An unlucky 1 percent of people who experience polio have permanent paralysis. About 75 percent of polio patients had non-paralytic polio, though about 15 to 25 percent of that group did experience temporary paralysis. There were also far more people who were asymptomatic carriers or had another type of polio, referred to as “abortive,” which also did not cause symptoms. These four types account for all those stories about older relatives who “had polio, and they got over it; they had no remaining problems with it.”
In recovery and beyond, we use other motor neurons to control the muscles polio left weak, or work other parts of our bodies—in my case, for example, my strong leg does nearly all the work when I walk, bend, or squat. Over time, generally in thirty to fifty years, the overworked compensating neurons also start to wear out. This is true for all aging humans—but we polio survivors have less neurons going into our senior years. And this includes those who did not have permanent paralysis.
Our sensory neurons, located all along the back or posterior of the spine, control feeling. Though polio patients may not be able to move a particular set of muscles, we can feel soothing, pleasant touch, and pain, to its fullest, just like everyone else. From my discussions with other polio patients, and from what I have read, it seems that we may have lower pain thresholds than most people. Possibly the sensory neurons were heightened, perhaps to compensate for the danger perceived by the neurological system in having damaged motor functioning. This is not something I’ve seen in any of my reading; it just seems logical to me.
It’s been suggested to me that I get an electromyogram (EMG) to see where different pain signals in my body are coming from and find out if they are specifically related to polio. But this process is tortuous for a person with a very low pain threshold such as me, and the information gleaned would probably be mostly interesting to the doctor(s). My primary care doctor even told me that she once prescribed an EMG for a non-polio patient who did not expect the extreme pain, and that patient promptly fired her as her doctor.
The treatments generally prescribed for post-polio pain are exercises (mostly stretching and core strengthening), pain medication, dietary moderation, massage or other manipulative body work, rest, ice packs, cortico-steroid shots, and surgery, which does not promise relief.
I have managed to mostly control my back and tendon pain with a combination of non-invasive treatments. MRIs have shown problem areas in my tendons, wedged disks and vertebrae (from my two-inch limp), and narrowing of the spinal canal (“canal stenosis”) that has resulted in a slightly pressed nerve, causing my back pain.
Other polio patients I know who had undiagnosed symptoms and got an EMG told me afterward that it was either “not that bad” or “pretty awful.” Their doctors were able to tell them, based on the EMG results, whether their issues probably resulted from polio, but their treatment options did not change.
Thanks, but I’ll skip the torture.
Not too long after Richard and I moved to San Mateo, Richard’s company went public, and we made a sizable donation to Easter Seals. I sent a note telling them that if it had not been for their organization funding my physical therapy in 1951, I might have lived my life in a wheelchair, and I was now happy to be able to give them a gift in return.
After receiving my letter, Easter Seals called me and asked if I wanted to visit their pool therapy facility, Timpany Center, in San Jose, about an hour south of our home. It is a remarkable place for all disabled people who can benefit from water exercise: polio, MS, arthritis, fibromyalgia, intellectual disability, the works. On my visit, I was so impressed and inspired! There were several physical therapy rooms with attendant tables, weights, balance balls and other equipment, and men’s and women’s locker rooms. The pool was almost Z-shaped, nearly as big as an Olympic pool, and kept at about 90 degrees F so poor circulation would not cause chilling for seniors or people with atrophied limbs. There was a long, wide, gently sloped ramp in the shallow end for entering the pool, even facilitating being pushed in a wheelchair, followed by a shallow area for walking, stretching, and other exercises. The other leg of the Z was a deep-water area for swimming and doing kicks while floating with a noodle. Wow. As a swimmer, I was envious.
The head of physical therapy asked me if I wanted to come use the pool and they could teach me a routine, and I accepted.
When I had learned my water exercise set, I found a rehab doctor in San Francisco at St. Mary’s Hospital who had been trained by Dr. Stanley Yarnell, a retired polio expert. I made an appointment with the young doctor and traveled to San Francisco to meet with him and his staff. They told me to bring my swimsuit.
Dr. Yamamoto was quiet but friendly. He tested my muscle strength and made some notes. He reviewed the water program as it had been written out by the Timpany folks, and said, “This looks good. I’d like you to meet with Margo Falk, our physical therapist, to see that it is appropriate for you. But before you do that, what kind of diet are you following?”
“I have recently reduced the number of simple carbohydrates in my diet and am trying to eat more protein and vegetables so I can get my weight down,” I said. “I have gained twenty pounds in two years; I have been commuting two hours a day so am doing far more sitting than I used to.”
He nodded. “Most polio patients do better on a high-protein diet. You need to be able to rebuild your muscle more than the average person since there is so much work for parts of your body that are compensating for weaker muscles, especially when there is paralysis. This is partly because protein is integral to regenerating muscle growth, but also, without walking much, you don’t use up the carbohydrates and begin to gain weight, especially with aging.”
(Of course, longevity has been proven to increase with a low-protein, high-vegetable-content diet. Toss a coin.)
He asked if I was having any new problems with regard to polio effects.
“Oh, yes,” I said, “I am living in a two-story house now, and with my recent move and the added commute, I’m much more fatigued than I used to be. I read a magazine article this year in Scientific American about post-polio, and it seems that I do have new weakness and fatigue and occasional pain.”
“I think you do have post-polio sequelae,” he said, “especially since you say these symptoms have worsened recently and it has been about fifty years since your onset. But let’s see if your exercise program will help you out by strengthening your muscles without fatiguing them. We also have an occupational therapist here and I’d like you to make an appointment with her, to review seating and work habits and other assistive devices that might make your life easier.”
I donned my suit, was introduced to Margo, and went with her to a tiled room that contained a small warm exercise tank. I climbed down the stairs into the tank.
“Okay,” Margo said, “let’s see what you’re doing.”
I did every exercise on the list for just a couple of repetitions.
Margo nodded enthusiastically at the end of the twenty-minute mini-workout. “This is an excellent program,” she said. “It’s giving you a good all-over workout, and if you don’t overdo it and increase your time and repetitions only after a particular exercise becomes easy, I think it will help you regain some strength. If you feel tired, or have any pain at all, stop and reduce the repetitions or the time.”
I began reading more on post-polio, and the most helpful info I found was contained in a little book titled Managing Post-Polio, by Lauro Halstead, MD. One of the many useful suggestions in the book was that for any exercise program, a polio patient should determine, for each exercise, the maximum number of repetitions or time that the exercise can be done without fatigue or pain. Once that max was established, Dr. Halstead recommended doing 20 percent of the max for each exercise to begin with, then increasing that very gradually—by perhaps 5 percent at a time—when the 20 percent became easy.
I continued my pool work at the Mickelson Arthritis Center in San Mateo, a wonderful warm pool with a ramped entrance. (There
are very few warm therapy-centered pools, even in the progressive San Francisco Bay Area.) Mickelson was full of very old people, and it was not easy to get my laps in with so many in the pool who were easily frightened by vigorous activity. But the facility was perfect for the rest of my exercises, and the pool was near our house. I started out in late 1999 doing about forty minutes of exercise twice a week, and by the end of 2002 was doing about two-plus hours a week.
Dr. Halstead’s book also confirmed what I had suspected: our two-story house was a major culprit in my new weakness and fatigue. It takes ten times more energy to climb stairs than it takes to walk the same distance on a flat surface. This is why step aerobics are so effective in weight loss and strengthening leg muscles—unless you are a polio or MS patient. Dr. Halstead’s recommendations were basically common sense: don’t duplicate efforts in daily activities, store items you use near the place where you use them at home or work, and don’t bother with things that don’t matter that much, such as making the bed every day.
That was a hard one to let go of, having been taught that I could not leave the house as a child until my bed was made and my toys were put away. Neatness is a superb habit and I kept up with it fairly well throughout my life, always happy to come home to a tidy house, until we lived in that two-story house. Now I have admittedly become a little sloppy, and clutter is an issue in several areas of my home, especially since I do most of our non-grocery shopping from catalogs. But I like to save my energy, as Dr. Halstead recommends, for things that are either essential to me (working, cooking, gardening, shopping, exercising, managing our finances and house repairs, and taking care of the cats, Richard, and myself) or fun (writing, watching movies, reading, listening to or making music, traveling, and hanging out with friends). I can’t wear myself out by also being ready for House Beautiful to show up with a camera—and that, I think, is not a bad philosophy for the last third of anyone’s life.
Two or three years ago, I heard an Italian polio research doctor speak at a polio conference. His study has shown early results indicating that those who experience PPS often have a very low, non-contagious level of active polio virus still in their blood. He has found that giving his European patients a polio vaccination has stopped further advancement of the PPS symptoms. (My question about this protocol is whether these patients ever had inoculations as children or young adults after they’d had polio, as we all did in the US.) I tried to find a place in the San Francisco area that tests for presence of live polio virus; one said they did, but when I got the blood test results, they had only tested for polio antibodies, which indicates one has been vaccinated, and we already knew I had been. So I recently got a polio booster shot and am hoping for the best. It can’t hurt and may slow the process of weakness, fatigue, and pain I am experiencing.
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moving on
Richard and I kept our agreement to move back to Marin County, where my work and many friends were located, within five years of marrying. Marin is full of beautiful hills, and most neighborhoods that were close enough for Richard’s commute to south of San Francisco were hilly, foggy, or both. Our search for a one-story house on reasonably flat land that either had a pool or would accommodate one took two years. Then, because we each needed an office and wanted a guest room, and I wanted the kitchen oriented to the back of the house, and he wanted a media room for our stereo and TV, we added on 1,000 square feet, totally gutted the original house, and rebuilt it.
I had a surprising encounter with our architect during the remodel process. I may have put her on the defensive to begin with, because the contractor we’d hired had seen the plans and faxed them to me, and over the phone the architect said she was unhappy about this.
“I like to show the plans to the client myself, Francine,” she told me.
“Oh,” I said, surprised. “I asked John to fax them to me. Since I have architectural drawing background [minimal college-level], I wanted to look them over in advance and be prepared with questions.”
She was a bit testy when we showed up at her office and sat down to go over the plans.
“I really like this plan number three you have come up with,” I told her, leading with the good. “I think it will be very livable, especially since each part of the house has a circular traffic pattern.”
Later, we were discussing the back of the house and a potential landscape and patio, which she was not actually going to design, and she said, “You’ll want to have wooden decks with stairs going out from the back door.”
“Oh, no,” I said, “we currently have a wooden deck and stairs and it’s been awful for me. Because my foot and ankle are paralyzed, I can’t have an uneven surface as we’d have with a plank deck. When I’m barefoot, which I would be around our pool, they are a hazard for tripping and splinters. We’ve decided to have sloping cement sidewalks, ramping down from the house to the backyard, and no stairs.”
I was envisioning something textured and non-slip and clay-colored, not just flat grey cement. But I think from my comments she may have pictured ramps with pipe handrails, like a hospital would have. We had already discussed widening all the doors in the house and creating a master bath shower that would eventually allow a wheelchair, if necessary.
Before I finished talking about the back sidewalks, she exclaimed, “Francine, you have to think about the value of your house and what the next buyer is going to want. You can’t expect it to be handicapped heaven!”
I felt stung. I didn’t breathe a word for the rest of the discussion. Richard, my hero, knew I was in a state of mild shock and took over for us. He asked a few questions while I summoned up all my emotional resources to keep from crying or giving her a tongue lashing. I did cry a few minutes later in the parking lot, alone with Richard.
He was quietly furious. I asked him what he thought we should do. We’d invested a few thousand dollars into these plans; I did not see how we could work with her now, but I also didn’t know the protocol and whether we could use the plans if we did not retain her for the remodel.
The next day, Richard sent her a certified letter in which he told her we did, in fact, want our home to be “handicapped heaven.” Our purpose in remodeling was largely to allow me to live in an easier way and accommodate my disability as I aged. He told her that she had to tone down her attitude or we would find a different architect, as expensive as it would be—in money and in time. But we were prepared to do that.
We didn’t hear back from her for over a week. Finally, I called, and she was the picture of politeness.
“Sorry the meeting didn’t go well,” she said. “I really am not used to the client seeing the plans in advance.” No mention of an apology for her deeply offensive diatribe. She wanted the job, however. The total fee, we already knew, was going to be nine times what we had paid for the initial floor plan.
Nearly a year later, when I was doing the walk-through of the rebuilt house with her, I told her that the one thing in which I was a bit disappointed was that she had made the living room smaller (though cozier) and the front hall larger, which I felt was going to be wasted space. This had not been pointed out to us and we had not noticed the change when reviewing the plans, until the walls were already moved and rebuilt.
“Well, I wanted to make sure you had room to turn your wheelchair around,” she replied, and walked away.
That year before the move was another stressful one. We remained in the two-story house during the remodel, and I continued to commute two hours a day. I’d be on my hands-free cell phone with the foreman every morning while I drove to work, managing my life’s biggest art project, and several times a week, I went to the new house to inspect, make choices, or answer questions.
In the end, we did get a lovely floor plan (though it was not precisely what we’d wanted), and we succeeded in moving back to Marin almost exactly on schedule—five years and two weeks after we had moved into the two-story San Mateo house.
32
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taking care of business
A couple of years before our move to Marin, in 2000, Richard encouraged me to get out of accounting. The hours during half of the year are exhausting, and he was worried about the toll the stress was taking on me.
I’d had a complicated relationship with my work over the years. I was so clumsy with public general ledger accounting for the first six months I worked in a CPA firm that I was the employee left with no job when the firm split up, but I gradually sharpened my skills, freelancing for several CPAs, until people started asking me to do their taxes. Between doing that, having a few bookkeeping jobs, and managing the Sufi camps (big adult summer camps with a population of around three hundred), I gradually built up a practice of tax and bookkeeping clients—and I found that I liked working for myself so much that I couldn’t just drop it and get a full-time job someplace, though I had nosed around for one from time to time. I took the CPA exam a couple of times and nearly passed it, but was sick to death of studying, especially accounting. So I took the federal Enrolled Agent exam and got that designation, which suited me, since I preferred dealing with tax and its infuriating changing laws. It was constant problem-solving, and I enjoyed doing tax planning to save money for my clients.
Not a Poster Child Page 23