Early Onset Alzheimer's: A South Bend woman's continuing journey
We first introduced you to Paula Abraham and her mother, Pauline, in 2012. Pauline was in a nursing home after being cared for at home for six years.
Prior to moving to the nursing home, Pauline was able to spend her days at Milton Adult Day Services in South Bend. Paula calls it Michiana's best-kept secret, saying, "This place not only was great for mom because they provided her with activities, but otherwise she would just sit at home in a chair."
"I used to call it mommy day care because it was perfect, you knew she was safe. It's like dropping a child off at day care," she adds.
Pam Huffer, executive director of Milton, explains how families facing Alzheimer's can be helped. "We're here from 7:30 to 5 Monday through Friday, and there are two sides to this. One is what we do for the people who come, the participants."
Things like a nice hot meal and conversation, exercise, art and even a game room if they want to shoot a little pool or play some cards.
And since music is such a part of memory, they do a lot of singing.
The second thing they offer, says Huffer, is much-needed respite for caregivers who take care of their loved one around the clock. "We know that if we can stack positive experiences one on another all day long, they get home with a sense of well-being."
It was heartbreaking for Paula and her family to move their once vibrant mother into a nursing home, where they spent time showing her family photo albums of people she no longer knew.
Three weeks ago, Paula's mother died. She says that, in spite of her mom's illness, she misses her every day. "It's a very empty feeling. She didn't walk the last three years; she couldn't talk for the last few years. It's like a part of your heart is taken away."
Paula care for her mother all while dealing with her own diagnosis of early-onset Alzheimer's a year and a half ago, at the age of 60.
But unlike her mother, who had few options early on in the disease, Paula is determined to be pro-active.
Nine months ago she enrolled in a national Alzheimer's trial, called the NOBLE Study, at the Elkhart Clinic. Neurologist Dr. Thomas Vidic is leading the local study. He has long been involved in Alzheimer's research, including a trial with the drug Aricept, which is still considered the gold standard for slowing memory loss.
The NOBLE Study is testing a new kind of drug, called T-187, and Dr. Vidic believes it could be a game changer, noting there has not been a new drug to treat the disease in over a decade.
The NOBLE Trial is a one-year program, and Paula is now in phase two and shared some promising news. "I am thrilled to report that they have seen a lot of progress with this study. It is now in phase three. I haven't deteriorated, and they do extensive testing with me. The drug is showing promise."
The trial is going so well that Paula was told at her nine month checkup that she will automatically move onto phase three after her next visit.
She says she has maintained her memory and is praying that T-187 will get FDA approval and spare her daughter and granddaughter the pain Paula felt watching her mother deteriorate, saying, "One of the worst feelings in my entire life was having her look at me and saying, 'Who are you?'"
Paula is doing her best to educate people on the importance of early diagnosis by speaking at many engagements.
She plans to continue to enjoy life, saying, "I have a new baby granddaughter and I hope that my daughter and my granddaughter, by the time they get to adult age, that there is some sort of cure or some way to stop the process, slow it down, cure it. That's what keeps me going."
And as the nation recently watched former first lady Nancy Reagan laid to rest, a woman who fought for more research as her husband battled this mind robbing disease, Paula says the first lady described Alzheimer's best. "Mrs. Reagan said, 'It's the longest goodbye.'"
It's a long goodbye that many of us have faced as this insidious disease robs our loved ones of mind, family and memories.
We will continue to follow Paula's battle with Alzheimer's and update her progress with the NOBLE Study.
If Alzheimer's has touched your family, as it has mine, you know we must find a cure. The problem is only getting worse. How can you help? It's actually easy, fun and good for you.
Alzheimer's and Dementia Services of Northern Indiana is holding its annual walk on June 11 at Howard Park in South Bend. All of the proceeds stay in our area and help local families deal with Alzheimer's. Paula has a team, and last year her team was the top fundraiser.
For a link to the walk, the NOBLE Study and Milton Adult Day Services, you can just click below.
Saturday, June 11
Dr. Thomas Vidic