| Mikey's Recovery Update Archive 4
Back to archive page | to Archive 3 September 25 through December 28, 2000
4-2-01....Mikey has been sick all weekend. Apparently he has a form of pneumocistitis (basically an inflammation of the lung and lining)... Mikey's system got sick of the jevity jolt and saturday it decided to revolt with vomiting. He vomited so much that he accidentally breathed some of it which irritated his lung and made him very ill. So Mikey's been on oxygen for the past few days to assist his breathing and to dry up whatever he breathed in. Today when I got there to see him, he looked good. He didn't cough once in the four hours I spent with them, but apparently coughs more when he is laying down. We spent the afternoon working with the mirror, trying out new faces... I kept yelling out his friends names and he would laugh and think a minute and then try to interpret a face for them.. it was a riot. We also worked on his left arm moving. His hand was on a tray table on his wheelchair about 6 inches from my face. I enticed him to move his hand towards my face using his arm. It took him about 20 minutes, but he slowly millimetered his hand towards my face. It was an amazing feat. Unfortunately, he does not have the strength in his right arm to do this yet. But I made a bet with him that if he can move all the fingers in his right hand as well as his left hand within the next three months, I will tattoo his face on my butt. I promised. He laughed. He probably will purposely not do it so I won't have to do it.. but hey, A promise is a promise.... tina bugara <tbugara@hotmail.com> medford, ma USA - Monday, April 02, 2001 at 22:13:34 (EDT) 3.30.01 - I arrived on Friday to find Mikey up in his chair being pincushioned by a respiratory therapist checking his blood gases. Apparently, Mikey had had a sever coughing fit the night before, that caused him to vomit. The nurses were concerned that he had aspirated some of it, so he was given a mist mask, which had been replaced by a nose tube by Friday. The downside to Mikey's newfound swallowing abilities is that occasionally, a bit of saliva goes down "the wrong pipe" and he ends up coughing. What's encouraging is that despite the discomfort of this, Mikey continues to practice swallowing; it is a reflex that must be relearned in order for him to eat and talk again. Mikey was a bit subdued today. The coughing fit had disturbed his sleep, so he was tired; and he was also rather unhappy about the setback. The respiratory therapist was having trouble finding an artery, so she had to poke poor Mikey over and over again. He was brave despite obvious discomfort. He kept trying to look at the needle, which I know skeeves him out, so I tried my best to distract him. Once she was done, we made some faces in the mirror (including Mikey's famous "You gonna finish that?" face that he always made during dinner. We never had leftovers!). But he was tired and his responses were not as good as recent efforts on other days, so we gave it a rest and watched "Ferris Beuller" 'til bedtime. Sat 3/31/01: In the middle of distribution today, I stopped in to see Mikey. He was still in bed, receiving oxygen, and had a couple of bandages on his arms that looked like they were from recent injections. He was kinda stinky and sweaty and in need of a shave, so I washed his head, face and hands and used the electric shaver on him. Then I asked him about the mirror that everyone has been talking about. It was right where I expected it to be. I gave him the choice of the normal side or the enlarged reflection. He chose normal. He enjoyed making many different kinds of faces. After about 10 minutes he got tired of gazing at his face-making skills. I put the mirror away and showed him the new Noise. We went looked at all the photos, especially the centerfold. We stopped there and switched back to the mirror. This time we worked on shaping his mouth to specific sounds. He got tired more quickly this time so we went back to The Noise. I asked him if there was anything in it that he'd like to read. He chose the story on Cave In. I held the 'zine up to his face and watched his eyes. He would signal me with eyes up high when he was done with the page. I could tell that he didn't read the entire article--he'd look around and read sections of it. Then I asked him if he'd like to listen to some music or watch a video. He chose music. I randomly took about 10 CDs from his collection and let him chose one from the pile. He picked an Elliot Smith CD-R that was thrown together by someone. When I took the CD out of its jewel case with a red heart, I could see it was a gift from Valerie. I massaged his hands while we listened. Then it was time for me to get back to distribution. Mikey started crying. I stayed with him until he calmed down. T Max <tmaxnoise@aol.com> USA - Saturday, March 31, 2001 at 15:16:11 (EST) 3-29-01... Brought Mikey two movies to watch... I know he's pooped on thursdays with Naama's massages and Eleanor's tough spelling afternoons... so I popped in "Almost Famous" and watched it with him... Mikey gave it a shrug and a half... he liked "High Fidelity" better giving that a thumbs up and a nod... but the drama and highlight of my whole visit came while we were watching the second movie "Private Parts" (a favorite of Mikey and me)... Mikey's left arm had fallen off his pillow in his lap while he sat in the wheelchair... his nurses J.C. and Maria came in to put him into bed... I said "Mikey, do me a favor, try really hard to swing your arm back up as hard as you can.." Well, if that son of a gun didn't swing that left arm a quarter of the way up.. We all gasped.. and made him do it two more times.. this is the first Mikey forced voluntary movement of his whole arm we have witnessed yet. Now if we can get him to do this every day!!!!!! tina bugara <tbugara@hotmail.com> medford, ma USA - Thursday, March 29, 2001 at 20:41:25 (EST) Saw Mikey early evening yesterday, and wow, did he look great! His skin was clear, his eyes super green/hazel in the sunlight (how wonderful to have these longer days so that his room is bright for many more hours), his face rested and relaxed. He was watching a movie when I arrived but turned his head towards me and had a big crooked smile. I told him how good he looked, and then, remembering the "mirror" which I was dying to try anyway, pulled it out of his top drawer exclaiming, "well here, see for yourself buster!". And oh my god - watching his reaction was so so cool - he was so delighted to see himself, nodding yes when I said, don't you look good, damn! and smiling. Well, things just took off from there - the mirror rules!! He worked almost solidly for an HOUR, faces, tongue in and out, more faces, every combination of facial movement and he pushed harder than I've ever seen him push - because he could SEE the results of his huge effort! I had an epiphany about it after we had been working for about a half an hour - I realized - if he can't have the satisfaction of greater body movement, YET, then how enormously gratifying it must be to witness the complex movement of his facial muscles: to see MOVEMENT, that he is creating, and most importantly, controlling. It was incredible, he was so into it, so willing to work, and so truly gratified. He was doing so great I said - hey let's do some acting! So I would throw out emotions/moods: "act tough" (scrinched up lower lip, haughty expression, narrowed eyes, "act surprised": eyes wide, mouth wide, "act mad!": snarling mouth, dangerous eyes, "act happy": tilted head, sweet smile, and so on and so on...he even pulled off a perfect "act cool": snooty expression, narrow eyes and mouth, and we laughed hard. What a fantastic tool this is - I encourage anyone visiting (as I think Val mentioned)to pull it out and use it with him. He did a ton of tongue stuff too, as well as excellent forming of words, and working with THAT and breath combined means....spoken words!!! So right on Mikey - spring is coming - this is good - the ice is melting - and so are you..xox Linda Viens <linda.viens@eudoramail.com> USA - Thursday, March 29, 2001 at 15:42:29 (EST) (3/26/01) I just got back to S.F. Saturday night and wanted to write a bit about this past week with Mike. First off, the spelling board--he did FINALLY spell out other words for me (and Megan) the day after I wrote that last posting. Initially he would spell "Michelle" to every question (what is my husband's name--why, "Michelle," of course!). Then we asked Mike to just tell us what he wanted to say to Michelle and he spelled "Love," then we chatted about that for awhile and he got over it. He then spelled out most of "Val loves Jay" (Jay is Mike's middle name) followed by "Val Love." Over the weekend we had some more success, but then on Monday we were back to "Michelle" and I tried for a few days to no avail. Mike and I talked about his reluctance to spell for me and after much questioning he indicated that he only wanted me to work on getting him to actually speak again. I agreed that we would concentrate on that, but that he REALLY needs to work on spelling out real thoughts with everyone else and how important it is to communicate with the staff. He promised he would try. I know that sometimes Eleanor has made some good headway with spelling; Mike does tend to prefer to do different therapies with different people. As mentioned by Tina in an earlier post, Mike and I have been pursuing more intimate kinds of therapy. If anyone out there has any experience or information with this PLEASE contact me and share what you have discovered. I have found that Mike is able to do things that he hadn't before and has much more stamina when we're kissing than when we just do standard speech therapy exercises. I'm sure that's due somewhat to the newness and immediate gratification that he gets with this -- talking and eating are great motivators but he's had that carrot dangled in front of him for over a year now! If you know Mike fairly well and think you and he would feel comfortable with this contact me first and I'll tell you what to expect -- and yes Mike and I discussed this topic to death and he's very amenable to trying this with others. We also discovered another great aid for his mouth and tongue exercises: just hold up a mirror to Mike (thanks, Kristen, for bringing one in last week!) and ask him to do different things. Now that he can see what he's doing everything seems to have clicked in MUCH better. We've had fantastic success with this and of course everyone can do it and Mike is very into it (though he does get tired after maybe 5 to 10 minutes so we break a lot). I'm REALLY hopeful that this is gonna lead him to controlled speech much faster. Three mornings in a row he let out a very controlled "scream"--not a real loud one but better each day. I would tell him to take a deep breath and let it out at once--and he did! He and I were both thrilled by the results!!! Overall, I found Mike's mood to be remarkably optimistic. We talked a LOT about the future and how far he's come--he recognizes that he really has improved quite a bit over the past year or so--and he knows he needs to keep working very hard to make his life better. I always get a very consistent and strong "yes" whenever I ask him if he feels that he's going to get MUCH better. I find that incredibly hopeful. Mike's surprised a lot of doctors in the past year and I can't wait to see what he does next.
(3/24/01) My mom went into see Mike at around eleven and stayed a couple of hours--I had told her to try to incorporate the mirror with some speech therapy and she told me that Mike was VERY eager to do this--he made lots of faces and major tongue movements--she would ask him to make a pissed off face and he would then a smile and he would--also did the scream face and got some sustained (on command!) sounds out of him during the screaming face (this worked when he and I tried it on Thursday and Friday morning as well) they kept this up for around 5 to 10 minutes then would break for a bit. While Mike rested she would massage his hand and he was able to squeeze fairly hard and better yet he moved each of his fingers when she asked him to! They used the mirror a couple of more times and each time Mike would intensely look at himself making various faces--she thought he was very into this and they talked about how greatly this could impact his progress with regards to regaining speech etc. Also the last time my mom was in town was in late July and she was really impressed with how much Mike has progressed (considering the severity of the situation) and told him which hopefully encouraged him a bit more! So remember to use the mirror when you visit--it's amazing and anyone can do this!!
I'm taking the liberty of posting Kristen Gunst's last report on visiting Mikey, just to get some new perspectives on The Dee's recovery saga, as it unfolds this spring: (KG): I went into see Mikey on Saturday (3/17) with Anna. I made a note in the book about what we did, which was mostly hang out. I had run into Val on the way in and she said she had been working with Mike for hours and yep, he was pretty pooped. He did blow some bubbles with Anna which delighted I think both of them. And he did the slide whistle but not for 5 seconds. We brought some movies, a Ken Field CD and various "toys". He looked so tired that I suggested he rest (eyes upupup) and he selected "Bowfinger" with Steve Martin and Eddie Murphy. Anna and I both took turns sitting on the bed next to him and he started to fall asleep but didn't. I had a nurse come in at Mike's request, to adjust him. He was coughing a bit more than I remembered from before and there was a lot of saliva. Jessica came in and noticed it also. She seems very nice and also she made him "talk" to her by his eyes rather than just sit there. I heard her say something like "Mike, I know you can do better than that. Now tell me again." I was in the hall at the time. My gut is we stayed too long. For some reason, (kid's intuition?), Anna wanted to stay with him, so we did. Also, it is hard for me to judge his progress since he was so tired. I bought him a mirror that stands up and put it in the drawer. I don't know if I mentioned it to you before or not, but when Anna was having speech therapy they had her look in the mirror and watch the placement of her tongue. I showed Mike and explained and got a big eyes up, especially when I was poking my tongue around suggestively inside my mouth. I told him Many a Man has wanted to see that and he cracked up. So glad I could make him laugh. 3-22-01.... I'm doing some reporting for Val since she has been spending a ton of time with Mikey and hasn't been able to get to a computer this week. Mikey and Val have been supplementing his speech therapy exercises with a new kind of exercise (and he wants the world to know and so does Val).. It seems on a previous visit, Mikey bent his head down and planted one intense smooch on Val.. well.. that has progressed... Mikey and Val have these great, intense smooching sessions as part of Mikey's therapy. Mikey smooch is as smooth as it comes.. its normal, its sweet and he poses the offer to any daring gal out there (no guys please, sorry) to come on and get it. It has really improved his facial muscles, tongue movement and lip control. His speech therapists think its great.! Val has also made a monumental discovery with Mikey on this trip from cali as well... And this is something everyone can do... Kristin Gunst brought mikey a mirror.... Val held up the mirror to Mikey and a whole new world opened up for him.... He started making new faces, sticking his tongue out as far as we have ever seen him do it, mouthing real words, smiling, frowning, and just being amazed at his own being... He gets tired really quickly, but every so often if you hold the mirror up to him, you can ask him to mouth things, practice mouth movements, tongue movements... Its excellent therapy... Its amazing how quickly he makes the movements too. Today was a groggy day, so Dee and I watched movies. He was neck spasming, but stayed awake for the movies and seemed pretty content not to work too hard and have a day of just relaxing.. Val really works him hard when she is here and with tomorrow being her last day here I figured he needed a rest... 3.21.01 Not too much for me to report; I got in around 3ish to find Mikey up in the 8th floor conference room with Eleanor and Tina. Mikey was really tired; his eyes were at half mast, though they did pop open Jerry Lewis-like when I leaned in over his chair. He's always so emotive, even when tired, whenyou first arrive. It's like his personality just can't help squeaking out past this stroke blocker--and if I'm not mistaken, he's taken to mouthing, "Hi Cutie," his perennial greeting for me. So even without sound, he's still our Mikey. Anyway, Mikey had successfully spelled out MICHELLE across his letterboard--his talisman, as it were, a good luck sign of his fave nurse. He wanted to spell more (El had suggested he think of a message for Adam to read at the BMAs next month when he receives a special award), but we got as far as THANK YOU E...and ran outta gas. He was just too tired. And hungry, for it had been a while since his last Jevity smoothie. Eleanor and I took him back down to his room, where Mikey indicated that he wanted to get in bed. His neck had begun spasming pretty furiously, and efforts to control it through deep breathing were difficult for him. So I got him in bed, hooked up to the Jevity, and comfy. We began watching "Love and Death," and as always, Woody proved to be the cure for the spasms. Shall we say pistols at dawn? 3-15-01... It's been quite awhile since I've been out here to see Mike and he's made some nice progress. One thing I always notice tho is that we seem to need a few days to get in synch--we make by far the most progress in the last couple of days. I think I've been pushing him harder than ever before--thinking that he's just soooo damned close to a couple of big breakthroughs, so we've been doing all sorts of therapy (mostly speech related) and I do notice that his breath control has improved greatly! We used the slide whistle and he was able to blow for a few seconds --the length of time is very crucial--he needs about five seconds to get the vocal chords vibrating enough to produce sound--so that was very encouraging. Mike has demonstrated many times that he is very capable of producing loud and sustained noise, usually tho this happens only when he is upset--he has been crying a lot with me and in a way I encourage it, not only coz he needs this emotional release--but I get to hear his voice and he does a bit of "sob talking". He can get out things like "val help" and "val I wanna"--I push him to try for another word at that point--and I see him trying but so far I haven't been able to make out any other words. Meanwhile we all work on other modes of speech i.e. that new funky letter board with the sticky letters--I've had some success with this but lately he only wants to spell out the name of his favorite nurse! Mikey is GOOFY about this and as soon as I take out the letter board he starts cracking up! I made him promise to spell out anything other than Michelle--he nodded yes but we'll see... Today was a really busy day for Mike. He had a good long stretching session with the lovely Phoebe (from PT), followed up by and hour long massage, -- then Eleanor,Tina,Megan and I tried out some ideas to get Mikey more motivated in communicating with us by picking out letters via a makeshift Boggle game. He also played a couple of games of tic tac toe--kinda neat to engage Mike in that way--he's very bored with the standard therapy and needs fresh approaches to keep his mind active. Overall, Mike's mood still seems quite optimistic. His spirts remain high and he's maybe even more determined...the first couple of days we seemed a bit out of synch--during the last few trips tho I've noticed that he and I need a few days to really get going--of course, Mike always seems to make his biggest strides during the last couple of days I'm here--so hopefully, I'll be able to report some really tangible breakthrough next week. Maybe I should tell him I'm leaving a couple days earlier than I am so he can wow me earlier! As T Max put it ... "The latest Mikey Dee Singalong was the biggest suckcess yet (sic). We quadrupled the size of our audience, had one and 1/2 amplifiers on stage, and were treated to special performances by Damned Dirty Apes, Chris Mascara, and a rousing "Wipeout" drum solo (okay, it was actually on a tambourine) by Brett Milano. Thanks to all who participated." Yes, thanks to Singalong Crue regulars T, Carol, Natasha, Mick, Chris and Deb; Damned Dirty Apes' Stan and Moon; Judy Dombrowski, Derrick from the Allstonians (who gave Mikey a tape w/ a new song called "Mikey Dee"), Pete Sutton (who brought his bass this time); our fabulous audience (we made them sing too) Brett, Adam Lewis, Jen Trynin, Westbye, Tina, MAR, Steve, Johnny Poundcake and also a few Spaulding patients and friends (I hope I remembered everybody). If our audiences get any bigger we're gonna have to start rehearsing! The next Dee Singalong is April 14th - we'll be singing the entire Abbey Road album. Contact me or T Max for more info. I've been remiss in getting any updates on the board recently but rest assured Thursdays have remained big workout days for Mikey. He gets his massages from Naama and then he and I work on spelling, breathing and signaling exercises. Last week Mikey was subdued and having lots of signaling trouble so we didn't spell but he did read through a cartoon book by Scott Getchell and Mark Sandman that I brought in to show him. The handwritten text was big enough for him to read with ease and that is good news for lots of reasons. The week before he did spell a lot, although he still tires so easily and is still having trouble using this form of communication for anything but the briefest expressions. It seems that, as soon as he tries to find the words for a more complex thought he becomes overwhelmed. But, we're making progress. He also played a few games of tic-tac-toe with me and we decided that this week we'd try a scrabble like exercise where we'd choose random letters out of our bag of sticky letters and he would see how many words he can come up with. I've also been reading him excerpts from John J. Ratey's great new book "A User's Guide to the Brain." The author does a great job explaining a lot of very complex things about our brain's and how they work (and fail us) in an understandable and entertaining way. Mikey's been very interested and some of it seems to help explain some of what he's going through and why it's so difficult to gain back what the stroke took away. Well, Val's here this week so Mikey's gonna be busy, busy, busy! 3.13.01. Visited Mikey last Thursday after work, a warming blustery March, early evening, and found him giggling with Tina, already snug in his bed. It was early for him to be in bed but he was exhausted from a full day of massage, working his butt off with Eleanor, and visiting with friends. Tina had popped in "Shakespeare in Love" but we shut it off to have some quality time. Mikey was tired, but alert, and he showed me some of his progress in moving his right hand, which has been slower to come back. I rubbed his chest and shoulders and did my usual check in with his spirit. When asked if it's getting harder or easier to cope, he nodded yes to easier in some ways, because he knows the progress he is making. But he acknowledged it was harder in other ways because the closer he gets to certain kinds of recovery, especially speech, the more frustrating it is that it's not happening more quickly. There seems to be less anguish on a daily basis, and more calm and acceptance in Mikey now. Of course certain experiences trigger deep emotions; sadness, fury, etc., but he is truly committed to the work he has to do to find his way back. When I think about the enormity of that commitment, and the amount of energy it takes for him to keep trying, I am humbled beyond measure. Would that I could muster a tenth of the energy Mikey has to put out each day to apply to my own discipline for the tasks and aspirations at hand. You lead without realizing you lead Mikey, just like you always did, by example. Linda Viens <linda.viens@eudoramial.com> Somerville, MA USA - Tuesday, March 13, 2001 at 10:21:12 (EST) 3-12-01.... Yesterday was another Mikey Dee Sing-a-long Sunday at Spaulding Rehab.... the 8th floor was once again rockin' with the fab sounds of a mix of Boston's finest musicians. Mikey, of course, was the center of attention, with T-Max as the master of ceremonies leading his choir thru a motley mix of oldies, indies and everything in-between. Even some of Spaulding's patients turned out for the tunes... Mikey was a thumb and a foot tapping... AAAhh progress.... Thanks to everyone who came by... You all rock... Tonite...Valerie and I paid Mikey a visit quite late after she came in from her flight from San Francisco. Mikey had just gotten his nighttime sandman visit in liquid form and was getting ready to saw some logs when Val woke him up.. He was quite glad to see her. I had brought in a few videos that Mikey had on his bookshelf at home. One was marked "Kake with the Dee"... I asked him what this was and he shrugged, so I popped it in his VCR. It turned out to be a half hour interview with Mikey about how it is to be a local DJ... He went crazy... He laughed so hard and then he cried and laugh-cried... All the nurses on the floor came rushing into the room to watch the tape... this was the first time they got to see Mikey before the stroke. Val held his hand... I had to leave the room. Tomorrow the speech therapists will watch the tape and replay it for Mikey and hope he can repeat the patterns of his speech... I pray that it works.
3.6.01 – Mikey had just gone back to bed when I arrived; a good place to be on such a snowy, blowy, nasty day. I gave Mikey the blow by blow on the fabled Nor’easter, and though he wrinkled his nose a bit at my description, I couldn’t help but to detect a faint glint in his eye, a desire to be able to experience firsthand the weather we’ve all been complaining about. This notwithstanding the fact that the Dee hates winter, and has even been known to shake a futile fist at the skies, beret pulled down over his ears, and to scream, “ENOUGH ALREADY!!! I CAN’T TAKE IT ANYMORE!!! WINTER SUCKS!!!!” We’d all like to hear that scream, just as much as Mikey would like to be outside, living his life, and experiencing all of those petty frustrations and piss-offs that we overlook (or not) on a daily basis. Mikey was a bit hot, so I put some cold cloths on his forehead, and we went through a cycle of breathing exercises with his CD. His exhalation is becoming more controlled and forceful, and will, in time, lead him back to speech. After the CD, I went through his videos to find one he hasn’t seen 47 times. Came up with “Little Voice,” which went into the VCR. If you have any videotapes around of classics, comedies, or recent releases (the kid’s got a LOT of catching up to do), please let a member of Mikey’s Team know, and we’d be happy to come pick them up. Like to visit the Dee yourself? Yeah, I know, he’s been in the hospital for so long, and you’ve MEANT to get down there, but life is busy and you never really liked hospitals and you’re not sure how to act around him, and what if he needs something and you can’t figure out what it is, and it’s been so long that you really feel like a jerk for not visiting, and… Bottom Line: If you are a friend of Mikey’s, he would LOVE to see you. That’s it. All you have to do is contact me: parkdale@mindspring.com, and I will set up a visit for you, either with a Team member, or by yourself if you’d rather. I have a FAQ sheet with plenty of info on it about visiting, and if you have more questions, I can call you and “walk you through” a visit with Mikey. Tina had come by yesterday with a new bookshelf to stack all of Mikey’s movies and cd’s on, and had brought 3 “classic” comedy videos: SNL, Airplane, and Nat’l Lampoon’s Vacation. I asked Mikey if he’d ever seen a grown man naked. He shook his head. Surely the choice was and obvious one; I popped in “Airplane.” And don’t call me Shirley. Once Mikey was nestled into his jammies and Shireen and I had snuggled in beside him, it was Movie Time. Mikey had picked "Topsy Turvy"- a 1999 fave of his, but then changed his mind in favor of some Bugs Bunny Classics. Mikey never tires of Daffy Duck and was even making the most hilarious faces to the Bugs Bunny Operetta "Whats Up Doc".. We all agreed that Elmer J. Fudd looks like his friend Joey in about 30 years.. I'm hunting for more rabbit looking for the "Barber of Seville" on tape for Mikey so if you have any good leads, email. Speaking of good leads, if anyone is interested in playing in this year's for the "Benefit of Mr. Dee", please contact Adam Lewis at the Planetary Group (adam@planetarygroup.com) 617-451-0444. He is booking bands now for the event. Last year's benefit was a tremendous success and the proceeds go to an awesome cause: to assist artists and musicians who have catastrophic events in their lives. Lets keep the tradition going! Thanks! We also worked on finger exercises today. Mikey is getting quite good at moving his fingers on both is left and right hands on command. He has to be reminded to keep on practicing it though so I put a sign on his tray table to remind him. Hopefully, he can rebuild those connections so he can type his own email. I told him that he needs to move those fingers so he can pick his own nose... that made him move them even more. Slowly, the movement is coming back. I left Mikey in his room with his new roommate Matt (who is 40 with a brain tumor) and they were watching "Duck Soup". It amazes me how Mikey's roommates seem to really attach themselves to Mikey and worry about him without even hearing him utter a word. It reassures my belief in human compassion... even though these patients are so sick themselves, they always end up worrying about Mikey even when they are at Spaulding to recover from their own illnesses. They champion for Mikey, watch over him, joke with him, worry that he his in pain, cheer him on.. its a pretty amazing thing to watch. Today, I'd brought some photos, and I asked Mikey if we could try a little experiment. Though tired, he assented-ever the trouper. I showed him a picture of our (had been his and mine) cat hiding in a shopping bag, as is her wont, and said, do you know who this is? He laughed and nodded. He then proceeded to spell P U D D I N, which was his nickname for her. Score on memory, processing, and expression fronts! Next, I showed him a picture of Linda's little bumpkin. Mikey spelled R U B Y. Yay again!! I then asked Mikey to spell my name. He quickly spelled out C U T I E. His nickname for me. This was of course, followed by a brief spell of weeping, although this time it was me. What made this even more exciting was that Mikey was very distinctly mouthing the letters as he selected them, and was mouthing "no" each time he shook his head. Mikey and I made a pact: by Summer 2001, Mikey Dee will be talking again. You heard it (literally!) here first. The next Second Sunday thing is March 11th. Touch base with me, T Max or anyone on the "team" if you want to be part of it. If you've been meaning to see Mikey and you haven't yet, or haven't been by in a while, please consider a visit soon also. His recent gains with communication and improved breathing has made him more up to seeing people than perhaps in the past and visits with different people can also provide him with new opportunities to show off his improved functional movement and beginnings of some verbal skills and a chance to catch up on the world outside of Spaulding rehab. So today was a pretty mellow day; Dee was tuckered out from being up all day, so we got him in bed. He was upf ro some bubble blowing (got a few good ones off), and did an admir able job of vocalizing: "wow" came through in an audible whisper, on demand, many times. I kinda screamed the first time he said it, so surprised was I at the strength of his vocalization. We're getting there! Yay! To feed the movie jones, we put "The Madness of King George" into the vcr. Mikey and I saw this at the Capitol Theatre when it came out, so it is a favorite of ours. The film took on a new resonance for me, in the way that the king's illness causes some of the people around him to treat him as though he is someone else, not realizing that he is the same person, though not "himself." This is the conundrum of Mikey these days-he is the same person, feels the same, thinks the same, acts the same (with obvious limitations). But the stroke has im posed upon us all a veil of unreality, of "otherness" that really, we need not perceive. Mikey is our Mikey, plain and simple. So here, one year later, Mikey was beginning work on his follow-up message. A few Spaulding distractions and some 'bouts of laughter later, though, he was losing focus. He did get out EVE DUFAY -- probably EVERY DAY -- Eve Dufay? who's she? More laughter. It's great to have Mikey spelling again. It's still slow, primarily it seems because maintaining his focus on the letter he wants and his signaling, and the timing of the signaling no matter which method we choose, is like trying to climb a mountain would be for any of us, exhausting. Mikey hasn't really been too enthusiastic about communicating by spelling. He did more of it shortly after arriving at Spaulding than he did later, when he was actually physically improving. This is partly because the yes/no confirmations, especially when his face, shoulder and and thumb came to life were a quicker, more natural way of communicating. Then, as his eyesight failed him due to the strabismus symptoms and the eyestrain of all that early up/down eyes communication he lost his ability to read and focus on words at all. He was so frustrated and scared about what was happening that we just put the whole idea aside for awhile. Mikey's eyes, while still compromised, are not bothering him as much as they were and a few months ago he started being able to read headlines and large print again. So we started spelling again. Still, most of what he came up with was garbled nonsense, more frustration. At last we hit upon the idea of laying out the letters as he chose them so he could see the words forming. Yesterday as I laid out the letters for MIKEY DEE I couldn't help feeling a rush of excitement or a lump in my throat. There it was, right in front of him, his name and he said it. Yesterday, being Thursday, was also massage day. Naama worked on Mikey's chi, producing the inevitable giggles and sobs. She asked him direct questions about his sensations. How does it feel? Like your limbs are asleep? (Yes.) Does it tingle? (Yes/no/shrug) Sometimes? (Yes). Mikey works on his breathing very seriously. I am filled with hope. Mikey has a new roommate. His name is Daniel, he's 22 and is recuperating from surgery. He has a tumor on his brainstem. Inoperable I think. His devastated mother stayed in the room all day filled with worry for both her son and Mikey who she's already become fond of. Daniel will only be at Spaulding a few days probably, but his ordeal will be far from over when he goes home. Mikey agreed that having a tumor on your brain at only 22 was a rotten thing. For the first time in months it seems he opted to watch his afternoon videos in his room, sitting next to Daniel as he slept. I do my crying in the elevator, in the car, We decided to get out of the hallway, and t raveled up to the 8th floor screening room, to watch a collection of Chuck Jones cartoons. Dee laughed til he screamed at Duck Dodgers, Rabbit Season, and our favorite, bulldog Marc Antony and his pet kitten. True to sensitive form, Mikey began to cry aga in as a heartbroken Marc Anthony placed the kitten-shaped cookie on his back to the strains of plaintive violins. Luckily, the sight of the real kitten brought joy back to Marc Anthony AND to Mikey, my two favorite softies. If you'd like to perform a few songs for Mikey sooner than May, the next 8th floor second sunday thang is next week, Feb 11th, email me or T Max, or anyone on the team for details. Thanks.
After getting Mikey into bed and hooked up with Jevity, we practiced the 1st breathing exercise on his CD. He nodded when I asked if he was working on it alone at night. After we finis hed with that, Mikey wanted a movie. I scrolled through some titles, and got a nod for American Beauty. Leaving Mikey to savor the twisted banality of suburbia, I turned the lights low and left. After a brief spell in the gym, watching the river and the daylight lingering later and later, the neck spasms, totally wiped him out. He wanted to go to bed, so we got him in quickly and I pulled out the treat of the day: a Muppet Show video featuring You Know Who. When I showed him the box, he became very excited, and that was before I told him Elton was on it! I said, "Guess who the guest star is? Is it…Ralph Nader?" (laughter) "Is it Walter Matthau?" (more laughter ) "Oh, wait, is it…Elton John?" (hysterical laughter) So we popped that in, and laughed at Pigs in Space, Vetrinarian's Hospital, and Elton's costumes. Only "Goodby Yellow Brick Road" caused some tears, until I asked him just how much cocaine Elton had snorted before agreeing to work wi th puppets. Back to giggles. Also got some time to practice the Andrew Weill breathwork, this time with the cd. Mikey was very engaged and focused; it seemed to quiet the spasms, too. He vowed to practice tonight if he can't sleep. So I tucked him in with assorted teddys and "A Night at the Opera" (Marx Bros., not BRO), and said good night. We did some really focused breathing exercises today-still not working with the Weill cd, but practicing deep inhalation and forceful exhalations. Anybody who gets in earlier in the day, who can find a quiet place with a cd player, should REALLY get him going on those exercises. I am convinced that the key to speech is on that disc, but I just can't get in early enough, before Mikey's too beat. We also spent some time in the gymnasium, and managed to catch Kathy, his PT person so Mikey could indicate directly to her that he wants more gym time to work on PT. Another of life's ironies: Mikey, whose prior physical exercise consisted of climbing the stairs between up and down at the Middle East, is turning into a gym rat! Well, kind of. It's just a great indicator of how determined he is to get better. 2001, baby!!! On another note, Mikey has another new roommate. I asked Mikey if he was friendly and he just shrugged. I wonder if his roommates are becoming a blur of faceless people like in Pink Floyd's "the Wall".. They come in, they go out... Mikey stays.... UGH! I'm noticing these days that apart from bouts of sever neck spasms, dialogue with Mikey is much more engaged and focused. It's easier for him to convey his responses not only through nodding, but through an increasing range of facial expres sions. In the early days of recovery, his face was a tragically stoic mask, never changing expression or revealing the vibrant person trapped inside. I feel like the ice is slowly melting, and our Mikey is coming closer and closer to the surface. Pray for an early spring, folks. I also visited Mikey last Friday afternoon, it was a pretty mellow visit but we worked on his speech exercises and had a talk about his therapy and expectations. It was good to discover he wasn't as frustrated with the care he's been receiv ing recently as we on the team sometimes are, although he'd like more physical therapy than he's getting, and he continues to really work at getting better. We also played with playdough on Friday, getting Mikey to try and squeeze it as hard as he could. He showed off some good right thumb movement too. While initiating a sound is still generally outside his grasp his breath control continues to improve. Because of that, they're going to try a mouth controlled switch next week. I'm pretty hopeful that he'll be able to operate it with less of the signaling misfires he gets with his thumb. I did find Mikey gracing the hallway which was a madhouse. Sometimes the Spaulding hallway smells worse than a New York City Trash Collectors Strike in the middle of summer..what can you expect from an incontinent stroke ward.. so Mikey and I escaped to the fresh air of his room where he wanted to "rock out" and listen to the Pixies... I threw "Trompe Le Monde" in and he kept time with his left foot and surprised the beans out of me when he occasionally threw in his right foot. He also moved his rig ht thumb quite a few times for me today too which was amazing. I was so psyched that I danced around the room for him, and gave him a big smooch on the head. Any movement on his right side is the coolest! I think he surprised himself a bit too because he was all smiles when he moved them too... Keep on movin dee.... This is the year you come back!!!! The Team and I have noticed of late that Mikey does not seem to be getting the same level of therapy he was getting before. I spoke to his neuropsych doc, who was kind but somewhat less than helpful. He did suggest (as we have been discussi ng for a while) the concept of moving Mikey to a new facility that would better suit his care. Spaulding is traditionally a short-term rehab; most of their patients are up and out after a few months-like Joe, his roomie, who was going home tomorrow. (Good luck, Joe!). I broached the topic very casually with Mikey, who crumpled into tears. He has been hoping that he will move directly from Spaulding to home, but he's really not r eady for that just yet. I soothed him (feeling terrible for even bringing it up), and reasoned with him about why a new place might be just the thing for him. He calmed down pretty quickly and seemed to understand. When I asked him if he was fully committ ed to doing whatever was necessary to get better, even moving to a new plac e down the road, he nodded firmly. Having lived with the lovable if often shiftless (and dare-I-say somewhat less than responsible) boy for some time, it really makes me so proud t o see his determination. I believe that Mikey will get well, and it's Mike y who makes me believe that. Thanks, Mikey. We left Mikey watching "The Sixth Sense" which Shireen and I saw at the movie theatre with him... she and I both got weepy walking to the car reminiscing of the fun we had at the movie theatre with Mikey, commenting on all the scary scenes and going to a diner afterwards. Our Sundays with Mikey sure have changed.. but we hope and pray that in 2001 they will change for the better. Mikey Dee Updates September 25 through December 28, 2000 Mikey Dee Updates May 21, 2000 through September 24, 2000 Mikey Dee Updates March 6, 2000 through May 20, 2000
|