What My Support Group Does For Me

MS Support Group Offers Members the 'Art of Healing'

Faith, creativity and companionship—these are the things that motivate 36- year-old Brett Weber, Ph.D., of Allentown. “It’s long been understood within the scientific and medical community that these can be powerful factors in healing and health,” Weber says. “Art has been a healing force in my own life, in all three ways.”

One week before completing his doctorate in neuroscience, Weber was diagnosed with multiple sclerosis (MS), a disease that damages the central nervous system. His neurologist suggested he continue as though he had not been given the diagnosis. So, Weber earned his Ph.D. and began work as a college professor in Pittsburgh. “I was experiencing many symptoms that year, and within a few months, I needed crutches to walk across campus,” he says. Weber began using a wheelchair the following year while teaching in Philadelphia, but had to resign after a severe MS attack.

That’s when a close friend suggested he focus his energy on another of his passions, painting. “It gave me a different direction, something positive to focus on,” he says. “Showing my artwork helps me bring greater public attention to my form of MS (called ‘progressive relapsing’), a rare form with no treatment proven to be effective.”

Having earned a bachelor’s degree in both biology and studio art, Weber wanted to bring his love of art and science together within his weekly MS Wellness Group. “I spoke to them about the creative arts in therapy, the changes I’ve undergone since my diagnosis and the things that have helped me most to fight my MS physically, emotionally and spiritually,” he says. “I shared stories about various artists in history, some of whom persevered against difficult health-related obstacles.”

And so the 15 people in the group became amateur artists, expressing their emotions through colors and brush strokes. “They used art to describe what’s it’s like to live with MS and created work that is uniquely their own,” Weber says.

Painting has been so well received by the group, several members have asked him to continue his therapy class. “Painting has made a real difference in my life,” he says. “I feel good knowing that something I decided to do for myself during one of the lowest moments in my life, is now helping others.”

Amputees Find Inspiration and Advice in Support Group

As a Lutheran pastor, Rev. Richard Stevens of North Wales has offered many parishioners a listening ear and guidance through tough times. After having both his legs amputated due to complications of diabetes, he needed support of his own.

Stevens fired up his computer in search of someone who could understand his frustrations and help him cope with everyday tasks. Through online forums, he found comfort from “cyber friends” (some as far away as England). But he still yearned for face-to-face fellowship. “I wanted to sit next to an amputee and swap life stories, or look into the eyes of someone who just had surgery and tell him things will get easier,” Stevens says.

Then, through his cyber community Stevens learned of the amputee support group at Lehigh Valley Hospital and Health Network. He and Barbara, his wife of 43 years, drive an hour from their home each month to be with the group and haven’t missed a meeting in more than two years.

It’s here that Stevens, 68, shares stories with fellow amputees about the “phantom sensations” he feels in his feet even though they’ve been gone for four years. It’s here that he learns about new developments with prosthetics.

The group listens as more recent amputees share their frustrations and fears of not being able to do the activities they love or care for their families. Veteran amputees like Stevens reassure them. “You need to find a reason to get out of bed and keep smiling,” he says. “Personally, I stay active in our church and try to plan something to do each day.”

Group members also offer support to patients before surgery. They visit them in the hospital to answer their questions and show them they’ll have friends to depend on afterward. Stevens hopes patients are inspired just by seeing him, a double amputee, walk with crutches into their hospital room. “If I can do it, so can you,” he tells them.

Barbara also benefits from the fellowship the support group offers. “We’ve made so many friends, and I see that some spouses are dealing with challenges much worse than Dick’s,” she says. “It’s been wonderful witnessing our group members doing things they once thought impossible.”

Lung Disease Patients Benefit from Better Breathers’ Club

Edward Ebert, 69, of Hellertown has been president of the Better Breathers’ Club of the Lehigh Valley for the past 20 years. A smoker since his teens, Ebert quit after being diagnosed with emphysema 23 years ago. He also has chronic bronchitis and a paralyzed lung.

“People in this support group helped me learn how to live a full life in spite of my limitations,” he says. The club meets monthly to hear experts speak on a variety of topics such as Medicare coverage, nutrition, clinical trials and new oxygen delivery systems. Members also have a chance to share with each other, and between meetings they stay in touch through the newsletter Ebert writes and publishes, titled “Breathless Chatter.”
Ebert acknowledges that it’s tempting to stay home because going out takes more energy, but he knows how important it is not to isolate yourself and risk getting depressed. “Our speakers are always informative,” he says.
“ Still, the best part of our meetings is getting together with people who are in the same boat. We encourage each other to keep going!”

Group Helps Mothers Gain Confidence When Breastfeeding Doesn’t Come Easy

When she was pregnant with her first child, Davina Hatton knew friends who’d tried breastfeeding but given up after they had problems. The 36- year-old Wescosville woman decided she’d try nursing, but if it proved too d ifficult, she’d opt for formula instead.

After her son Frank’s birth, she had a change of heart. Following a traumatic delivery, Frank had a condition that caused his head and neck to tilt to one side, and he sometimes refused to breastfeed. “It was then, when things weren’t going well, that I realized just how much I wanted to nurse him,” Hatton says.

When her son was 6 weeks old, Hatton joined a Lehigh Valley Hospital support group for nursing mothers called Monday Morning Moms. Facilitated by certified lactation consultant Beth Kushner, R.N., the weekly one hour meetings helped Hatton gain confidence as a mother.

“Beth told me it was important that my baby was getting breast milk, but it didn’t matter whether he got it directly from the breast or from a bottle. That was amazing,” she says. “This group gave me a resource for my questions, not just about breastfeeding but also about parenting. It gave me a place to go once a week where I knew I could talk with people who understood what I was going through.”

When he was about 12 weeks old, Frank began nursing easily. Hatton kept attending the support group anyhow, enjoying the opportunity to talk with other mothers. “Everyone supported everyone,” she says. “If Beth didn’t have the answer, someone else in the room often did. I looked forward to each Monday and was disappointed if I couldn’t go for some reason.”

When Frank’s first birthday came and mother and son “graduated” from Monday Morning Moms, Hatton and a few others formed Monday Morning Moms II. It’s a weekly playgroup for the toddlers and a chance for the mothers to stay in touch and talk about parenting. Hatton gave birth to a second son, Samuel, in December. Thanks in part to what she learned in Monday Morning Moms, breastfeeding is going smoothly.

New Group Provides Support for Postpartum Depression

Erin Luck of Macungie should have been ecstatic over the birth of her daughter, Jena, but instead she felt nervous, fearful and out of control. Then she attended a newly formed support group at Lehigh Valley Hospital called Depression After Delivery. “The group helped me realize I wasn’t going crazy,” says Luck, 30. “I didn’t feel connected to my baby, and I learned that other moms were thinking the same things I was.”

Her problem was postpartum depression (PPD)—and the speaker at her first support group meeting knew all about it personally. Kelly Ciminelli, also of Macungie, had battled PPD herself 10 months earlier. Her struggle began before there was a local support group for the condition. “I remember being in my kitchen when this wave of anxiety washed over me,” says Ciminelli, 35. “I knew I needed help, but I had a hard time finding it.”

She finally called 402-CARE, Lehigh Valley Hospital and Health Network’s referral service, and was connected with her “angels,” as she calls them—psychiatrist Susan Wiley, M.D., and clinical nurse specialist and therapist Carol Sorrentino. They treated Ciminelli with medications and counseling, and later they helped launch Depression After Delivery.

“When the support group formed, I wanted to go and tell my story,” Ciminelli says. “It’s important for me to be a resource for other women going through this. I told them I was once in their shoes. I said, ‘I got better. So will you.’ ”

“It meant a lot hearing Kelly’s story and knowing she eventually was able to stop taking anti-anxiety medication,” says Luck, who also benefited from medication as well as one-on-one therapy. Today she, too, has recovered fully. “I really enjoy my daughter now,” she says. “I finally feel like I’m a good mother.”

This page last updated 2/12/08 04:08 PM