Notes from the Home - July 29, 2014

   Al had some bad days last week. He called Thursday morning and asked me to come up. That he asked me, rather than demanding my presence, was an indication that something was amiss. At his door, I was greeted by a nervous wreck. Al complained of a fibrillating heart and an excruciatingly painful right leg, the leg that was injured during a Viet Cong attack in May 1965.

   It took several minutes and all my persuasive powers to convince Al to sit down. My soothing words, however, were unable to coax more than a moment or two of relaxation from him. His complaints came in angry bursts, as if from a machine gun.

   “I got out of bed this morning and the whole room was spinning. And my damn heart, it was fibrillating all over the place. It still is, and I can’t breathe for shit.”

   Then he moved on to the leg. “The pain starts up here,” he said, clutching his right buttock, “and it goes all the way down my leg. All the way to my ankle.”

   And he heaped scorn upon the medical profession. “Those damn doctors; they don’t know a goddamn thing. And they don’t listen. I tell them my leg hurts like hell. What do they do? They take X-rays and tell me everything looks fine. Damn it, you can’t see pain. It’s a nerve. It has to be.”

   Moving rapidly from one complaint to the next and back again, Al’s fulminations went on and on until James knocked on the door. Al yelled, “Come in.” James did and asked, “You doing OK?” That was enough to get Al started again, this time concentrating on to his gastro-intestinal woes.

   “Hell, all I have to do is look at food and I get gas. I try not to eat too much, but you should hear me after dinner. I go down the hall going bleeck, bleeck, bleeeeeeeck, bleeeeeeeeeck, bleeck, bleeeeeeeeck. And it’s bleeck, bleeck, bleeck all the way up the stairs.”

   That, by the way, is the absolute truth. When walking with Al after dinner, the wise person stays in front of him.

   To illustrate another point, Al cupped his hands above his right hip, moved them up to just below his rib cage, then across to the left side and down. “It takes two-and-a-half days for my food to move from here to here.” Al said.  “I’ve studied my body, and I know how it works.

   “I had a movement the other night. I was damn lucky to make it here in time. I pulled down my pants has fast as I could and sat down. Then I sat for about ten minutes. I couldn’t tell if I’d passed anything or not. I looked down and the damn commode was full. There was one eight inches, one six inches and two about two inches. I didn’t touch them, but I got a tape measure and eyeballed them. Eighteen inches; can you imagine that? How long is the colon? Mine had to be empty.”

   James had never heard the tales of Al’s bowel movements and convulsed with laughter. It was contagious; Al got to laughing so hard he could barely finish the story. As Al laughed, the worry faded from his face. The conversation took a turn to the normal, and James excused himself a few minutes later. Al and I talked a while longer, until he said, “Tom, I’m all right now. You’ve got better things to do. Get the hell out of here.”

   At dinner that night, Al said he’d talked to Penelope. She told him she would talk to Debbie, the nurse in the personal care section, on Tuesday – Penelope was taking a long weekend – about finding a doctor who could effectively treat Al’s painful leg.

   Saturday, as I was assembling a sandwich, the phone rang. “Tom, Al here. Can you get up here right away?” I could, and I did. The old lieutenant colonel was much less excited than he had been on Thursday; much less excited than he had been earlier Saturday morning, for that matter.

   “I called down to the desk about nine-fifteen and told whoever answered what Penelope and I talked about the other day. I said I wanted them to send Debbie up to see me. What did they do? They sent the little pill girl. I was so mad, I told her to get the hell out of my room.”

   He went on to complain about his leg and doctors, especially those who looked at X-rays and told him was nothing wrong. Then he called the Hughston Clinic to speak with the doctor he’d seen there not long ago. The clinic is closed on Saturdays, and the recorded message said “if this is an emergency, call 911.” Al considered that option, but decided if he went to the emergency room again, all they would do is take X-rays again.

   There were live people at St. Francis Hospital when Al called. The doctor he requested to speak with was the emergency room doctor who treated Al when he went to the ER a few weeks ago. The person at the other end told Al the doctor wasn’t available and Al needed to see his own doctor. Al thanked the man for his help, put the phone down and said, “I guess I’ll have to wait until Penelope gets back.” And he has, very patiently.

Here I Am

I’m in this place where old folks go

When they get gray and frail and cranky.

No, I’m not old, I’m clumsy though

And in this place where old folks go

Because I’m spastic and I’m slow.

But I’d like some hanky-panky.

I’m in this place where old folks go

When they get gray and frail and cranky.

Notes from the Home - July 21, 2014

   Betty lives in the apartment above me. She is a tall woman, five-ten or so, and wears shapeless dresses, like those worn by frumpy housewives in the 1950s. She walks slowly and a little stiffly. Betty’s white hair and wan complexion give her an almost ghostly appearance, like a ghoul in a small-budget horror film. But ghouls never smile, and Betty does. She smiles all the time.

   Betty stopped me in the hall one day and asked if her television disturbed me at night. I told her it never had. “If it does, give me a call. I go to bed about the time most people get up,” she said and went on her way.

   Betty’s name came up in a conversation with Eleanor, and I told her what Betty said about her sleep habits. It turns out, Betty was a nurse and worked midnights her entire career. When she retired, she stayed on her third-shift schedule.

   I found out last night that Mildred, who moved into the apartment across the hall about a month ago, is also a retired nurse. I noticed her keys hanging from the keyhole in the door handle. I knocked; she answered and was duly embarrassed when she saw the keys. “He [the poodle with a dirty white coat with whom she shares the apartment] pushed the waste basket in front of the door,” she said. “When I got back from dinner and opened the door, I heard it tip over. I was afraid something might have spilled and rushed in to clean up the mess. There wasn’t a mess. Guess I forgot the keys, though.”

   After we’d talked for a few minutes about this and that, Mildred said I should feel free to call her if I need help with anything. My lips said, “Thank you,” but my eyes must have said, “You’re eighty-something and you look unsteady when you walk.” “No, really,” she said, “it’s been a few years, but I was an RN. If you ever need help, please let me know.” 

   Covenant Woods has its share of mean-spirited old dames. It’s nice to know the lady across the hall isn’t one of them.

   The two hour drive to the Emory Clinic no longer thrills me. I don’t travel well these days. Getting into the car is getting harder and harder; my butt commences aching earlier and earlier; and by the time we get to Atlanta, my legs all but refuse to move, making the transfer from the car to the wheelchair dicier and dicier. Once at Emory, I seldom spend a half hour in the company of medical professionals, and that includes the five minutes with the nurse who takes my vitals. Then it’s back to the car for the two hour trip home. It’s a long day, indeed.

   When I was preparing to move south, I asked Dr. McKee, the truly marvelous doctor I’d been seeing at the Cleveland Clinic’s Mellen Center for nearly five years, about finding a doctor down here. He suggested I check the “Find a Doctor” feature on the Medtronics’ website – Medtronics is the company that made the baclofen pump that resides on the right side of my abdomen. The nearest ones were at the Emory Clinic, ninety-eight miles from Columbus, according to the website. I called, made an appointment, and have been going to Emory every few months since.

   In October, I went there to do the pre-op stuff for having my pump’s innards replaced. As part of the process, a nurse asked me a long series of questions. My answer to one of her questions included the phrase “at the Cleveland Clinic.” I was just trying to answer the question, but she must have thought there was a haughty when-I-was-at-Harvard tone in my voice and snapped back, “No, we’re not the Cleveland Clinic.” No they’re not, not by a long shot, at least in my experience.

   When I go to Emory to have the pump refilled, that’s exactly what they do. That’s it; they refill the pump. The doctor never does an assessment, never bends my leg at the knee to see how stiff it is, never asks me hold my leg out as far as I can and try to keep it there while he presses down on my foot to see how weak I am. The only question he ever asks is, “What do you think? Should we increase the dose?”

   Which is why, when I went to see Dr. Miller, a GP, two weeks ago, I asked him if there was a neurologist in Columbus he’d recommend. He referred me to Dr. Verson, who saw me last Monday. It was a good visit. He seemed interested, if not in me at least in what ails me. He wondered aloud why I was diagnosed with primary-progressive MS; he thinks secondary-progressive might be closer to the truth. When he explained secondary-progressive MS, it sounded a lot like the explanation I was given eight years ago for primary-progressive. Perhaps it is one of those distinctions without much of a difference. In any event, it is reassuring to know the doc is thinking about MS as I know it.

   One of his concerns was that I might have neuropathy. Two days later, I was back for an EMG – electromyography – administered by a guy named Mark, who said, “I spend all day sticking people with needles and giving them shocks. I love my job.” After he spent a half hour doing his job on my legs, he said I probably don’t have neuropathy. The weird, burning sensations I’ve been having in my feet are probably the result of a pinched nerve in the lower part of my spine. Friday, I see the local phlebotomist and then go through another test of some sort.

   All the poking and prodding isn’t going to cure me. But maybe, just maybe it will result in something that will give me a little boost or make doing some formerly easy task a little easier again. That is not likely to happen when all the doctor does is fill the pump with baclofen every few months.

   And, oh, by the way, Dr. Verson said there are some local doctors who can fill the pump. That will make life easier for me and for Russ, who has been doing yeoman service for the last two years, hauling me to and from the Emory Clinic.

Notes from the Home - July 15, 2014

   Tuesday, I took the Covenant Woods’ bus to the Columbus Clinic to see Dr. Miller, my primary care guy. That’s what they call general practitioners these days, isn’t it? I thought he would discover that I was running a temperature. Before the good doctor made his appearance, however, a nurse took my vital signs. Everything was in order, including my 97.9 temperature. The discomfort I’ve been feeling must be a MSer’s sensitivity to heat.

   The Internet is brimming with sites offering advice to those of us with Multiple Sclerosis. An exhortation to make sure the AC is working can be found in every one of them. The air conditioning in my apartment is working well, albeit a little harder than the last two summers, when 75 seemed to be the ideal temperature. This year I’ve been dropping the thermostat to 73 during the afternoons, and keeping it at 74 the rest of the day. Nonetheless, any exertion, no matter how small, seems to get me sweating.

   Anyway, when the nurse left, Dr. Miller came in. He asked how things were going. I told him I thought I had a bladder infection. He asked why. “Because it hurts when I go.” He told me to go pee in a cup. I told him I’d need a catheter; I can’t pee on demand. The truth is the old bladder has performance anxiety. If I’m in the apartment reading or watching the TV and the urge comes over me, I head to the head and everything works fine. Well, not always. There are times when I suddenly realize I’m going to be late for this or that if I don’t hurry. My bladder doesn’t hurry; in fact it hardly works at all when I need it to get it done now.

   Rather than trust me with one of the clinic’s catheters or give me a cup to fill at my leisure at home, the doctor opted to tap my bladder himself. He hoisted me on to the examination table, did the usual examining things and called for a nurse. When she arrived, Dr. Miller told her to get him a pediatric catheter. Pediatric catheter? I am, admittedly, modestly endowed. But a pediatric catheter? Pul-leeeze.

   My pride was salvaged when the kiddie catheter failed to produce a single drop of urine. “Your well must be dry, but maybe we should try a regular catheter – just in case,” the doc said. The big-boy catheter reached all the way to my bladder. The doc took a look at what the tube had yielded and cast doubt on my diagnoses. “This urine looks pretty clear,” he said before sending it to the lab and me to the waiting room.

   Twenty minutes later, he called me back to the examining room. “I guess you know your body,” he said. “You do have a bladder infection.” He said he would send a prescription to the Clinic pharmacy. At the pharmacy, I told the cashier I was there to pick a prescription Dr. Miller sent down for me. She went to see if it had been received, and when she got back she told me, “They’re still counting it.” So I waited. I’m not sure for how long, but grandson Hayden, not yet four, could have counted to fourteen faster than that pharmacist did.

   With meds in hand, I headed toward the closest exit, fumbling all the way as I tried to get the phone out of my pants pocket in order to call Wes and tell him I was ready to go. Before I retrieved the phone, however, I spotted the Covenant Woods’ bus heading my way. Wow, Wes is clairvoyant, I thought. Alas, it was just a coincidence. The bus pulled up, and Mary got off and headed to her appointment. I got on and was on my way back to Covenant Woods.

   Thursday afternoon, I hopped in the shower. OK, I didn’t hop in, but I managed to get in without much difficulty, showered without difficulty and got out of the shower without difficulty. Towel in hand, I stood with the commode in front of me and the wheelchair behind me, drying the places I couldn’t dry while sitting on the shower chair. When I was sort of dry enough and ready to get back in the wheelchair, my feet wouldn’t move. 

   It was as if someone had sneaked in and covered the bathroom floor with glue, probably because my singing in the shower disturbed them. My singing has disturbed people for years. I was once a member of the Ruthfred Lutheran Church children’s choir and vaguely recall a time or two when Pastor Dennis asked me to just move my lips.

   So there I was in the bathroom, naked and my feet stuck to the floor. To get to the wheelchair I had to take a step or two backwards. Try as I might, I couldn’t make my feet take that step. Plan B was to pivot as best I could, sit on the toilet seat, curse lustily and hope I could lean forward enough grab on to the wheelchair to brace myself when I was ready to get back up. But I couldn’t manage to get on the toilet seat. The right foot finally moved just enough to get me twisted into a position I would have had difficulty getting out of if I had had all my faculties.

   My legs were weakening, and they’re not all that strong to begin with, and my arms had had just about enough of trying to hold the rest of me up. Rather than wait for my limbs to give out, I lowered myself onto the floor as gently as I could. My phone was within easy reach; it always goes to the bathroom with me. “At least put on your underpants,” the angel at one ear said. “Hell, no one will notice. Remember the pediatric catheter?” the devil at the other ear said.

   Heeding the words of the angel, I opted for modesty and quickly realized it was going to require some hard work. I grabbed my underwear, which was on the hamper. Like my bladder, my legs are at their worst when I need them most. My left leg was stiff as a board, and the right leg was nearly as bad. I couldn’t lean forward far enough to get my foot in a leg hole, and the neither leg would let me bend it enough to bring it closer. Finally, the right leg relented enough to make it possible get the underwear started. Fortunately, the walking cane I now use to pull things to me was in the bathroom, not by the kitchen sink where it usually is. With it I was able to get the appropriate leg hole to open up over my left foot and fall into place. Then I used the cane to pull the underpants up to my thighs. By lifting one buttock and pulling, then lifting the other buttock and pulling, and repeating the process five or six times, I got the underwear up to where it is supposed to be worn.

   I made the call to the front desk, and moments later, Steve, one of the maintenance men, was at my door. He came in, slithered around the wheelchair to get into the bathroom and hoisted me back on to the chair. Pat, one of the aide’s, came in to make sure I all right. Then James, another of the maintenance men, appeared. With his help, I got my socks, pants and shirt on. James had one of my shoes in hand. But I wanted to lie down for a while, and he helped me get on the bed.

  Al is telling a far more exciting version of this tale. Yesterday, Stacie, one of the servers, came up to me and said, “How come you didn’t say anything about falling? Did you hurt yourself? Are you OK?” I told her about getting into an untenable position and lowering myself to the floor in order to avoid falling. “But Al said . . .”

   One day, a week or so ago, I was able to pull myself away from all the excitement here at Covenant Woods and use my time constructively surfing the net. On huffingtonpost.com I found a quiz: “Can You Catch These Common Grammar Mistakes.” I wasn’t sure I could, but there wasn’t anyone around to embarrass myself in front of. So, what the heck, I took the quiz.

 The results: “15 out of 18 – This isn't your first grammar quiz, is it? You're a natural. It's nice to see someone with a fine appreciation for the English language. Keep on using words correctly.”

 

   The plethora of pedagogues who struggled without success to teach me the fine points of English grammar will no doubt blame my high score on declining standards.