Franklin D. Roosevelt's paralytic illness

Franklin D. Roosevelt's paralysis has become a major part of his image today, even though during his life it was kept from public view and rarely discussed in public. Roosevelt's paralysis was originally diagnosed to be paralytic poliomyelitis. However, retrospective analysis favors the diagnosis of Guillain-Barré syndrome.

Timeline and history of illness
In August 1921, while the Roosevelts were vacationing at Campobello Island, New Brunswick, Roosevelt contracted an illness characterized by fever; protracted symmetric, ascending paralysis of the upper and lower extremities; facial paralysis; bladder and bowel dysfunction; numbness; and dysesthesia. The symptoms gradually resolved except for paralysis of the lower extremities.

August 9

 * Roosevelt fell into the cold waters of the Bay of Fundy while boating.

August 10

 * Roosevelt went sailing on the Bay of Fundy with his three oldest children, put out a fire, jogged across Campobello Island, and swam in Lake Glen Severn and the Bay. Afterward, he felt tired, complained of a "slight case of lumbago", and had chills. He retired early. Chills lasted through the night.

August 11

 * One leg was weak. By the afternoon, it was paralyzed. That evening, the other leg began to weaken.

August 12

 * Roosevelt could not stand. He had bilateral paralysis. His legs were numb. He also had painful sensitivity to touch, general aches, and fever of 102 F. He could not pass urine.

August 13

 * He was paralyzed from the chest down. On that day and following, his hands, arms, and shoulders were weak. He had difficulty moving his bowels and required enemas. He continued unable to pass urine for two weeks, and required catheterization. His fever continued for six to seven days. On August 18th, he was briefly delirious.

Late August

 * On examination by physician Robert Lovett, Roosevelt's temperature was 100 °F. Both legs were paralyzed. His back muscles were weak. There was also weakness of the face and left hand. Pain in the legs and inability to urinate continued.

Mid-September

 * In mid-September, at New York City Presbyterian Hospital, there was pain in the legs, paralysis of the legs, muscle wasting in lower lumbar area and the buttocks, weakness of the right triceps, and gross twitching of muscles of both forearms.

Later

 * There was gradual recovery from facial paralysis, weakness in upper extremities and trunk, inability to urinate, inability to defecate, dysesthesia in legs, and weakness in lower back and abdomen. But the lower extremities remained paralyzed, and the buttocks were weak.

Possible causes
The unquestioned diagnosis at the time and thereafter in countless references was paralytic poliomyelitis, which was understandable because polio was epidemic in the adjoining northeastern United States during the late nineteenth and early twentieth centuries. Also, the disease struck in mid-summer, when poliomyelitis was more common. Furthermore, it has been reported that motor neurons innervating muscles vigorously exercised at the start of polio are those more likely to be paralyzed. Finally, fever usually occurs in polio.

Yet his age (39 years) and many features of the illness are more consistent with a diagnosis of Guillain-Barré syndrome (an autoimmune peripheral neuropathy). During the early twentieth century, almost all cases of paralytic polio were in children, and few adults over 30 years contracted the disease. Paralytic polio is rarely symmetric or ascending. The paralysis in polio usually progresses for only three to five days. In paralytic polio, the fever usually precedes the paralysis. Meningismus is common in paralytic polio. The studies suggesting a link between exercise and paralytic polio are subject to recall bias.

In contrast, every neurologic feature of Roosevelt's illness was consistent with Guillain-Barré syndrome. Fever is found in some cases, and about 15% of severe cases have permanent neurological sequelae.

Roosevelt's principal physicians during his illness, Robert Lovett and George Draper, were experts in polio. It is possible that the diagnosis of Guillain-Barré syndrome was not on their minds, since the disease was not as well known at the time. In 1916, Georges Guillain and Jean Alexandre Barré described the cerebrospinal fluid finding in two soldiers with ascending paralysis, loss of deep tendon reflexes, paraesthesia, and pain on deep palpation of large muscles.

A peer-reviewed study published in 2003, using Bayesian analysis, found that six of eight posterior probabilities favored a diagnosis of Guillain-Barré syndrome over poliomyelitis. The published study contains citations for many items in this article. Paul Goldman, the son of the primary author, first called into question the diagnosis of Roosevelt's paralytic illness.

For the purposes of the Bayesian analysis in the 2003 study, a best estimate of the annual incidence of Guillain-Barré syndrome was 1.3 / 100,000. For paralytic poliomyelitis in Roosevelt's age group, the best estimate of the annual incidence was 2.3 / 100,000.

Based on the incidence rates for Guillain-Barré syndrome and paralytic polio, and the symptom probabilities for eight key symptoms in Roosevelt's paralytic illness, six of the eight key symptoms favored Guillain-Barré syndrome:
 * 1) Ascending paralysis for 10–13 days
 * 2) Facial paralysis
 * 3) Bladder / bowel dysfunction for 14 days
 * 4) Numbness / dysesthesia
 * 5) Lack of meningismus
 * 6) Descending recovery from paralysis

Two of the eight key symptoms favored polio:
 * 1) Fever
 * 2) Permanent paralysis

Exact disease incidences and symptom probabilities are not known. When disease incidences were artificially changed in favor of polio to values that were still somewhat realistic, six of eight key symptoms still favored Guillain-Barré syndrome. The only symptom that was somewhat sensitive to changes in symptom probabilities was fever. However, the reasonable change in the symptom probabilities caused the presence of fever to favor Guillain-Barré syndrome.

Unfortunately, Roosevelt's cerebrospinal fluid was never examined. The number of leukocytes is increased and concentration of protein usually normal in the cerebrospinal fluid of patients with polio. The converse occurs in Guillain-Barré syndrome.

The cause of Roosevelt's paralysis may never be determined with certainty. However, retrospective analysis favors the diagnosis of Guillain-Barré syndrome.

Personal impact
Regardless of the cause, the result was that Roosevelt was totally and permanently paralyzed from the waist down. Fitting his hips and legs with iron braces, he laboriously taught himself to walk a short distance by swiveling his torso while supporting himself with a cane. Although the paralysis had no cure at the time, for the rest of his life Roosevelt refused to accept that he was permanently paralyzed. He tried a wide range of therapies, but none had any effect. Nevertheless, he became convinced of the benefits of hydrotherapy, and in 1926 he bought a resort at Warm Springs, Georgia, where he founded a hydrotherapy center for the treatment of polio patients which still operates as the Roosevelt Warm Springs Institute for Rehabilitation (with an expanded mission).

Charitable legacy
After he became President, he helped to found the National Foundation for Infantile Paralysis, now known as the March of Dimes. The March of Dimes initially focused on the rehabilitation of victims of paralytic polio, and supported the work of Dr. Jonas Salk and others that led to the discovery of the polio vaccines. Today, the Foundation focuses on preventing premature birth, birth defects and infant mortality.

Roosevelt's association with the March of Dimes led to his image being placed on the face of the American dime.

Public awareness of the disability
At the time, when the private lives of public figures were subject to less scrutiny than they are today, Roosevelt was able to convince many people that he was in fact getting better, which he believed was essential if he was to run for public office again. In private he used a wheelchair, but he was careful never to be seen in it in public, although he sometimes appeared on crutches. He usually appeared in public standing upright, while being supported on one side by an aide or one of his sons. For major speaking occasions an especially solid lectern was placed on the stage so that he could support himself from it; as a result, in films of his speeches Roosevelt can be observed using his head to make gestures, because his hands were gripping the lectern.