After losing husband to rare neurological disease PSP, widow tries to raise awareness

PHOTO: Debbie Feldman lost her husband, Sam, to a rare disease called PSP. PlayDebbie Feldman
WATCH What is Progressive Supranuclear Palsy (PSP)?

Debbie Feldman lived the American dream for most of her adult years -- she married her best friend (a prominent attorney), succeeded in her career working as an accountant and raised their two sons in the highly desirable suburban town of Avon, Connecticut.

For nearly two decades, the happy family-of-four thrived in their loving home. But in 2004, things unfortunately took a drastic turn when Sam, Feldman's husband, was unexpectedly diagnosed with Progressive Supranuclear Palsy (PSP): an uncommon, degenerative brain disease that has similar symptoms to Parkinson's Disease and Amyotrophic Lateral Sclerosis (ALS), better known as Lou Gehrig's disease.

Over the course of three years, Sam was quickly afflicted by the crippling symptoms of the disease. PSP affected his gait, often causing him to take painful tumbles in various locations. Sam's vision also declined and swallowing became a challenge, among other paralyzing symptoms.

PHOTO: Debbie Feldman lost her husband, Sam (pictured left), to a rare disease called PSP. Debbie Feldman
Debbie Feldman lost her husband, Sam (pictured left), to a rare disease called PSP.

His body began to succumb to the neurological disease, though ironically, his thoughts remained sharp as a tack, even up until his final days. Sam's whit was fierce and his laughter became infectious -- a memory the family cherishes dearly to this day.

He passed away at the young age of 52 in June 2007.

“At the end of my husband’s life, while he was in hospice, I realized that life became simple,” Feldman told ABC News. “It wasn’t about our possessions, but rather, our connections. I love and miss him dearly and cannot quantify my love for him.”

PHOTO: Sam Feldman passed away at the age of 52 to a rare disease called PSP. Feldman family
Sam Feldman passed away at the age of 52 to a rare disease called PSP.

In wake of her husband's passing, Feldman yearned for a creative outlet to memorialize his legacy as well as her father, who died after a battle with multiple sclerosis (MS). After much consideration, she channeled her entrepreneurial prowess and developed a keepsake jewelry collection, called Linked, in an effort to bring comfort to customers who could empathize with Sam's story. She began planning for the business in 2012 and started selling wholesale in 2015.

Each charm in the collection is coined with a phrase -- such as "Be Brave," "Can't Measure Love" and "Let the Light Shine Through" -- that reflects on a memory Feldman shared with her husband.

“I created this line of jewelry to give words to the person who has trouble expressing themselves,” Feldman said. “Each piece of jewelry is linked to a personal sentiment. I want the jewelry to connect people with heartfelt emotions.”

PHOTO: Debbie Feldman launched her own jewelry line to raise awareness of PSP after her husbands death. Debbie Feldman
Debbie Feldman launched her own jewelry line to raise awareness of PSP after her husband's death.

In an effort to help raise funding for research, 10% of the proceeds from Linked's pendants and bracelets can be earmarked either for the fight against PSP or MS. Funds are given to psp.org or nationalmssociety.org.

Feldman continues to devote her life to raising awareness about the disease.

What is Progressive Supranuclear Palsy?

PSP, also called Steele-Richardson-Olszewski syndrome, is a neurological disease that results from deterioration of cells in areas of your brain that control body movement and thinking. The disease, which worsens over time, affects the majority of one's senses and overall well-being.

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

At this time, there is no effective treatment for PSP. The most common cause of death is pneumonia.

Researchers, however, are continuing to investigate why brain cells degenerate in those who suffer from the disease, according to Dr. Jeff Bronstein.

"I think it's really encouraging that we are getting more and more of an understanding of PSP," Bronstein told ABC News. "It really makes the studies a lot easier to do. They're more readily available and are multi-center studies. We are getting closer."

What are the symptoms of PSP?

Symptoms can vary between patients who are diagnosed with PSP.

Typically, a person suffers from loss of balance, blurred vision, uncontrolled eye movements, unexplained falls, stiffness, slurred speech and has difficulty swallowing solid foods and liquids, according to Bronstein. Changes in mood and behavior -- such as irritability, forgetfulness and outbursts -- may also appear. Additional symptoms include depression, urinary problems and constipation.

PSP can often times be misdiagnosed as Parkinson's Disease because it shares many of the same symptoms. Problems with eye movement, behavior changes and memory loss are all key identifiers that help a physician or neurologist diagnose the disease, according to Bronstein.

"It can be very hard to make the diagnosis very early on for that reason," Bronstein said. "There is no blood test. We treat the symptoms specifically. Since the disease is very variable, you need to kind of customize therapy for each person having the problems."

PHOTO: A stock photo depicts a doctor talking to her patient. Getty Images
A stock photo depicts a doctor talking to her patient.

Medication usually helps to mask symptoms, but it does not actually change the disease progression, according to Bronstein. Patients are predisposed to head injuries, fractures, choking and pneumonia.

Non-pharmacologic methods can also help remedy discomfort. Walking aids and devices such as chair lifts, can help to reduce the chance of patients falling backwards, according to Bronstein. Bifocals or prescribed glasses, called prisms, can help fix problems with looking down. Physical therapy may help with stiffness by keeping joints limber and occupational therapists have utensils that can help people feed themselves as swallowing becomes more difficult.

How long can you live with PSP?

PSP is a progressive, degenerative disease, so prognosis varies for each patient.

It is possible for a person diagnosed with PSP to live six to eight years after the first symptoms of the disease appear, according to Bronstein.

Onset of PSP is usually seen around the age of 60, but could occur earlier in one's lifespan, according to NINDS. The disease typically effects men more than women.