By Bonnie Adams, Managing Editor
Photo/submitted
Northborough – Nearly 40 years ago, Donna and Dan McDonald, who were high school sweethearts at Algonquin Regional High School, were married. Together they raised two sons, Jason and Tom, who now each have two children of their own. In 2001 Donna was diagnosed with Multiple Sclerosis which thankfully is in remission for the time being. But that is the not the couple’s main health concern. For in 2012 when he was only 54, Dan, a former truck driver and manager, was diagnosed with Lewy Body Dementia (LBD), a disease that is similar to early onset Alzheimer’s Disease.
According to the Lewy Body Dementia Association, Inc. (LBDA), LBD is an umbrella term for two related diagnoses – Parkinson’s disease dementia and dementia with Lewy bodies.
Dementia is the primary symptom and includes problems with memory, problem solving, planning, and abstract or analytical thinking. Those diagnosed may suffer from cognitive fluctuations day to day and have Parkinson’s-like symptoms include rigidity or stiffness, shuffling gait, tremor and slowness of movement. Patients may also have hallucinations or dreams that may cause them to act out violently. Compounding the disease is that certain drugs that are commonly used to treat symptoms for other conditions may cause serious complications in LBD patients that can often be fatal.
Although perhaps not as well known as Alzheimer’s, LBD is not rare. According to the LBDA, nearly 1.4 million Americans have been diagnosed with the disease. An autopsy on the brain of the late comedian Robin Williams showed diffuse signs of LBD.
In Dan’s case it was first thought that he was suffering from depression, Donna said. It wasn’t until other symptoms presented that a diagnosis of LBD was made.
Because of these symptoms, a patient cannot be left alone. In the McDonalds’ case, Dan does go to adult day care for part of the day until Donna returns home from her job as a claims supervisor at SGD Insurance Agency, Inc. Some days are better than others, she said, when glimpses of the husband she knows and loves peeks through the disease.
“There are some lucid moments,” she said. “Most others wouldn’t recognize them but I do. You never know when they will happen.”
“I try to keep things really consistent for him. There are only a few people that I feel comfortable leaving him with because those are the ones he feels comfortable with,” she added. “And every Sunday we have a family dinner with our sons and their families.”
Prior to his disease, Dan was a “bigger than life” personality who loved to dance, golf, watch his beloved Patriots, and would do anything for anyone, Donna said.
Dan is a member of the Shrewsbury Knights of Columbus and at one point, had served as the president of the Sons of the American Legion for the Vincent Picard Post 234.
“If he had $20 in his pocket when we were leaving, but someone needed it, he’d give it to them,” Donna said. “He’d give you the shirt off his back.”
Once a month Donna attends the Central Massachusetts LBD Caregivers Support Group, which is held at Southgate at Shrewsbury. She also is thankful, she said, to work for a company that has offered her unwavering support.
“They have been so great and so understanding,” she said. “Whatever I need as far as hours I can work, they allow. Also, I have total moral support and I am treated like family.”
Between the cost of adult daycare and medicines, the couples’ expenses are approximately $1,000 a month. At this point, their health insurance does not pay for the daycare so friends have established a fundraising page at www.giveforward.com to help raise monies that will give the couple some assistance.
Joe Sullivan, a neighbor of the McDonalds for 25 years, is the captain of the fundraiser. Bill and Elayne Finney, longtime friends of the couple, are co-captains. The goal is to raise $19,000.
“They are really wonderful people,” Bill Finney said. “Donna is not one to ask for help. But we really want to help ease her burden.”
The average duration of LBD is typically five to eight years after the onset of obvious LBD symptoms, but may range from two to 20 years. Donna knows that her husband’s journey with this disease will not improve. It is her faith, she said, and the support of family and friends who give her the strength to face each day.
“I am so overwhelmed by the generosity of those who have helped us,” she added.
For information on the Central Massachusetts LBD Caregivers Support Group, call Cathy Flanagan at 508-735-2059 or email [email protected].
To donate to the fundraiser for the McDonalds, visit www.giveforward.com and type in “For Danny and Donna.”
To learn more about LBD, visit http://www.lbda.org.
