Pure autonomic failure is also a rare neurodegenerative disorder affecting the autonomic nervous system that regulates body processes such as blood pressure and breathing rate. The main symptom is a sudden drop in blood pressure.

Morgan and his wife, Sheila, were surprised, to say the least.

“In all the years and specialists during my journey to find the cause of my symptoms, Dr. Sohrab was the first doctor to check my blood pressure in different positions of standing, sitting and laying,” said Morgan. “This was such a simple thing but no one had ever done it.”

Closing in on a final diagnosis

“Our diagnosis for his dizziness was based on a real and drastic drop in blood pressure when Mr. Morgan stood up,” said Sohrab. “We understood this by listening carefully to his symptoms. After I saw the patient in clinic, and confirming subtle but concrete signs, we did a radiosiotope brain scan to confirm his diagnosis of a parkinsonian disease.

The difference between Parkinson’s disease and variants of the disease centers around the dominance of presenting symptoms, says Sohrab.

“Individuals with Parkinson’s disease typically present with such symptoms as slowness, tremors and rigidity, whereas symptoms of parkinsonian variants often include a drop in blood pressure, sleep disturbances, dizziness and loss of balance, so the initial presentation plays a key role in teasing these variants apart.

“The biggest obstacle in getting a firm diagnosis was that the patient was not being listened to,” said Sohrab. “We talked with him and tried to get in tune with his experience. After listening carefully, we felt he had been misdiagnosed.”

“The patient’s presentation at the beginning was mostly autonomic and perhaps the reason behind the parkinsonian origin being overlooked, as is normally the case in pure autonomic failure. Despite being a rarer condition, pure autonomic failure has a better prognosis than multiple system atrophy,” said Sohrab, adding that Morgan has been referred to the U-M Health subspecialty movement disorder clinic for the final diagnosis and expert care.

The right treatment

Morgan is also being treated by U-M Health cardiologist James Froehlich, M.D., who is focused on managing his blood pressure and prescribing medication to help retain water in his system.

Sleeping with his head elevated, compression stockings, increased fluid, Gatorade intake and salt intake are also part of his daily routine, says Morgan, noting that he still needs to rest each day to alleviate his milder symptoms. He’s also exercising daily and working in his yard. And, as for golf, he’s now a substitute on a golf league and doesn’t turn down a golf cart.

“Little tweaks for a new normal,” he said.

“All of this is vital to keep his system active,” said Sheila of her “extremely fit” husband.

Future appointments include a U-M Health vascular neurologist to address his cerebral amyloidosis condition and a U-M Health movement neurologist for his Parkinsonian pathology, says Sohrab.

“We can’t reiterate enough how grateful we are to University of Michigan Health,” said Sheila. “Dr. Sohrab has helped tremendously with our confidence. He is such a large part of our journey.”

“Hearing the patient requires humility of listening,” said Sohrab. Although a complex diagnosis, he insists that “simple but empathic listening and spending time,” was key to making the diagnosis.

“Hearing,” Sohrab said, “is healing.”

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