Jun 20 2012

Polio Perspecvtive

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Polio Perspective – August, 2017

Millie Malone Lill, Editor        Wilma Hood, Publisher

In This Issue

Diagnosing Post-Polio Syndrome in the Elderly, a Case Report

by Morolake Amole  and Nadine Khouzam-Skelton

Bruno Bytes

by Dr. Richard L. Bruno

Chiropractic:  A Crock, a Crack or a Cure

By Dr. Richard L. Bruno

Excerpt from Chava Willig Levy’s Book A Life Not With Standing

by Chava Willig Levy

Abandoned

by Millie Malone Lill

Web Corner

Other Polio Newsletters

A Little Bit of Humor

******************************************************

Diagnosing Post-Polio Syndrome in the Elderly, a Case Report

by Morolake Amole  and Nadine Khouzam-Skelton

Abstract

Poliomyelitis is a disorder of the nervous system caused by an enterovirus. There are many survivors who, years later, develop a little-understood condition called Post-polio syndrome. Post-polio syndrome is a group of delayed sequalae of polio infection that can cause paralysis and bulbar symptoms in patients with a history of polio infection who have had a prolonged symptom-free period, often greater than two decades. Diagnosis of post-polio syndrome is difficult in the geriatric population because many of the symptoms overlap with other disease processes affecting older individuals. An extensive workup is necessary to exclude more concerning etiologies. Furthermore, several symptoms can be attributed to normal ageing. We present the case of an elderly patient with a history of poliomyelitis and multiple comorbidities who presented with complaints of weakness and fatigue.

1. Case Presentation

A 78-year-old male with a past medical history of hypertension, coronary artery disease status post myocardial infarction requiring stent placement, asthma, gastroesophageal reflux disease, and bulbar poliomyelitis presented to our Primary Care clinic for evaluation of worsening fatigue, exertional shortness of breath, dysphagia, chest tightness and generalized weakness.

The patient reported a diagnosis of poliomyelitis in 1956 after noticing flu-like symptoms and weakness. His course was complicated by dysphagia requiring tracheostomy placement, but no iron lung therapy was required. He reported appropriate recovery from his condition with few noticeable sequelae.

Vitals signs were within normal limits. Physical exam revealed an elderly male, alert, oriented, in no acute distress and with non-labored respirations. Neurological exam revealed mild bilateral upper extremity weakness. Sensation and reflexes were intact; positional and balance testing were normal and there were no cranial nerve abnormalities. Remaining cardiopulmonary, abdominal, musculoskeletal and skin exams were within normal limits. Routine blood testing revealed no abnormalities.

More extensive outpatient workup was initiated to elucidate possible etiologies of the patient’s symptoms. High Resolution CT Scan showed eventration and elevation of the right hemidiaphragm but no evidence of honeycombing, ground-glass opacification, suspicious lung nodules, bronchiectasis or bronchial wall thickening. Pulmonary Function testing was performed and results showed very mild restriction with a total lung capacity of 79%. A sleep study was also ordered and revealed mild obstructive sleep apnea.

Electrocardiogram revealed sinus rhythm and no ST-T wave abnormalities. Stress Echocardiogram showed an ejection fraction of 70%, no signs of ischemia and a non-reversible infarction in the basal inferolateral region that appeared unchanged from prior stress testing. Esophagogastroduodenoscopy (EGD) was also performed to further investigate the patient’s complaints of dysphagia. EGD showed a hiatal hernia in the esophagus as well as an esophageal schatzki’s ring requiring balloon dilation.

A diagnosis of post-polio syndrome was made given the patient’s distant history of poliomyelitis, mostly negative multi-system workup and presenting signs. Auto-pap was issued to the patient for the treatment of sleep apnea. Physical therapy was recommended with an emphasis on the avoidance of overexertion.

2. Discussion

2.1. Poliomyelitis

Poliomyelitis is caused by an enterovirus transmitted fecal-orally. Once inside the body, the virus can cross into the central nervous system (CNS) and affect the motor neurons of the spinal cord, brainstem and motor cortex, leading to paralytic poliomyelitis. Polio infection initially presents with malaise, fatigue, fever, sore throat, nausea and vomiting. Symptoms can then progress over the course of several days to include myalgias and muscle stiffness/spasms. In some patients, symptoms progress even further to paralysis.

The type of paralysis produced depends upon the portion of the CNS affected. For instance, spinal polio is caused by viral infiltration of the anterior horn of the spinal cord, and bulbar polio is caused by viral damage of the bulbar portion of the brainstem. Spinal poliomyelitis leads to asymmetric paralysis of the limbs due to spinal cord motor neuron damage. Bulbar polio, a significantly more rare form of poliomyelitis, affects the cranial nerves and thus the muscles they supply leading to respiratory difficulty as well as trouble with chewing, swallowing, and controlling facial movements [1].

2.2. Post-Polio Syndrome

Post-polio syndrome is a phenomenon that is characterized by muscle weakness and fatigue in patients with a history of poliomyelitis with complete recovery and who have had a long symptom-free period. In such patients, the key to diagnosis involves the history of polio, the presence of classic symptoms of motor neuron disease and the exclusion of other diagnoses [2]. The exact prevalence of post-polio syndrome is not known. According to the National Institute of Neurological Disorders and Stroke (NINDS), researchers have estimated that post-polio syndrome affects approximately 25%–40% of polio survivors.

The exact pathophysiology of post-polio syndrome is unknown, however, there are several theories that have been proposed. One theory is that during the acute infection, excess damage of motor neurons leads to the development of collateral motor neurons. Over time, it is impossible to maintain innervation and capillarisation of these compensatory motor neuron sprouts. The result is muscle weakness, muscle pain and easy fatigability. Another theory is persistence of polio infection. Several studies have reported the presence of poliovirus genome fragments in the cerebrospinal fluid (CSF) of patients with post-polio syndrome. A third theory is that there is a delayed immune response to the poliovirus, leading to chronic inflammation and thus persistent symptoms of poliomyelitis. This theory proposes treatment with immune modulators as means of combating the chronic inflammation [3].

Another proposed theory is that muscle weakness and fatigability may be the result of the normal ageing process causing symptoms in patients with post-polio syndrome [1]. It is possible that most of the symptoms experienced by this cohort of patients (elderly patients with a history of poliomyelitis infection) may be, mostly or in part, due to senescence.

Several proposed diagnostic criteria exist for post-polio syndrome, but most are based upon the criteria proposed by Halstead in the 1991 paper Assessment and differential Diagnosis for Post-Polio Syndrome. Criteria for the diagnosis of post-polio syndrome are as follows: (1) Prior diagnosis of polio must be confirmed; (2) There must be a period of functional and neurological stability; (3) There must be the onset of new neurological symptoms like weakness or fatigue; and (4) There must be an attempt to exclude of other medical diagnoses that may cause similar symptoms [4].

No specific mode of treatment exists. Treatment is mainly supportive, focusing on physical therapy and palliation. Physical therapy is used to build endurance but also focuses on avoiding overuse. Other therapies are aimed at improving quality of life by adding aids such as walkers. There is little in the way of pharmacologic treatment for this condition. Psychotherapy may also be beneficial given the significant psychological impact that poliovirus as well as its sequalae have on patients [1].

2.3. Primary Care Management of Post-Polio Syndrome in the Geriatric Population with Comorbidities

Post-polio syndrome is a fascinating disorder for the geriatric population. Its prevalence now in the United States can be correlated with 1950s epidemics. However, it is a difficult diagnosis in the ageing population because many of the classic symptoms of the disorder overlap with other disease processes affecting older populations, thus necessitating the need for extensive outpatient testing to exclude other plausible diagnoses. In patients with a history of heart disease, cardiac testing may be necessary to exclude acute coronary syndrome as the etiology of exertional shortness of breath and fatigue. This is even more important if the patient is female or has a history of diabetes mellitus, because these groups often present atypically. Electrocardiogram, echocardiogram, exercise or nuclear stress testing and possibly even heart catheterization may be necessary to further evaluate the condition [5].

Pulmonary etiologies must also be explored, even more so if the patient has a prior history of lung disease. In these instances, shortness of breath could be more attributable to decreased lung capacity as opposed to residual diaphragmatic paralysis from post-polio syndrome. Therefore, pulmonary function testing, chest imaging (high resolution CT imaging) or polysomnography may be necessary to evaluate complaints of breathing difficulty, fatigue and generalized weakness.

If the patient reports swallowing difficulty, it may be important to rule out gastroesophageal pathologies such as stricture or reflux prior to equating these symptoms to the prior history of bulbar polio. Consider esophagogastroduodenoscopy to further evaluate for anatomic abnormalities. It is also important to exclude other neurologic pathologies such as Parkinson’s disease, Amyotrophic lateral sclerosis or multiple sclerosis, as these symptoms also cause neuromuscular deficits similar to post-polio syndrome. Electromyography, lumbar puncture and MRI may be necessary. Electromyography is particularly helpful because findings can suggest where certain prior disease-affected muscle groups are located.

Excluding age as a cause of symptoms is very difficult, as there is much symptom overlap. If decline appears to be age-appropriate, then some symptoms may be related to ageing. There is little harm in attributing part of the disease process to age, as treatment of age-related decline in function is akin to treatment of post-polio syndrome.

Post-polio syndrome is an important primary care topic because its diagnosis requires extensive testing that is often prompted by the primary care specialist. Recognizing the signs and symptoms of the syndrome as well as a remote history of poliomyelitis is necessary [6].

3. Conclusions

Post-polio syndrome is an interesting disorder characterized by new neuromuscular deficits that present years after the resolution of a polio infection. There are several diagnostic criteria, but one of the most important is the exclusion of other possible diagnoses. Post-polio syndrome diagnosis is even more difficult in the elderly population due to the presence of multiple comorbid conditions. Extensive testing may be necessary for an appropriate diagnosis in this population.

 

Bruno Bytes – July, 2017

by Dr. Richard L. Bruno

http://www.papolionetwork.org/bruno-bytes.html

On the topic of Bladder and Urinary Issues  (7/13/2017)
Original Post:  Whenever I have had general anesthesia, I can’t urinate for over a week. I have to come home with a catheter/and bag. The muscle tone takes that long to return. I had told my Anesthesia person that I had Polio and this problem but it still happens.
Dr. Bruno’s Response:  Post-operative urinary retention is one of the most common side effects of general anesthesia. Up to 70 percent of patients have minor trouble urinating after surgery. 5% experience more significant bladder-retention problems. Having had poliovirus-damage to the bladder nerves would put you in the 5%.

On the topic of Spinal Cord Stimulators  (7/15/2017)
Original Post:  Is there any reason that spinal cord stimulators are counter indicative for PPS or is it a try-it-and-see situation?
Dr. Bruno’s Response:  Every Post-Polio Institute patient who had a stimulator implanted had it removed. They couldn’t tolerate the electric “shocks” plus the device didn’t reduce pain.  This is another reason to treat the CAUSE of pain, not the symptom.
 
On the topic of struggling to hold a book  (7/18/2017)
Original Post:  Each state has a Talking Library for blind and handicapped. They send the player and recorded books. I’ve “read” over 100 in the past year. It is a lifesaver for me. Many nights I can’t sleep. I plug in my earphones, set the timer, and listen! If you fall asleep you can back it up or reset the timer if you are awake.
Additional Post:  I’m not able to hold books any longer. I had missed reading. I bet you will find your favorite author and some new ones!!
Dr. Bruno’s Response:  National Library Service for the Blind and Physically Handicapped Downloadable Books and Magazines  https://www.loc.gov/
BARD: Braille and Audio Reading Download
For support, please e-mail NLSDownload@loc.gov.
They send a free rechargeable player and send a catalogue every few weeks. They ship books free, just put the USB drive back in the case you received it and drop in the mail.
 
On the topic of Choking on Saliva  (7/20/2017)
Original Post:  I’ve been having more episodes of choking on my saliva when I’m just starting to fall asleep. It doesn’t seem to happen while I’m asleep. At night I sleep in a zero gravity recliner. I cannot sleep in a bed as I have lower back pains, reflux and obstructive sleep apnea.  All those issues were resolved for several years now by sleeping upright. I’ve had a swallow test and endoscopy this year…a small hiatal hernia.  This choking business is new and is freaking me out.
Dr. Bruno’s Response:  “Choking” on saliva or thin liquids is the most common swallowing complaint in polio survivors. The thin liquid sort of sneaks down your throat, especially when you are sleeping. This doesn’t necessarily show up on a video swallow study since liquid barium is far from thin. For bedtime issues, talk to your doctor about taking a decongestant to dry up saliva.

The good news is that trouble with thin liquids isn’t the pre-cursor to problems swallowing other things. The overwhelming majority of polio survivors don’t have big-time difficulty swallowing, as do those who have had a stroke or have a neurological disease.

If polio survivors do have trouble swallowing while eating, a video swallow study is the first step to find out if the food is “pooling” in the throat or not going down at all, due to muscle spasm or a narrow esophagus. A speech therapist can teach you tricks to help your swallowing. Liquids can be thickened. Solid food should be cut into small pieces, eaten slowly, chewed thoroughly and swallowed with intention. You can even swallow twice per mouthful.

Also, you shouldn’t talk while eating, something difficult for voluble (someone who speaks quickly) polio survivors to do! As the Buddhists teach: PAY ATTENTION! When you eat, only eat. When you speak, only speak.

​On the topic of Knee Pain Relief without Surgery  (7/24/2017)
Dr. Bruno’s Original Post:  Knee Pain Relief WITHOUT Replacement?  This may be something to talk to your doctor about.

http://www.newswise.com/articles/view/678214/?sc=mwhn
 
Newswise — Pain medicine specialists at Rush have helped develop, and are among the first in the country to provide, a noninvasive treatment for knee arthritis that uses cooled radio energy to target and interrupt pain signals.
 
Known as “Coolief,” the procedure can provide several months of relief from chronic arthritis pain for patients for whom surgery is not an option. It also decreases the need for a daily regimen of prescription medication and other over-the-counter pain-relieving drugs.  “We’re not taking away the arthritis, just the arthritis pain,” said Dr. Amin Sandeep, a pain specialist at Rush University Medical Center and chairperson of the Department of Anesthesiology at Rush Oak Park Hospital. “We’re changing the wiring of the knee to interrupt the pain signal.”
 
For several years, Rush pain medicine physicians have treated many types of chronic pain with radiofrequency (RF) ablation technology, which uses the heat from radio wave energy to temporarily neutralize specific nerves that cause chronic pain. The innovative Coolief RF technology combines cold and heat energy to extend the pain-free period much longer.
 
During the Coolief procedure, minimally invasive needles and water-cooled electrodes inserted into the knee target three nerves responsible for sending pain signals to the brain. RF energy passes through the needle and ablates (heats) nerve tissue, greatly reducing those nerves’ ability to send pain signals to the brain for extended periods of time.  By also cooling the targeted area with the water-cooled electrodes, the Coolief procedure creates a treatment area that is larger than what occurs via conventional, heat-only RF treatments. That larger treatment area in turn extends the time the nerves need to resume sending pain signals.
 
This May, the U.S. Food and Drug Administration approved Coolief as the first RF treatment specifically to alleviate chronic knee pain due to osteoarthritis. That was based primarily on a 2016 clinical study showing that the Coolief system was safe and provided higher levels of pain relief for much longer time periods than intra-articular corticosteroids (cortisone injections).  Dr. Asokumar Buvanendran, Rush’s director of orthopedic anesthesia, helped lead that study, and other physicians at Rush participated in it, as did several Rush patients.

  • Grandmother freed from pain, able to play with grandchildren

  • One of those patients is Felicia McLoden. For this 65-year-old grandmother, Coolief meant nearly instant relief from the excruciating pain in her right knee that for years had made simple tasks like grocery shopping or playing with her grandchildren impossible.

    “The arthritis was so bad that I could barely step down without severe pain. I thought I was going to limp for the rest of my life,” McLoden said.   She felt nearly immediate relief after receiving Coolief treatment in May. “I can do things now. I don’t even know what I want to do, I just know it’s everything,” McLoden said.

  • Knee osteoarthritis afflicts 20 million in U.S.Osteoarthritis is a painful condition in which the cartilage that cushions joints loses its elasticity and wears away in places. This loss makes bones rub together, causing pain, stiffness and swelling.

     

    According to the federal Centers for Disease Control and Prevention, 20 million people in the United States suffer from osteoarthritis of the knee, with treatments ranging from increased activity to medication to knee joint replacement surgery for the most severe cases.  Each year, an estimated 700,000 of those people have knee joint replacement surgery.

     

    While total knee joint replacement remains the best long term option for those with severe osteoarthritis of the knee, some people may not be candidates for surgery due to medical conditions such as diabetes, weight, other surgical risks, or are or are so young that a second knee replacement would be likely. “This procedure is proving to be a great option for those patients.” Amin said.

     

    On the topic of Muscle Spasms upon Wakening  (7/30/2017

    Original Post:  When I wake up in the morning, before I can get out of bed I have to stretch and make my arms and legs go as rigid as I can. I have to do this two or three before I can function properly.

    Dr. Bruno’s Response:    Painful muscle spasms when you wake from sleep in the morning, which usually happens during REM (dream) sleep 9when your brain actually paralyzes your muscles), sounds like another polio paradox. But the clue as to why muscles go into spasm after you wake lies in the brain’s ability to control your motor neurons and your muscles.

     

    Spinal cord motor neurons are like misbehaving, stubborn children. They want to make muscles contract all the time. It’s what motor neurons do! But, to prevent the “kids” from doing what they want their “parent,” the brain, sends signals to the spinal cord telling the kids when and how much they should turn muscles on and, just as important, turn muscles off. If something interferes with the signal to turn muscles off — like a sleeping, poliovirus-damaged brain — the kids indeed do what they want: They turn muscles on! And when turned on for too long you get rigid muscles and painful spasms come morning.

     

    You can see the result of this brain/spinal cord disconnection in a condition that polio survivors know well: Leg movements in sleep. Poliovirus-damage to brain muscle control neurons prevents the sleeping brain from automatically sending a “turn off” signal to the spinal cord and allows motor neurons to do what they want: Contract! Our studies of sleep in polio survivors found that these contractions don’t just happen in leg muscles but can happen in muscles anywhere — arms, abdomen, chest and, maybe most painfully, the back and neck.

     

    How do you prevent sleep spasms? Since alcohol turns brain output signals down, you shouldn’t drink in the evening. Over using your muscles during the day “irritates” Polio virus-damaged motor neurons and makes them more likely to cause those muscles to contract. Stretching and painless posture during the day, stretching and a hot bath before bed and keeping the muscles that spasm warm while you sleep (using a heating pad with an automatic shut off or a little dab of Capzasin) can help.

    The most effective treatment is 0.5 – 2.0 mg of alprazolam (Xanax) 30 minutes before bed. Alprazolam, like its grandfather diazepam (Valium), directly turns off spinal cord motor neurons during sleep when the post-polio brain can’t. We hope your doctor won’t say “No” to alprazolam because “it’s addictive.” The potentially addictive effect of the drug — relaxation — occurs when you can’t feel it, i.e., during sleep. Alprazolam is a Valium-like drug that directly quiets the spinal cord motor neurons that cause your muscles to twitch at night.  In 30+ years, we never have had a Post-Polio Institute patient become addicted to alprazolam or even require higher doses over time. Once the right dose is found, that’s the dose the polio survivors’ stay on. 
     
    Sweet spasm-free dreams!

Chiropractic: A Crock, a Crack or a Cure?

By Dr. Richard L. Bruno
Chairperson International Post-Polio Task Force
and Director International Centre for Polio Education
PostPolioInfo.com

  1. You talk about back muscle spasm pain and various ways to treat it. Can’t polio survivors just go to a chiropractor and get their backs “cracked?”

    A. The answer is a very cautious “sometimes.” Before you see a chiropractor you need to know what chiropractic is. Chiropractic is an American creation that was developed in 1895. Chiropractic treatment is based on the theory that there is a “strain or sprain” between spinal vertebrae that causes a misalignment, called a “subluxation.” Subluxation is thought to trigger muscle spasm and back or neck pain by reducing the movement of the vertebrae. Chiropractors “adjust” or “manipulate” the spine with their hands, or with a device called an “activator,” which “pops” the vertebra back into proper position, restores spinal movement and decreases pain. However, chiropractor Howard Vernon, writing in Chiropractic in the United States: Training, Practice, and Research says that this theory remains “largely speculative” and that “all of the theories of the effects and mechanisms of action of spinal manipulation still lack adequate research.”

    There isn’t just a lack of research documenting how chiropractic treatment for back pain works. It is more than a little disturbing that, in spite of admitting there is no research to support its claims, the American Chiropractic Association (ACA) says that chiropractors treat not only back pain, but also allergies, asthma, digestive disorders, childhood ear infections, and even attention deficit disorder in children. There are some studies showing that manipulation can be effective in treating back pain. But with such broad claims about chiropractic and so little research documenting its mechanism of action and effectiveness, should polio survivors ever see a chiropractor?

    There are two situations where spinal manipulation could help: when back pain is caused either by the sacroiliac (SI) joints in the pelvis or mid and lower back spinal vertebrae going out of alignment after a fall, an auto accident or just by turning, bending or lifting improperly. After the initial muscle spasm is calmed down, the SI joints or vertebrae can often be moved back into place and pain reduced. Although some chiropractors recommend adjusting the entire spine to treat back pain, there is no evidence that this is more helpful than adjusting only the low back or SI joints. What’s more, spine adjustments that include neck vertebrae are risky. Neck manipulation has been reported to cause spinal cord injury, damage to blood vessels supplying the brain, and stroke. Even low back spinal adjustment is not recommended if you have a history of spinal surgery or a spinal fusion, osteoporosis, or have neurological symptoms — numbness, tingling or recent loss of muscle strength in an arm or leg — that may indicate a pinched nerve or a severely herniated disc.

    As with all symptoms in polio survivors, the cause of pain must be identified, or potential causes ruled out, before spinal manipulation is attempted. And you should also know that it’s not just chiropractors who can adjust the spine. Medical doctors of osteopathy and specially trained physical therapists can also perform spinal manipulation. But regardless of who’s doing the “back cracking,” polio survivors should talk to their physicians before being adjusted by anyone.

    Unfortunately, even when spinal manipulation does help to relieve back pain, chiropractors don’t usually teach “painless posture,” which is vital to maintain the alignment of the spine and SI joints (see THE POLIO SURVIVORS HANDBOOK at postpolioinfo.com.) This leads some patients with chronically poor posture to depend on frequent adjustments to realign their spines. The Mayo Clinic concluded that four to eight chiropractic sessions are reasonable to treat new back pain, but that there is no evidence additional treatments are helpful. Repeated adjustment can cause irritation, inflammation and continued or additional pain. So, once the SI joints or vertebrae have been moved back into proper position, patients should see a physical therapist with experience treating both PPS and chronic pain for help in learning proper posture in sitting, standing and walking. PTs can also suggest braces, forearm crutches and lumbar and seat cushions to help keep your pelvis and spine straight.

 

A Life Not with Standing

by Chava Willig Levy

“Reprinted with author’s permission.” The print version of “A Life Not with Standing” is available at http://tinyurl.com/k6qxwo8 and the e-book version is available at http://tinyurl.com/mos5gqr.

Hello, all. Yesterday was my 62nd polio anniversary. To commemorate it, I am honored to share with you the first chapter of my memoir, “A Life Not with Standing”:

Chapter 1: I Didn’t Come Running

People ask me all the time if I remember what happened to me. I don’t. But my battle with polio became so embedded in our family lore that, if I close my eyes, I can see and hear everything that transpired.

Saturday, August 13, 1955. Drenched by Hurricane Connie, my father had just returned from the synagogue, deeply disappointed to have been the only one there. But as soon as he dried his glasses, the silver gleam of his goblet on the secondhand table—and of my sister Temi’s Slinky under it—caught his eye. He smiled and rubbed his hands together.

“Kiddush, everyone!”

I didn’t come running. That got his attention. An impish strawberry blonde with an inordinate fondness for Malaga wine, I never missed kiddush, the blessing over the Sabbath wine. But I did that day, lying limply on our dilapidated couch and complaining of an unbearable headache.

“No cause for alarm. Her fever is barely 101 degrees,” Dr. Lester, a fellow vacationer in Woodridge, New York, told my parents on Sunday morning.

When he returned on Monday morning, my neck had stiffened. “Let’s get her to Dr. Mehlman in Middletown for a consultation.”

So Imma and Abba drove forty miles to Middletown, sixty times the size of Woodridge. Dr. Mehlman took one look at me and took my parents aside. “I suggest getting her to the hospital immediately. This could be polio.” So they carried me back to their car and sped 110 miles from Upstate New York to Brooklyn’s Kingston Avenue Hospital for Infectious Diseases.

My parents often told me what I was saying intermittently during that three-hour drive: “Look! A train!” But what were they thinking?

Just four months earlier, on April 12, 1955, they had been jubilant. Dr. Jonas Salk had made it official: His polio vaccine worked. But by August, April’s euphoria had disintegrated into anguish. And the kicker: They had done everything to prevent this nightmare. Knowing that it would take months for the vaccine to be distributed across the country, knowing that polio thrived particularly in hot weather and in big cities like ours, they had decided—for the first and only time in our family history—to splurge on a summer in the Catskills.

And for what?

If that’s what they were thinking, they never told me. And they never told me that, of the hundreds of children populating their bungalow colony, polio came after me and me alone. Like a laser beam, it came in for a pinpoint landing.

Instead, they told me I was a brave soldier when the doctor administered the spinal tap. (In the recesses of my memory, all I can discern is my mother lifting a polo shirt—navy blue with tiny red dots, or were they white?—over my head as I babble, unaware that my life is hanging in the balance.)

They told me I entered Kingston Avenue Hospital a curly top and emerged fourteen months later with my hair scared stiff.

They told me about the doctors’ dire diagnoses and prognoses.

“Mr. and Mrs. Willig, we’re sorry but your daughter has two kinds of paralytic polio: spinal and bulbar.”

“But what does that mean?”

“We don’t yet know to what extent, but at present the spinal polio has paralyzed her arms and legs. In addition, the bulbar polio has paralyzed her breathing muscles. That’s why we’ve had to place her in an iron lung.”

“Mr. and Mrs. Willig, we’re sorry but we now know that your daughter will never walk again.”

“How can you be sure?”

“Her right quadriceps has been left completely paralyzed. Without at least partial use of the quadriceps in both legs, walking is impossible.”

“Mr. and Mrs. Willig, we’re sorry but your daughter will have a severe curvature of the spine, affecting both her back and her neck.”

“But she looks perfectly straight!”

“That may be true now, but because her left side is somewhat stronger than her right, scoliosis will be increasingly apparent as she continues to grow.”

They told me I had a new name.

“Abba?”

“Yes, Chavela?”

“The people [breath] here think my [breath] name is [breath] Choffa.”

“I know, mamela. It’s hard for them to say your name because it’s Hebrew. English doesn’t have the sound that your name starts with.”

“But I think [breath] they’re making fun [breath] of me.”

“No, mamela, they’re not. But Imma and I have an idea. First, though, look what I brought you! Your favorite flavor too.”

“But Abba, I [breath] can’t get it [breath] to go down.”

“Maybe this time it will work. How about I hold the straw near your mouth? When you breathe air all the way out, try to take a tiny sip, real fast, before your breathing machine starts up again. You need to get strong, okay?”

“First tell me [breath] your idea.”

“Yes, ma’am. You sure drive a hard bargain! Okay, it’s a deal. Let’s make it easier for the people here. Did you know that you have two names? Your first name is Chava—and sometimes we call you Chavela or Chavi. Chava is a lot like the English name, Eve. And your middle name is Yehudis. In English, that’s a lot like Judy. Is it okay if the people here call you Eve or maybe Judy?”

I picked Judy. The name stuck for sixteen years.

As for polio, its name has been around for 139 years. And long before Adolph Kussmaul coined the phrase “poliomyelitis anterior acuta” in 1874, some say for 5,000 years, the polio virus lurked incognito. Today, most people have forgotten polio. Not me. I don’t want to forget.

And I don’t want to forget that although polio terrorized parents and children the world over, the disabilities it inflicted can’t hold a candle to the stigma the human race has attributed to them.

All in all, it had hardly been a fair match. I was a three-and-a-half-year-old pipsqueak, my opponent a seasoned, globetrotting bandit with countless conquests to his name. He overpowered my muscles. He absconded with my ringlets. He stole my symmetry. He even snatched my name. But over half a century later, I can say with certainty and satisfaction that I gave him a run for his money.

 

Abandoned

by Millie Malone Lill

Do you suffer from abandonment issues?  So many of us do.  Most of us got polio when we were very young.  We were put in isolation, unable to see our parents or siblings.  Even after that, most of us had parental visits only every other weekend or sometimes, in the case of being in a hospital far from home, we got no visits at all.  Visitors were often only allowed to look at us through a window.  Some of us were hospitalized for years.

Add to this the fact that in the 40s and 50s, children’s rights were not a big issue.  We were seldom told what was going on and sometimes the harried nurses were less than comforting.  I’ve heard of several cases where a child having a nightmare was told to be quiet or risk being shoved into a dark closet overnight.  Somehow, I cannot imagine that as being an effective way to stop nightmares!

But we struggled.  We did as we were told.  We were not encouraged to complain, even if the exercises were painful or difficult.  Most of us eventually left the hospitals, some in braces, on crutches or in wheelchairs, but every one of us struggled and got as mobile and as independent as possible.

Possibly due to the fact that polio was considered a “dirty disease” and was not spoken of afterward, we developed a sense of being less than.  I think it was harder for some of us than for others.  A teenager going back to high school with diminished capacities might be ostracized by his peers.  Can’t play football now, can you?  Not such a hotshot as you thought you were!  Children can be cruel.

I started kindergarten wearing a long leg brace.  I was lucky in that whatever teasing went on, the kids eventually got used to me and those same kids were with me through graduation.  By then, I was accepted.  Not included, however.  And now we come to my point.

We are adults, facing a progressive illness that is ironically not always visible.  People we met when we were in recovery did not realize we had a disability.  We certainly were not going to point it out!  We’d struggled valiantly for most of our lives to be as “normal” as possible.  No one wants to be so different that we are unacceptable.  So we try to keep up with our friends.  Hiking, sailing, walking the mall.  One of my friends became a body builder.  Till she burned almost every last neuron in her body.  Now she uses a power chair full time.

I wish I knew the answer to how to get our friends and families to understand that we are not suddenly lazy.  Exercise will not bring back a muscle with no neuron to send messages to our brains.  That is like trying to tune a radio that is not plugged in!  It hurts when we are told that we are too much bother, that there is no room in the lives of our friends who are able bodied and want to go dancing or play sports or walk the mall.

The answer that works for me, and your mileage may vary, is to find things I can do from my chair.  If I take my van with the lift on it, I can still go places with my friends and family.  As long as I use my chair I can probably shop till they drop.  The friends who abandon us when we need them most are not true friends.

Find a support group, go online, try to find things that are enjoyable but not fatiguing to the point where you are exhausted.  But once in awhile, not very often, just now and then, do something you know you will pay for in pain and exhaustion.  Just because you still can.

 

WEB CORNER

What your voice is saying about you:

http://polioplace.org/sites/default/files/files/PPH26-2sp10p1-11.pdf

Remote jobs for people with disabilities:

https://themighty.com/2017/07/remote-jobs-companies-disability/?utm_source=The+Mighty+Newsletter&utm_campaign=d2490a1865-EMAIL_CAMPAIGN_2017_07_11&utm_medium=email&utm_term=0_083492ca1a-d2490a1865-201491717

Napping is good for you:

https://www.healthspiritbody.com/nap-benefits/

Canada pledges to help eradicate poliomyelitis:

https://www.youtube.com/watch?v=3VkmoJWX0q8&feature=youtu.be&utm_source=Iterable&utm_campaign=iterable_CAN_Jun_14_2017_Polio_letter_minister_en_send2_actives&utm_medium=email

The movie A Paralyzing Fear:  (an hour and a half long but worth the view)

http://www.snagfilms.com/films/title/a_paralyzing_fear

Access and Inclusion Through Technology:

http://paper.li/e-1452749534#/

The Benefits of Having Friends With Similar Disabilities:

http://agerrtc.washington.edu/node/291

Chava Willig Levy Battles Against Stygma

http://boston.forward.com/articles/189173/chava-willig-levy-battles-against-stigma/

Biography of Dorthea Lange, a polio survivor

http://www.pbs.org/wnet/americanmasters/dorothea-lange-biography-with-photo-gallery/3097/

Fair Housing.  It’s Your Right

https://portal.hud.gov/hudportal/HUD?src=/topics/housing_discrimination

 

OTHER POLIO NEWSLETTERS

Pennsylvania Polio Survivors Network:         http://www.papolionetwork.org/

Post Polio Matters          http://poliosurvivorsnetwork.org.uk/

Post Polio Health          http://Post-polio.org/

Polio Oz         http://www.polioaustralia.org.au/

Atlanta Post-Polio Association          http://www.atlantapostpolio.com/

 

A Little Bit of Humor

The Chinese Doctor & The Lawyer

A Chinese Doctor can’t find a job in a Hospital in the US, so he opens his own clinic and puts a sign outside
‘GET TREATMENT FOR $20 – IF NOT CURED GET BACK $100.’
An American lawyer thinks this is a great opportunity to earn $100 and goes to the clinic.


Lawyer: ‘I have lost my sense of taste.’
Chinese: ‘Nurse, bring medicine from box No. 22 and put 3 drops in patient’s mouth.’
Lawyer: ‘Ugh. this is kerosene.’
Chinese: ‘Congrats, your sense of taste is restored. Give me $20.’
The annoyed lawyer goes back after a few days to recover his money.
Lawyer: ‘I have lost my memory. I cannot remember anything.’
Chinese: ‘Nurse, bring medicine from box no. 22 and put 3 drops in his mouth.’
Lawyer (annoyed): ‘This is kerosene. You gave this to me last time for restoring my taste.’
Chinese: ‘Congrats. You got your memory back. Give me $20.’
The fuming lawyer pays him, and then comes back a week later determined to get back $100.
Lawyer: ‘My eyesight has become very weak I can’t see at all.’
Chinese: ‘Well, I don’t have any medicine for that, so take this $100.’
Lawyer (staring at the note): ‘But this is $20, not $100!!’
Chinese: ‘Congrats, your eyesight is restored. Give me $20

 

7 Responses to “Polio Perspecvtive”

  1. Thomas Christian says:

    Ole better git a hearing ade?

  2. ruth says:

    thanks for this news letter. My sister is having the same feeling of when she had polio at 6. I am helping her learn what could be happening. thanks for this as the doctor is not talking about it.

  3. Millie Lill says:

    Ruth, read all you can online and I also suggest that you join one of the Facebook polio sites. You can learn a lot from those of us who have been there and done that.

  4. Hilary Boone says:

    Why do we still have so much hassle trying to get decent medical care. Sharing experiences really does help us realise ‘It’s not just me’ which slightly lessens the frustration and stress. Millie as usual you have done a great job.

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