New Florida committee will study rare disorder often misdiagnosed as Parkinson’s Disease

By

Shane Ersland

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A new Florida committee will study a rare disorder that is often misdiagnosed as Parkinson’s Disease following the passage of Senate Bill 186 last week. 

SB 186—known as the Justo R. Cortes Progressive Supranuclear Palsy (PSP) Act—will establish the PSP and Other Neurodegenerative Diseases Policy Committee. It will require the state’s surgeon general to submit a progress report and a final report of the committee’s findings to the legislature and governor. 

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Sen. Jason Brodeur (R-Sanford) sponsors SB 186, and discussed it during a Senate Committee on Fiscal Policy hearing on Jan. 31. He said PSP often presents symptoms related to Parkinson’s Disease, but is far less common.

“Without proper detection at an early stage, PSP will only worsen with life-threatening complications,” Brodeur said. “We have not found a cure for PSP, so the biggest focus is on managing care. This bill (directs) the Department of Health to establish a work policy group comprised of healthcare workers, family members, and advocates whose aim is to identify those in our state with PSP and other neurodegenerative diseases, create a standard of care for detection and treatment, (and) develop recommendations to help improve patient awareness, especially in our more vulnerable population areas.”

Brodeur said Bob Cortes—a former state representative who served in the House from 2014 to 2018, and attended the meeting—urged him to write SB 186. The bill is named after his father, Justo R. Cortes, who suffers from PHP.

“My father not only gave me life, but he made me the man I am today. Unfortunately, he’s suffering with a disease that none of us really knew what it was. They were telling us that he had Parkinson’s, but it wasn’t. He fell back six times, (had) six stitches in his head, (and) broken ribs. We finally discovered the right diagnosis, but it took almost two years.”

— Bob Cortes

Bob Cortes said his dad was present when he was sworn in as a member of the House. 

“That was the dad I knew all my life,” he said. “And today, dad is in a wheelchair. I have to get him out of bed in the morning, and bathe him, and do most of the things that we all take for granted. There’s no cure for PSP, but (the) best we can do is find out more about it, and try to help others suffering from this disease. Because many of them in Florida, and throughout the nation, end up being misdiagnosed. And it takes a long time.”

PSP also takes a toll on caretakers of patients with the disease, Bob Cortes said.

“Mom and dad had been married for 65 years. And mom went from being a wife to a full-time caretaker, and mom’s 82 years old. Can you imagine the toll and the strain that takes on her, and the frustration she’s living through today? I look forward to hopefully passing this, and seeing if we can do some meaningful change for those suffering from this horrible disease.”

— Bob Cortes

Brodeur noted that PSP—along with multiple system atrophy, corticobasal degeneration, and Lewy body dementia—are all Parkinson’s Plus disease states.

“We put a lot of focus on Alzheimer’s, dementia, and other neurodegenerative conditions, and we’re going to add this to the list,” Brodeur said. “As the [related] science improves, we can help make a difference for those who are suffering, and the family members who are taking care of them.”

Both chambers unanimously approved SB 186. It was enrolled last week, and will now head to Gov. Ron DeSantis’ desk for his signature.

Readers interested in learning more about health legislation in the state can register to attend the 2024 Florida State of Reform Health Policy Conference, which will be held on April 25 at the JW Marriott in Tampa. A panel on the “Takeaways from the 2024 Legislative Session” will be held at 2:15 p.m.

1 thought on “New Florida committee will study rare disorder often misdiagnosed as Parkinson’s Disease”

  1. My Partner, who is 66 years old, was diagnosed with Parkinson’s disease last year. We noticed that he was experiencing hallucinations, slow movement, disturbed sleep, and twitchy hands and legs when at rest. He had to stop taking pramipexole (Sifrol), carbidopa/levodopa, and 2 mg of biperiden because of side effects. Our family doctor recommended a PD-5 treatment from natural herbs centre which my husband has been undergoing for several months now. Exercise has been very beneficial. He has shown great improvement with the treatment thus far. He is more active now, does more, and feels less apathetic. He has more energy and can do more activities in a day than he did before. As far as tremors I observe a progress, he improved drastically. I thought I would share my husband’s story in case it could be helpful, but ultimately you have to figure out what works best for you. Salutations and well wishes

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