Not a Poster Child

by Francine Falk-Allen

  A technician made x-rays of the foot and then had me wait in the exam room in the flimsy gown, my skinny polio leg getting colder by the moment as I waited for the doctor.

  He finally walked in, and without looking at me said, “Hello, I’m Dr. X_____,” and sat his young self down at the computer with his back to me. His first comment while checking my input form, without even having examined my leg, was, “What makes you think you had polio? We don’t think most people who think they had it actually did . . . and we don’t believe in post-polio.”

  I would have gotten up and walked out, but I was undressed and needed my underarm crutches with my hurt foot; I couldn’t just hop down and take off. I defended myself instead, saying, “I was diagnosed with poliomyelitis in 1951 and hospitalized in a polio rehab facility for six months. And if you look, you can see that this foot is paralyzed and the leg is atrophied, typical of polio.”

  Still looking at my X-ray on his computer screen, Dr. X_____ said, “It looks as if the foot has been cracked previously.”

  “Yes,” I said. “That was a previous fall; one of many.”

  “It looks like there is no new break,” he said, while looking at my actual foot for a moment. “Just a sprain. Use the crutches, stay off it until it feels better, keep it elevated, and ice it. Take ibuprofen if you need it.”

  “Yes, that’s what I always do. I just thought I’d get it checked out.”

  “You can make an appointment for a follow-up in a few weeks,” he said. He nodded goodbye with a perfunctory half-smile and left.

  I dressed, and crutched out to the car.

  It is common for doctors to dismiss questions about post-polio effects or post-polio “syndrome,” but even knowing that, I always find it infuriating. It probably goes without saying that I didn’t go see this doctor again, even for follow-up.

  A few years later, in 2009, I was suffering from tendon stress and pain and couldn’t find a doctor locally who knew anything about those conditions in polio patients, specifically regarding my strong leg and foot. So I looked for a post-polio support group—and I found one in Sonoma, the next county up from me. Just one problem: they had stopped meeting because so many of them were elderly, tired, and debilitated. Most did not have the energy to manage, run, or even attend a group.

  I went to Sonoma’s swan song luncheon with about forty polio survivors, some there with their spouses. It was a little strange to be in a room in which nearly everyone limped or was in a wheelchair! (Stranger still, though welcome, when I later attended a polio patients’ conference of a couple hundred.) It was inspiring to learn that many polio survivors live into their nineties and enjoy life, despite having to use a wheelchair or walker. They may have a harder time getting around than other elderly people, but they are still getting around. I had not known previously whether simply having polio was going to mean a shorter life span. This can be true for those who need to use ventilators to breathe well, but it’s certainly not the standard for the rest of us.

  At the luncheon, I gathered names of folks who lived near me and might be interested in being in a group again. I found a location and put the word out to an email list and some physical therapy and doctors’ offices, and started Polio Survivors of Marin County.

  We meet quarterly to discuss physical issues and remedies, and also psychological or family problems that can result from disability. Generally, we haven’t socialized other than a bit of chat before or after the meeting, or occasional emails between individuals, but we think of each other and contact one another when a news article or other piece of information is relevant. In one case, a member was having difficulty with Social Security and her health insurance program, and we rallied and found resources for her, including free legal advice. Since some of the people in the group are overweight, a hazard of not having full mobility, it was particularly inspiring when one member went on an anti-inflammatory diet, lost nearly a quarter of her weight, and found that her fibromyalgia also disappeared. I find speakers to address the group on topics related to polio, disability, and aging, when possible.

  Even in the 1970s, there were few doctors who knew anything about the repercussions of polio, especially outside of major metropolitan areas—and today, their numbers have dwindled even further.

  These days, I have an intelligent and gentle primary care doctor, Meenal Lohtia, who was born and schooled in India and probably has a greater understanding of polio than most American-educated doctors, and an orthopedist who is a “foot star,” the staff physician for San Francisco Ballet. But I believe I’m his only polio patient. My only true polio doctor is a rehabilitation physiatrist whose office is over one hundred miles away from me.

  This distance issue is common for polio survivors. I’ve only been able to locate a couple of polio-educated doctors (other than my physiatrist) in northern California who actually take polio patients. There may be more in Southern California, since the epidemic was worse there, but where I am, it’s a struggle to find doctors who know what they’re doing when it comes to polio and its aftereffects.

  35

  —

  deal with it

  I had a period of a couple of years—after the cancer scare, plus the two years it took for me to heal as much as was expected—where my physical life was fairly stable, aside from a lot of fatigue from working during the demanding tax seasons. But in 2010, after I had sold my tax practice, I slipped and fell and badly injured my polio knee—just two or three days before Richard and I were to leave on a trip to Germany.

  I managed to get in to see a new-to-me orthopedic surgeon referred by my former orthopedist. He thought I had torn my AC ligament, inside the knee, because I was in such acute pain. I could still go to Germany, he said, but I was probably going to need surgery, so I would not be able to put any weight on it for the entire trip.

  Being on underarm crutches for a big trip clearly would not work. I pictured staying home and having surgery while Richard was working in Europe. Ick.

  I miraculously was able to get an MRI the next morning to identify the damage—Hallelujah, my ACL was not torn. My pain was probably worse than most people have with a sprain.

  The good thing that came out of this was a pair of Lofstrand Canadian arm cuff crutches the orthopedist recommended, which have a hinged forearm cuff and are basically balancing supports that reduce fatigue over distances. They also can be used to help take weight off a foot or leg, though they are more tiring than underarm crutches when used this way since all the stress is on the arms and hands, whereas with underarm crutches, the rib cage supports some of the weight. The Lofstrands took a little getting used to. I found that I was also a lot slower with them than I am with just a cane or underarm crutches. As with the little Kenny sticks, I put one foot and the opposing crutch forward, and then the other foot and crutch. Since my knee was very painful, that also slowed me down.

  However, when I wanted to pick up a cup or hand my ticket or passport over, I didn’t have to take them off my arms and lean my crutches on something while I stood on one leg. I also later found that in a store, I could take things out of my purse, use my credit card, and write checks at the market without removing them from my arms.

  I got a flexible knee brace and went to Germany with the Lofstrands. Not an easy trip, but the young hotel concierge gave me another useful suggestion: gel-padded bicycle gloves. I wear them when I’m going to go more than a block or so with the Lofstrands, and they diminish soreness in my hands. (They also look cool and athletic, and protect my hands when I’m using my motorized trike.)

  Prior to this knee injury, I had spent about six years of my life on crutches: first at three, in and after the hospital, in order to be able to walk at all; then after my surgery at thirteen; and then periodically as a result of my myriad injuries. Now I use the Lofstrands for distances of more than a half-block if I don’t have my scooter, so they are a fixture in my life. Crutches are really limiting, and I’ve had my back “go out” (pinched nerve, act
ually), after using underarm crutches for a few weeks. That hurt more and was more debilitating than the initial foot or knee injury.

  I wish everyone would try using crutches for maybe an hour, so that more doors would be opened when a person on crutches tries to enter Starbucks or the doctor’s office. Doors are difficult: I try to swing them open as far as I can and then quickly stick my crutch down in front of the door as a stop, so I can get myself through, but if I’m carrying files, groceries, or anything else, this is frustratingly challenging. I can’t carry anything without a handle when using two crutches, and it’s imperative for me to use a crossbody purse. I’ve learned to carry less as a result. You will rarely see me with a tote.

  People who have to use crutches don’t get a break. They have to use them for a week, a month, several months, or forever, and they are tiring and limiting. But they allow us to walk farther than we could without them—or, in some cases, to walk at all. Those rolling kneel scooters are great if you’re able to use them, but they don’t work for all of us.

  Unfortunately, not long after the pre-Germany knee injury, I also started experiencing joint pain. I had been taking statins for high cholesterol, and they can be pain culprits. (I was really glad at this point that I’d skipped the AIs post-breast cancer.) My primary care physician and I tried several different statins, and some were worse than others. Finally, I stopped all of them, and most of my joints returned to a normal, pain-free state—but even sans statins, I was left with stabbing pain in my thumbs, especially my right one (I’m right-handed) and in the top of my strong foot.

  I went after a solution to my thumb pain first, because I could barely use my right hand some of the time. Given my new role (after selling my business) as full-time home manager, I really needed to be able to lift a frying pan without dropping it and do the grocery shopping without crying out when I put something into the cart (I was occasionally alarming other shoppers).

  I went to a hand therapy center, where they told me that I appeared to have arthritis in my thumbs. They made a custom splint that restricted the position of my right thumb, and also made me a great little rubber-covered wire support to wear over my gardening gloves. I got a hot wax machine to relieve the pain, and a prescription for Meloxicam (generic Mobic) which is like heavy-duty Advil, plus one for Voltaren gel, a non-steroidal anti-inflammatory drug (NSAID) rubbed directly onto the joints, which is very effective.

  I was still in a lot of thumb pain and having difficulty using my hand(s) for necessary activities, even after starting the NSAIDs, so one of my hand therapists referred me to an expert hand surgeon in San Francisco, Greg Buncke. He and his dad are at the cutting edge of serious hand surgery: they have made big toes into thumbs for people who lost a thumb and reattached severed limbs.

  Dr. Buncke x-rayed my hands and found, yep, arthritis. (Arthritis is common in polio patients, in legs, back, and arms. It’s often caused by normal wear and tear on the cartilage in joints, especially by overuse.) Both Dr. Buncke and my hand therapists have told me that arthritic hands do not necessarily look abnormal. There are people with badly misshapen hands who experience no pain, and people like me, whose hands look almost normal but are in a lot of pain.

  We decided that the best solution for the hand problem was cortico-steroid shots directly into the thumb joint. God-awful painful; exquisite, you might say. I cried every time I went, which was every five months for four years. I would take half a codeine and four Advil before I arrived at the office, and the injection still hurt like hell.

  These shots are controversial; many doctors tell their patients that they can only get them for a while and then they must have surgery to remove the thumb joint and replace it with a curled-up tendon (like an anchovy) taken from the wrist. These doctors also say that the shots deteriorate the thumb joint. Some say the limit is ten or so shots in your lifetime. Dr. Buncke, however, has been giving these shots for nearly thirty years to more than one hundred patients, and he has never had anyone get a deteriorated joint from the shots, though he has operated on several people with deteriorated tissue whose doctors put the injection into the tendons or ligaments near the joint in error. He also feels that the cortico-steroid reduces inflammation, which is a cause of arthritis.

  So the shots, when done correctly, may stave off further damage. He says no more than three a year, and I usually made it with just two—lucky for me, given the acute pain. But as of today, my pain level has become manageable, my thumbs seem stable, and it’s been more than four years since I had my last shot!

  Having more or less dealt with regaining the use of my right hand in 2010, after a year of pain and medical consultations, I began once again looking for a local polio doctor—this time to address the pain in the top of my left (strong) foot.

  By this point, that foot had been painful for more than a year. Anyone I spoke to in the medical profession now considered it chronic and not a result of injury, and the question kept coming up, whether stated aloud or implied: “Why did you wait to address this instead of coming in when it first hurt?”

  At this I would retell the story of how the pain in my foot was not keeping me from performing daily functions as my thumb pain had been, so I had handled that first. I respect doctors, but sometimes they seem to regard problems as occurring one at a time. Perhaps geriatric doctors don’t think in those terms.

  Through a few polio organizations (Post-Polio Health International in St. Louis, Northern California Post-Polio Group, and San Francisco Bay Area Post-Polio), I learned that the best of two or three northern California doctors with knowledge of polio was Dr. Carol Vandenakker-Albanese in Sacramento, about two hours away.

  Rough estimates from 2005 indicate that there are approximately 400,000 US polio survivors who experienced paralysis— maybe by now, only about 334,000 (based on a rough extrapolation I did from death rates in the US population of people 55–85 years of age). In 2006, there may have been about 700,000 total polio survivors with or without initial paralysis in the US, maybe more if you count the people who had it and don’t know they did. Maybe as many as one million. So that would leave us with perhaps 630,000 survivors in 2016— maybe closer to 900,000. Sounds like a lot, but those figures, considered low for a medical population, put us in the “rare disease” category, and because we are still dealing with new after-effects, it’s no wonder Post-Polio Health International does a “We’re Still Here” campaign every fall.

  Further extrapolating has led me to think there may be about 9,000 polio survivors in the San Francisco Bay Area who had paralytic polio, although it may be lower; we have a lot of hills around here and for polio folks, flat is beautiful. But you’d think that in a population center as sophisticated as this, with at least a few thousand polio patients, there would be a few polio specialists. I do understand the reason for this lack, however: we are almost all older and dying off at a rate of around 10 percent a year, so it’s a niche clientele, and difficult to support from a cost standpoint. Plus there’s really no drug to prescribe that will cure us, and surgery is usually not an option. There’s no quick fix.

  I did get an appointment with Dr. Vandenakker. She has her polio clinic only on Friday mornings, however, and it would be three or four months before I could get in to see her.

  While I waited to see Dr. Vandenakker, I managed to get an appointment with the same orthopedic surgeon who had assisted me with my badly sprained knee prior to the Germany trip the year before.

  Our meeting was genial but strange. I was glad to see him again, since he’d helped me before and I was now well aware how few orthopedists had any knowledge of polio.

  “Hello!” he said when he walked into the examination room. “What have you done to yourself this time?”

  “Well, it’s not an injury,” I said. “I’m having extreme pain in the top of my strong foot, right here at the apex of this tendon.”

  “Apex!” He laughed. “What are you, a math major?”

  “No, an accountant,” I sai
d. “That’s just the way I speak.”

  “Okay, well, let’s take a look at it. Walk across the floor for me.”

  I took a few steps back and forth.

  “You have a fallen arch in your left foot,” he said. “And the tibialis anterior tendon, the one that attaches at the top inside bone of the foot, is swollen and irritated from working to support the arch. You are also pronating that ankle, and that exacerbates the foot problem.”

  All this made sense. I also knew that the strap on my Mary Jane was irritating the tendon—but Mary Janes are the primary shoes that will stay on my paralyzed foot, so my strong foot pays the price for that.

  While I sat on the table, he pulled on my feet and looked to see that my hips were straight. “Wow, you’ve got quite a length difference,” he said, eyebrows raised. “It looks like about two inches.”

  “Yes, that’s right, exactly two inches. It’s been that for all of my adult life.”

  “It’s really a shame about the length difference,” he said. “Perhaps the tibia in this leg”—he pointed to my polio leg —“could be cut and stretched to get some length out of it.”

  “But wouldn’t it take an awfully long time to get even a small amount of length?” I asked, surprised at the suggestion.

  He mused and nodded slowly. “Yes, it could take a while, at least months . . .”

  “And wouldn’t I have to be in bed the entire time?”

  “Well, yes, most likely.”