Billy's Bad Bod: Backwards, Hey

Yesterday afternoon I got discharged from the hospital after a long talk from the resident MD and my current nurse: take it easy for a week; realize that a good portion of your problem with your heart has to do with your thyroid, which is producing too much bad stuff, making your heart race, filling your lungs with water, scaring the shit out of you as you try to breathe. So I'm seeing a Thyroidologist  on 3 December to see if he can figure out how to deal with it.  And of course, new drugs to address the problem and drugs to address the drugs.  Get it?

Yeah, but my cardiologist said, as he prepared to poke et, al, 'you did indeed have a slight heart attack. You wanna call it congestive heart failure, go ahead."  This was the day before yesterday, and, boy, them surgical nurses was cute!  Naturally, I charmed them from here to Chattanooga.  Drugs weren't much (proponol), but the girls made up for it.  Procedures didn't take long and proved: 1) zapping my heart four times (I was asleep) couldn't bring my heart back into rhythm.  This is not uncommon, but I think they're blaming that dirty ole nasty thyroid; 2) the rapid pulses I had experienced the day before had not done substantive damage to the chambers of my heart.  This was very good news.  And the witch doctors and mechanics and medicine men will see what they can do with this almost-71-year-old-machine called my body.  BTW: everyone who came into my room to poke, zap, measure (every 3-4 hours) remarked how I looked more like fifty rather than 71.  Heh, heh. 

OK. Now the fun part.

I usually lie down to read in the afternoons, hoping I'll fall asleep.  I usually do. On Tuesday, I didn't. At about 300 I noticed a little difficulty breathing.  I got up, walked into the bathroom (not sure why), noticed a lot of difficulty breathing, came back out and dived for the cell phone on the bed.  911 was really good, and as fast as they could possibly be. Not fast enough: I was gulping shallow breaths so that by the time they tossed me into the Unit, I was a wild man: wouldn't calm down, kept tearing the cup off my face.  I could only speak one word at a time, and could not talk to Erin.  It was a mess.  Poor Erin: she was scared almost as poopless as I was when she came home and found me gone, and all my modes of transport still there.

So yeah, folks, I'll tell ya that not being able to breathe is quite possibly the worst thing that can happen to you: no defense; no cure.  In the ER, they opened both arms and the back of one hand and pumped me so full of stuff that I could almost not hold it.  The mainlining of Ativan put me out, thank God, and whatever else they pumped into me seemed to correct the breathing problem and the pulse of 130-140 (think about that for a second).  They told Erin that my situation was very severe.  Poor thing.  When I woke up, I was fine.

As of this morning I feel great except for a pronounced weakness in the legs: to be expected after over three days on my back and butt.  Looking forward to a real breakfast, a little college football (no a lot).  Probably a nap.

All told: happy to be here.

Mini Diary; Lack-of-Progress Report

It's been a while and I must make apology to my Followers; all four of them.  I have been both lazy and a bit busy. My younger daughter, Megan, got married at Kealakaua Bay on the Big Island on the day of the Winter Solstice.  It was a gorgeous partly native, partly Jewish, mostly Pagan ceremony overlooking the bay.  It was also the first time in five years that the family (including Marge, my ex-wife) was all together.  Both Libby and Megan are smart, beautiful women and I am very proud of them.  Meg lives on the Big Island, by the way, and from the wedding attendance, it's apparent that everyone on the island loves either her or her husband or both.  We ate the whole pig and finished two kegs!  Erin also took advantage of the the resort hotel where we stayed: massage, pedicure, facial, yoga.  And of course, we ate like royalty but without the treasury; Eurasian food is a real joy.

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 Prior to that time I did a choral festival at Biola University in LA in November that was a lot of fun, and where I had fine Korean food (ain't none of that around here, despite the strong LG presence) with two former students, Christian Campos and Joe Paguio. It was also great to see and hear the work of former students Shawna Stewart, Michelle Jensen and Shannon Mack.  And a perfect stranger sitting next to me at my judge's table asked me to sign his copy of my first book.  Blew me away.  Speaking of books, my second (and last), A Matter of Choice: Interpreting Choral Music, was published in early December and is available in both paper and e-format.  The profit for me is better at createspace.com, but if you insist, you can also find it on Amazon, of course, as well as what's left of Barnes and Noble.  Mazeltov to me.

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We flew RT from Chicago to Kona and back, arriving home on the 23 December and drove from Chicago to Green Bay, where we spent Christmas and New Years with Erin's wonderful family (well, mostly wonderful; some of the Rabid Republicans can be hard to take, but mostly they have learned to either ignore us or stay away from politics.  We ain't always easy to get along with either).  Her parents and siblings are utterly delightful and her bro has become a better cook than I, which is saying something but I'm not sure what.

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Now Erin is back to work and I am back to my domestic and Recovery Routine, which now consists of bi-weekly physical therapy, trucking around the house with only one crutch, thrice/week work at the YMCA that includes four lower-body and six upper-body machines, for a daily total of 12.5k pounds of lifting, plus a few minutes on the recumbent bicycle.  Also, of course, visits to at least two specialists now and then, one of whom had predicted that he was 90% sure that I would be walking unassisted by now.  He was wrong: I am obviously a 10% kind of guy (hence the Macintosh).  My progress has leveled off and I still use two crutches when out of the house.  My physical therapist, whom I haven't seen since August, was really impressed with me this week, however, and she is an expert on spinal cord injuries, so she oughtta know, I guess.  My stretching/exercise routine four days/week is now up to almost 45 minutes per session and is really boring but necessary.  I sure wish I had the balance to resume yoga, but I would endanger not only myself but anyone within four feet of me.  I see the neurologist-who-failed-to-diagnose-my-condition next week to see if his current prognosis might again include walking unassisted.  I was told by my physiatrist (yeah, believe it or not) and PT person that my improvement would reach a plateau in a year and then slow down.  It has done both.  The anniversary of the corrective surgery is 2 Feb, but things are surely better: I am a long way from those first two months in a wheel chair, for which I am grateful, and will continue to do my utmost to improve further.  Fortunately, I have a very supportive wife and a delightful caregiver who is with me most of the time when Erin is at work.

Things could sure be worse.

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Hey!  If you read this, could you please leave a comment so I can take roll?  I'd love to know if I should abandon this and rely completely on Facebook, or keep this up.  Dunno what might be best: they are both ego-centric exercises after all.  I mean who REALLY cares about what I do or what I think?  Huh?  I mean, really . . .

Physical Progress Report (A Good One)

So to begin with, I had to have arthroscopic surgery for a torn meniscus on my right knee.  That was on 23 July.  It slowed me down the week before and the week after, but I am long since back to normal, using the Lofstrand crutches and resorting to the walker only for trips to the loo in the middle of the night.  And I had GREAT pre-surgical drugs!  Wheeee!

Then today Gwen, my physical therapist, kicked me out ('discharged' is the word they use),  after watching me walk using only the right-hand crutch.  I now have orders to use only one crutch at all times when at home but still two when out and about.  The idea is to depend on it less and less as time goes slowly by.  Tomorrow morning I will carry my cup of coffee from the kitchen to my desk once again, as I had been doing for a while before the knee slowed me down.  (I didn't spill, either). Today Gwen made me walk across their kitchen carrying a plate with both hands, using no crutch.  I whimpered and howled with fear but I made it with her hand on my back.

Also, I have re-joined the YMCA, and I started lifting weights again on the 20th, including leg extensions, leg presses and an abducting butt builder.  The upper body work is just plain male vanity, of course, but it sure feels good, and the upper body strength that I had developed over the years helped me through my lower paraplegia immensely.  Still does.  Good to know I did something right before this slow motion s***storm began and knocked me down and out.

I have to wear orthotic devices on both lower legs that prevent the knees from hyper extending by keeping my weight forward and toward the balls of my feet rather than on my heels.  They are an ugly nuisance but I walk much more correctly and comfortably whilst using them.  Naturally, I hope that in time I can toss them, but there are no guarantees of anything, and I have to protect the knees: no knees, no walk.  The biggest problem with them is that I have been tested to drive and can do so again, but not with those devices on; they prevent dorsa-flexion of the ankle that is required for both braking and acceleration.  Simple sigh . . .

Gwen, by the way, has been working with me three times per week since the first of March and she has been superb in all ways, though she tended to be offended at my occasionally colorful language and disconcerted by my yelps of pain or fear.  I will see her again in November to determine how things stand in her opinion and mine.  I cannot praise this woman enough, and have both respect and genuine affection for her as professional and person.  We hugged before I left for Europe in May, and we hugged today.  I teared up a bit, I don't mind admitting (I am 70 after all, and we old farts tend to be a bit sentimental; my father-in-law called it 'seventy-mental').

I have begun to slowly get back to professional work: I will be subbing for the wonderful woman here at the local community college in October and November, including one concert; am going out to LA in November for a festival adjudication with clinics; making plans for a winter residency in Oregon; making plans for a short spring USC Chamber Choir Reunion tour in Spanish and French Basqueland, where we will rehearse more than perform and eat and drink more than we rehearse (sound about right?); finally, I will possibly be going back for another extended residency (my sixth) with a professional chorus in Korea in the foreseeable future.

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 I have come to the end of my celebratory martini, and I will carry the glass back to the kitchen in my left hand whilst using a crutch only in the right.

Mazeltov to me for now at least.

First POSITIVE PROGNOSIS (!)

I got the first really good news of this drama yesterday at my neurologist's office. It was the post-surgical, post-rehab, post-outpatient physical therapy appointment. He watched me take a few steps while holding on to me and said this:

--You will be walking unassisted by the end of the year. To which I replied:
--No shit? How confident are you of that? To which he replied:
--90%.

Boy oh boy, was that good news. I don't think he would give me false hope at this point so I choose to believe him and work very hard to make his prediction come true. I won't be tap dancing or running a marathon, to be sure, but I at least hope to walk onto a stage again with a modicum of comfort and ease, if not elegance, and be able to stand through at least half a rehearsal.

My physical therapist punishes me three times per week and thinks I am doing beautifully, given the damage to my nerves and the resultant weakening of leg muscles. For the first time since the Minor Setback, she took away my walker and put me onto two canes and made me walk with them about 150 feet, with rest stops every fifty feet. I was sweating at the end of it. I have to keep doing that because Two Canes is the third stage of treatment, with One Cane being the fourth (wheelchair and walker are One and Two).

I am lucky to have a superb caretaker, Dorothy Miller, during the week, who punishes me almost as much as the physical therapist and is a joy to be around. We're going out for Happy Hour oysters and martinis tomorrow for a minor celebration of sorts. Erin comes home Sunday and maybe we can do the same.
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This will be the last post about this soap opera for some time: nine months is the gestation period for humans and my gestation period for a rebirth of ambulatory independence. It's a long time. I may go back to discussing politics, which at the moment is rich with topics. Who knows? Maybe I'll run for president in 2016.

Thanks for staying tuned. All told, I'm a lucky guy: I have two daughters, two old friends, an adopted family, and numerous former students who apparently really do give a rip about me and bother to tell me so, for which I am more grateful than I care to express here.

Cheers, then,

Bill

Minor Setback Amidst Slow Progress

I'm back in the wheelchair. At 300 am on 16 March, whilst taking walker to the toilet, I noticed my right leg was dragging. When I got up at 700, neither leg was working and I was in the same condition as before surgery: useless. I was unable to do any of my leg exercises that morning. At physical therapy that day, the therapist who is very experienced in spinal cord injury said that my symptom is not uncommon. My strength will probably return, but I must work hard daily to regain the progress I had attained in the 5 weeks since surgery. (I'd been out of the wheelchair for about two weeks). As a result, I have requested 24-hour caregiving while Erin is on tour next week; if something happened at night while alone, I could be helpless until morning, unable to even reach my cell phone. Sigh, sigh, double sigh. Will use walker AMAP today and resume trying leg exercises. Triple sigh.
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I think it's important to relate here what I have to tell myself more than weekly: I did absolutely nothing to myself to deserve this. I did nothing to cause it. Shit happens. Nor did I coach the four incorrect diagnoses from three neurologists and one orthopedic surgeon over a four-year period of slow deterioration; I merely accepted blame and one unnecessary back surgery. Neither blame nor surgery helped. I am where I am, that is, a victim of the "best health care system in the world." Only frequent bouts of cursing seem to help temporarily, as does a lot of sleep (everything I do is an exhausting effort). According to my neurologist, it could be six months to a year before any real progress might be noticed. No guarantees as to how much progress I might experience nor how long it might take because we have no real idea how much nerve damage was done before the corrective surgery, which may have come too late. Only guarantee is that symptoms will not get worse. That's something, at least.
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Am looking forward to a corned beef sandwich today to celebrate St. Paddy, as well as more of the world's second finest athletic event: NCAA BB Tournament.

Cheers, gang.

Up and At 'Em (I guess), At Least Not Down and Out (yet)

Was discharged from an acute rehab facility here in Huntsville and returned home on 27 Feb so on Monday it will be a week. I had been hospitalized since surgery on 2 Feb and have been in a wheelchair since. My walking with a walker improved very much in the three weeks of daily therapy and am now in outpatient rehab here in town three days a week, where we continue to work on muscle strength and flexibility in the legs, as well as my gait. While in rehab I learned to transfer smoothly from wheelchair to bed, easy chair, dinner chair, and toilet with help. I now do those things without help but I still need help in and out of the shower. I dress and shave myself, though I have to transfer to a stool so I can sit at the sink for ablutions (wheelchair is too low). In short, I think my legs have improved in terms of strength and movement. We'll see what Erin thinks when she arrives home.

I have two long term care policies to which I have made claims so I hope they don't act like normal insurance companies and find an excuse to refuse me: my nest egg would disappear; it would have disappeared long ago without Medicare (Democrats and Lyndon Johnson be praised). I have had in-home help from Home Instead since my arrival at home: my main caregiver is a delightful woman who was here from the first day. Have also had help from three others this week when Dorothy is off and during the night; we didn't want me home alone at night while Erin is attending the ACDA Southern Division, where she made a successful presentation today. She arrives home tomorrow.

Am trying to use the wheel chair less and less; I now take the walker instead when going to the bathroom or into the bed for a nap or at night. I can now do everything for myself except stand and cook, as well as fetch things (hard to do when you have both hands on the walker). Standing without any support at all is still very hard because of weak muscles, yes, but primarily because I can't feel my feet, so my brain doesn't know where I am in space and I weave like a helpless drunk after a short time.

Thanks for the many expressions of support both here and on Facebook; I am deeply grateful for them and am so glad that I have so many former students who still care about me after all these years and take the time to say so in some form.

Am trying to follow my Viking forebears' excellent advice: 'Pray to God in a storm if you like, but keep on rowing.'

Will keep rowing.

The Cause of My Problem and the Slow Recovery

Yesterday's spinal arteriogram revealed a hole in one of the blood vessels in the thoracic spine. Dr. Chan, who did the procedure, said he could have fixed the problem while in there if his probe had been a bit smaller (he went in from the groin) but, alas, that will have to wait.

Diagnosis: what I have is Foix Alajouanine Syndrome (in English, spinal dural arteriovenous fistula), a very rare condition discovered in 1926 by two Frenchmen that feels and acts like normal peripheral neuropathy but is instead the cause. My neurologist, Dr. Mulpur, has only encountered four such cases in his twenty-two years of practice. The progress of my condition can be halted by a surgical procedure going in from the back that will remove a section of the offending vein, returning the blood flow to normal, relieving the pressure on the spinal cord. This pressure is what has caused the problem from the beginning. The procedure will be performed by one of the finest specialists in the country, Dr. Dan Barrows at Emory University in Atlanta. Drs. Chan and Mulpur are working as I write to schedule an appointment that fits Erin's schedule so that we can get this done ASAP.

Prognosis: Symptoms that generally respond well to this treatment are walking difficulties and muscle strength, which believe me are my most serious problems. In other words, there is hope and a chance that I will walk unassisted again sometime in the foreseeable future (within about two years; it was slow in coming, it will be slow in leaving). I should sense improvement within several weeks after the procedure. I may not tap dance or run again, but I hope that I can at least return to shooting hoops (a whole-body endeavor, which is why I had to quit: I only had half a functioning body) and stand in front of a chorus again without leaning on the piano or using a stool. Maybe even yoga, if I can get off the floor smoothly.
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I wish I could drive to Atlanta and have this done on Monday, but alas will have to wait on Barrow's schedule.
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Profound thanks to Dr. Stephen Somerville in Green Bay, who saw me over Christmas, looked at all my medical records, and said "No, it's not neurological, it's spinal and it's in the thoracic spine." He was correct. Thanks to my wonderful GP, Dr. Ghanta, who ordered the MRI with contrast of the thoracic spine. Thanks to my neurologist, Dr. Mulpur, and the neuro-radiologists who read the MRI and definitively confirmed Somerville's diagnosis. Thanks to Dr. Alex Chan and Nurse Moss, who were not only professional but personable as well. Boos and hisses to the anesthesiologists, who put me out so fast that I didn't even get three seconds of '60's opiate euphoria. I had asked for thirty seconds and should have gotten it, given what those guys cost.

More anon. When I have news, you'll get it. Thanks to all the faithful: Xn, Katie, Bob, James, Pam, Joe.

Morning Briefing

My condition has worsened considerably. I can barely walk even with the walker. Am undergoing a spinal arteriogram on Thursday, which is supposed to halt the progress and begin the long slow climb back. Neurologist and three radiologists are convinced it will work. Don't know that I am; I was fooled once a year ago. Am beginning negotiations to have myself checked into Vanderbilt medical center to confirm or refute this diagnosis/prognosis, or to possibly discern other causes. This will be my fifth surgery in the past year, though one was very minor. The good thing is the 30 seconds of opiate euphoria I experience while being wheeled into the OR; I should have done the 60's in a way other than grad school, lemme tell ya. Boy, I'm clever on that gurney! Erin and her parents have been wonderful throughout this mess.
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In other news, the Republican field of delegates is the most disgusting, frightening thing I have experienced in my long, full life. And why we have to be treated to debate after debate of this clown-show-turned-fecal-fest is way beyond me.

This just in! Have begun negotiations to e-publish my second book. By popular demand!

Stay tuned for more if you've a mind. Breaking news at 11:00!

Ellington Tunes

Don't Get Around Much Anymore (Duke Ellington)

My mobility has actually worsened since my surgery in early February. Since that time, I have seen a neurosurgeon twice for a second opinion, a new neurologist twice, my orthopedic surgeon thrice, and a psychotherapist once (with, I suspect, many more times to come). I graduated from my walker to a cane during the trip to Spain in May, but recently have reverted to the walker more and more for both balance and support. Balance is especially bad, so cooking is a bitch (try slicing and dicing with one hand on the knife, the other on the counter), as is shaving and showering. And an MRI has proven that it's not my brain that's the problem, it's the weakening muscles and utterly deadened feet that cannot tell my brain where I am. In other words, neither surgery nor time has lessened the symptoms of the neuropathy; they have in fact grown worse, and there is no prognosis of where it will end, but I'm beginning to suspect it ends with a wheelchair. Oh, and I sold the pop-up camper because I simply cannot do the work anymore. (Just got back from the neurosurgeon, who said that cervical spine surgery will not correct the problem at all, and also said definitively that I will never walk normally again, no matter what I do. That's the first time that any of the professionals have confirmed what my body has known for a long time). Nevertheless, I will keep moving as much as possible, keep stretching, and keep up with leg raises and leg presses at the Y. (My upper bod looks great, btw!) And no one knows with any certainty what has caused this nor what I can do about it that I am not already doing. Nor do they know with certainty if things will improve at all, or what the prognosis is.

Things Ain't What They Used to Be (Mercer Ellington--Duke's son)

Speaking of upper bod, as long as I have a conductor's chair and the piano right in front of me, I am still a killer conductor from the waist up: Arms, ears, brain, wits, eyes all work fine, in some ways better than ever. Rehearsals with Erin's groups on MigraineDays have proven that. It's just that I seriously doubt that anyone wants a guest conductor who is held upright by his butt instead of his legs. I sure hope so, because I do love the guest thing; it's like being the grandparent--you get to have a lot of fun with the kid and then hand the little sucker back as you leave. And with a check in your hand to boot!

So anyway then, stairs are a big obstacle that can only be overcome slowly, curbs are tricky, travel of any kind is increasingly arduous (I always get a wheelchair in airports, and have since travel to Taiwan last December. Five dollar tips just fly out of my pockets!)

***

There you have it. My family has known this for a few weeks and now you do, too. You can help me by referring folks here, should they inquire as to my well being. I'd appreciate that very much. It's much simpler than numerous emails, and I'm damned if I'm gonna post this on Facebook. And I may alter and amend it from time to time, so stay tuned, will ya?


One final Duke Ellington tune:

I Got It Bad and That Ain't Good

Coming soon to a weblog near you . . .

. . . a post by me about the pernicious effects (on me) of comments by readers to news releases on the internet. It ain't pretty, folks.


(BTW, knee arthroscopic surgery to right meniscus (48 hours ago) went pretty well, but mobility severely hampered: I'm really slow, even with the walker. Today, though, I can put a bit of weight on the knee as I scrape around the house. Minor pain yesterday, none yet today, 48 hours later).