After losing her husband to a rare neurological illness, the widow tries to raise awareness

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Debbie Feldman lived the American dream almost all her adult life: she married her best friend (a prominent lawyer), managed her career as an accountant and raised her two sons in the highly coveted city of Avon, in Connecticut.

For nearly two decades, the happy family of four has flourished in their loving home. But in 2004, the situation unfortunately took a dramatic turn when Sam, Feldman's husband, was unexpectedly diagnosed with progressive supranuclear palsy (PSP): an uncommon degenerative brain disease that exhibits symptoms similar to those of the disease Parkinson's disease and amyotrophic lateral sclerosis (ALS), better known. like Lou Gehrig's disease.

In the last three years, Sam has been quickly touched by the debilitating symptoms of the disease. The PSP has affected his approach, often pushing him to take painful falls in various places. Sam's vision has also declined and swallowing has become a challenge, among other paralyzing symptoms.

PHOTO: Debbie Feldman has lost her husband, Sam (pictured left), because of a rare condition called PSP. — Debbie Feldman lost her husband, Sam (pictured left), because of a rare condition called PSP.

His body began to succumb to neurological disease, though, ironically, his thoughts remained alive, even until his last days. Sam's voice was ferocious and his laughter became contagious – a memory the family cherishes so much.

He died at the age of 52 in June 2007.

"At the end of my husband's life, while he was in a hospice, I realized that life was becoming simple," Feldman told ABC News. "It was not about our assets, but about our relationships. I love him very much and I can not quantify my love for him. "

PHOTO: Sam Feldman died at the age of 52 from a rare condition called PSP. — Sam Feldman died at the age of 52 from a rare condition called PSP.

Following the death of her husband, Feldman aspired to a creative outlet to commemorate his legacy, as did his father, who died after battling multiple sclerosis (MS). After careful consideration, she channeled her entrepreneurial prowess and developed a collection of jewelry memorabilia, named Linked, in an effort to comfort the customers likely to understand Sam's story. She began planning the business. company in 2012 and wholesaling in 2015.

Each charm of the collection is forged with a phrase – such as "Be brave", "Can not measure the love" and "Let the light shine through" – which reflects a memory that Feldman shared with her husband .

"I've created this line of jewelry to give words to the person who is struggling to express themselves," Feldman said. "Every piece of jewelry is tied to a personal feeling. I want jewelry to connect people with sincere emotions. "

PHOTO: Debbie Feldman has launched her own line of jewelry to raise public awareness of the PSP after the death of her husband. — Debbie Feldman launched her own jewelry line to raise public awareness of the PSP after the death of her husband.

In order to help raise funds for research, 10% of Linked's pendants and bracelets product can be used for either PSP or MS. The funds are donated to psp.org or nationalmssociety.org.

Feldman continues to devote his life to raising awareness of the disease.

What is progressive supranuclear palsy?

PSP, also known as Steele-Richardson-Olszewski syndrome, is a neurological disease resulting from the deterioration of cells in areas of your brain that control body movement and thinking. The disease, which worsens with time, affects the majority of senses and general well-being.

Statistics show that about three to six out of every 100,000 people in the world have the disease, according to the National Institute of Neurological Disorders and Stroke (NINDS).

At present, there is no effective treatment against PSP. Pneumonia is the leading cause of death.

The researchers, however, continue to research why brain cells are degenerating in those who suffer from the disease, according to Dr. Jeff Bronstein.

"I think it's very encouraging that we're getting better at understanding the PSP," Bronstein told ABC News. "That makes studies a lot easier, more readily available, and multicenter studies, we're getting closer."

What are the symptoms of PSP?

The symptoms may vary from one patient to another who has been diagnosed with PSP.

According to Bronstein, a person usually suffers from loss of balance, blurred vision, uncontrolled eye movements, unexplained falls, stiffness, slurred speech and difficulty swallowing. solid foods and liquids. Changes in mood and behavior – such as irritability, memory loss, and tantrums – may also appear. Depression, urinary problems and constipation are additional symptoms.

PSP can often be misdiagnosed as Parkinson's because it shares many of the same symptoms. According to Bronstein, problems with eye movement, behavioral changes and memory loss are key identifiers that help a doctor or neurologist diagnose the disease.

"It can be very difficult to diagnose very early for this reason," Bronstein said. "There is no blood test.We treat the symptoms in a specific way.Since the disease is very variable, you must customize the treatment according to each person with the problems."

PHOTO: A stock photo shows a doctor talking to his patient. — A stock photo depicts a doctor talking to his patient.

Medications usually help to mask the symptoms, but they do not actually change the progression of the disease, according to Bronstein. Patients are predisposed to head injuries, fractures, choking and pneumonia.

Non-pharmacological methods can also help to relieve discomfort. Walking aids and devices such as chairlifts can help reduce the risk of falling back, according to Bronstein. Bifocals or prescribed glasses, called prisms, can help to solve problems with lowered eyes. Physical therapy can help relieve stiffness by keeping joints flexible and occupational therapists have tools to help people feed themselves because swallowing becomes more difficult.

How long can you live with PSP?

PSP is a progressive degenerative disease. The prognosis therefore varies from one patient to another.

According to Bronstein, it is possible that a person who has been diagnosed with PSP may live six to eight years after the onset of the first symptoms of the disease.

The onset of PSP usually occurs around the age of 60, but may occur earlier in life, according to NINDS. The disease usually affects men more than women.

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