TWIN LAKES — Carol Abraham is experiencing a whirlwind year as Ms. Wheelchair Wisconsin 2016, preparing for Ms. Wheelchair America.
Abraham, 55, has Limb Girdle Muscular Dystrophy, a rare congenital neuromuscular disease. Progressive in that it continually worsens, LGMD causes muscle weakness and atrophy of the voluntary muscles, primarily in her arms, shoulders, legs and pelvis area. She has used an electric wheelchair since her 30s.
As there is no cure or treatment for the disease, Abraham deals with a progressive loss of strength and abilities, being forced daily to find alternative ways to adapt.
She explained that when growing up in the ‘60s and ‘70s, there was no mainstreaming in schools. There were no ADA (Americans with Disabilities Act) guidelines and schools did not offer IEPs (Individualized Education Programs) for students, so she had to adapt and advocate for herself.
“Until just a few years ago, I had not known anyone who had the same disease, therefore it was somewhat lonely to experience the effects of the disease and not know anyone else who could truly relate,” she explained. “Thankfully, now with technology and the Internet, I am able to connect with individuals from around the world who share in the same daily challenges and struggles of LGMD.”[su_pullquote align=”right”]Carol Abraham has a Go Fund Me page to help raise funds for the costs associated with being the state titleholder of Ms. Wheelchair Wisconsin and to compete in the Ms. Wheelchair America Contest in Grand Rapids, Michigan, this month. To help visit: www.gofundme.com/MsWheelchairWI2016 [/su_pullquote]
Abraham’s first symptoms of the disease surfaced when she was 5 years old and began walking on her toes. By 9, she was formally diagnosed after she struggled to keep up with her peers, had issues climbing stairs and appeared clumsy.
In high school, she had trouble standing from a seated position and often fell; climbing stairs became so difficult that by college graduation, she was unable to climb or descend stairs and needed assistance to rise from a chair.
With a degree in occupational therapy, Abraham worked — despite breaking her ankle, forcing her to wear braces to walk. The break ended her ability to drive, but she continued working until 2002, when she broke her femur while camping. In a subsequent surgery a rod was inserted in her leg. She was forced to retire.
A bone infection followed, and later, the surgery that was required to replace the malfunctioning metal rod in her leg caused a hip fracture, requiring a hip replacement in 2010.
“Currently, many simple, everyday tasks are impossible for me to complete independently, such as rolling over in bed, raising my hand to my face to wipe a tear, lifting a glass of water to my mouth, reaching for something out of the refrigerator, dressing, bathing, toileting independently or hugging my husband, family or friends, getting in or out of bed or even waving hello or goodbye,” she said. “Fortunately, the form of LGMD that I have does not impact my cardiac functions but it does progressively decrease my pulmonary functions.”
Abraham’s husband Tim, of 25 years, is her primary caregiver, spending two hours each morning getting her ready for the day, before he goes to work. He helps her get out of bed, gives her a shower, assists her in the bathroom and with dressing; in the evening, he puts her to bed and rolls her over when she needs it.
“Fortunately, I am still able to brush my own teeth, blow dry and style my hair and apply my own make-up,” she said. “When my husband is working, I have a paid caregiver that comes to our house for two hours over the noon hour to assist me with getting lunch and in going to the bathroom, plus she helps with laundry and other household cleaning tasks as time allows.”
For several years, until 2011, Abraham had another, smaller assistant to help her throughout the day. Sadie, her service monkey, recognized more than 100 words and performed numerous tasks, such as opening the refrigerator, getting a bottle of water, removing the cap and placing a straw in the bottle so Abraham could drink. She turned light switches on and off, opened file drawers and cupboards, retrieved dropped items, opened and closed doors and repositioned Abraham’s arms, legs and feet, as needed.
“I was blessed to have Sadie through a program called Helping Hands – Monkey Helpers for the Disabled out of Boston,” she said. “Monkeys are highly intelligent animals and can be very helpful as they have four hands with thumbs, plus a tail with a prehensile tip. Monkeys also have quite a long life expectancy of about 40 plus years, which is significantly longer than most service dogs.”
In 2011, the government changed the legal definition of an ADA service animal to include only dogs and some small horses. Sadie was no longer classified as a service animal, which meant she was no longer allowed in public facilities, such as hotels, when the couple traveled or camped.
“Since my husband and I are quite active, it was unrealistic to consider always staying at home and we could not leave her unattended at home for more than four to six hours,” Abraham explained. “It was sad to return Sadie to Helping Hands, but I know she has been placed in another home where the recipient is more homebound and can provide a wonderful opportunity for Sadie to excel in her skills to assist, she said, adding that maybe when she is more homebound due to the progression of LGMD, she may explore getting another monkey helper.
Abraham would like to receive a service dog through Custom Canines, but said there are few programs in the area that train service dogs for those with disabilities.
“My husband and I do have a small dog though, a Bichon Shih Tzu mix named Moose, who is a wonderful companion and best friend, although he is not trained as a service dog,” she said.
Though her daily struggles are great, and one day the disease disease will leave her bedridden, Abraham considers LGMD as a gift — one that God has used for the good of others.
“Living with a disability has shown me that, oftentimes, life’s struggles can truly be blessings in disguise,” she said. “For me, for example, my disability gave me reason to draw closer to God and to rely on him for comfort through prayer. Through my disability, I have discovered my need for God and it has strengthened my dependence on him. In my opinion, disability and illness is a blessing in this way.”
Abraham said God blessed her with a caring husband and wonderful friends who have stood by her and are ready to assist or support her.
“I am truly blessed to have Tim in my life,” she said. “Living with LGMD has enabled me to develop friendships with so many special people who have disabilities from around the world and also has directed me down a path in life where I am able to aid others in coping with a disability in healthy ways, while also assisting them with their daily challenges.”
Abraham said she has developed compassion and empathy for others with challenging health conditions or things that make them feel different in some manner.
“Through my faith, I have learned to focus on the many blessings in my life which far outweigh the challenges of my disability. I know that God is working through me and I see my work with people with disabilities as a lifelong ministry,” she said. “And it is comforting to know that my ministry with people with disabilities is making a difference in the lives of many.”
A lifelong member of St. John the Evangelist, Twin Lakes, Abraham has served the church on a parish, district and archdiocesan level in a variety of roles. According to Sacred Heart Fr. Terence Langley, administrator of St. John and St. Alphonsus Parish, New Munster, she is a committed Catholic, having served as a lector and on the parish council and finance committee.
“Her physical condition, to me, denotes her courage. Just to see the effort it takes for her to lift a pen to put into her right hand and take a note or sign a check is something that I would do instinctively, but it takes real effort and courage for her to do so,” he said. “She is so faithful in coming to meetings despite living in that electric wheelchair. She is a real evangelist and is not afraid to express herself and her opinion. She is very smart, moral, well-spoken and respectful of people who might disagree with her. I have never heard her complain about her condition; she is very positive.”
The world celebrated Limb Girdle Muscular Dystrophy Awareness Day, Sept. 20, 2015, thanks to Abraham’s efforts. She began the campaign in October 2014, to help educate the world about the group of more than 30 types of rare, muscle wasting diseases.
“After the state coordinator of Ms. Wheelchair Wisconsin saw some of the publicity that was on television, in local papers and on the Internet relating to LGMD Awareness Day, she connected with me and asked if I would be interested in submitting an application for the Ms. Wheelchair 2016 competition. I completed the 13-page application and submitted in November 2015,” she explained. “I had been interested in the competition several years ago, but didn’t feel I had enough time then to devote to the program due to church and other volunteer commitments.”
The competition was held at the Off Broadway Banquet & Conference Center/Stout Ale House in Menomonie, Saturday, Feb. 20. At the competition, Abraham met with a previous state title-holder to learn about the responsibilities of the new title holder and about the Ms. Wheelchair America program. Abraham interviewed with the three judges where they inquired about her disability, advocacy efforts and goals.
“After lunch, each of the contestants presented their platform speech in front of the guests and judges,” she said. “Prior to the final selection process, we also answered some impromptu questions from the judges.”
Winning the Ms. Wheelchair Wisconsin competition allows Carol the opportunity to travel throughout the state, promoting self-advocacy, awareness and to work toward removing barriers for those with disabilities.
She will also represent Wisconsin in the Ms. Wheelchair America 2017 competition in Grand Rapids, Michigan, Aug. 8-14.
“Winning the title of Ms. Wheelchair America 2017 would be an amazing opportunity, as I would be able to travel through the country advocating for people with disabilities and strengthening voice of the largest minority group in the country,” she said.
Although the disabled community is the largest minority group in the country, and is one that anyone at any time can become a member of, Abraham said it has never achieved the voice or level of political influence it deserves.
“My platform focuses on empowering people with disabilities to speak up and share their story to help raise awareness and advocate for their rights. People with disabilities need to break down the barriers that continue to exist and facilitate change that is necessary to truly eliminate discrimination of people with disabilities in our country,” she explained.
Carol’s motto is, “Together we are stronger. Together we can make a difference!”