Gathered for their January meeting at the Resource Center for Accessible Living (RCAL) in Kingston, attendees of the Mid-Hudson Limb Loss Group introduced themselves to two visitors with a capsule description of what they’re dealing with.
“Left above-knee amputation, 2022, due to sepsis,” said Nancy Hulahan, a former occupational therapist who had known exactly how to furnish her home with grab bars and other equipment so as to assure her independence.
“Right below-knee, from a car accident in 2013,” said Dan Breslin, joining the meeting by Zoom from Athens, New York. “I worked on saving it until 2018. It was a choice.” “Above-knee, right side, Lost my leg on my motorcycle, trying to keep up with a guy,” said Barbara Monteith, also on Zoom, from her home in Lake George, where she lives alone and cares for her horse, rabbits and cats.
The Amputee Coalition, a national organization, estimates that 2.3 million people in the U.S. are living with limb loss. Another 3.4 million have a limb difference, which is when an arm or leg is not shaped in the usual way, more often by a congenital issue but sometimes due to injury or disease.
“Tonight’s topic is self-care,” began co-facilitator Linda Neu. “Every day is a challenge. I practice self-care by making myself presentable, going for walks near the reservoir, four-wheeling on the mountain, and getting involved with new hobbies.”
When Neu, a Hurley resident, lost a leg above the knee in a motorcycle accident, she was determined to ride her beloved horse Shyla again. She succeeded due to her own grit and the help of family, friends, companion animals, and advanced medical technology.
“I can’t is not in my vocabulary,” she stated. “Sometimes you just have to find another way.”
She wants to raise awareness in the Hudson Valley about the group, which can help
amputees and their families and friends supporting them. “There’s a lot going on here,” she said. “We’re here to support each other and make new friendships. It’s a place to come and feel comfortable, tell your story, bring happy and not-so-happy moments. People can also talk to us about how to help the person who has an amputation to go on and have a successful life.”
Samantha Lucas was a yoga professional until Covid shut her studio down. Her below-knee, right-side amputation was the result of a motorcycle accident in 2015.
“Before I lost my leg, I was practicing and teaching — as well as after,” she said. “Self-care is having exercise to do every day. Yoga helps with emotional stability. When I was in the throes of depression, yoga really helped me.”
Lucas said that amputees might need assistance to figure out how to practice yoga.
For Gina Kothe, who lost a leg below the knee to a crush injury as a Kingston firefighter, finding self-care means expressing her emotions.
“If I have a crisis, sometimes my husband will say, can it wait till I get home? But if I wait I miss my opportunity. I’m an impatient person.”
One of Kothe’s outlets is collecting prostheses that are no longer being used and sending them to South Africa, where supportive devices are hard to come by. “They come from deceased people, or they’re ones that that didn’t work out,” she explained. Here, you can’t recycle them. A prosthetist won’t fit you with a used one.”
About half of amputees do not use a prosthesis, but the six group members present have them.
“I got a new leg today,” said Kothe. “It has a cow print. I gained 30 pounds, so I needed a new socket. For a new foot, socket, visit, bits and pieces: $26,000.”
Due to changes in insurance regulations, she has to pay 20 percent of that amount. Other people have insurance that covers all their costs, but some find it a stretch to deal with the expense of prosthetic devices.
When Neu was injured, the Amputee Coalition connected her with a peer advisor who helped orient her toward available services and offered emotional support. Now she is training to be a peer advisor to others. “When I see an amputee in a parking lot, I go over and introduce myself.”
Peer advisors are helpful because, as Lucas points out, “You don’t know what you don’t know. Everyone’s journey is different, but the resources are not. Hearing a lot of solutions makes a difference.”
One resource that’s hard to come by is a mobility dog, specially trained to prevent falls and help people move around when their balance is impaired. The large-breed type of dog required does not have a long enough lifespan to make training financially worthwhile for most service organizations.
After extensive research and long waitlists that didn’t pan out, Kothe is training Opal, a four-month-old Great Dane, with the help of Operation At Ease, a Schenectady-based organization that supports veterans and first responders.
“I am working on bracing and balance,” said Kothe. “Many times you have to go up stairs, and there’s no railing. No one wants to see me on my hands and knees, and I don’t use a cane. I don’t usually need it, and then when I need one I don’t have it.” A mobility dog could help her navigate such situations.
When Breslin asked his prosthetist about balance, he was told to “try to get outside your comfort zone once in a while.” Among Breslin’s projects was renovating his kitchen. “It’s not easy trying to get underneath the sink with my leg on, getting up and down to get tools,” he said. “I keep working on things around the house, continually pushing myself to do more.”
Neu agreed with that approach. “When you step outside your comfort zone and achieve a goal, it’s an incredible feeling.”
Group outings take place about once a month. Expeditions planned for this year include snow tubing, archery, kayaking, bowling, climbing, and biking.
Members recently took a trip to Montano’s shoe store in Saugerties. “I asked one of owners if he could talk to us about customizing shoes,” said Neu, “like putting in snaps or zippers. We keep trying to find new products that make our lives a little easier.”
A buddy system will be kicking off at the February meeting. Each month, every member will be assigned a buddy to check in with. Buddies will change each month.
Neu told a story describing a social role people in the group sometimes fill. Last summer, she was making purchases in a convenience store and asked a man who was walking in if he would help carry the items to her truck. Outside, he noticed her prosthesis and wondered, “How do you do it?” He revealed that he was a recovering alcoholic who had hit bottom after a decade of sobriety and had been on his way to buy a six-pack of beer.
Neu immediately connected him with a friend who’s a prison chaplain. The man is still sober, has made changes in his life, and now talks with Neu regularly on the phone.
The Mid-Hudson Limb Loss Group meets at 6 p.m. on the second Thursday of each month at the RCAL, 727 Ulster Avenue, Kingston. For information, see the Mid-Hudson Limb Loss Group’s Facebook page, email midhudsonlimbloss@gmail.com, or call Linda Neu at 845-750-0467.
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