The untold neurological disease of Franklin Delano Roosevelt (1882–1945)

The final event

In the last two years of his life, Franklin Delano Roosevelt manifested a constellation of neurological symptoms that had a major influence on his ability to function as President which are, in large part, the key to diagnosing a previously unappreciated malignant process that was responsible for his death on 12 April 1945. The evidence is scattered in thousands of first-hand accounts, letters, newsreels, photographs and documents. As early as 1923, a macular lesion above Roosevelt's left eye ¹ can be seen that darkened and expanded over the next decade and, in the mid-to-late 30s, exhibited morphology compatible with melanoma, ² a highly malignant and vascular tumour notorious for its propensity to metastasise and bleed in the brain.

At 13:10 on 12 April 1945 at Warm Springs, Georgia, the 63-year-old President Roosevelt was stricken by a catastrophic intracerebral haemorrhage that originated in the right posterior cerebral hemisphere and rapidly progressed in a classic transtentorial herniation fashion. Eyewitnesses at the scene have described these events in detail, namely the cardiologist and primary physician Howard G Bruenn ³ and Roosevelt's cousin, Margaret ‘Daisy’ Suckley. ⁴

In 1946 the presidential physician Admiral Ross T McIntire wrote that Roosevelt's fatal haemorrhage was unsuspected ⁵ and vigorously defended this contention until his death in 1959. The present accepted view of this event was laid out in detail by Bruenn, the President's primary physician from April 1944, in his 1970 paper ³ published with the consent and participation of the family, alleging that Franklin Delano Roosevelt (FDR) showed little concern for his health and that his death was solely a consequence of severe and longstanding hypertension and atherosclerosis.

Bruenn's account of events

Only recently has the veracity of Bruenn's assertions been challenged. ⁶ Each of the dozens of major biographical works published since 1970, beginning with that of James MacGregor Burns ⁷ who collaborated directly with Bruenn and the family, is based on Bruenn's account. Why should anyone doubt the first-hand account of the man who essentially lived with the President and treated him daily for the last year of his life?

The principal reason is the diary of ‘Daisy’ Suckley who, unbeknown to the President and his physicians, preserved her correspondence with Roosevelt and kept a detailed diary of her relationship with him. First published in Geoffrey Ward's 1995 book, Closest Companion, no other document is more revealing of the true state of Roosevelt's health and psyche. The diary reveals a story of progressive loss of vitality and the deep concerns Roosevelt had about his health, directly and credibly controverting the scenario described by Bruenn.

More doubt is cast upon Bruenn's account by understanding how Roosevelt dealt with his previous health problems. After the fateful summer of 1921, Roosevelt was never again able to stand without the use of braces. While the nature of the illness that struck him is still a matter of debate, ⁸ his intense rehabilitative efforts and contributions toward the understanding and cure of polio, his unchallenged diagnosis during his lifetime, are well appreciated.

Doctor Roosevelt

FDR took an active role in his rehabilitation, devising treatments and novel ways of objectively measuring improvement. ⁹ He sought out the most learned authorities in the field and gave advice to other victims, gaining him the title of ‘Doctor Roosevelt’ around Warm Springs. He personally financed and developed the medical centre there and founded a charity to raise awareness of the disease. The ‘March of Dimes’ was directly responsible for funding the scientific research that eventually produced a successful vaccine for poliomyelitis. In 1946 Roosevelt's image was placed on the dime to commemorate his immense contribution towards conquering polio.

Roosevelt made extraordinary efforts to conceal the degree of his own disability from the public, both personally and through surrogates including his political operative, Louis Howe ¹⁰ and, later, presidential physician McIntire who was recommended for his position largely because of his ability to ‘keep a close mouth’ by Admiral Cary T Grayson, a long-time friend of Roosevelt and the mastermind of the cover-up of Woodrow Wilson's severe disability following a large non-dominant hemisphere stroke in October 1919.

Roosevelt exercised strict personal control over every decision that affected his health. Despite the fact that he was wheelchair bound, none of the tens of thousands of photos seen publicly during his lifetime shows him in a physically compromised state. Even after his death, McIntire and, later, Bruenn, intentionally and deceptively protected the privacy of his medical history. Roosevelt's penchant for secrecy and intrigue is well recognized. His existing medical records carry the names of at least 30 different aliases.

FDR was very prone to infectious disease. While he was a governor and president, he was frequently laid up for days or weeks with illnesses that the public was informed were influenza, sinus trouble, grippe and swamp fever.

The dread disease

A 2008 paper in Archives of Dermatology co-authored with dermatopathologist A Bernard Ackerman ² describes the pigmented lesion above Roosevelt's left eye and presents a differential diagnosis of melanoma and solar lentigo. The primary lesion underwent marked changes throughout 1940 with essentially total disappearance by the end of 1941. The natural history of the two possible pathologies is incompatible with the well-documented rapid change in morphology. The overwhelming probability is that the lesion was removed surgically. The highest degree of secrecy needed to be enforced since any hint that the President was being treated for a highly malignant condition, as melanoma was known to be at the time, ^11,12 would have been disastrous to his future aspirations. Other than a letter from a Massachusetts gynaecologist expressing concern about it, ¹³ the lesion quietly disappeared.

Roosevelt had mild, intermittent hypertension noted as early as 1933 that accelerated rapidly in 1944 with one transient episode of inability to write his name correctly in 1937 ¹⁴ and a well-documented syncopal episode in March 1940. ¹⁵ In 1943 many new and persistent problems began to show.

Tremor

Beginning in late 1943 a progressive intention tremor was noted that ultimately had a profound effect upon his handwriting (Figure 1). As early as June 1943 FDR asked his secretary to get him a larger coffee cup so as not to spill the contents when he drank from it. Several reliable observers reported an intention tremor of variable intensity. While it worsened generally with time, it waxed and waned from day to day. Some samples of FDR's handwriting early in 1945 are virtually unintelligible yet some in March are much clearer. There were never any overt signs of extrapyramidal disease or laboratory evidence of significant hepatic disease. There was moderate hypoxemia and an unknown degree of renal disease. Severe congestive heart failure was treated with digitalis from early April 1944. FDR's mother, two of his sons and a daughter had a tremor. His alcohol use was moderate, he smoked two packets of cigarettes a day and, beginning in May 1944, was using phenobarbital, 30–60 mg three times daily.

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Figure 1

FDR's handwriting to show the changes in his tremor (author's collection): (a) on 1 June 1944, (b) on 7 September 1944, (c) on his last cheque dated 9 April 1945

Observers described the tremor. Harry Truman (18 August 1944) ¹⁶ noted ‘In pouring cream in his tea, he got more cream in the saucer than he did in the cup. His hands are shaking and he talks with considerable difficulty’. Ambassador Joseph P Kennedy (October 1944) ¹⁷ noted ‘his hands shake violently when he tries to take a drink of water. About 10 percent of the time he is talking, his words are not clearly enunciated’. The Director of Public Relations at the White House, David Noyes (20 March 1945) ¹⁸ noted ‘the president was trying to light a cigarette and put the cigarette in his holder to light it in the usual way. Unable to connect the match, his hand shaking badly, he opened the desk drawer, placed his bent elbow inside, partly closed the drawer and got a firm hold on his hand’. The Secretary to the Treasury, Henry Morgenthau (11 April 1945) ¹⁹ wrote ‘he was mixing cocktails. His hands shook so that he started to knock the glasses over and I had to hold each as he poured the cocktail … I noticed that he took the two cocktails and then seemed to feel a little better’.

Obviously an intention tremor; the family history and apparent response to alcohol are highly suggestive of benign essential tremor. With progression mirroring the worsening of Roosevelt's associated medical problems, enhancement by metabolic encephalopathy and possibly neuropathy must also be considered seriously.

The beginning of the end

The Teheran Conference, held from late November to early December 1943, marked the turning point in Roosevelt's health after which there was an inexorable downhill course. At this conference the first report of severe paroxysmal abdominal pain is reported, ²⁰ likely the first recorded episode of symptomatic metastatic disease, a consequence of intussusception well known to be associated with small bowel metastases from melanoma. Two other well-documented major abdominal attacks occurred in May ²¹ and August of 1944. ²²

Although cholelithiasis was advanced as the source of FDR's abdominal pain, his diet was more in keeping with a patient with partial bowel obstruction, the likely cause of a 40-pound weight loss in his last year. The time frame for the appearance of metastatic disease in late 1943 after removal of the primary lesion in 1940 is consistent with the natural history of melanoma.

Lethargy and seizures

From late 1943 there are many reports of a persistent and progressive lethargy and somnolence. From early in 1944 Roosevelt's level of alertness varied. He worsened generally as the days progressed. As April 1945 neared, the periods of exhaustion and stupor worsened and he had many more bad days than good.

On 27 March 1944 FDR was diagnosed with severe congestive heart failure which likely was a major contributor to his tiredness. Shortly afterwards he was started on digitalis which brought about rapid remarkable clinical improvement. Despite another month of seclusion, an enforced four-hour workday and mid-day naps, the lethargy progressed. Secretary Grace Tully (1944) ²³ ‘worried when Mr Roosevelt suddenly dozed over his mail. She had witnessed it several times. In chats with political friends he frequently ‘drew a blank’ as they listened: abashed, he had to ask what he had been talking about’. Assistant Secretary of State Breckinridge Long (1 November 1944) ²⁴ noted ‘I am not sure nowadays that things are properly and fully presented to the President and in such a manner that he can pass on these matters with a full understanding of the consequences of decisions’. Long-time friend and Secretary of Labor Francis Perkins (January 1945) ²⁵ noted ‘I had a sense of his enormous fatigue. He had the pallor, the deep gray color of a man who had been long ill. He supported his head with his hand as though it were too much to hold up. His lips were blue. His hands shook’.

Speechwriter John Gunther (February 1945) ²⁶ noted ‘His fatigue was crushing, and he had intermittent periods of being virtually comatose. In fact his exhaustion was so complete that, on occasion, he could not answer simple questions and talked what was close to nonsense’. Winston S Churchill (February 1945) ²⁷ noted ‘His captivating smile, his gay and charming manner had not deserted him, but his face had a transparency, an air of purification, and often there was a far-away look in his eyes’. Churchill's physician, Lord Moran (13 February 1945) ²⁸ wrote ‘he sat looking straight ahead with his mouth open, as if he were not taking things in … He has all the symptoms of hardening of the arteries of the brain in an advanced stage’ and ‘The President vacillated between intellectual acumen and a vacuous attitude which was impossible to penetrate with ideas and conversation. These extremes presented themselves within hours of each other’. Judge Marvin Jones (17 March 1945) ²⁹ ‘remembered that Mrs Roosevelt carried most of the conversation and the President would sometimes brighten up for a moment and then … his head would drop down’.

At FDR's last public appearance, at the White House correspondents’ dinner on 21 March 1945, Allen Drury, correspondent for the United Press, noted how old and thin and scrawny-necked FDR looked when he was wheeled in, how he stared out at the crowded tables as though he did not see the people, how he failed to respond to the blare of trumpets and to the applause. Everyone watched the greatest performer of all – how he steadily drank wine and smoked his uplifted cigarette, how he leaned forward with his hand cupped behind his ear to hear a joke repeated as laughter welled up in the room, how his booming laughter rang out. Then a few moments later observers noticed how he simply sat at the table with an intent, vague expression on his face, while his jaw dropped and his mouth fell open. ³⁰

The Canadian Prime Minister McKenzie King (26 March 1945) ^31,32 wrote ‘Roosevelt repeated two long stories … that he had told King the night before, King noticed that Mrs Roosevelt and Anna ‘seemed a little embarrassed’. Speechwriter Robert Sherwood (March 1945) ³³ noted the president was ‘in much worse shape than I have ever seen him … he had seemed unnaturally quiet, even querulous, never before had Sherwood found himself in the position of having to carry on most of the conversation without reply’. In March 1945 ‘Roosevelt was an animated human being from nine in the morning until an hour after midday. Each day at lunchtime he appeared to shatter into helpless fragments. The good nature seemed intact but the body and the mind faded in function toward a smiling helplessness’. ³⁴

Disturbing as the above reports are, there are others for which an explanation other than seizures is hard to surmise. New York Times reporter and editor Turner Catledge (early April 1944) ³⁵ wrote ‘when I entered the president's office I had my first glimpse of him in several months. I was shocked and horrified – so much of my impulse was to turn around and leave. I felt I was seeing something I shouldn't see. He had lost a great deal of weight. His shirt collar hung so loose around his neck that you could have put your hand inside it. He was sitting there with a vague glassy-eyed expression on his face and his mouth hanging open’. ‘Reluctantly, I sat down and we started talking. I expected him to ask me about the political situation, but he never did. He would start talking about something, then in mid-sentence he would stop and his mouth would drop open and he'd sit staring at me in silence. … Repeatedly he would lose his train of thought, stop, and stare blankly at me’. John T Flynn ³⁶ wrote of an August 1944 incident related to him by an eyewitness high-ranking officer ‘[while] reading a short speech suddenly (FDR) faltered and paused, his eyes became glassy, consciousness drifted from him. The man at his side nudged him, shook him a little, pointed to the place in the manuscript at which he broke off and said: ‘Here, Mr President, is your place’. With an effort he resumed. As he was wheeled from his quarters, officers noticed his head drooping forward, his jaw hanging loosely’. At a January 1945 meeting between Roosevelt and Senator Frank Maloney, ³⁷ ‘Maloney went in and sat down. Roosevelt looked up but said nothing, his eyes fixed in a strange stare. After a few moments of silence, Maloney realized that Roosevelt had absolutely no idea who his visitor was. A pious Catholic, Maloney crossed himself and ran to get (Chief of Staff) Pa Watson, fearing the president had suffered a stroke. ‘Don't worry’. Watson said. ‘He'll come out of it. He always does’. By the time Maloney returned to the oval office, Roosevelt had pulled himself together. Smiling broadly, he greeted Maloney warmly and launched into a spirited conversation’. The clincher comes from Francis Perkins ³⁸ who noted in an oral history ‘the change in appearance had to do with the oncoming of a kind of glassy eye, and an extremely drawn look around the eyes and cheeks, and even a sort of dropping of the muscles of the jaw and mouth, as though they weren't working exactly. I think they were, but there was a great weakness in those muscles. Also, if you saw him close to, you would see that his hands were weak … When he fainted, as he did occasionally – not for many years, but for several years – that was all accentuated. It would be momentary. It would be very brief, and he'd be back again’.

Over his last two years Roosevelt manifested progressive global cerebral dysfunction with frequent episodes highly suggestive of seizures. It is remarkable that Doctor Bruenn never acknowledged this problem, one that a careful and competent physician such as he must have recognized.

There is also a report of ‘brain haemorrhage’ while at his residence in Hyde Park, New York, on 25 March 1945 ³⁹ in which FDR was ‘unconscious for some time’ and ‘miraculously recovered’. Since he was seen shortly afterwards in his usual state of health, it was more probably a transient seizure, transient ischaemic attack or a syncopal episode.

Neurosurgeon Bert Park ⁴⁰ blamed FDR's lethargy on encephalopathy secondary to hypoxemia. Most probably there was encephalopathy although it was multi-factorial. There is evidence of renal compromise. Hypoxemia is easily implicated by right heart failure, a long history of heavy smoking and pulmonary metastases. Hypertension in 1944 was severe and persistent with diastolic pressures consistently between 105 and 120 and spikes as high as 150. When on the campaign trail and during the delivery of his fourth inaugural address, and while in considerable pain, ⁴¹ the President was not observed to have much difficulty with his mental faculties. The vast majority of the reports of problems are in a less stimulating setting, entirely consistent with a low-grade encephalopathy. While the degree of his hypertension was alarming, and an element of vascular dementia must be considered, Roosevelt never manifested any of the dysarthia, dysphagia and emotional lability characteristic of advanced hypertensive cerebrovascular disease.

Explaining the aetiology of the seizures is more problematic. His chief of staff's casual familiarity with them and Francis Perkins’ oral history provide reliable evidence that they were not infrequent. The events, most akin to partial complex seizures, were likely due to a combination of a silent temporal lobe infarct and multi-factorial encephalopathy. It would be attractive to invoke cerebral metastases but the reliable observation from May 1944 and Francis Perkins’ observation that they were occurring for ‘several years’ weigh heavily against this, considering the very short survival time in patients with metastatic brain melanoma. The apparent lack of focal neurological findings through to the end of 1944 also speaks against earlier brain metastases.

What FDR's doctors’ thought about the aetiology of the seizures is not known. They did not evade concern. There is a report that the Navy's chief neurosurgeon, Winchell M Craig, performed a pneumoencephalogram on the president. ⁴²

While the specialty of epileptology was in its infancy in the 1940s, effective treatment was known. Merritt and Putnam had introduced Dilantin (phenytoin) in 1937 and FDR was given phenobarbital, 90–180 mg per day, starting in April 1944, allegedly for control of his hypertension but more likely for his episodic lapses of consciousness.

Admiral McIntire, Surgeon General of the Navy, was a competent ENT physician and, contrary to current historical thought, competently utilized the expertise of the finest naval and civilian doctors including surgeon Frank Lahey and internist James Paullin. No man could have received more competent attention to his health than FDR. It is absurd to assume that any measure was spared in treating the President of the United States. His neurological care was delivered by the chief neurosurgeon of the Navy, Winchell M Craig, who later enjoyed a distinguished career at the Mayo Clinic.

New answers

On 6 January 1945 the President prepared a newsreel video of excerpts of the State of the Union address that he had delivered on the radio. By this time he was physically incapable of standing for the period required to deliver it before a joint session of Congress as had been his custom. The video reveals a curious behaviour not previously seen in videos Roosevelt had made as late as November 1944. While speaking, he used his hands, first the left and then the right, apparently to keep his place on the printed page. More evidence of visual–spatial problems is seen in a 14 January diary entry of Margaret Suckley who wrote ‘FDR called up at 5 minutes of two – he had mistaken the time on his clock and had just come downstairs for his lunch’.

Yalta

Much has been written about FDR's less than optimal performance at Yalta in February 1945. Some accounts provide clues to the reason why: Lord Moran wrote ⁴³ ‘Winston is puzzled and distressed. The President no longer seems to the PM to take an intelligent interest in the war; often he does not seem to read the papers the PM gives him’. Adviser James Byrnes ⁴⁴ wrote ‘Not until the day before we landed at Yalta did I learn that we had on board a very complete file of studies and recommendations prepared by the state department … I am sure the failure to study them while en route was due to the President's illness’.

Franklin Roosevelt's last public address was on 1 March 1945, a report to Congress upon his return from Yalta. It is best remembered as the first and only address of this magnitude given in a sitting position and the only address where he referred publicly to his disability. The speech is also notable for frequent, uncharacteristic deviations from the prepared text. Roosevelt was a master orator and showman. Every public event was carefully orchestrated and every speech painstakingly prepared and rehearsed. Rarely did he deviate from his prepared text. Despite mixed reviews from the press, those closest to him were aghast.

His speechwriter John Gunther ⁴⁵ wrote ‘this speech was the first indication to many that something may be gravely wrong with the President … he ad-libbed a great deal. In fact never in his whole career had he ad-libbed so much in an important speech; he departed from his prepared text no fewer than forty-nine times. This phenomenon too was disconcerting to those who were worried about his condition’. Speechwriter Samuel Rosenman ^46,47 wrote ‘The President made so many corrections in the reading copy (of the fifth draft) that it was retyped as a sixth draft … I was dismayed at the halting, ineffective manner of delivery. He ad-libbed a great deal – as frequently as I had ever heard him. Some of his extemporaneous remarks were wholly irrelevant, and some of them almost bordered on the ridiculous … It was quite obvious that the great fighting eloquence and oratory that distinguished him in his campaign only four months before were lacking’.

Gunther and Rosenman were unaware of the reason for the poor performance. Bruenn's 1970 paper offers an ‘official’ explanation: ‘It was noticed on the radio by many that he occasionally appeared to be at a loss for words. When queried about this later, he laughingly reported that while giving the speech he had spoken at intervals from memory and ‘off the record’ and that he had then had slight difficulty in finding the proper place when returning to read the printed words of his address’. ⁴⁸

A detailed analysis of the original reading copy of the address of 1 March provides a startling and eerie objective record of the cause of FDR's poor performance. The errors made by Roosevelt are not random. From the very first page of the prepared text there are word omissions and errors consistent with a left visual field deficit. There are about a dozen clear-cut word substitutions with errors on the left side of the word, reading decisions as conclusions, here as are, evidence for advance, arrangements for agreements as well as dozens of instances of inability to find words on the left-hand margin and omissions of individual words throughout the text. Virtually all of the deviations from the text are explained by these errors and the speaker's extemporaneous corrections in order to form semantically correct sentences. Some pages have relatively few errors but at times he became hopelessly lost, could not correct himself immediately and resorted to long ad-lib deviations, often incorporating a few random words of the prepared text within them. The ad-libs must have also provided brief respites from the exhausting, intense mental gymnastics required to present a coherent address before a packed congressional chamber and a national radio audience. Some of those present observed a problem with Roosevelt's right arm during the address, ⁴⁹ not knowing that throughout the hour he was using it is as a stylus while clumsily turning the pages of the speech.

Only a few minutes of video of the speech still exist. The audio recording is edited to remove a persistent cough, as was a transcript of the delivered address to make it more coherent, a task that press secretary Jonathan Daniels later commented took quite a bit of effort. ⁵⁰ That Roosevelt was able to complete the monumental task of delivering an hour-long address with such a visual deficit is testimony to his skill and experience as an orator, to his dogged determination and to an amazing degree of mental acuity. During that hour, FDR was not impaired by encephalopathy. This address also provides additional insight into his ability to function as ‘the sick man at Yalta’ a few weeks earlier.

On 29 March 1945 press secretary Jonathan Daniels and speechwriter Archibald MacLeish were preparing a memo that needed Roosevelt's approval: ‘With seeming precision he made a slight change in the first paragraph and pushed the paper back to me. We departed in haste [only to find that] the change he had made turned into confusion the rest of the statement [which] he obviously had not bothered to read’. Sheepishly they returned to FDR who corrected the error without objection. ⁵¹

There is objective evidence for a highly supportable scenario. A progressive right hemispheric deficit, first seen on the January 1945 video, was the cause of Roosevelt's poor performance on 1 March. Six weeks later, on 12 April, the President succumbed to a massive right-sided supratentorial haemorrhage.

Surely Roosevelt suffered from severe cardiovascular disease and hypertension that easily could have produced a similar clinical picture on 12 April but, considering the removal of a pigmented lesion in 1940, episodic severe abdominal pain beginning in 1943 and a 40-pound weight loss from April 1944, a more likely explanation for his death is melanoma, his terminal event being a bleed emanating from a metastatic lesion, a well-recognized and frequent consequence of the disease? Despite the fact that nowhere within Howard Bruenn's 1970 paper, written with the surreptitious participation of Roosevelt's daughter Anna and her physician husband, is there any consideration or discussion of malignancy; the motivation for writing it is contained in the accompanying editorial: ⁵²

‘The speculation in a recently published book, that the President was suffering from a metastatic melanoma in the brain, is laid to rest by Dr Bruenn; there was no clinical evidence for such a lesion and no autopsy was performed. We are given, by Dr Bruenn, the picture of a great and gallant man, fatigued by the burdens of his office and by his hypertension and reduced cardiac reserve, yet quite able to exercise his judgment and to use the fruits of his unique knowledge and experience in guiding the war effort’.

The ethics of presidential physicians is an ongoing matter of debate and controversy. In this instance, the role of Ross McIntire and Howard Bruenn to present a candid appraisal of their patient's condition was superseded by their respect, devotion and duty to their commander-in-chief. ⁵³