Community Spotlight-Jane Forrester tells Kevin’s story to raise awareness of neurodegenerative diseases
Neurodegenerative disease. It is as scary as it sounds. Loss of cognitive function, dementia, difficulty with speech, swallowing, balance issues, and vision problems are just a few of the more serious symptoms associated with this group of diseases which includes Alzheimer’s disease, Lou Gerhig disease (ALS), and Parkinson’s disease.
Millions of Americans are living – and dying - with neurodegenerative disease, with no cure on the horizon.
Early treatment in some cases prolongs an improved quality of life, but in order to receive effective early treatment, an accurate early diagnosis is necessary. For the 5-6 people per 100,000 who suffer from progressive supranuclear palsy(PSP), however a diagnosis is almost always hard to come by.
Progressive supranuclear palsy, further referred to as PSP, is a rare brain disease not widely known and very often misdiagnosed. It’s similarity to Parkinson’s disease adds to the difficulty in diagnosis. Most PSP sufferers are first diagnosed with Parkinson’s, then when traditional Parkinson’s treatment methods are not met with any improvement, eventually a PSP diagnosis is concluded.
This was the case with Kevin Forrester, a life-long resident of New Boston who lost his battle with PSP in September of 2020 at age 65.
Kevin was diagnosed with PSP in 2016 by doctors at UT Southwestern Medical Center in Dallas, after nearly three years of experiencing symptoms. In early 2013, Kevin was recovering from hip replacement surgery when he and his wife Jane lost their only son in a tragic automobile accident. In the months to follow, Kevin began experiencing unexplained falls, which he and Jane attributed to his surgery and a less active lifestyle. It wasn’t until the next year, in February of 2014, that the Forresters brought these symptoms to the attention of a doctor, who immediately referred them to a neurologist.
Nearly two years and a battery of inconclusive tests followed before Kevin was to get his diagnosis, and Jane says when they handed her the information packet, she knew that PSP had been the culprit of Kevin’s medical problems all along.
“We were in the car coming home from Dallas when I started reading the packet they gave me,” she remembered. “I read through all the signs and symptoms and it was as clear as day to me – I said to myself, ‘Yep, this is it.’”
In the next four and a half years, Kevin’s health continued to decline. The falls became more and more frequent, and his speech was affected greatly. The man who was once an active and robust logger, cattleman, and rancher lost over 100 pounds as his ability to swallow diminished. Medications helped with the symptoms, but as of yet, there is nothing on the market to stop the progression of PSP.
As Kevin’s primary caregiver, much of Jane’s knowledge and support came from the Facebook group Progressive Supranuclear Palsy. With almost 7,000 members, this group was a wealth of knowledge from people who had been through and were going through exactly what Jane and Kevin were. “I had to do so much research on my own,” Jane said. “There is just so little known about this disease, and so few medical professionals who are trained in diagnosing and treating it, that the most helpful information I got came from people just like me.”
Jane says it is important for Kevin’s story to be heard, as increased awareness of PSP and its symptoms might improve the quality of life of anyone who is able to catch it early. “We had never heard of PSP before. Most of our doctors had never dealt with or treated PSP before,” she explained. “If we had known sooner, there are things we could have done differently. And if hearing Kevin’s story helps one person who is suffering with PSP, it’s worth it.”
More in-depth information about PSP can be found at www.psp.org.