) 9-24-2K - Its been an emotional few days and Valerie has dealt with the brunt of it. Since she's only here for a few days, she's been spending magnanamous amounts of time with Mikey. So here's the story... since Mikey's famous "what hath god wrought"... uh, I mean.. "hello" the other day, he has been constantly and frustratingly trying to speak. He has been mouthing words left and right, and his speech therapist Megan has been working with Mikey on breathing exercises in trying to get the sounds out. Mikey wants to get the sounds out so bad, that he is exhausting himself, frustrating himself and just plain trying too hard collapsing in tears. Yesterday he said "help me" to Michelle, his favorite nurse, over and over and "ow" cause he was in pain. He whispered stuff to valerie all day long... when we were leaving last night, he cried and blurted out this sentence... over and over (his words are still very slurry and unintelligable due to lack of muscle control which he will gain back with exercise).. we figured the sentence out to be "get me out of here" and then another sentence of " i want to go home".. a lot of verbiage from a man of no words for seven months.... we just sat there and cried and were speechless ourselves... Today found Mikey in better spirits with a visit from Smudgie who curled up right up next to the dee and decided to snuggle with him... Dee was psyched to see her... I didn't stay long... Val did... but since she's leaving for California tomorrow, Mikey got quite upset and cried out... "val don't go"... slurry but definately "val don't go"... Its so amazing that Mikey's trying so hard... we've waited seven long months to hear his voice... its like the best present on earth.... I can't wait until he's babbling so much.. I will NEVER ever tell him to shut up EVER.. thats a PROMISE.... tina bugara and valerie kahn-dorato <tina@eink.com> medford, ma USA - Saturday, September 23, 2000 at 22:00:19 (EDT) 9.22.00 Found Mikey in the sunroom today, working hard with Megan and Val. He let out a screech of happiness at seeing me, and I'll tell you it was the nicest reception I'd gotten all day. He was clearly frustrated at not being able to speak, given that he's now said his first word…it's hard to be patient, especially when you've got so much to say…We had a nice visit, lots of jokes, hand squeezes, thumb wrestling (he'll be beating me again soon!), and stuff. At one point, we asked him some question or other, and I heard him say very very softly, "no." Such a tiny sound, but it might've as well been the Hallelujah Chorus for the joy and hope it brings. We are getting there………………. M.A. Ricciardi <parkdale@mindspring.com> USA - Saturday, September 23, 2000 at 12:58:00 (EDT) Ok, so here's tha lowdown on today. Tina and I arrived to find Val sitting with Mikey, and he was obviously psyched to see us all. Things were cool for a bit; Cathy and Stephanie got Tha Dee into his chair, ready to take a spin outside on a blustery atumnal day. Val and I got Mikey down to floor two, and he started crying for no apparent reason, suddenly wanting to not go outside. It passed after a while, and we got him back upstairs. That's the way it's been lately; Mikey is hyper-sensitive, and his emotions tend to fluxuate like the proverbial roller coaster. After we got back upstairs he was fine again, and Tina and I left. Now, here is where things get really interesting. Val stayed on for a few hours, during which time (this is where Val picks it up) Mikey's roomate's wife came in. Val told him to say hello, which has always been mouthing hello. But was mouthing hello sufficient? Hells no! Mikey actually verbalized a distinct hello, in a voice somewhere between Mikey and Scooby Doo. Not a whisper, and not a yell, but a distinct conversational voice hello. Yes it happened, and it totally blew all in the room away! Val, Mikey and company all broke into tears of joy, Mikey finally hearing an actual word emenating in his own voice for the first time in seven months. The amazing thing is that we've heard hints at that oh-so-familiar voice before, but only when laughing like a maniac or in pain. This time, it just came out naturally, like so many times before seemingly without thought. It's not much right now, but it's obviously a quantum leap forward in the long recovery process. Mikey and Val discussed the moment for a good hour afterwards, and he fully understood what had happened, and the significance of the event. He's been mouthing so many words so often that it seemed only a matter of time before this happened. Now it has, and it's only up from here. All future visitors, I would encourage you to ask Mikey to say hello...not just mouth it, but say it. Damn, I'm speechless...unlike, for once, Mikey. Brian Westbye / Valerie Kahn-Dorato <brianwestbye@hotmail.com / vdorato@pacbell.net> Medford, MA USA - Thursday, September 21, 2000 at 21:50:24 (EDT) Allright, it's actually Westbye here, but I'm quoting Val from the note she left on the table tonight (damn this musicians life! nothing but notes on the table at the end of the day. anyway, here's val): "Had a good day with Mikey. Sandy came in around 6ish, and we watched some episodes of 'Get A Life'. Mikey kept mouthing words ALL the time, and also copied me when I'd pucker, stick my tounge out, etc. He seems to be soo close to talking that he seems frustrated by the spell board. So, he laughs whenver I try to get him to spell now; really get's goofy." Thanks, Val; for the update, and for being around for Mikey...and all of us. Valerie Kahn-Dorato <vdorato@pacbell.net> San Francisco, CA USA - Wednesday, September 20, 2000 at 00:56:52 (EDT) 9/18/2K: Looks like Tha Dee was a bit hungover from his raccous birthday shindig. Val and I arrived to find a giddy Mikey basking in Barker's Beauties (that's Bob Barker and The Price is Right), and lauging up a storm. He had some good gripping action with his left hand, and some decent movement with the right; good foot action as well. I got to work taking down some old cards and replacing them with some of the new birthday cards (thanks, everyone; Dee loves 'em all), then we sat down and shot the shite for a while. Mikey was a bit frustrated today, no doubt due to his realization that it's been over seven months, so we tried a bit of reverse psychology, a bit of tough love, and whatever else might've worked. It did, eventually. Mikey tends to wallow, but he always comes around. We got him in the wheelchair, and down to the sunndeck to soak in a priceless autumn day...with speech therapy from Meghan and, get this, a full fudgcicle! He wolfed the whole thing down, and did a great job swallowing. That's the good news; the bad news is that he's having a hard time using his letter board. Val seems to think that Dee may be frustrated taking such a dramatic step back in order to relearn a skill once taken for granted. That's certainly understandable! Time for a bit more tough love, and a return to room 406. Dee was really tired after the events of yesterday; can't push it too much. We ended up watching some Woody Allen ("Bananas"), and profusely enjoying the (literal) screams of laughter emenating from one Mikey Dee. It's been a while. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Tuesday, September 19, 2000 at 00:53:22 (EDT) 9-17-2K... HAPPY BIRTHDAY MIKEY DEE!!!! Today the Dee turned 38 whopping years old... and boy did we celebrate... It was a birthday to celebrate, one he almost didn't see.. but one he has come a long way to see. The 8th floor of Spaulding Rehab was filled with well wishers all bestowing their best upon Captain Mikey (now donning a fashionable eyepatch and pirate hat)... Emotions ran high for a while.. but alas, Mikey was happy to see his friends and share the time, downing a fudgicle like there was no other heavenly treat on earth... We really wore him out, but he admitted to having a good time getting tons of presents, new music to listen to, new movies to watch, new clothes to wear, new doo dads to play with and a whole lotta love which is the best present of all...and is what is gonna get him through all this... You may think you're getting old Dee, but we're glad you're 38....and here to celebrate it... tina, valerie and brian <tina@eink.com> medford, ma USA - Sunday, September 17, 2000 at 22:08:52 (EDT) 9/14/00: I found Mikey sitting in the hallway outside his room (new favorite spot) Thursday afternoon. He was sporting his new eye patch and a big smile crossed his face as I got closer and he realized I was someone he knew coming for a visit. He likes to spend time in the hall so he can watch the comings and goings of patients, staff and visitors (and get a HI MIKEY! from everyone too) and the nurses have set up their meds station there so they can chat with him throughout the day. Since it was a nice afternoon I thought maybe he'd want to go outside for a little bit or somewhere else but he wanted to stay put. I gave him a few more options; sunroom? activity room? your room? stay in hallway? Damn, if he didn't mouth the word HALLWAY clear as day! So I gave in for awhile. Eventually I cajoled him into letting me move him into the room so I could sit next to him by promising to clean it up a little. Once settled, Mikey sucked on a lollipop for awhile and then I went a got him an italian ice and he ate quite a few bites of that too. Good to see that Dee appetite coming back! We're anxious to get him on other soft foods soon but his swallow reflex is not quite ready yet. But soon it seems. We spent the rest of the visit working on communication. We practiced adding consonant starts to his laughing and crying sounds. Mikey is still really labile, a common post-stroke condition which means that he is frequently overcome by involuntary laughing and crying jags. Sometimes these are brought on by a true emotion or thought and sometimes it is just as involuntary as his muscle spasms. But they offer a glimpse at the Dee Voice that we miss so much. So he worked on adding an H to the laugh creating either HI or HA. He was able to do both, the HA HA's sounding more and more Jerry Lewis-like each time prompting me to follow it up with "Nice Laaaady." We also added a "WHA" to the cry to get "WHY." This was a little harder, emotionally and physically. He was mouthing the shape accurately but the pieces didn't connect as easily. We spent a long time working on different letter shapes and it was all very encouraging. He's working on tongue exercises too, since certain consonant sounds, DEE for instance, require the tongue placed firmly behind the top teeth. (Pretty complicated, this speaking stuff we all take for granted...) We also spelled a little. Mikey's eye patch has given him a little relief from the double vision and vertigo so he was willing to give the letterboard a go with me for the first time in months. First we just spelled out easy stuff like "Mikey" and "Eleanor" but then we tried a new thought which has always been much harder. It was slow going but we eventually came up with DEAL, CELL, FEEL. I think I got it. You'll escape one day Mikey, I'm sure of it. 9-13-2K - Found Mikey outside by the river with T-MAX today screaming their heads off. T-Max was teaching Mikey to form his laugh-scream into something tangible so they were working on "THE HORROR!! THE HORROR!!" and they were getting pretty close. I joined them only to have a bird crap on my arm which every one says is good luck but I can't see it as anything as an inconvenience of having birdie fecal matter splattered all over your arm. It made Mikey laugh though. We stayed outside a pretty long time while T-Max entertained us with great stories of his adventures in T-Max land until Mikey got tired and we wheeled him back up to his room. When we got him up there a surprise awaited him... his friend Drugless Douglas, who is filling in for his "ON THE TOWN" show Wednesday nights at WMFO (91.5 Tufts University Radio) was in his room. He was there to tell him that WMFO and Tufts had voted to rename Mikey's broadcast studio after him. It will now be known as "Studio DEE". Mikey was stunned. What a great honor for him since he has done so much for the radio station and for local music. We all left Mikey in the caring hands of Dr. Lang his acupuncturist who was putting Mikey in quite the relaxed state.. hopefully thinking happy thoughts and dreaming about when he can go back to Studio DEE where he belongs.... tina bugara <tina@eink.com> medford, ma USA - Wednesday, September 13, 2000 at 18:51:11 (EDT) 9.12.00 - Mikey was in the corridor when I arrived, hanging out with the nurses. "You loves da ladies, dontcha?" I asked, and got a nod and a laugh. He had his glasses on, so with his approval, I removed them and put on his eye patch. We made pirate faces (arrrrhgh!) back and forth; Mikey's facial control is getting better and better. He imitated me quite perfectly, and showed me several new mouth/lip movements that he could not have made earlier. Now if we can just get him to improve his breath control, we'll be able to hear that voice again. We did some lollipop tasting (butterscotch), and he did so well that I asked if he wanted a Popsicle. He nodded, so off we went to the cafeteria in search of a treat and some fresh air. When we got downstairs, a change seemed to come over him. He became very withdrawn, and complained of a chill. We went back in, and he refused the Popsicle, and said he was nauseous. I asked him if he was tired and ready for bed, and got a nod. Back in his room, Mikey was less responsive, and began to weep when I put on some music. I switched it to some jazz and sat with him, waiting for JC to come help him to bed. By the time JC arrived, Mikey was slumped against me in fatigue? Despair? Several times he began to weep, but choked it off with a shake of his head. Where are you, Mikey? What is this place that you go to? The pain of knowing that I cannot know is a torment. But I am sure what we feel is mild in comparison to what he feels. Hang in there, Mikey, and lean on us whenever you need to. 9-11-2K.... Brian and I stopped in to see the Dee today and he was in a melancholy mood of sorts. He was having shoulder spasms so Michelle was giving him an icepack on his shoulder. We wheeled him down to the sunroom where I have him a 50 cent manicure (no polish today he wasn't in the mood) and made him listen to my tirade on what is going to happen to the world when there is no more good rock and roll music anymore.. he was laughing up a storm... When he got sick of my tirade, we brought him back to his room to get him all comfy for his jevity jumpstart. All of a sudden he burst into tears. It took me 45 minutes to figure out why he was crying. I made him use his spelling board for the first time in weeks. It seems that he is upset about the possibility of having his room at home sublet. He was told about it a few weeks ago and has been upset and crying about something for the last few days that no one has been able to figure out why. Today I was really firm with him and made him spell out what was bothering him in between gasps of tears. It was heartwrenching and exhausting. Poor mikey. He has much more physically demanding things to worry about and he's worried about his bed, his stuff, his semblance of normalcy.. I told him not to worry about it.. that something will be worked out... and to focus on healing. The cool new development is that Mikey is now starting to mouth words. Saturday he mouthed the word "Bitch" at me cause he was angry cause I was making him go to the bbq. Today we were working on mouthing the letters of the alphabet. He was doing great with them. He can even mouth "HEY Laaaady" one of his favorite Jerry Lewis quotes... Now all we need is sound.... 9/11/2000 Greetings all! Spent a couple of hours with Mikey last Thursday and Ruby and I had a very good visit with him. One of Mikey's adorable nurses, Jessica, kept Ruby occupied with M's playdough while I hung out with the Dee. He was wiped out from the severe stomach cramping he had gone through the day before, but seemed much more comfortable, and in decent spirits even if a bit tuckered out. He was looking forward to seeing friends on Saturday - (about which there is probably already an update on this page!), and we hung out in the hallway mostly working on tongue movement, and vocalizing stuff with a yummy lollipop. Mikey's control was impressive - he was licking, closing his mouth, and swallowing - all in a pretty natural pattern, and his head movement was very good. He was more subdued than I've seen him in a while - perhaps because of medication - but also seemed more peaceful, hopeful, to me when I asked him questions about his emotional state (nodding yes to most inquiries about understanding the progress he has made, and having to patience and reserve to keep on plugging!!) He made a bunch of funny faces for Ruby and laughed when she kissed him a bunch of times. He was visited by many of the characters on the floor and it was (as always) incredible to see how loved and popular he is at Spaulding. Needless to say he will need a ton of support when he moves to a new place - the loss of these loving care-takers will be intense. But I am fully confident that Mikey's next "home" will be a place filled with folks who grow to adore him just like they have at Spaulding! As daunting as Mikey's journey towards recovery is - it's also inspiring beyond words to see him take each step, make each little small leap, towards movement/expressiveness, and ultimately, the communication of his internal process. Keep sending your positive vibes everyone! xoxox Linda V. Linda S. Viens <linda.viens@eudoramail.com> USA - Monday, September 11, 2000 at 09:12:11 (EDT) 9.10.00 - Yesterday Mikey escaped the confines of Spaulding to attend a small barbecue in his honor, in lovely Jamaica Plain. Throughout last week, Mikey had been looking forward to getting together with some close friends and vicariously enjoying some pork. However, by yesterday morning, he had changed his mind, and was refusing to go out. Thanks to careful ministrations from Nurse Michelle and the exhortations of Miss Tina, Mikey was bundled into his chair car and driven out to JP. I think his reluctance sprang from a variety of factors: the doubled vision and general vertigo he suffers from is made worse on car trips; anxiety about being far from the hospital (he's plenty sick of the place, but does feel safe there), and perhaps some "stage fright" over seeing some folks he hasn't seen in a while. As hard as it is for people to see Mikey "the way he is," just imagine how difficult it is for HIM. Anyway, as Mikey was wheeled into the green, shady backyard, cheers rose like smoke off the grill, and his face lit up with joy. All of the anxiety over the trip seemed to be worth it. He laughed uncontrollably at first, and then kept turning his head this way and that, eyes a-popping, trying to take in the sights of loved ones, the smells of pork, and the warm end-of-summer air. He was the happiest I've seen him in months. I slapped a couple of sea bands on his wrists (acupressure for motion sickness), and an eye patch for the double vision; we'll see if these measures can correct some of his discomfort. He enjoyed a Popsicle, biting the end right off and then slurping the rest down to the stick. We asked him throughout the day if he was tired (yes), and if he was ready to go back (no). In true Mikey fashion, he closed out the party, staying after the sun had gone down, now bundled up against the chill, and bore the inconveniences of his trip with dignity and strength. Before he left, I placed a small handful of grass in his fist. The kid was never a big outdoorsy type, but I thought it had been long enough since he'd gotten up close and personal with nature. It was a very good day, and we've got the Popsicle stains to prove it! 9-6-2K.... Mikey was feeling way icky today... He had his pump refilled with a stronger dose of his spasm medicine and it was making him nauseous, dizzy and just overally crappy. While I was there, he was having these horrible stomach cramps that were practically levitating him off the bed.. It was Linda Blair like... and then he would collapse all wiped out... It was horrible.. we hope its just his body getting used to the higher dose of the spasm meds (he was spasming like crazy today) and not the flu... that would just suck.. Poor Dee... he was trying to laugh through it all, making faces.... even feeling like butt.. UGH... tina bugara <tina@eink.com> medford, ma USA - Wednesday, September 06, 2000 at 18:45:43 (EDT) 9.3.00 - Mikey's still feeling crappy thanks to the infection. His temp seemed up, so I uncovered him, gave him a cold compress and read to him from a movie magazine. He was pretty sad today-the infection has exacerbated his post-stroke problems: pain, spasms, blurry vision and dizziness. The dizziness and blurry vision are unfortunate by-products of the brain injury, and we're keeping our fingers crossed about their subsiding. They are common complaints of many stroke survivors. Relief can be obtained through various adaptations (Mikey, in fact, has learned to alleviate some of his dizziness by cocking his head to one side), but so far there is no easy remedy. If you have any info on these kinds of symptoms, send it along! We appreciate anyone's experience with strokes, brain injuries, and related therapies. It's a rocky road for Mikey and his team-and an uncharted one at that. One of Mikey's greatest fears, confided to me today, is that people will forget about him. I told him that there was no chance of that happening! But please send him a little extra love, psychically, cyber-ally, and physically, if you can. By the way, here's an early heads up: Mikey's birthday is September 17th. 9.1.00 - Mikey was in the hall when I arrived. As I approached his chair, I heard a long, low farting sound. Having been his girlfriend for several years, I was of course not startled by this, not the way the many passersby in the corridor were. Apparently, Mikey's new toy remote control fart machine is the toast of the 4th floor. He controls the noises by pressing a switch with his foot. He's been shocking the old ladies and amusing the nurses with it for a few days now. This bodes very well for computer switch manipulations…I was eating a fudgsicle I'd bought downstairs, and I asked him if he wanted a taste. He nodded, stuck out his tongue, and then proceeded to eat about half of it, getting a nice chocolate goatee in the process. It was VERY exciting to see him want to eat, since he's been very reluctant to try anything orally (he's afraid of choking). It's good to see the old Mikey "You Gonna Eat That?" Dee coming back. M.A.Ricciardi <parkdale@mindspring.com> USA - Friday, September 01, 2000 at 20:22:35 (EDT) 8-31-2K... Got into see Mikey and Eleanor was there visiting... Mikey was getting put into his new super duper whamo wheels and wanted to go outside...Last night his friend Johnny Seamans (a.k.a. Johnny Poundcake) brought Mikey the most tremendous and perfect gift, a remote control fart machine... so we hid the loudspeaker under one of mikey's legs and as we were rolling him down the hall past all the nurses, we kept pressing the remote and letting them rip.. Mikey was beyond laughter. We met his friend Dean in the hallway who was on his way in to give Mikey one of his famous coiffures... We stood far away from Mikey and told Dean that Mikey was having a little gas today and just kept pressing the remote.. Dean was aghast.. I know, sophmoric humor, but boy did Mikey get some great laughs out of this contraption... We finally clued in everyone in on the joke and they just thought it was great.. You know Mikey just loves gaseous humor.. Good score Johnny Poundcake! So anywho, after his beauty treatment, Eleanor and I took him out into the beauteous sun to chat, try a bit of italian ice, and play with a little blue play dough... Mikey got tired in the fresh air and sunlight so we didn't get far, but we did get a lot of gossip in, which is what he needs sometimes.. just chatting and hanging on a summery afternoon.. His laugh is getting this great high pitched scream to it which is great and I love hearing it.. more and more of his voice coming back slowly.. I can't wait to hear more.. Keep on laughing Deedle!!! tina bugara <tina@eink.com> medford, ma USA - Thursday, August 31, 2000 at 21:50:28 (EDT) 8.29.00 - Mikey's infection still making him feel like butt…fever, back pain, general blahs. He was in bed today, going from joy (at my and Tina's respective arrivals) to tears (aching back and frustration). Still, he managed some funny faces and laughed at some of my better or less-bad jokes. I stopped in today on purpose: my students arrive tomorrow, and I was feeling a bit (okay a lot) apprehensive about it. Since Mikey's the bravest person I know, I asked him if he could spare a little of his bravery for me. He nodded weakly, and lifted his head up for a nose rub. I feel better now. Thanks, Mikey. M.A. Ricciardi <parkdale@mindspring.com> USA - Tuesday, August 29, 2000 at 19:30:13 (EDT) 8-26-2K.... A beautiful Saturday evening at City Hall Plaza in Boston underneath the stars is where you found Mikey tonite... amidst a bundle of people all watching 92.5's Riverfest... The Jayhawks played to a crowd that was just so happy to be there... as was Mikey.. not at first, but after a little coaxing, a little vomiting, a little joking around, Mikey, Rob (his favorite Chair Car Driver), Shireen, Jim Deluca (a friend from Connecticut) and I settled down like Rain and grooved through the whole damn set. We're very proud of Mikey that he made it through the whole Jayhawks performance, tapping his foot, grooving to the tunes, getting a little overwhelmed at times, but hey, good music does that to you... The kicker of the whole evening came as we were going back to the limo.... I turned around and three bagpipers were following us, so I asked them to seranade Mikey and boy, did they ever... they freaking seranaded us and marched us right to the car.. You should have seen the look on his face, it was something right out of a bugs bunny cartoon.. we have no idea where they came from (they were plenty tippled) and no idea where they went and no idea what they were wearing under their skirts but hey, I didn't ask... The look on Mikey's face was just totally amazing.. pure stun, pure warner brothers, pure shock.. totally worth every moment... aaah.. we gotta get him out more.... tina bugara <tina@eink.com> medford, ma USA - Sunday, August 27, 2000 at 00:45:08 (EDT) 8.25.00 - Mikey's shiny new wheelchair came today. It's bright blue (he picked out the color) with a extra lumbar support for his notoriously bad back, a new adjustable head rest that the Head Rest Gnomes hopefully won't be able to mangle, and a specially padded seat cushion for comfort. We slapped a few band stickers on to further customize it, so now it rocks as well as rolls. Heh. Sadly, today was PT aide Joyelle's last day. Mikey was very distraught (has been for a few days in anticipation), and they both cried a few buckets as she said good-bye. She and Mikey have a special bond; she's one of the few oases of comfort he's found in the hospital environment. We're all going to miss her, but she's promised to come back and visit a lot. Luckily for Mikey, he still has a thriving harem of caregivers who'll do anything to see his incredible smile and hear his laugh. Still, it's going to be rough for him, so everyone please send Mikey some psychic hugs…he needs 'em. Well, I'm always tardy getting my updates online but I'd be remiss if I didn't mention Mikey's "Adventures In Standing" which I witnessed yesterday. I stopped by Spaulding with Mick to hang with the Dee. When we got there he was still in bed. This gave him a chance to show off the incredible flexibility he has with his left foot. He can wiggle the toes and move the foot back and forth and up and down. Since he's usually up in his chair and wearing shoes when I see him I hadn't witnessed how much he's grown with that. Mikey seemed pretty tickled with it too, showing off for Mick. The two of them got into a pretty good game of "ugly faces" too. But the exciting news is that when Mikey's PT's came in to get him up they decided to get him up on his feet. After wrapping both legs tightly in zimmer splints and bandages they steadied him to keep him upright and encouraged him to lift his head on his own as Mick, Tina and I went into a chorus of Argent's "Hold Your Head Up!" (yeah...) Mikey managed to briefly hold his head up and keep his spine pretty straight. Just a start, but they were encouraged enough to agree to try it again with some leg braces. This doesn't mean Mikey's going to be running around any time soon, but it's a real confidence booster. We also spent some time hanging in the activity room playing with "theraputty" (we've got to get some playdough) and egging Mikey to do his impressions. Of course there's Marty but then we'd call out other big eyed celebs (Peter Lorre, Bette Davis...) and Mikey would make a face for each one. Ok, so they all looked pretty much alike but who's complaining. Mikey's got a new sound too. The Mikey Scream, which could be pretty alarming but is actually a recent addition to his laughter. It's big, it's loud, it's so good to hear many new sounds coming from him. Eleanor R. <eleanor@rockopera.com> USA - Thursday, August 24, 2000 at 15:13:58 (EDT) 8-22-2K... Got to see the Dee a bit early, so he was in bed. Megan, his speech therapist is out getting hitched so this dude named "Brooks" was in trying to make Mikey hit switches. Well, I guess I'm a distraction, cause when I got there, all hope was lost, besides the fact they had mikey using the urinal at the same time... Geez, I can't use a switch, goof with my friends and pee at the same time, so I left until Brooks was done and hopefully gave Mikey some privacy.. I can't pee if theres someone there either.. what's with these people.. don't they think? Anywho, came back to the room and Mikey was having one of his rollercoaster emotional days again... One minute laughing so hard he actually screamed at the top of his lungs (the best sound I have heard him make yet!) and next bawling hard. He said I make him sad (I don't mean to) cause I remind him of all the fun we had (but I don't even say anything)...I told him next time I visit, I'm wearing a bag over my head like the unknown comic that way I can be there and not remind him of anything except Chuck Barry and the old Gong Show episodes.. he liked that. He still has this icky infection (god knows what goes on there at night!) and he was really tired. He wanted to listed to Elton and I cut my visit short to go and do his laundry and let him nap before they yanked him up into his chair and gave him some pt. Some sad news today though.. his favorite CNA Joyelle is leaving on friday to take a job at Children's Hospital.. Mikey was very tearful as we all are but we wish her all the best of luck as she is one of the neatest, caring, loving, greatest, warmest people we have ever met on earth and we all love her very much. Good luck Joyelle.. we may kidnap you and you will always be part of our family... DONT LEAVE US!!!! WE LOVE YOU!!! tina bugara <tina@eink.com> medford, ma USA - Tuesday, August 22, 2000 at 20:25:27 (EDT) 8/21/00 Mikey's got a little infection right now, so he wasn't feeling too great today. We went up to the 8th floor conference room to look over the view, and I read to him from a stack of old Noises I'd unearthed last night. We had some laughs wonderi ng where some bands/people have gone, some of the shows/records/cd's we've reviewed, etc. He was pretty spasmy today (probably due to the infection), so I had the nurses put him to bed. He cracked them up with the Marty Feldman face, which they all lov e. I strung up some lovely sparkly star lights sent courtesy of Jen Collins in CA. Mikey liked them, and agreed that they will make his room a less spooky place at night. While we were listening to some Ben Folds Five, Mikey lifted his head and shoulders off the bed towards my face. "Are you trying to rub my nose?" I asked, and he nodded. I leaned down just a little, and he did it!! He lifted himself up a good four inches or so and bumped his nose against mine! He's getting stronger every day… P.S. As fall approaches, Team Dee's schedules are getting busier. If you know Mikey pretty well and would like to come visit, either regularly or whenever, please contact me! Sat in on another ATEK session with Mikey on Thurs. They're still trying out switches to find the best one for him and the best area of access. As we've mentioned here before, once he gets going with a movement it's hard for him to stop (stay or inhibit) the movement making successful use of any switching device still out of his grasp. This bums him out totally and sometimes during the session he'd just give up in frustration and refuse to cooperate. But we'd get him back on track by reminding him not only of the importance of the task but by reassuring him that he is making improvement. So, while it's still not happening for him, the increasing strength and control he has is evidence of continuing recovery. It seems that as Mikey regains a functional movement (head nods/shakes or shrugging for instance) he "overuses" the movement and it goes through a phase of spasticity. So while we thought Mikey was rassing us with contradictions there for awhile we've since realized he's just having trouble giving out the right signal. But we're not relying on eye signals anymore either, unless we want to see his Marty Feldmen. Mikey got a really nice email recently from a former locked-in patient who's practically fully recovered. It was heartening to read her thoughts to Mikey and to have someone else share their experiences of the vagueness of recovery and the loneliness of the journey. We can reassure and tell Mikey what we've read or heard about recovery experiences but we can't know what he's going through. Other survivors can, however, and their continued interest in Mikey and their words of encouragement has been wonderful. Two steps forward one step back it sometimes seems but, with patience, you'll eventually reach your destination. Eleanor R. USA - Friday, August 18, 2000 at 13:16:34 (EDT) 8-15-2K... We're typing live from Spaulding Rehab, room 426 today...but Mikey's really bumming today and Eleanor and I can't seem to bring him out of it. Mikey says "He's sick of all the crap of rehab wants to break out of this jail".. Tina says "we'l l Mikey, its better than the jail across the street" Mikey disagree's. Eleanor says to Mikey "Its quite ironic, isn't it, having this jail (i.e. Spaulding) across the street from the other jail (Some boston public lock up joint)". Mikey just sighs. Im elda the nurse, comes in with Mikey's evening cocktail of Jellied Jevity appetizer, Jevity au Jus Main Course, and Jevity Jello for Dessert. However, Mikey prefers to mix it all together and suck it through one G.I. tube... not even offering his guests a ny. Some host he is. Mikey's pretending to be underwhelmed by the new letterboard/icon communication cards I brought in, despite the nifty new fonts and color. But, seriously, he's tired and a little down today.But, we prevail and when all else fai ls ask Mikey to give us his Marty Feldman which manages to make us all laugh. Now Tina is torturing Mikey with accapella Barry Manilow. A few bars of Uncle FKR, though, gets a giggle out of him. Mikey says "Keep those emails, cards, letters, redhead ed amazon women, and chocolate poundcakes coming"... he's getting bored with the decor of his room and needs some new paraphenelia. Mikey, Eleanor and Tina signing off now.. Oh yeah, the poundcake is for eleanor and I.... we're hungry.... So's Mikey.. J evity just doesn't have that same kick like back in the old days.... tina bugara and eleanor ramsay <tina@eink.com and eleanor@rockopera.com> medford, ma USA - Tuesday, August 15, 2000 at 17:11:54 (EDT) 8.14.00 - Mikey was up and alert when I arrived today, watching the traffic go by in the corridor. He is very frustrated by his inability to communicate (eye trouble barring spelling, speech still not quite there yet); I would imagine that communicatin g your feelings through acknowledging or rejecting others' questions gets old quickly. Soon after I arrived, Cat showed up, armed with plenty of radioland gossip and a stack of bad musician jokes. Mikey enjoyed the jokes, and while laughing, was able to p roduce his first word (again): "uh-huh." When he's laughing, the air is moving through his throat across his vocal cords in a way that makes it easier for him to vocalize. He was able to repeat the word a few more times, though not in the presence of Jess ica, CNA extraordinaire. It seems that Dee doesn't perform too well on command; too much pressure and he tenses up. The nodding has become a bit spasmodic. It seems that when Mikey repeats a motion too often, it becomes a spasm when the muscles are overta xed. We've seen it before with the shrugging, and the head shaking-a lot of Mikey's negative answers have been just that-spasms, not head shakes. He squeezed my hand repeatedly with the right previously immobile hand: it's waking up! I tested his eye resp onses by blocking on then the other, but he said neither one of them was stronger than the other. I'll try it again, though; sometimes we gotta ask the same question more than once, on more than one visit to get a clear answer. Mikey and Cat made faces at one another for a while, and when she told him that there were certain unnamed labels interested in a certain unnamed Boston band (don't want to blow any possible deals here, so I won't mention who), he gave the thumbs up to one label over another, which Cat vowed to pass along. Even at Spaulding, the Dee is still advising musicians. M.A. Ricciardi <parkdale@mindspring.com> USA - Monday, August 14, 2000 at 18:53:32 (EDT) 8-12-2K....Homesickness abounds around Mikey today... My second attempt to kill the birds with wonder bread failed miserably again as Mikey fakes me out. I arrive in his room to find the stench of the stroke ward unbearable and Dee uncontrollably upse t. I pop on his sunglasses, grab the wonder bread and get him out of his room as fast as I can... but its a little chilly out and really breezy and Mikey doesn't want to be outside, so he pretends to need to use the facilities... I marathon him back up t o his room, yell for his nurse and he laughs at me.... psyche... he just wanted to sit in his room and be depressed... he just couldn't make up his mind about anything except crying and wanting to come home. I can't imagine not being in my own bed, surro unded by my stuff for almost 6 months. It was a day for many hugs for Mikey... anyone who came into the room gave Mikey a hug.... even visitors for the guy in the next bed. Nothing could console him today... not my dumb jokes, not the movies I taped him last night (American Beauty and The Green Mile), not the CD's someone sent him from San Francisco, not the promise of taking him to the Jayhawks on the RIGHT day - the 26th, not even asking him if he wanted to take a day trip home soon (he said he would be too upset right now.. he wants out of the hospital.. who can blame him!).., not even a visit from Smudgie (he said he's too sad to see her)... I wish I could pick him up and shake the sadness out of him like a big salt shaker... He's doing so well.. to day he was showing me the great movement that he has in his left hand, practically moving all his fingers and the great thumb movement and he was gripping my hand tightly with his right hand...and he makes these great facial expressions... his favorite is this great expression of Marty Feldman.. Everyone who reads this needs to close their eyes for a sec, and send Mikey a happy thought, 'cause he really needs it today... How come I am always the one who has to write all the sad stuff.... Someone pass the prozac please... thanks. tina bugara <tina@eink.com> medford, ma USA - Saturday, August 12, 2000 at 21:31:58 (EDT) 8-11-2K A beautiful day outside, but poor Mikey didn't get to experience it... I stopped by the local Store 2-4 and snagged a loaf of wonder bread in hopes of bringing Mikey outside to feed the squab and crow that inhabit the Charles around Spaulding, but when I got there, everyone was putting Mikey back into bed. It seems his spasms were back and the doctors were going to refill his magic hockey puck pump. We waited for the magic potion to come and Dr. Wizard came with his computer and syringe and amazingly refilled Mikey's pump with his anti-spasmotic medicine. Then with a magnetic wand hooked up to a computer (I am not kidding), he adjusted the dose of Mikey's medication. Mary, Mikey and I waited for the medication to take hold, but alas, remem bering from the first implementation, it'll probably take all night to get through to his nervous system and relieve the major spasms. He was feeling better by the time we left though. I do hope he's better tomorrow... If its not raining, we're kidnappi ng him and taking him over to a free concert to see the Jayhawks at Government Center tomorrow afternoon. The major event of the day was Mikey's utterance of "uh huh" and "uh nah" for yes and no and he repeatedly did this three times... Mary and I fell o ver.. He did it while laughing but it was a definate uh huh and uh nah... beautiful sounds for a beautiful re-start of speech... keep going Dee!!!! Keep on uttering!!!! tina bugara <tina@eink.com> medford, ma USA - Friday, August 11, 2000 at 20:37:18 (EDT) 8.6.00 The last few days have been a mixed bag of sorts for Mikey. After last week's ATEK session, Mikey began operating a nurse call button. For the first time, he was able to summon a nurse when he needed something, which is a monumental step towards his independence. Tired but in good spirits, we had a very pleasant visit on Thursday. He tried once again to spell out what he was thinking about for me, but his vision troubles make this nearly impossible. He says that print sort of jumps around when h e tries to read. I'm hoping that this can be dealt with by an ophthalmology consult, and also by resting what must be overtaxed muscles (he spent so much time/energy using eye movements to communicate). On Friday, Mikey was pretty sad. His favorite n urse, Michelle, had gone on vacation and he's feeling a little lost without her. I'm looking into some legal way to adopt her so that Mikey can keep her. They are a good team. Mikey was too distraught even for Elton, so I kept the music off and we were so on joined by Rick, Jessica, Linda and Calvin. At first Mikey didn't want to visit, but he was unable to resist their charms and they soon had him laughing his head off. He also tried to kick Rick in the butt, although admittedly, Rick was asking for it. < br> Today I took Mikey outside to catch the breeze. Even though he wasn't in a very perky mood (neither of us was), he said he was keeping up the fight to recovery. And lifted his left leg up in the air to show me how high he could do it. He's been having some trouble with his wheelchair headrest; it looks like Uri Geller's been coming in at night and bending it all to heck. We were eventually persuaded to go back in due to some sketchy, Hitchcockian-looking pigeons seated on the patio wall. We retired to 426 to watch the Stooges lampoon Hitler in "They Stooge to Conga." I was pleased that he wanted to watch a movie; it's been a while since he's shown interest in doing that, due to either eye trouble or depression. Keepin on keepin on… M.A. Ricciardi <parkdale@mindspring.com> USA - Sunday, August 06, 2000 at 21:31:33 (EDT) I met Mikey yesterday at 10am sharp for a big session with the ATEK (Assistive Technology) department at Spaulding. The main purpose of this meeting was to test his functional movement and to find the optimum points of access for Mikey to begin consistent communication. Although it was a bit early for him he was up and ready to rock. We tested a variety of switches and access points. First we worked with a head activated switch which will enable him to turn his stereo on and off. At this point the purpose of this switch is mainly to encourage him to work on his neck strength and posture rather than for his convenience. It's important for us, his friends and those following his progress here, to remember that, while Mikey has been showing consistent improvement in many areas, head control, left thumb and finger movement, left leg control, he is not yet at the stage where these movements are consistent, strong or completely under his control. They will get stronger in time but it's still a long and exhausting uphill battle. However yesterday was definitely a good day and he was able to trigger the radio, laughing when whatever the noise metal MBR was playing came on. Especially when it invoked a shocked "You like this stuff?" from his therapists. After we'd exhausted him with that we started working with some thumb switches eventually finding one that he had great success with. His thumb control is increasing and he's even beginning to be able to bend it a bit. This switch can be integrated with his computer when he's ready. This switch would be hooked up to the nurse callbox and, for the first time since the stroke, Mikey would be able to summon a nurse when he needs to. Mary visited him later in the day and reported that he was, indeed, using it by the afternoon. This is a major breakthrough since, up to this point, any communication or switching devices which have been tried have been purely for exercise and testing purposes. This is the first real world application of a device. Go Mikey! We worked a little with his trackball too. Right now, though, we're just getting him used to the feel of it. He practiced moving the ball with his thumb and held on to it for a long time. Our hope is that eventually he'll get enough dexterity to use it successfully since he'd be able to type much quicker with it than a single switching device. If that wasn't enough we also tried a laser pointing device attached to a hat. We held up pages with pictures on them and asked him to point out each item with the laser by moving his head. He did this with 100% accuracy which was just great to watch. We may start having him use a device like this with his letterboard since it would be a much quicker way to spell. Unfortunately, though, Mikey has been having a lot of trouble reading text because, we believe, his eye muscles have been compromised by the stroke damage. This has made spelling very difficult for him which has been extremely frustrating. He'll be getting an eye consult soon and we hope that by finding the right scale for the letters he'll begin to have more success spelling and reading with much less eyestrain. Pictures are easier for him to decipher so we may begin by having him use icons instead of phrases to communicate with. All in all, it was a great session, and Mikey is definitely ready for the new challenges. Eleanor R. <eleanor@rockopera.com> USA - Friday, August 04, 2000 at 12:25:56 (EDT) Tina brought in more Elton and with my two, I programmed a 5 CD Eltonfest on the stereo. Lately, Mikey's been nixing the music; seems it's kind of painful to listen to local music these days, knowing he's not out in the thick of it. Hoping that Mikey's lifelong devotion to Elton John (which beats even his devotion to Jerry Lewis, and quite possibly, even Peter Sellers) might get the nod, I ignored Mikey's shrug of indifference and hit Play. At first Mikey was like, "No, I don't like it take it off" but halfway through "Captain Fantastic" he was bopping his head, tapping his feet, and smiling. He really was transported. It was so great. If anybody's got a spare copy ( on CD) of "Caribou" I know a certain someone who would enjoy it. M.A. Ricciardi <parkdale@mindspring.com> USA - Wednesday, August 02, 2000 at 21:53:02 (EDT) 7/28/2K: From the brain and fingers of Valerie Kahn-Dorato... Just Talked to my mom for a long time --- she was alone with Mike for a few hours today and he was very responsive, lots of laughs some crying (not too bad) head nodding,thumb up etc and lots of smiles!! (I can't wait to see all this!!!)and she told me so mething else that I hadn't heard about so not sure if he's been doing this--when it was quiet and he seemed sleepy--she'd go sit in the chair in the corner and a few minutes later he would make a noise or two--she'd go stand by him and then he'd get quiet ---he did this same thing several times in the course of a couple of hours--always when she was away from him and never when she was right in front of him--she definitely thought it was to get her attention--VERY purposeful!! have you seen this? Thought you may want to put this into an update!! Yes I would want to put this into an update, Val, and thanks. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Saturday, July 29, 2000 at 00:05:46 (EDT) Addendum to today... The purpose of today's big meeting was to discuss how far Mikey has come in progress and what to do next in terms of long term care for Mikey. Mikey has been at Spaulding for about 5 months and has made more progress than anyone c ould have ever imagined. More progress is expected in all areas... movement, swallowing (they are going to give him a swallowing test so different consistencies of food can be tested to see how difficult it would be for Mikey to swallow them - we already know he aced sherbert), he is gaining some strength in his right hand which he hasn't had before.. and we are working on every aspect of communication from computer assisted to breathing. Basically according to Spaulding, he is quite stable and ready to move on to the next facet of his care which would be a skilled nursing/long term care rehabilitation facility. Mikey will be at Spaulding for as long as it takes us to find him the appropriate facility (one that allows him the proper amount of physical, occupational, speech,and recreational (thats us - his burgeoning amount of friends) therapy and isn't a depressing environment. He needs to get the proper nursing care and treat him with dignity (like everyone at Spaulding has).. it will be hard to find a facility as top notch as Spaulding, but we will look hard and long before we let him go anywhere without a semblance of its standards of care.. If anyone has any suggestions, please let us know.. We are new at this..... Mikey wants ultimately to come h ome, this is just another train stop on the way... a place to buy a bagel and a magazine, to wait for another train...... tina bugara <tina@eink.com> medford, ma USA - Thursday, July 27, 2000 at 20:07:32 (EDT) 7.27.99 - This is just a quick update on what happened today; hopefully Tina will post in more detail about our big meeting today. Mikey, Tina, Allan, and I met with Dr. Stein, his #1 nurse the fabulous Michelle, the awesome ladies of OT/PT, Stephanie and Kathy, and the wonderful Megan of Speech Therapy. Also a caseworker whose name I've forgotten. Anyhoo, the point of the meeting was to update everyone on Mikey's progress, which, from all Spaulding departments, was judged to be phenomenal considering the severity of his stroke. Dr. Stein discussed the intense emotions that Mikey's been showing, and told us that many stroke patients display this kind of lability; their ability to control the display of emotion is impaired, and often the feelings are no t as intense as their appearance is. In other words, when Mikey is mildly amused, he may not be able to stop a belly laugh; conversely, a fleeting sad thought may bring a rush of tears. Each dept reported new gains in mobility and strength (PT reported that Mikey's bearing his body weight on his legs pretty well for short periods now, which reminded me of the first time Mikey was put on his feet months ago, and how terrified he was). The se breakthroughs made us all proud, although at one point Mikey wept a little…most likely the "leaps and bounds" we were all discussing sound devastatingly tiny to him, in his conception of his former life. But we soldier on, and soon Mikey was laughing a nd nodding at Tina's jokes. When we got back to the room, we were pleasantly surprised to find Valerie's mom waiting for us! Mikey was very happy to see her, though he did cry a little. That was okay, though, because she had plenty of hugs for him. Everybody needs Mom sometimes. Later, Eleanor showed up with Mikey's new trackball mouse, which he worked at until he practically fell asleep in the chair. It was a big day for our boy. Greetings all! Spent the afternoon with Mikey yesterday, and it was so wonderful to see him!! I had not seen him in 2 weeks and I was blown away by the changes. When I walked in Mikey was having therapy and he burst into the biggest smile and laughed and laughed in his special way, I was beside myself with happiness to see him so responsive, we just smiled and smiled at each other, and Mikey was turning his head slightly and nodding and it was just amazing. I did not realize he had transitioned seemi ngly completely from the eye blinks(for yes and no) to nodding yes and no and shrugging to show indifference so I was awed. We kept working with the thumb switch after the therapist left, and he was moving his thumb up and down pretty well but then got p ooped, understandably. After this rush of being psyched, then Mikey got really really sad and it was intense, and yeah, it's the drugs but you can tell it's also waves and waves of genuine emotion that just seem to rush up and thru him. We had been looki ng into each others eyes and I was commenting on all the changes I was seeing and he just lost it, sobbing and sobbing, both of us crying and we had an intense poignant conversation with lots of head nodding about his frustration, his inner anguish, and t he long hard struggle to be well and whole. It was very cathartic as all good cries are, and I told Mikey there ain't nothing any of us wouldn't do, to be able to snap our fingers and make him well, but since we can't we just all have to hang tight and k eep supporting him in this process, this long grueling process. He then seemed to perk up quite a bit, and acknowledged that the hope for recovery is truly astonishingly GOOD, that these changes are hard won and incremental, but they are there! And what will be six months from now, THREE months from now? We went outside for a long time, and watched the gray clouds, and listened to the birds, and laughed at silly tourists trying to fish off the pier. Ended the day quietly, and when I left for home Mary was there and they were grooving to some Taj Mahal, Mikey's leg bopping irrepressibly to the blues..you just can't fight the feelin'! Linda V. Linda Viens <linda.viens@eudoramail.com> USA - Wednesday, July 26, 2000 at 11:39:50 (EDT) 7-24-2K... Ok... Exactly 5 months, 13 days, 16.5 hours and hell knows how many minutes after Mikey Dee's last mouth ingested swallowed voluntarily food, Mikey Dee had his first taste of real (ok, semi real) food today... two half spoonfuls of raspberr y sherbert. He opened his mouth let that stuff slide right in, swished it around with his toungue, and promptly swallowed.. a feat for a king who was told it was never gonna happen. Although this was done under the strict supervision of suction in one h and and totally behind the doctors back... MIKEY DID IT!!!! AND HE WANTED MORE... the nurse told us not to overdo it the first time, cause we want to see if it stays down for more than a few hours... and if so, onto better and bigger things.... MASHED PO TATOES, ICE CREAM.... PUREED PORKSICKLES... Mikey has been giving up on his indifference and saying NO to everything and laughing afterwards lately.... Today he declared that he doesn't want to eat real food anymore (ha.. if that doesn't make you laugh... YOU need a shrink) and that he will be penning the first Jevity cookbook (for those of you who don't know, Jevity is that nutritious sloth that people who get tube fed eat.. sort of like ensure).. He would like the assistance of Julia Child to assist wit h his "100 Quick and Easy Recipies for Jevity" and "Cocktails for Jevity" books.. on sale soon at your local rehab center... On to mushier and thicker foods for Mikey... yee ha! Also, Eleanor was in today to show Mikey this nifty trackball mouse that he can operate with just two fingers... He needs to practice stretching out his hand more before he can use it but it is just the perfect size for him. He was in such a great mood today... We watched some more Tom Green... He said he hates Tom Green but he was laughing so hard he could hardly catch his breath.... Drugs are weird... Go figure.... Anyone have a recipie for pork sherbert???? tina bugara <tina@eink.com> medford, ma USA - Monday, July 24, 2000 at 21:40:47 (EDT) Just an addendum to today's update: If you have CD's or Videotapes or other goodies that you would like to pass along to Mikey here are the addresses that you can send them to: Mikey Dee c/o MAR : 41 Parkdale Street, Somerville, MA 02143. Please indicate if you need the videotape(s) back. or Mikey Dee c/o TAB : 12 Metcalf Street, Medford, MA 02155 Thanks! Mikey needs his paws on all the new music he can get.. you know how he has to keep up on the scene.. and he's this close to reviewing... so get those cd's in there... tina bugara <tina@eink.com> medford, ma USA - Sunday, July 23, 2000 at 22:23:59 (EDT) 7.23 - Mikey was in pretty good spirits today. It's tough to tell sometimes, since the drugs he's on make him a little loopy sometimes, and of course, he can't verbalize what's going through his head at any given moment, unless he's willing to spell, a nd he wasn't. I read him some emails that he'd received, but it won't be long before he's reading and responding to his email on his own. He's still not too receptive to the idea of new visitors right now, although he did allow Dylan, a very cute Welsh Co rgi to come into his room. He enjoyed petting his big ears. Dylan's ears, not Mikey's. I asked Mikey to squeeze my hand with his right hand, which he couldn't do before. He indicated that he couldn't do it, but then when I tried to take my hand out of his , his fingers curled around mine and wouldn't let go, which made him laugh like a maniac. He agreed with my comparison of him to Inspector Dreyfus (Herbert Lom of the old Pink Panther movies): "every day, in every way, he's getting better and better." He nixed a movie, but selected 5 cds for his changer, which wasn't easy, since besides a few can't-hear-em-enoughs (Ben Folds Five and Elton, to name two), he's getting mighty sick of the cds he's got in his room now. We bopped along to some Papas Fritas; Mi key swung his head from side to side in an imitation of me. Hint to all bands out there: if you've got a new cd, send it along! We all know how the Dee loves those free cds. M.A. Ricciardi <parkdale@mindspring> USA - Sunday, July 23, 2000 at 18:13:47 (EDT) 7/22/2K...Frustrating catharsis today, or maybe just frustration...or maybe catharsis...hard to tell anymore. Cat made the trek up from Hyannis today, and she and Joyelle were stretching Mikey out when Tina and I arrived. He was in moderate spirits a t the time, but still fairly unresponsive, and not really up for anything. Since the laundry situation was at a critical point, Tina made a trip over to the Galleria for some new duds, and Cat and I managed to drag Tha Dee out for a spin on the 2nd floor porch...in spite of the shrug of indifference kicking into overtime. We proceeded to settle in for some perfect weather and a round of e-mails to Mikey...inspirational stuff. I could see him absorbing it all, and I'd like to think that he's walking awa y (ok, poorly phrased, but you get the idea) knowing his impact on the scene and how loved he is. For the most part he just kind of sucked it in, but Mikey did crack up a few times, esp. with Julie's tales of her cat-piss woes and Lisa McCollgan's (Scrap ple) skank band updates. Tina returned, and we got back upstairs...time for some more tough love. Someone leaked the news that Mikey is soon to be moved from Spaulding to a long term rehab center, against all of our wishes (we were waiting until we foun d a suitable place), and he didn't take the news very well, spelling out "lied next???". Well, Dee, Tina certainly couldn't give an answer that she doesn't have (i.e., you're not going home yet, but to some as-of-yet unknown long-term facility), but he t hought that Tina had lied to him about coming home. She proceded with a tough-yet-firm talk, clearly stating that she didn't "lie" to him, but couldn't give a firm answer not knowing where he'd be going...and that he's not ready to go home.....yet. Mike y acknowledged this fact, and we left him to think it over...happily cracking up over a Tom Green video. Don't really know what to say about today...I can only hope that we can keep him focused on the task at hand. Just keep working on yourself dee...co uld always be worse. Just ask Keith Moon. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Saturday, July 22, 2000 at 22:42:51 (EDT) 7-22-2K... Brian Westbye <brianwestbye> medford, ma USA - Saturday, July 22, 2000 at 22:16:03 (EDT) 7. 19. 00 - I found Mikey watching Sesame Street this afternoon, laughing up a storm. Those Muppets kill us! He's been doing some vocalizing; when he coughs, you can really hear his voice. He said he wasn't doing it on purpose, I told him so what-pract ice is practice! Mikey needs to work on his swallowing; the saliva is getting stuck in his throat (that's the simplest way I can think to explain it) and that's making him cough quite a bit. Though the shrugging continues, he was pretty alert despite bein g on lots of meds, and he even managed to elbow me in the leg a bunch of times as I was leaning over his chair! I'd never seen him move his arm before (besides the shrugs), so I asked him to do it again, and again. Wow! We are very close to getting Mikey on a computer; all we really have to do is choose the right software package that addresses his needs (conversationally and mobility-wise). I also asked Mikey to practice moving his tongue around-you may remember when he first stuck it out, several weeks ago. It was tentative, but now he's a regular Gene Simmons. He's going to work on touching the roof of his mouth, which is a fundamental speech movement. I left him watching Woody Allen's "Sleeper," which had him in stitches. The good kind. On a side note, the nurses told me that they listened to some of Mikey's radio tapes this week, and it really moved them to hear his voice. Now they know what to listen for. Allright, I have to add a few dimes worth now after reading today's installment. I realize that the hit count is down a bit now that we're beyond the benefits and all, but to all of those still checking this site regularly, I ask that you all take a m oment to send along some positive vibes, either in person or on your own time. It's pretty devestating to read about Mikey's recent downswing in mood, and even harder to see it in person, trust me...we can get him out of it, though. Dee needs us all now , maybe more than ever...he's come so far and made so much progress; can't let him give up now. This applies to all of us, and I'm certainly preaching to myself now as well: DON'T GIVE UP. Thanks. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Tuesday, July 18, 2000 at 23:45:16 (EDT) 7-18-2K.... Thunderstorms sucked the vitality out of the air and the Dee today.. for I found him sitting in his chair just gazing out at the storm clouds... I asked him if he wanted to go for a stroll and he said no, asked him if he wanted to watch a v ideo and he said no, asked him if he wanted to nap and he said no, asked him if he wanted drugs and he said no... What do you want.. I asked and he shrugged... aaah.. back to the shrug of indifference...so we sat there, I chatted about the way exciting ev ents of the day (none - except for our cat smudgie meowing constantly, we think she's in mourning over the loss of her uterus one year ago this week we think).... and read him some trash from Rolling Stone magazine.. not even worth reading... so like I pu t in this Letters to Cleo video that he hasn't seen from his benefit shows (ok, I snagged it cause I wanted to watch it and like he had like a pile of stuff to watch anyway) and plopped it in the vcr.. Man, he starts bawling... I'm like "Dee, man, whats t he matter, I thought you liked letters to cleo"... he nods "yes"... I'm like "does music make you sad?" He's like "yes"... I'm like are you giving up on music? He's like "yes".. I'm like "over my dead body you are... do you realize that even sitting in h ere recuperating, the power you have over the music scene in this town?" Blank stare.... "Bands are falling each over each over to do stuff for you, people you don't even know are like logging into this website to see how you are doing.. nuns and mormons in utah are praying for you... and you're giving up??? When you get out of here you have a Musicians trust fund to run, bands to promote and a website to run with cd reviews that need to get done, and thats not even the half of it... You've brought toge ther so many people, not only musicians .. all because of your love for music and your charming self. You have powers that you don't even know you have more far reaching than this town.. more far reaching than just the music scene, but that is where it s tarted...and that is where you belong....don't throw it away just because you are sad right now... sadness is transient... You are not giving up Music... if you are, I'm selling all your cds".. That pissed him off royally... I don't think he'll give up music now.... I left watching the Letters to Cleo video actually enjoying it and not crying... I think the nurses are starting to think I am a witch... but I hugged Mikey ten times before I left and he wasn't mad.... tina bugara <tina@eink.com> medford, ma USA - Tuesday, July 18, 2000 at 20:48:20 (EDT) 7-16-2K.... Sunday found Dee outside sunning himself with his friends Darryl and Mark. Brought along more of his posse, Roberta, Pete Sutton, Shireen and Myself and a bottle of sunscreen and just spent some time hanging out in the garbage and diesel s cented air of the Charles River. Dee seemed in great spirits today even requesting that I bring him some raspberry sherbert on my next venture in. We were also trying to figure out where to go on his next big field trip out. Afraid of rusting his wheel chair, he nixed a shower at the foxy lady, and bungee jumping was definately out of the question... he did consider the arboretium and possibly anything that didn't mean transportation via the 93 expressway due to all the potholes (too vomitous)... All our chattering wore him out so we brought him in and let him nap.. I guess either he's really tired or we're really boring or both... oh well. No spasms though!!!! YEEE HAAA! tina bugara <tina@eink.com> medford, ma USA - Sunday, July 16, 2000 at 19:39:48 (EDT) 7.13.00 - Just to add my own two cents to Brian's posting, let me say that it was truly beautiful to see just how many people were elated at the sight of Mikey at the Hatch Shell concert. To see him sitting there in his wheelchair, cap and sunglasses o n like some kind of rock-n-roll FDR, as dozens of people looked on shyly, waiting for the proper moment to approach The Dee and welcome him back to the scene (even if he's still only visiting)…it really brought a lump to my throat, and so it does again as I write this. Mikey has always brought so much joy to others, due to his own irrepressible spirit and love of life (and music), and even if he wasn't standing front and center, air-drumming his heart out, he still restored a little normalcy to a scene th at is substantially less without him. Although his light has dimmed a bit lately, he still managed to gladden the hearts of so many people there last night, just by his presence. Maybe if we all could spare a little of our own light and send it Mikey's wa y… M.A. Ricciardi <parkdale@mindspring.com> USA - Friday, July 14, 2000 at 16:33:32 (EDT) It's a start. After all these months, weeks, days, hours, minutes, seconds, and seeming eternities, Mikey finally left the grounds of a hospital tonight. The occasion: The Sheila Divine at the Hatch Shell. A glorious night for a road trip, if I do s ay so my damn self (and if one accepts the mile-odd distance from Spaulding rehab to the 'Shell as constituting a road trip). Mikey was practicing that oh-so-convenient shrug of indiference, and seemed a bit apprehensive about the outing; too much too soo n? Too many people to deal with? Well, Dee wasn't talking (ha ha), but he had no say in the matter: we were going, damnit! The van picked up Dee, Tina, MAR, nurse Joyelle, and myself at 5-ish, and our righteously cool driver Rob took great pride in prov ing his status as a master Boston driver on the way. Thanks to 'Sheilas manager Michael Creamer, our entourage was treated to some prime real estate up front, but we were careful to protect our Dee and his privacy, opting for a spot just off stage right and a circle around his wheelchair. Mikey was definately overwhelmed; sometimes smiling, sometimes verge of tears, but fully aware of his favorite band. In the middle of "Hum", bassist Jim Gilbert came down the front stairs, and did his Sammy Sosa pound -the-heart-and-point salute to Mikey, and I could see him beaming; a great moment. Alas the set ended, and logic would dictate that we bring the patient back, but when asked if he wanted to go back, Mikey shook his head "nyet!"...he wanted to take a spin , but to where? Rob suggested Castle Island, and we were off, with an envigorating summer breeze (Seals & Croft reference) wafting through the windows. We made it a quick trip, as Dee was obviously getting exhausted, but an important milestone was succe sfully passed today. The process reminds me a lot of that "You are here" sign at the mall...we started out in Sears, we've made it almost to the foodcourt, and we're ever working towards the Circuit City on the other side. We'll make it eventually, or g o down with the ship. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Friday, July 14, 2000 at 00:21:31 (EDT) 7.1200 - Mikey was in better spirits today. He has a fresh new haircut (a bit short if I do say so, but easier to care for), and is keeping up with his new gains in mobility. It's very reassuring to see Mikey nod for yes, and shake his head for no; alm ost like everything's normal. These little gains are what we must celebrate. In addition, Mikey's been lifting his left leg up, as well as his left shoulder. His facial mobility continues to improve; he's making faces up a storm now, and entertaining the nurses. I left him watching "Shakespeare In Love," which I remember him telling me I HAD to see; which I will when he's done with it. (Thanks, Kristin!) Mikey's practicing all of his new moves often, which is just what he needs to do. His continued physic al effort in the face of psychic grief is nothing short of inspirational to me. Thanks, Mikey...again. M.A. Ricciardi <parkdale@mindspring.com> USA - Wednesday, July 12, 2000 at 20:11:59 (EDT) 7-11-2K... Tough love for a tuesday was the theme for Mikey today... He's figured out that he can shrug his shoulder for indifference and that is the stance that he has been taking on everything. Now that the spasms have basically been eradicated, Mik ey has had time to ponder his physical state and knowing the neurotic guy Mikey is, he is dwelling on every little inch of non movement, every word of non verbalization, every thought of non conveyance. I went in to his room today with Smudgie in one han d and the wrath of god in the other. Mikey has been refusing therapy, refusing to get out of bed, refusing to even get up. All of us can see where he is coming from. Sure, we'd be in his state of mind if we were in his situation... but when the poor me 's get you going... someone's gotta smack you over the head with the virtual reality shovel and get you going again. Four days of the poor me's is enough. I think Mikey knew I was going to let him have it today. He wouldn't look me in the eye. I asked him what was up with this not getting out of bed crap... he shrugged.... I told him that shrugging was no longer and option in our conversation... then I asked him about his giving up on therapy crap... he shrugged... NOT an Option, I reminded.... I aske d him if he wanted to go on living this way in a Nursing Home not getting any more therapy... no response... I asked him if he wanted to give up therapy tomorrow because I was just the one to make it happen and I could have him moved in the next 5 minutes to a nursing home where he would spend the rest of his life the same exact way he is right now. He didn't like that. He didn't want that at all... He said that he is very frustrated and that he is angry at himself because the stroke happened to him. I explained to him that either with the surgery or without the surgery, he was destined to have this stroke and he was fortunate that he had it in a hospital under supervision and not somewhere where he couldn't get prompt medical attention. I asked hi m if he wanted to give up... He said sometimes (that was a yes and a no).. I told him that we all understand his frustration, but he has a lot of love all around him to help him through this... but he has to WANT to get better and instead of sitting there moping, that he should try and do things that he hasn't tried to do before... like move your pinky.... and damn it if he did... I made him do it again and again... I asked him if he had done it before and he said no... and then made him move his forefing er and he did it again and again... and I screamed... don't you realize what you just did mikey..... two more fingers and you can type email..... well that just blew him halfway across the street to the jail and got himself an inmate.... I left him exhaus ted from my big strong ukrainian temper and wiggling his new found finger movement practicing for all the up and coming cd reviews that he will be soon typing himself... By the way.. Smudgie just wanted to nap in the sun on his bed... she misses Mikey's s melly feet.. you figure it out... ick. PS: I'm really not a monster... they just bring me out for the reality slap... It does work sometimes... and then I kiss him on the head and not sleep for days because of the guilt.. but if it brings him out of his state...I'll try it. tina bugara <tina@eink.com> medford, ma USA - Tuesday, July 11, 2000 at 20:35:31 (EDT) Perhaps it is simply an intrinsic paradox of the human condition that the more we excel the greater our frustration with our limitations. This irony has been painfully evident during the past week. While on the one hand Mikey has been exciting his therapists, nurses and friends with some of his most impressive gains since his initial stroke he has, none-the-less, been equally withdrawn, uncommunicative and the brink of tears. All we can do is continue gently encourage him, allowing him his grief while not letting his frustration undermine his progress. Mikey may be down but he's not out. He's still working hard everyday and it shows. As his functional movement slowly improves he is being worked harder by both "Team Dee" and his therapists and, consequently, he's exhausted, frustrated at times and, perhaps, a bit overwhelmed by his new expectations. He's also being introduced to an enhanced communication system consisting of phrase cards which he can use to direct conversation and express basic needs. The cards use the same logic as the high-tech communication/access computer system he will also begin learning (and he's concurrently run through exercises designed to "wake up" his sleeping vocal chords). Plans are also underway for Mikey's first real outings off the Spaulding campus which is also both exciting and problematic. So please keep sending along your words of encouragement and, if you know Mikey, consider arranging a visit soon. Also reserve a few good vibes for the members of Mikey's recovery team who have been by his side since the horrible night of Feb. 7th and who have comforted him, fought for him, challenged him and supported him, often at the expense of their own emotional and physical needs. Such friends are indispensable and a reflection of Mikey's own supportive and kind personality. Eleanor R. USA - Monday, July 10, 2000 at 12:30:17 (EDT) 7.9.00 - Another sad day for Mikey. Despite some very impressive movement (hand squeezes, shoulder shrugs, leg lifts, etc.), he remains in a valley of frustration and sadness. His emotions are extremely labile, causing outbursts of laughter and tears. It's extremely difficult to watch a dear friend struggle, and sometimes the words of encouragement seem pitifully inadequate to relieve his suffering. But we will continue to offer them, and hope that Mikey may take strength and comfort from our hearts. I pray that Mikey realizes just how strong he is. M.A. Ricciardi <parkdale@mindspring.com> USA - Sunday, July 09, 2000 at 20:15:06 (EDT) 7.7.00 - For the past three days, Mikey has been very sad, brought about in part by the Fourth of July. Much time has passed since he went into the hospital for what was to be a routine procedure-now six months have passed, and Mikey is feeling a bit l ost. We experienced a similar low around Easter/Passover, but knowing what's bringing him down doesn't make it any easier to deal with. At times, in his frustration, he is pushing people away a bit, and drawing into himself. As Mikey makes his long, long trip home, he will have to pass through these shadows, and all we can do is to be caring, loving, and encouraging. Please put some extra energy into your good thoughts for Mikey-it's dark in that valley he's in right now, but I believe your warmth will be felt. M.A. Ricciardi <parkdale@mindspring.com> USA - Saturday, July 08, 2000 at 16:44:27 (EDT) 7.5.00 - Today was a mixed bag of sorts, emotionally. According to his nurse, Mikey was pretty down today, refused to get up for therapy, wasn't too communicative, etc. He is getting pretty frustrated at being in the hospital for such a long time. He b egan to cry shortly after I arrived, and when I got him to spell for me what he was thinking, he spelled I HAVE TO GET OUT OF HERE. So we cried together some, and I reiterated the need to be in a place where he can get the therapy he needs, etc: all the stuff he already knows, but we all need to hear it now and again. So, in a gentle nudge to those of you who know Mikey pretty well, if you'd like to visit him, please contact me so I can set it up for you, goddammit. On a positive note, Mikey is noddi ng/shaking his head to indicate yes/no these days. When he gets tired from that, I've been having him raise his thumb to indicate yes. We worked some more on facial muscles today: I make a crazy face, and he tries to copy it---he's getting pretty good at it! Also, I brought him some whistle lollipops, so we're working on getting some lip control so he can "play" them. He vowed to practice making crazy faces until my next visit. Guess I shoulda warned the nurses... 7-4-2K...Screetched over to Spaulding on a whim to whizz Mikey out to see the fireworks... I took a chance that he would be awake.. but alas.. got there and he was zonked to the gills. Apparently Mikey isn't feeling well today.. he has some congestion left over from his surgery and a headache so he was pretty well dosed up on tylenol and had a mist mask on while snoozing away. Tried to see if he wanted to wake up and go outside, but Mikey of the two hour snooze alarm wouldn't budge. So Brian and I d ecided to spend our fourth outside with the current inhabitants of Spaulding. I'll tell you. It was the most humbling experience I have ever had in my life. Here we are, standing amidst a row of wheelchairs, some people manueuvering their own, some acc ompanied by their friends and relatives, all bearing their own tragedies, all sitting there in silence watching fireworks celebrating independence and freedom... The irony of it all.... some of these people will never talk again, some will never walk agai n, some need assistance forever, all sitting there celebrating freedom and independence? I just watched their faces as they watched the fireworks.. wondering what they were thinking.. I felt really sad being there knowing that Mikey was upstairs, alone , asleep and wondering what his freedom and independence will be and what it will mean for all these people. Freedom to me, now means being able to just walk to my car, get in and come home... Mikey, some day, some day soon... tina bugara <tina@eink.com> medford, ma USA - Tuesday, July 04, 2000 at 23:05:36 (EDT) 7.2 - Found Mikey in bed today, tired but in good spirits. I had Chris and Deb Mascara with me again, and in no time they had Mikey laughing it up. His tone continues to be very good since the pump surgery, but the effects of the procedure itself are a bit much on the body (congestion due to anaesthesia, sore tummy muscles, etc.). However, the pain relief the pump brings is really helping in Mikey's recovery. On Friday, when I stretched his legs for him, he actually pushed them down straight BY HIMSELF ! He was really concentrating, and it paid off. Anyway, in today's visit, despite flying urine bottles and rabid dog puppets, Mikey had a real muscle breakthrough, in the form of a face duet. I've been making faces at Mikey since he woke up in Childr en's (we used to make silly faces at each other all the time), and today, he was making the faces right back at me! Sure, the muscles are a little weak, but he was really doing it, and his face lit up with the realization. It was so great. I'm also teachi ng him to throw the West Side gang sign with his good hand, because ya gotta represent. West Somerville in the house, y'all! M.A. Ricciardi <parkdale@mindspring.com> USA - Sunday, July 02, 2000 at 19:36:44 (EDT) 6/29/00: Mick (Mondo) and I spent a few hours with the "new and improved" Dee this afternoon. Although he's in some pain from Monday's surgery and they're still working adjusting the dosage for his anti-spasmodic pump, the improvement in his tone and mood was still really evident. We took Mikey out for a quick roll along the MBTA tracks near the Hospital 'cause he really wanted some fresh air. The best part was that when Mick started playing his guitar Mikey thumped out the rhythm with his left leg. Mick tried a couple classic rock rhythms and Mikey kept pretty good time to each one. I've seen him do this a little before but not so accurately or with such enthusiasm. We'll have you air drumming again soon Dee! He's also really getting consistent control of his thumb and can give a "thumbs up" with a bit of a flick of the wrist which is cool to see. He's getting closer to being able to start working with his computer. Obviously, that'll really open up his communication so we're all getting pretty excited. Keep it up Dee, you're a brave soul! Eleanor R. <eleanor@rockopera.com> USA - Thursday, June 29, 2000 at 23:28:18 (EDT) 6-28-2K.... Well, Mikey is now PUMPED.. although rumors of his death as reported on the cover of todays CMJ (College Music Journal) have been falsely reported, greatly exaggerated and overimagined... I'd like to report that Mikey is fine, resting comfo rtably back at Spaulding, happy to be surrounded by nurses and people who love him. Our little trip to Mass General was more than eye opening.. First, no one there laughs.. secondly, they told me the wrong room number for Mikey and I walked in on a man t aking all of his clothes off (he looked like Burl Ives) and then saw a nurse kinda like punching this old guy in the head cause he hit first... Mikey did have a great room with an exquisite view of boston...but the drugs and anesthesia kinda kept him from enjoying the view. His surgery went really really well. A hockey puck like pump that holds three months worth of medicine was implanted under his skin and has a tiny catheter that delivers constant metered doses of spasm medicine to his spine. He didn 't sleep well the night after surgery cause the pump didn't really kick in well, however, the next morning he wasn't spasming at all. It was an all out miracle. When his morning nurse came in to say goodbye and wish him good luck, I asked mikey to give her a big up, meaning with his eyes, but mikey blew us all away, by giving her a big thumbs up.. I fell over in tears.. When we got to spaulding, his night nurse, Jessica, asked him if he needed anything and for the first time ever, he shook his head "no" .. We flipped out and made him do it again and again.. and then I made him give her a thumbs up.. it was awesome, we were crying and hugging... all a wet sloppy mess... keep going mikey.. baby steps mean millions to us... PS: Never sleep on the floor in a hospital... it induces very strange dreams... eeek... tina bugara <tina@eink.com> medford, ma USA - Wednesday, June 28, 2000 at 10:57:51 (EDT) 6-23-2K... A sunny Friday afternoon found Mikey in bed spasming, as usual.. but as soon as I arrived, Dr. Lang, his acupuncturist arrived... she gave him some flower extract and within minutes he seemed relaxed... aah, the power of flower... His sister and a friend showed up with more fresh flowers and dirty jokes which seemed to permeate the air with their pungency... the air then seemed to fill with laughter and for the next four hours (count em four...) mikey was roaring so hard that he was crying.. in fact, most of the nurses were roaring at Shari and my antics (most of which we cannot repeat for censorship reasons... lets just say there was a lot of gastric aroma's floating about and pornographic teddy bears lurking as well)... Poor Mikey's sides are gonna be sore tommorrow.. but they say laughter is the best medicine.... He still seems hell bent on the fact that Livia Soprano's death is the funniest thing he has heard since the word "piss-flaps".. I don't know...a mind with a stroke is an amazing place to visit... talk about view askew... at least he still has his bowel-driven sick and twisted dee pork-lovin sense of humor... Thank God for that! tina bugara <tina@eink.com> medford, ma USA - Friday, June 23, 2000 at 21:48:23 (EDT) 6/22/00 Visited with Mikey for a few hours today. After making sure it was ok with him I watched as he worked with speech therapists Megan and Stephanie and aced each of his daily "tests"; jaw movement (opening/closing), eyes up/down yes's and no's (establishing response time to easy questions), eyes up/down spelling with the letterboard (with words given to him to spell for the "assister" to guess, again establishing response time) and, most exciting of all, working with the thumb switch. He was switching and staying (which is actually harder, once he gets going) with really great accuracy. It was great to see him do so well. I think he was showing off for his new therapist, or maybe me. But the quick session seemed to tire him so he wasn't into spelling out any sentences. Then a little O.T. to work out those damn spasms and into his chair for the day. We also had a few good laughs at Rod "Do you think I'm stinky" Stewart 's expense, which deteriorated even more when I brought up South Park... Despite the heat Mikey wanted to go out so we spent a little time on the deck continually retreating from the advancing sun. I also read him an interesting article from today's Globe about recent research into the brain's natural ability to to heal and regenerate cells after severe illness like stroke (despite a long-standing established opinion that it cannot). Mikey found it interesting and when I asked him if HE thought he'd get better he gave me a definite YES!, So do I Dee!.. so do I. Eleanor R. <eleanor@rockopera.com> USA - Thursday, June 22, 2000 at 21:08:10 (EDT) 6.21.00 - Mikey was in the hallway when I arrived today. He was pretty alert, though the eye movement communication system is wearing him out; his eyes are kinda darty, so sometimes it's difficult to get a clear yes/no from him. However, when I say, "D o Marty Feldman if you mean 'yes', he does a dead-on impression of ol' bug eyes. I took him to the sunroom on his floor, and we sat and watched the Big Dig waste some more tax dollars. As I was writing an update in his Log Book, I noticed him looking intently over my shoulder at the page. I asked him if he wanted to read the book, and he said yes. I placed the book on his lap, using Teddy as a bookrest, and watched him poring over the pages. I don't know if he'd ever read from it before. We started a t the first entry (4/7, I think) and read up to 5/9. He didn't read every entry, but he seemed absorbed by the notes we've been making on his journey. P.S. He squeezed my hand twice today! They were tentative squeezes, but I felt those hand muscles w orking. M.A. Ricciardi <parkdale@mindspring.com> USA - Wednesday, June 21, 2000 at 20:17:44 (EDT) 6-20-2K... Finally some good news...Mikey will be getting his spasm pump on Monday.. a field trip to Mass General next week hopefully will give Mikey the much needed relief from the constant painful spasms that is just wearing him down. Stopped by bri efly today and Mikey has another new roomie... didn't get to spend much time with him, but made him laugh reliving the famous "Livia Soprano" lines in mourning her death.. Livia was Mikey's favorite character on the Soprano's and he and I were wondering h ow they were going to kill her off next season... Stannah Stairmaster malfunction??... miswired wheelchair??..we'll just have to see... Also re-enacted with a stuffed kitty someone sent him, the day Mikey had a fit over Lily (our kitty) sticking her face in a bowl of tuna that Mikey was preparing for lunch... he laughed so loud the nurses thought I was killing him or something... Only with laughter deedle....only if it makes you forget the spasms.. for just a second (yeah, he seems to not spasm when he's laughing.. the brain is a weird organ...but yet so is the.. oh, never mind...) tina bugara <tina@eink.com> medford, ma USA - Tuesday, June 20, 2000 at 22:23:49 (EDT) Tears of pain, sorrow and joy today for Mikey, Tina and myself. We got to room 426 somewhere around 2, just as our Mikey was being stretched out and prepped for a spin in his chair. The zimmer splints held his legs firm against the still raging spasm s, and Mikey did his best to hold tight against the pain. Turned off the jazz station on his new stereo in favor of some Pixies (my loss and gain in the push of a button), but Dee seemed a bit restless, and a change of scenery was in order...off to the 8 th floor conference room. Took advantage of the big screen TV/VCR (overlooking the lovely splendor of a grey, murky 93/rt. 1/Charles) to throw in the 2nd season Sopranos tape. We got about half way thru the first episode when Mikey started sobbing...a h eartwrenching site, as can be imagined. I think that the setting was all-too-familiar for tha Dee, as the three of us used to partake in the Sopranos often...too much to take, considering his present location and condition. We shut off the tube and had a good long talk, reminding him again how far he's come and how much we all love him. Eventually he came around, and managed to spell out "I need to..." Couldn't get any more out of him, so we figured out that all Mikey wanted to do was hang with T and I. And so we did, all of us cranking on each other like old times. Tons o' lowbrow humor, biological emmissions, and rib rattlin' laughing as usual. Dee especially loved Tina's recolections of Mr. "6 bed-pan" Evangelista and the lovely scent he left beh ind. Speaking of which: I had a floater building up, and when I released it with a wave of the hand...Dee actually pulled his head away! And laughed like a drunken sailor. Yes, we'll never get into the Harvard Club, but I'll get lowbrow with Mikey Dee forever before sipping high tea with some stuffed shirt. Even suffering from locked-in syndrome, Mikey is way more fun than anyone I've ever known. We took Dee back downstairs, and left him to enjoy the silence and the rain. We can only hope that the s urgical team can get their collective asses into shape and get "the pump" into the spine...wonder if that pump is designed by Reebok? Never mind. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Sunday, June 18, 2000 at 21:17:06 (EDT) 6.16.00 - Arrived today just as Dr. Lang the acupuncturist was finishing up; Dee was relaxed, but still in some pain. Luckily, I had brought with me Chris and Deb Mascara, who immediately embarked on their campaign to get Mikey kicked out of the hospit al. Once we had dragged Mikey right down into the gutter, he was laughing and smiling; he even licked a lollipop for Chris, who said it was quite an erotic experience. Well, as you can imagine, the nurses kept a wide berth from room 426 while we were in a ttendance, knowing full well that shenanigans of the basest order were in full effect. Mikey wiggled his thumb, his toes, and stuck his tongue out at me repeatedly. He kept gazing at Chris, who provided some scene gossip as well as in incessant stream of innuendo that had the Dee laughing it up. Deb gave some therapeutic massage, especially on those grinding jaws, and we all had as good a time as four folks can have when one of them is in the state that Mikey's in. Okay, so it wasn't one of our wild Fris bee sessions in Powderhouse Park (you haven't lived 'til you've seen the Dee run for a Frisbee), but I'll bring 'em back, unless Security has something to say about it. M.A. Ricciardi <parkdale@mindspring.com> USA - Friday, June 16, 2000 at 19:47:41 (EDT) RETRACTION OF LAST NOTE'S TRIVIA ANSWER... After visiting the Green Acres website, the correct last name of Oliver and Lisa was not Kimball.. but Douglas... Hank Kimball was the airheaded neighbor... Oh well Dee.. you tried.. you are still my trivia g od... tina bugara <tina@eink.com> medford , ma USA - Thursday, June 15, 2000 at 21:43:58 (EDT) 6-15-2K.... Oh what a crumpled mess we be.. when we are in pain and soggy... that was Dee today.. We are all anxiously awaiting the implementation of "the pump" -- the device that will hopefully be Mikey's answer to all things spasm.. It is now up to t he scheduling of the surgeon which holds us all back and keeps Mikey crunched up and in agony and zoned out on medication that just plain sends him to the moon. When the procedure is scheduled, he will go on a two day field trip to Mass General (we hope they have good movies there) and then back to Spaulding for more communication work. We brought him a surprise today, a 5 cd changer boom box that works with the touch of a remote.. so once he gets his thumb in more working order, he can pick his own tun eage by himself... The best part of the visit was Dee helping Brian and I try and figure out what the last name of the married couple was on Green Acres.. we got as far as Oliver and Lisa.. and damn that Dee if he didn't spell out "K.. I... M..." and make us guess Kimball.. He is Mikey Dee.. trivia afficionado and knowledge vat of all things sitcom... God, don't you wish we could just switch the channel on all this pain?.... tina bugara <tina@eink.com> medford, ma USA - Thursday, June 15, 2000 at 21:40:02 (EDT) 6/14/2K. Webchickie here, I thought I'd post an update since I haven't for awhile. I visited Mikey yesterday and met Linda Viens and little Ruby there. Ruby was really well behaved and quite smitten with Mikey's stuffed kitty, she was too shy to sing him the alphabet song though, maybe next time. Mikey was sitting up in bed in Zen Master mode and shortly afterwards his therapists came in to stretch his arms, legs and back and get him into his wheelchair for the day. I've been exploring different communication software and access systems for Mikey and met with his speech therapists Megan and Shelly to discuss his progress toward gaining enough consistent function to operate a switch. As a result of pretty clever software and hardware out there, he could eventually do almost anything with a computer using a single switch -- hey, it works for Stephen Hawking. Right now though, because of the spasms and the side effects of the meds and pain, he's not yet able to count on the movement he has. He's been making real progress with his left thumb and head control lately though, and one can really see the improvement. Later we took him out on the deck for an hour of intermittent sunshine and I tested his eyes for range of motion (to test the idea of using an eyegaze system, it substitutes for a mouse). Poor guy ended up going cross-eyed trying but we'll keep working with him on eye exercises to see if we can help him gain more left-right peripheral movement. We've made a few updates to the website, most specifically we'd like to encourage more visitors to start coming by. Please read the information on the Spaulding Rehabilitation Hospital and Visiting Information page before planning a visit. Eleanor Ramsay <eleanor@rockopera.com> USA - Wednesday, June 14, 2000 at 16:48:48 (EDT) Regretably I was out on Saturday with a migrane, but our good friend Cat from Hyannis was cool enough to send me the following update: "Mikey seemed very focused during most of my visit. He was very warm when I first got there, but some cool towels too k care of it right away. He was very fast to show me his left thumb movement & even tapped his foot on the wheel chair! He picked out a watermelon dum-dum pop and worked his toung very hard for a while! Lots of big breaths, too. I was there from 4:30 unti l 6pm. His spasms seemed o-kay for a while, but by 5:30 he was in pain. Finally the nurse came in and gave him some stuff and put him to bed." Typical Dee, showing off for the ladies. Tonight, he was a bit more subdued, but nevertheless lowbrow as usual. Got there late, 'round 8-ish, and Mikey was sopping wet, in pain from the spasms, and grinding his teeth. Got his temp. down with some towels, and his spirits up with some bedpan humor (courtesy of his neighbor, Mr. Evangelista). Tina spent some time draped over the D ee's knees (had to use that one!), and eventually Mikey told her to get off. Couple of promising signs that I noticed tonight: Mikey seemed to have a bit more mouth control tonight, and was verbalizing to an extent, almost as if he were really trying to talk. Maybe I'm reading too much into it, but I was stoked to see it. He also had some good thumb and tootsie movement upon command. Hope. Damn, it's been four months. An eternity rushing past our eyes at the speed of sound (Gravel Pit reference, kin da). I'm heartened to see that our Mikey still has such a strong support group...now that the "novelty factor" has worn off. Says a lot about the guy, no? Yes it does. Off to tomorow, and another day of progress in imperceptable increments. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Tuesday, June 13, 2000 at 23:00:59 (EDT) 6.12.00 - I found Mikey today sitting in his chair having very bad spasm pain. He was sweaty and focused inward-the pain was making his legs tremble and his fists clench. He wanted to be put to bed, so I bugged the nursing staff until they got him down , which Immediately relieved some of the discomfort. His acupuncturist arrived and began a course of magnet therapy for pain, talking to Mikey in a soothing voice all the while. She also gave me some aromatherapy vials for him. I held each one to his nose , and asked him to choose the ones he liked (he liked Tea Tree, Chamomile, and Peppermint). So when you're visiting, especially if he seems tense or uncomfortable, put a lil' dab under his nose of one of those scents. They promote healthy breathing and re laxation. I left Mikey in the caring hands of Joey and the acupuncturist, breathing chamomile-scented dreams. M.A.Ricciardi <parkdale@mindspring.com> USA - Monday, June 12, 2000 at 19:13:34 (EDT) 6-8-2K... If only drugs could last forever... but in Mikey's case, the shot wore off quicker than Milli Vanilli's career (thank you Brian).. Mikey was in terrible spasms today and it just seemed that nothing helped except.. throwing my whole body acros s his legs and holding them down which I did for two solid hours until my butt fell asleep and my back spasmed... He seemed to relax with my body weight on his legs and actually watched Seinfeld.. but the minute I got up, the pain and wrenching spasms beg an again... believe me.. I'd quit my job to lay across your legs Mikey.. if it only brought you some longer relief.. The next step is to try a pump that will continuously give him medicine into his spine... Lets all cross our fingers for that working and keeping the spasms in check... Its been exactly 4 months today, since that horrible stroke...and there's still miles to go before we sleep...... tina bugara <tina@eink.com> medford, ma USA - Thursday, June 08, 2000 at 21:13:47 (EDT) 6.8.00 - Today's episode, entitled Better Living Through Chemistry, had Mikey and myself heading to MGH where Mikey was to receive a shot of Baclafin, an anti-spasmodic that's administered through the spine. After jouncing cozily over every pothole fro m Spaulding to MGH (thanks, Big Dig), we entered the Pain Management Clinic. Mikey was terrific. Despite intense pain, wracking spasms (he'd been off meds for a few days), and profuse sweating, he never complained a bit. The doctors placed him on his side to give him the shot, and I remained nose to nose with the Dee, for moral support and to keep from fainting at the sight of the needle, which I'm told was not that big. Yeah, right. We had to stay there for 6 hours while the Baclafin took effect. Though the results were not as dramatic as I'd hoped for, there was significant improvement in Mikey's tone (lessened rigidity of his muscles) and he said that he was in less pain than before. His doctor told me that a larger dosage would increase these effects, so if we are going ahead with the pump, (which would be inserted to deliver Mikey the drug consistently), I think we can expect to see a much more comfortable Dee, one who can focus on his continued therapy, instead of on incessant pain. Keep on praying, and while you're at it, thank God for drugs, if you don't already. M.A. Ricciardi <parkdale@mindspring.com> USA - Wednesday, June 07, 2000 at 16:13:47 (EDT) June 4, 2000 - I found Mikey in his room looking somewhat weary. His spasms were coming in longer-spaced intervals, but they seemed to be pretty intense. Still, after a few moments of my being there, he seemed to "wake up" (couldn't tell if he'd been d ozing or deep in thought when I arrived), and we listened to the radio that was on in the hall (classic hits from KISS to Foghat). I told him about this article that two people had referred to me (not including Tina-shows you how many people are following the Dee's story) about a new approach to "rewiring" the brain after a stroke; Mikey expressed much interest in seeing the story. He also showed me the increasing mobility he's getting in his left thumb-we're hoping that this will be the consistent motion Mikey needs to work his own computer! Keep your fingers (and your thumbs!) crossed! Oh, you knew I had to say that. M.A. Ricciardi <parkdale@mindspring.com> USA - Sunday, June 04, 2000 at 20:09:44 (EDT) 6-3-2K... Got into see Mikey this afternoon with hopes of getting him outside.. He was zonked, however. His friends Darryl and Mark were there and couldn't get him to wake up no matter how hard they tried. So they left him to his dreams. He was asle ep peacefully, when all of a sudden, his spasms came back full force jerking him awake. On Tuesday, he will go to Mass General Hospital to get a shot of spasm medication in his spine. The doctors are hoping that this will work so he wont have to orally take medication that will affect his cognitive abilities and not make him so zonked. If this procedure works, a catheter pump will be placed under Mikey's skin to deliver a constant flow of anti-spasmotic medication to his spine so hopefully the spasms c an be under more control in order for him to work on his speech and communication abilities. Its almost been four months.. Mikey has come a long, long way, but still has a long way to go... I hope he keeps his strength and willpower up... he's tired.. we 're all tired.. but we'll keep cheering you on Mikey, for as long as it takes. tina bugara <tina@eink.com> medford, ma USA - Sunday, June 04, 2000 at 16:27:59 (EDT) 5-30-2K... Val spent the day with Mikey... initially he was kinda spasmy and woozy and sleepy, but Val's vivaciousness snapped him out of it (she said he was slow waking up).. He had a bad nightmare and spasm filled night. The doctors upped his spasm meds and he seemed a bit more comfortable. Val has been working really hard with Mikey's spelling board and he was plowing thru words left and right for Val. When I got in, he seemed tired and curled up in a spasm. I asked if he wanted me to stretch hi s legs out for him (even though this causes him considerable pain, it actually relieves the pain after a point)... While holding his ankles to begin the stretch, he put all his might into stretching his own legs out and DID!... It took every ounce of ener gy and he collapsed afterwards in tired-ness but did it! It was great. Once is not enough though. I showed Val that Mikey can move his left shoulder to say "I don't know" and she was really impressed. One small shrug for Val, one giant stretch for Mik ey. Keep on stretching.... Valerie Kahn-Dorato and Tina Bugara <tina@eink.com> medford, ma USA - Tuesday, May 30, 2000 at 21:29:21 (EDT) 5-28-2K... Ok, I have to throw my two cents in about the River Rave... some girl came up to the Mikey Dee Benefit Trust booth, saw his picture and asked if he was Pee Wee Herman.... On another note.. Mikey was having spasms again today, but Smudg ie the cat came in to ease his pain. She calms him down cause she licks his fingers and nuzzles her head against his hand... She loves him.. and vice versa.. Valerie is visiting from San Francisco and witnessed the other day, Mikey spelling out to his spe ech therapist Megan, c-a-t-h-e-t-e-r.. and then p-i-s... and Valerie laughed and said to Mikey, are you trying to spell piss? Mikey lost it.. laughed for about 20 minutes, and had everyone in the room in stitches.. Now, every time you say the word piss or pissbucket to him, he totally cracks up.. even thru the spasms. If only piss could cure spasms... Mikey, we'd make you drink a gallon. Sunday's are quiet at spaulding, but Smudgie and Mikey's laughing seem to break thru the silence... tina bugara and valerie kahn-dorato <tina@eink> medford , ma USA - Sunday, May 28, 2000 at 21:59:39 (EDT) Allright, it's not a real recovery update, but we (Tina, Shireen, Mikey's boss Adam Lewis and I) were tyin' one on for tha Dee today at the WBCN River Rave at Foxboro, so it's all relevant. Highlights, lowlights, and sunlight abound...details any one? Ok, here's a few. We set up the table ('BCN made Mikey's trust one of the charities on the bill, thus graciously leaving us-eventually-with 1/6th of the gate. Hmm, $30-odd bucks a pop times 50,000...you do the math, cuz' I can't) full of raffle ticke ts, buttons, good karma ribbons, Reverse the Curse CD's, shirts, etc. at 8am; an ungodly hour for a Saturday morn', but we ain't doing it for ourselves. Trickles of business early on, not a few people asking "Who the hell is Mickey (sic) Dee?", and a fair amount of green piling up, especially for a predominantly Gap-kid crowd. A few of these kids managed to blow Shireen and I away with their bitch attitudes and ignorance ("Musicians are all rich, what do they need insurance for?" was o ne classic line I remember. Silly mortal), but for the most part the Gap crowd moved on quickly upon discovering that there were to be no freebies at the Mikey Dee Musicians Benefit Trust table. Real amusing lot, these kids in America. There were some rea l cool folks over the course of the day, however, including one girl who actually took my "spread the word!" advice to heart and brought some friends over later. Gracias, amigo. I guess the best way to leave it would be a peek at the wierd and w ild stuff (the Dee would want it that way, y'know). Like the shirtless guy who claimed that he couldn't buy a ribbon being shirtless, then bought the ribbon, and pinned it on HIMSELF (sic). Or the toothless drunk who, after dropping platitudes about what a great cause we were supporting, walked away wishing like hell that he had something that he could donate....then bought a beer not two minutes later. Or the Surfrider foundation booth next to ours, which featured as a donation recepticle a toilet. Or th e guys in the Bosstones, who donated three signed posters for the trust auction. But you're waiting for the final total, no? Somewhere around $400 American dollars, thank you all very much. Not bad, seeing how the majority of business was off of $2.00 raf fle tickets. It's all approved by the Dee. Hopefully he'll be at the next one, goofing on the procedings as usual...We'll leave the light on for ya. Brian Westbye <brianwestbye@hotmail.com> Medford, MA USA - Sunday, May 28, 2000 at 00:12:48 (EDT) 5.26.00 …I found Mikey outside today, contentedly sitting in the sun with Valerie, Eleanor and Mick. Mikey enjoyed the triple threat massage tactics of El, Val, and myself, as Mick kept up a constant strumming on the guitar, drifting in and out of song like the sun drifted in and out of clouds. Songs were sung, birds were watched, and jokes were made. Mikey even tapped his feet to some of the songs, and moved his tongue for a lollipop for a time. The difference in Mikey's muscle control is q uite remarkable. His responses are still delayed, but one can actually "see" the path from impulse to move a certain muscle, to muscle movement (albeit still somewhat tentative) itself. It's very encouraging to see. Mikey's using his spelling board quite a bit now, which allows him to communicate his own thoughts instead of responding to questions so much. After we returned to his room and we were alone, Mikey wanted to ask a question. He spelled out, WHEN CAN I GO HOME?, which of course ripped my heart out of my chest and shattered it on the floor. I explained to him that he needed to do some more Getting Better: improving his swallowing (next week, speech therapy starts working with soft foods with him), and building flexibility and mobility, etc. I asked him if he could keep on working to get there, and he responded with an emphatic eye-roll to say, YES. Well, alright. M.A. Ricciardi <parkdale@mindspring.com> USA - Saturday, May 27, 2000 at 12:56:24 (EDT) 5-24-2K...Greeted the Dee today while he was once again having spasms. He was actually in a good mood even though his body was crumpled up in a spasmic ball. He was very alert and I read him tons of email and he was quite amused at some of the me ssages sent to him. Mikey laughed a ton today at it seems like everything which made me think that he was either drugged up on something good or I really was funny for once.. He said he didn't have any drugs, so maybe drinking three hundred diet cokes in one day makes one amusing to others.. I don't know. I left him watching "Mystery Men" which he seemed to laugh at... but did give a big Mikey Dee thumbs down to "Mystery, Alaska" ... I guess hockey just isn't his bag....baby... Oh yeah , he really liked the story I told him of how I woke up today covered in cat vomit.. Mikey's sick sense of humor lives... and he is so himself when he laughs.. tina bugara <tina@eink.com> medford, ma USA - Wednesday, May 24, 2000 at 22:31:06 (EDT) 5-21-2K.... Didn't spend too much time with Mikey today, but did bring Smudgie, his favorite kitty, into see him. When I put her on his lap, he started to weep.. tears of joy we hope.. He was really glad to see her. She is such a good kitty that she just snuggled into his lap while we moved Mikey's hands over her to pet her. After they moved Mikey into bed for some physical and occupational therapy, Smudgie just picked a spot right next to Mikey's body and snuggled right up to him. Mikey's spirit s seemed good today, we got some good laughter out of him. Left him with four movies, Mystery Alaska, Mystery Men, Galaxy Quest and Detroit Rock City.. Dee thumbs up or thumbs down reviews forthcoming... stay tuned. tina bugara <tina@eink.com> medford, ma USA - Sunday, May 21, 2000 at 20:19:08 (EDT) Mikey Dee Updates March 6, 2000 through May 20, 2000
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