Solna Braude describes her brother’s struggle with neurological disorders in her interview with Cure PSP. Her brother, Laurence, was no stranger to the medical world. He was a surgeon, cornea specialist, ophthalmologist, and researcher.
At the age of forty-seven Laurence began to feel unusually fatigued and noticed a weakness in his arm and left leg. He was referred to a neurologist who determined that Laurence was experiencing the onset of Parkinson’s disease.
His neurologist prescribed a medication called Sinemet and gave him permission to go back to work. After taking the medication for a while he found that not only did it not alleviate the symptoms, but it also caused drowsiness.
Laurence was determined to receive an accurate diagnosis and consulted a series of neurologists in England and Canada. MRIs and PET scans were ordered. Then Laurence was diagnosed by a world-renown neurologist who said that Laurence had a rare disease called multiple system atrophy. The neurologist was surprised that other doctors had not come to the same conclusion.
A Generous Donation
Laurence and his sister could not understand why it was so difficult to diagnose what appeared to be a common disease, namely Parkinson’s. It was during that conversation that Laurence decided to donate his brain by way of a brain autopsy upon his death.
Solna voiced her opposition to his plan. As next of kin she knew that she would be responsible to carry out his wishes and told him of her objections. But Laurence was determined. He explained the importance of having a definitive diagnosis. Finally, Solna agreed.
Even after death, the Federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) protects doctor-patient confidentiality. It was therefore Solna’s responsibility to be the recipient of the autopsy report and send a copy of the report to every doctor that Laurence consulted. It was Laurence’s wish that these doctors could then compare the autopsy report, which is the only way to get an accurate diagnosis, against their diagnosis.
A Number of Incorrect Diagnoses
Several doctors were at the top of their field. The diagnoses of the group ranged from Young-onset Parkinson’s disease, Parkinson’s disease, vascular parkinsonism, parkinsonism that is unresponsive to Sinemet medication, idiopathic Parkinson’s disease, striatonigral degeneration, and multiple system atrophy. But according to the autopsy report, none of these diagnoses were correct.
Solna and Laurence made arrangements in anticipation of his death. Dr. Dennis Dickson, a renowned pathologist in the Jacksonville, Florida Brain Bank was to receive his brain.
Laurence died three years after his initial diagnosis at the age of fifty of a condition that was unrelated to his neurological disorder.
The Autopsy Report
The true diagnosis, according to the autopsy report, did not agree with any of the earlier diagnoses. The autopsy report stated that the cause of death was Lewy body disease.
Now Solna feels that not only did the solution help her accept Laurence’s death but it was comforting to know that his donation will help other patients and their doctors.
About Lewy Body Dementia (LBD)
LBD is a type of dementia affecting cognitive abilities and movement. Its symptoms worsen over time. The disease affects approximately 1.4 million people in the U.S.
LBD causes protein clumps to accumulate in the brain. The buildup eventually affects memory, thinking skills, movement, behavior, and mood. The overall condition is labeled as dementia.
The doctors who received the autopsy report expressed their gratitude and each commented that the report would be useful for future diagnosis.
A physician in England who had diagnosed Laurence presented his case at a conference in Europe attended by other physicians. He stressed how difficult it is to make an accurate diagnosis. This doctor used Laurence’s case as an excellent example for encouraging brain donations with follow-up reports on the results.
The newly-formed Braude Foundation has been sending funds to CurePSP to encourage other patients with their own donations, to advance neurological research, and find a cure.