Thousands of runners toeing the line at the 2016 Boston Marathon will wear singlets bearing a charity organization’s name. It’s a final effort to raise awareness after they’ve spent months raising money for the cause.
Many have very personal ties to their charities, and Philip Posa’s connection runs about as deep as it gets. He is a member of the Run to End Alzheimer’s team, and he also has been diagnosed with early symptoms of the disease.
“Philip is the first marathon runner we know of to run for our team who himself has cognitive impairment. He is an inspiration to the other runners and to those with Alzheimer’s disease,” said Angela Floro, director of the Run to End Alzheimer’s program.
Posa began experiencing symptoms of Alzheimer’s two years ago, at age 43. He was a runner in good health, and it was difficult for doctors to figure out what could be wrong with him — there are no blood tests to diagnose Alzheimer’s, and brain imaging tests such as MRIs and PET scans are used mostly to rule out diagnoses rather than confirm them. About 95 percent of Alzheimer’s patients are older than 65 and often experience a decline in physical ability.
Dr. Brent Forester, chief of the division of geriatric psychiatry at McLean Hospital and assistant professor of psychiatry at Harvard Medical School, said patients who develop dementia earlier in life may also have symptoms that are different from older patients, making it more difficult to determine a specific diagnosis.
Posa has mild cognitive impairment, which Forester places on a spectrum between normal aging and dementia. Patients with mild cognitive impairment experience changes in thinking abilities beyond what normally occurs with aging. As a patient’s ability to function declines, there is a progress toward the clinical syndrome of dementia.
One of Posa’s symptoms is trouble with speech. He speaks slowly and softly, and recently developed a stutter. He searches deliberately for the right words to express himself. When he misspeaks, he admits, with a hint of a smile, it is his 5-year old daughter who is often the first to correct him.
The other area where Posa has been affected has been his executive function, or the area of the brain responsible for organizational and regulatory abilities like time management and initiating action. Completing tasks for a single day can be a challenge. Sticking to a marathon training plan might be impossible if not for the support of his wife Michele.
Michele supported her husband’s running long before he started having health problems, serving as both cheerleader and pit crew at many races. Posa, who lives in Westhampton Beach, N.Y., has run several endurance races, including the New York City Marathon and Chicago Marathon.
This time around, she has also been instrumental in his training, structuring Posa’s days to fit in runs, reminding him to run when scheduled and tracking him on her phone to make sure he makes it home safely.
Posa joined the Alzheimer’s team on a long run in late March on the Boston Marathon course from Hopkinton to Boston College. The run was supported by coaches, staff, and volunteers, but Michele was there every 3 miles to check in and make sure her husband was doing well.
The run was also an opportunity for Posa to run with Nicole McGurin, one of two guides who will accompany him Monday. The guides will help Posa navigate race-day logistics, deal with the crowds, maintain hydration, and provide whatever support he needs.
McGurin, who is director of clinical services for the Alzheimer’s Association, has been communicating with Posa and his family since he was selected for the team. McGurin regularly leads support groups for patients with younger-onset Alzheimer’s and their caregivers. She believes running the Boston Marathon will be good for Posa, but also play an important role in reducing the stigma associated with Alzheimer’s and related dementia.
When he was diagnosed and began dealing with the progression of his symptoms, Posa gave up running for a while. Getting a grasp on what his future held medically, professionally, and financially took priority. He has cut back on his days at his job, and his company has been supportive.
And, he admits, he just was not all that interested in running.
But the opportunity to run the Boston Marathon brought back that motivation.
Forester thinks that’s a good thing.
“Running this marathon not only provides the physical benefit of aerobic exercise but is a perfect example of a meaningful activity for Philip, and his involvement could help delay the progression of the disease,” Forester said.
Running the Boston Marathon has also been the catalyst for Posa to tell friends and family about his condition. The outpouring of support has been more than his family could have ever imagined.
He describes himself as a private person, and is clearly uncomfortable when asked to talk about himself. But he realizes that he is in a unique position to help raise awareness for the disease.
Posa has also helped the cause financially. He’d initially hoped to raise $15,000 for the Alzheimer’s Association, but has already raised more than $66,000 and was recently named the top fund-raiser among all John Hancock charity program runners.
He will have more than 40 friends and family coming to Boston to cheer for him on race day.
“It feels good to have that kind of strength behind you,” he said.Philip Posa’s marathon fund-raising page can be found here.