Susan Binnall is a wife, a mother and a grandmother at home, but in the Alpha-1 community she’s nothing short of a hero.
Binnall, of Newton, MA, was a maintenance worker for United Parcel Service, monitoring the perimeter of the building and fixing anything that was broken. But her job became more difficult when she started having a hard time catching her breath. After struggling with the issue for three years, Binnall saw a doctor who diagnosed her with COPD. Four years later, in 1999, she was diagnosed with breast cancer.
After undergoing surgery, chemotherapy and radiation treatment, Binnall’s COPD was getting worse. She asked her oncologist if there was a connection between her treatment and her lungs, but the oncologist said there was no evidence that the two should affect each other.
“I was worried, because my oncologist showed a lot of concern when I asked her about my difficulty breathing,” Binnall said. Then another series of tests revealed that her COPD was caused by Alpha-1.
She started augmentation therapy and pulmonary rehabilitation immediately. She stopped working and focused on her hobbies. But after a few months of beading, knitting, sewing and reading, Binnall was restless. She wanted to find something constructive to do with her time.
That’s when she turned to Fred Walsh, her AlphaNet coordinator. He told her about the COPD Information Line. She “jumped in with both feet” and is now volunteering four hours, twice a week as a manager. She enjoys talking with other associates and patients about COPD and Alpha-1.
“She’s the perfect volunteer,” Walsh said. “She goes through the day without a single peep of complaint, and you know what a struggle it is for her.”
Her involvement with the Alpha-1 community has continued to grow. So far, she:
- Became a co-support group leader for the Alpha-1 Association
- Promotes Better Breathing meetings for the American Lung Association (ALA)
- Holds fundraisers for Alpha-1 research (her New England Relief Fund raises money for Alphas in need of transplants).
- Contacted senators and representatives regarding important bills affecting Alphas. She helped fight for protection against genetic discrimination through the Genetic Information Nondiscrimination Act (GINA), just signed into law in May.
- Honors Alpha Angels, by trying to get different regions to sew patches on a quilt in memory of Alphas who have passed away. Everyone can come together to compare quilts during national educational conference meetings.
At the Association’s national educational conference in June, Binnall received the Helen Chase Walsh Memorial Award for her ongoing volunteer leadership. The award is presented each year by the Walsh family to someone who has spent a period of years giving outstanding service to the Alpha-1 community.
Binnall still doesn’t believe she’s doing anything out of the ordinary. In fact, when she was hospitalized with a heart attack two years ago, it wasn’t her health she was concerned about. It happened to be the weekend of the 2006 ALA Escape to the Cape Bike Trek. The three-day 160-mile trek is an at-your-own-pace bicycle tour that goes through Cape Cod from Plymouth to Provincetown.
“I remember her organizing the bike trek when she had her heart attack,” said Fred Walsh. “I walked in and she had all her folders spread out across the hospital bed. That’s dedication.”
“I was just so upset about missing it,” Binnall said. “But I made sure I did everything I could to make it the next time.”
And she did.
Last year, she not only coordinated the event, she rode her own bike for 14 miles. “It was the first time I rode a bike since my kids were little, almost 20 years ago.”
Binnall, who sleeps with a CPAP (continuous positive airway pressure) machine and uses oxygen during strenuous activity, believes the key to staying healthy is to remain active. She works out at the gym three to four times a week. She attends Thai Chi classes whenever possible, and does water aerobics.
“She keeps a handle on what she has to do to hold steady. She knows the routine: exercise, nutrition, positive attitude, and knowing her limits. She follows them to a T,” said Walsh.
While she continues to fill her day with volunteer work, events and fundraisers, she finds her true joy in her family, spending the rest of her free time creating memories with them.
After losing her father (diagnosed as an MZ, a “carrier”) to liver disease two years ago, and watching her brother undergo a liver transplant this past April, Binnall’s newest task is to persuade her family to get tested. She tries to combine her family and volunteer work by getting her family more involved with the Alpha-1 community.