TORRINGTON – Eleanor Thornton, aka Elly, a local from this area, has been diagnosed with a non-treatable terminal disease known as palsy-corticobasal syndrome (PSP-CBS). Elly and her family would like to bring awareness to this disease. They would also appreciate any donations to help them cover the expenses of her treatment and the cost of research to learn more about this disease.
“We would like to bring awareness to this disease,” Beverly Nelsen, Elly’s mother, said. “That way if someone else has this in their family, hopefully, they can recognize it. Our biggest hope is to help someone else who might be suffering from this disease.”
Elly, a Lingle-Fort Laramie High School graduate, has been diagnosed with progressive supranuclear palsy-corticobasal syndrome (PSP-CBS). This disease is classified as a parkinsonian disease and is extremely rare.
“People with progressive supranuclear palsy (PSP) develop a range of difficulties with balance, movement, vision, speech and swallowing,” according to nhs.uk. “Initial symptoms of PSP can include loss of balance, muscle stiffness, extreme tiredness, changes in personality and behavior, dislike of bright lights, difficulty controlling the eye muscles, and blurred or double vision.”
“The pooled prevalence rate of all variants of PSP is 7.1 per 100,000 people,” according to the National Institute of Health’s website.
“The prevalence rate of the PSP-CBS variant is one to nine per 1,000,000 people,” according to orpha.net.
This disease has no treatment or cure and is considered a non-treatable terminal diagnosis. While life expectancy can vary with PSP, the average span is only five to seven years.
At this time, Elly receives Social Security disability benefits, and her husband, Walt Thornton, has insurance that helps cover much of her medical needs. It is still hard for them to cover all expenses. Currently, they are waiting for her to receive Medicare, but because of a 24-month wait period, it won’t happen until January 2023.
At this stage of her disease, Elly is considered home-bound and needs CNA homecare. They have to pay for her homecare out-of-pocket because their insurance does not cover it.
“There is an average of $650 or more in expenses per month than the incoming SSDI payment,” Walt said. “The family is covering that expense at the moment, but funds are being extinguished, and we will soon have to look at other options for that to be covered.”
After all of the heartache and emotional toll that Elly and her family have gone through with this illness, they would like to help find a cure for PSP. There is a not-for-profit group called Cure PSP that works with the Mayo Clinic and the University of Florida which are accepting postmortem brain donations for research.
Elly has decided that she would like to donate her brain after death to this important cause.
While neither Cure PSP nor the Mayo Clinic charges for any part of the brain donation process, there are other costs.
According to psp.org, “The pathologist or diener will charge for their services in removing, preparing and shipping the brain tissue. This cost typically ranges from $500 to $2,000 and is the responsibility of the family. Additionally, a funeral home or mortuary service may impose a fee for transportation of the deceased and/or for the provision of cold storage.”
Elly’s family is aware they have been blessed to have certain resources available to them, that many others don’t. They do not take asking for help lightly.
Walt said, “The family is very humbled and gracious for any help, in any way! The most precious gift that anyone could give them is your prayers to make this journey!”
Kelly Sittner, a friend of Elly’s from First State Bank, has set up a donation fund in the name of Beverly Nelsen, Elly’s mother. Donations can be gifted at the First State Bank locations in Torrington, Guernsey, Wheatland and Casper.
Elly grew up in Opa-kocka, Florida. When she was ten years old her father passed away, so her mother decided to move back home to Lingle.
After she graduated Lingle-Fort Laramie High School, she moved to California with her first husband. They have two children together, Desiree Martinez Dworak, of Wheatland, and Reynaldo Martinez, Jr, of Tempe, Arizona.
Later, Elly moved to Bremerton, Washington, where she remarried and took the last name Marts. Eventually, she moved back to Goshen County and worked for First State Bank for many years.
In April 2017, Elly married Walt and moved just south of Wheatland. Around this time, Elly started to have questionable symptoms that bewildered doctors.
In early June 2020, Dr. Angelo Santiago, a neurologist with the Memorial Hospital of Converse County diagnosed her with progressive supranuclear palsy (PSP).
After a second opinion with a movement specialist from the Anschutz Medical Campus in Aurora, Colorado, Elly got a more specific diagnosis of the variant of PSP that she battles. The full diagnosis is progressive supranuclear palsy-corticobasal syndrome (PSP-CBS).
“PSP doesn’t actually kill but the side effects, mainly pneumonia from aspiration, UTIs and trauma from falls, do,” Walt said. “The only treatments that slow the decline of the disease down are physical, occupational and speech therapy.”
At this point, Elly has likely had the disease for a little over five years.
