Tips for daily living

Losing a limb is a life-changing event. How much of an effect it has on your daily life depends on each individual and situation. For some, it’s just a momentary pause before life gets back to nearly normal, but for others it can be a dramatic change in lifestyle where every activity is somehow different. It’s not only the amputee who has to make changes, often family members, friends and caregivers – even coworkers – must adapt as well. 
If you are an amputee, you’ve likely found ways to adapt your life, whether it’s through a prosthesis or other means or a combination of both. If you’re a recent amputee, we’ve gathered a few items and ideas that will help you in the days and months to come.

• Thick Leggings: The thick material holds up better against wear. If they do happen to wear, a quick stitch or two fixes the problem.
• Elastic shoelaces. These little miracles stretch so your foot can slide into the shoe without loosening the laces.
• Clear pathways. Navigating a cluttered stairway or overflowing garage may not have been such a big deal before, but as an amputee, you’ll want to have a wide, clear path for navigation to prevent tripping and falling hazards.

• Pant clips can help single-handed people who find it hard to pull up pants and underwear.  Clipped to the front of paints, they can be removed and tucked away for later use.
• Daily living accessories such as voice-controlled lamps, light switches and phones, doorknob-turners, button aids (picture), dressing sticks (picture), one-handed cutting boards – you would be amazed at the variety of aides available today.
• Velcro can be used in a variety of ways to assist in daily activities. Many use it on the bottom of their prosthetic foot to keep on any kind of dressy flats, sandals, flip flops or other shoes that don’t tie, in place.

• Iron on reinforcement patches secured to the inside of pants can help keep the socket from rubbing away at the material.
• Bra fastening adapters can help those singled handed ladies with the nearly impossible task of fastening a bra.

Life after limb loss is all about finding ways to what you want, in the best ways that work for you. You may not be able to do things the same way, but with some adaptation, you’ll eventually develop systems and habits to function and get the tasks accomplished. Have you discovered your own trick to make life easier? If so, drop us a note and let us know.

Curvy Girls Unites Scoliosis Patients

Founded 2006 by Leah Stoltz, Curvy Girls (https://www.curvygirlsscoliosis.com/) is an international scoliosis peer support system. Leah founded the organization “talk to other girls who were going through the same thing--- feeling alone, different, angry about their brace, and worried about having to have surgery.”

Leah’s Story

“Fitting in isn’t easy when you’re a teenager wearing a body brace 23/7. I was finishing my first year in middle school when I was diagnosed with Adolescent Idiopathic Scoliosis and had to wear that “thing” to school. I wore my brace faithfully despite arguments and failed attempts to hide my brace in my locker. Ultimately, I required surgery to correct the two curves growing in my back. On June 27, 2006, I had two titanium rods and 22 screws affixed to my spine. My biggest concern was that I wouldn’t be able to dance for a year.”

Curvy Girls acknowledges that scoliosis affects the patients both physically and mentally. “While the back brace is supporting our bodies, Curvy Girls is our emotional brace. We need to help our girls feel better about themselves from the inside out.”

Patients are able to find local support on the website and local leaders within their own neighborhoods. In the Richmond area, Marissa and Ella are Curvy Girl leaders excited to connect with new friends.

Marissa is 11 years old and excited to be a Curvy Girls' Leader. She was diagnosed with scoliosis in June 2017 and began wearing a Boston Brace in August 2017. She wear it for 16 hours a day, even though she says it is “SO uncomfortable!” She did get used to her brace and now enjoys acting, musical theater, singing, playing piano, dancing, and hanging out with friends and family.

Ella is 11 years old and loves staying active in sports and with her friends. Her favorite sport is gymnastics, but she also plays soccer, dances and is on the swim team.  She was diagnosed with scoliosis in August 2017, the summer before her 5th grade year.  Her curve was at 20 degrees and she was told she needed to wear her back brace 18 hours per day. She has 2 sisters and is in the middle sister.  Both Ella and her younger sister were diagnosed with scoliosis at the same time. Her younger sister is 8 years old and has a 25-degree curve.  Both girls feel blessed to have a sister to share their journey. She is excited to be co-leader with Marissa of the Richmond area Curvy Girls’ group. Her hope is to carry on the positive message and support that she has received for many girls in the area. 

Next meeting is:
June 17th at 1:00pm
July 15th at 3:00pm

To learn more, visit https://www.curvygirlsscoliosis.com/

Then e-mail Marissa and Ella for location.

How To Get Active For Spring

Thank goodness for Spring! Longer days, warmer temperatures, and the opportunity to get back out there and enjoy our favorite spring sports and activities. If you’re a new amputee, or maybe you’re been an amputee for a while, but are ready to be more active – now is a great time of year to get started. Sports are a great opportunity to connect with other amputees and enjoy the camaraderie of taking on challenges together. You might have some questions on what’s right for you, so we have a few tips to get you started.

There are many opportunities for people living with limb loss to get back out in the world and live an active lifestyle. The activities range from golf to running to rock climbing and skiing to much more.  The amount of activities that can be adapted for amputees to participate is nearly endless.

One of the easiest activities to get started in is cardiovascular exercise. Most people still hate it; but its benefits are essential to good health. Cardiovascular exercises strengthen your heart and reduce body fat. Getting your heart beating a little faster also helps to relieve stress, which is also important for a healthy overall well-being.

“There are many forms of cardiovascular exercises that amputees can take part in, with or without a prosthesis,” according to The Amputee Coalition,  “Some are better suited for active amputees, while others are better suited for those who are beginners or who may have medical restrictions.”

There are many options of cardiovascular equipment to choose from. If you don’t have access to cardiovascular equipment, or a gym membership, now is a great time of year to get outside and enjoy nature. The weather is still relatively cool, and perfect for getting some fresh air. On days when the weather is not so great, walking on a treadmill or riding a stationary bike is a good way to get started.
If you’re ready to progress into something different, looking for an organized team, or just more information - we’ve compiled a list of resources for more information about specific sports or organizations.

• ActiveAmp.org has a large directory of sports and activities for amputees
• Disabled Sports USA’s mission is to provide national leadership and opportunities for individuals with disabilities to develop independence, confidence, and fitness through participation in community sports, recreation and educational programs.
• The Amputee Coalition, provides a downloadable fact sheet of sports programs.
• The National Sports Center for the Disabled (NSCD) is one of the largest therapeutic recreation agencies in the world. The NSCD offers a variety of year-round sports and recreational adventures.
• The Wheelchair Sports Federation is a national non-profit that provides opportunities for the disabled and wheelchair-bound adults and youth to play sports recreationally and competitively.
• New England Disabled Sports (NEDS) is a 501 (c) (3) not-for-profit organization, providing adaptive sports instruction to students of all ages and abilities. 
• The National Amputee Golf Association (NAGA), is supported by the Professional Golf Association (PGA) and the United States Golf Association (USGA). NAGA currently has over 2,000 members in the United States and some 200 players from 17 other countries.
• The American Amputee Soccer Association (AASA) is the governing body for Amputee Soccer in the United States and is a member of both the World Amputee Football Federation (WAFF) and the United States Soccer Federation (USSF). Their outreach programs help interested players maximize their proficiency, build self confidence, learn the power of teamwork, all while building a strong social network.
• The Wounded Warrior Amputee Football Team’s (WWAFT) mission is to raise awareness and support for our wounded warriors and their families. The team is made of up service members who have served and are now using a prosthetic device to engage in everyday life activities.  By showcasing our team on the football field, the WWAFT seeks to inspire our fans and highlight the perseverance of our service members (both active and former) who continue to face life’s challenges without excuses.
• Ski 2 Freedom provides free information so that people with physical disabilities or other special needs and their families to enjoy the physical and affective benefits of mountain activities such as skiing or snowboarding.
• Sportable. The reason Sportable exists is to transform the lives of people with physical and visual disabilities through sport!
• Challenged Athletes Foundation. A group that supports those with physical challenges – empowering them to find community, confidence, and conviction. 
• USA Paralympics. A division of the nonprofit United States Olympic Committee, is dedicated to becoming the world leader in the Paralympic Movement and promoting excellence in the lives of people with Paralympic-eligible impairments, including physical disabilities and visual impairments.
• Sheltering Arms. An adaptive golf program at Sheltering Arms offers education and opportunities for safe and enjoyable participation in golf.

Knowing the Patient is Key to a Lifelong Partnership

Knowing the Patient is Key to a Lifelong Partnership

Powell Orthotics and Prosthetics has provided freedom for patients since 1932. Years of professional experience, craftsmanship, and technology enable Powell to provide the benefit of mobility and independence to patients.

To provide patients with a superior device, the staff at Powell O&P first wants to get to know you. It’s important to understand your lifestyle and goals. Whether you’re returning to work, walking the dog, cutting the grass, playing with your children, running or just simply getting around. Each device is unique and custom fabricated to fit your needs.

A vast amount of componentry options are available today and Powell’s experienced staff, with your input, is here to ensure you receive the most appropriate device. They take the time to explain each option, helping to fit patients with a device that meets their needs.

 And it all starts with a scan.

We spoke with Michael R. Monteiro, Certified Prosthetist, ABC, and owner of Powell Orthotics and Prosthetics about the process to make a prosthesis for a patient.

Michael took us through the first step in the process, showing us the machine used for scanning the patient. “The scan works just like a satellite system,” Michael said. “It’s all radio waves so they don’t feel anything except for the pressure of me rolling this across their limb. It takes an image of it and puts it onscreen. It’s pressure sensitive so if I press in deep, it will show a deeper presence on screen, so it gives me tissue feedback, kind of like you do when you hand cast.” They run the scanner across the remaining limb, to make the prosthetic limb match the size and shape.

“After that,” continued Michael. “I have an image on screen. I manipulated it to what I need it to do to allow the patient to stand up. There’s areas we want to put pressure on, there’s areas we don’t want to put pressure on. I do all that and I send the file to Scotty, who’s our technician.”

Scotty will then carve out a model and create a clear socket for the patient to stand up on.

        

From standing to walking

This is an example of someone’s limb, after manipulation. Michael showed us his computer rendition of the scan. “This is what our socket will end up looking like when we’re finished,” he said. “We put space in for bones, there’s a small bone at the top of your leg a little nerve runs behind it just like your funny bone only it’s in your leg. So the kneecap sits up in here and the end of the bone we build out, because there’s usually just skin and bone like your shinbone - not much coverage. We try and make it a little between the bones we squeeze, on the medial side of the fibula bones we squeeze. If we make it triangular shape, when you move, the prosthesis moves as well.”

The CAD drawing gives Michael a vision of what everything will look like. He demonstrated how he can rotate the image and look at it from behind and down inside it to make sure he likes what he’s seeing.  He explains that what he sees when he scans someone is “more or less what we see if we have someone sitting on the table.” Michael points to areas on the screen, “All these areas, I create to help him stand up. It disperses weight and pressure, kind of like a bed of nails…if you don’t feel any of them, you won’t have any problems, if you feel one of them, it’s a problem.”

Once Michael is pleased with the scan and manipulations on screen and is sure he’s been able to disburse all the pressure and body weight out, he sends the model to Scotty for carving. Michael starts with the computer, but his partner Joe, prefers the traditional way by hand casting a model first and making the changes and then scanning it in and sending it to Scotty.

Michael then showed us a room full of blank forms and a lathe.  He explained that the lathe has a CNC processer, and carves in 2 planes as it moves. The material they use is harder than Styrofoam because they have to pull plastic over it and they don’t want it to compress. They send the file to the lathe, carve it, and then end up with the model.

Once they have a carved model, all patients receive a diagnostic socket. This diagnostic socket is clear, so the team can stand the patient upright, check to make sure everything’s fitting properly, make sure they have pressure where it’s needed, and make sure they don’t have pressure where they don’t want it. The diagnostic socket is made from a low-temperature plastic, so that if there’s an area causing issue, Michael and team can take it off and heat it up, make a change, cool it down and slide it back on.  “We can modify the diagnostic socket and 90% of the time the patient can walk on this, so they know statically and dynamically how it feels,” said Michael. “Standing may feel good, but walking around may feel different because the body’s doing different things.”

After the carving is complete, a clear plastic pre-form dome goes into the oven, with adapters that go on the end – depending on what they intend to put into the socket.  The oven vacuum forms the plastic based on time and temperature. They then trim the piece out and end up with a plastic socket ready for adapters that they can then attach to a tube system and a foot. “We want them to try it on and stand,” said Michael. “We want them to stand and walk on the feet they’re going to use, because it’s going to feel different with different feet on there. Again, if we need to make changes, we can heat it up, press it out, cool it down and slide it back up on them, to make sure everything’s comfortable before they leave. “

The perfect fit

The challenge is finding the right match with the patient’s wants and the patient’s needs. “What they think they want and what they actually need may be different,” said Michael. “There are a series of tests that are pretty predictive of patient’s ability, for newer patients, that’s done during the measurement. If you can walk with a walker or with crutches, vs. some who’s in a wheelchair – that helps determine what kind of feet or knee components we’re going to start with.”

New amputees receive what’s called a preparatory prosthesis, which is designed to get them walking in therapy and limb shrinkage.  The preparatory is designed to get the patient down to a stabilized size, once muscles complete their atrophy and stop losing mass. This process takes about 4-6 months after a patient starts walking. At that point in time, it’s time to start all over again – it’s time for the new leg.

“We use a gel liner, either silicon, urethane or TPE plastic to cushion and protect the skin,” continued Michael. “Almost everybody can benefit from having a gel liner against the skin. It grips the skin, it protects the skin from rubbing blistering and irritations, that’s why it’s so universally used. Some have a pin that goes into a lock, and that acts as suspension, so as they move the prosthesis moves with them.”

Prosthetics have certainly come a long way in appearance thanks to today’s technology. “We can do any color a patient wants,” said Michael. “If patients bring us a shirt, or something special they want on their prosthesis, we can laminate that on there with a clear coat, so whatever the fabric on there can show through.”

We mentioned how important it is to understand the patient’s lifestyle and goals. “We never want the prosthesis to limit someone, but we don’t want to build it so technical that they can’t use it, or can’t generate enough force to use it,” said Michael. “People always say they want ‘the best,’ and they associate the best with the most expensive. I can fit you with a Porsche, I can fit you with a Combine. If you’re a farmer, the Porsche is not going to help you. The cost is about the same. It’s really about finding out what your needs are and fitting you with the best product to fit your needs. Then you’ll get the most out of it.”

“There are dynamic feet, which will give energy in return, and there are energy absorbing feet to give you lots of motion,” Michael says. “If you’re hopping up and down on trucks, you may need something that has a lot of cushion, if you’re walking around a constructions site, you want something that will give you all kinds of side to side motion, because you’re stepping over all kinds of terrain and if you’re sitting in an office all day, you’ll want a smooth foot, if you’re a runner, you’ll want something that allows you to do that.” The process is really about patient matching. Same thing with prosthetic knees, there are a plethora of options depending on patient capabilities and needs.”

In speaking with Michael, it’s clear he and his team have a progressive and honest approach to getting patients back to their daily lives. They have a number of amputees on staff, allowing them to have a unique perspective on their patient’s daily challenges and how to prevail. They know their job is not done when the prosthetic is finished – they have resources for patients, such as support groups and county and state resources to help patients get back to living the life they want.

Marathon Man

Geep Schurman, aka Ahab, was born with fibular hemimelia, which is a deformity of the limb’s bone structure and associated muscle and tendons, often defined as congenital absence of the fibula. It is the most common long bone deficiency of the extremities. Geep explained, “I had no fibula, and a deformed right foot with only 3 toes… the entire right leg was shorter than the left. Before my amputation, my orthopedic specialist fitted me with a full-leg brace, which was referred to as an appliance.”

In those days, Geep called his appliance a “contraption” to help with his mobility. The apparatus employed lace-up thigh and calf corsets, a buttocks ring for weight support, knee hinges and steel support rods and a series of leather restraint straps. He wore this apparatus from the time he was 2 years of age until he was 10.

At 10, he had his leg amputated, 7 inches below the knee. Even with the amputation, his first prosthetic limb had metal rods, hinged at the knee, with a thigh corset, a buttocks ring and leather hamstring restraints behind the knee. “The noticeable difference in the new appliance,” Geep said, “was below the knee… since my foot was now gone, the prosthetic technicians fashioned a wooden socket conformed to the shape of the residual limb (stump) with a rubber foot attached to the end.”

Geep’s experience with Powell began in the early 1950s before they were even in business as Powell. “Marvin F. Pollard’s orthotic and prosthetics shop was a block or two east of MCV on Broad Street,” said Geep. “They worked primarily with amputees, but also helped me before my amputation, with adjustments to, and the actual fabrication of my appliances. I remember my dad taking me in that shop many a time for fittings and adjustments. I continued with Pollard until my amputation in 1956… by then Tommy Powell, Sr. had purchased and relocated the business to 414 West Broad Street,” said Geep.

His particular type of prosthesis was a “Patella Tendon Bearing” (PTB), so named because it was designed to bear all his body weight on the strongest part of the residual limb. For a period of roughly 10 years post amputation, Geep had numerous minor surgeries to remove cysts that would form due to pressure changes in the knee area. Every surgery was followed by a recovery period, during which Geep was not able to wear the prosthesis… and each surgery slightly altered the fit of the prosthesis. “I would systematically visit Powell where they would “always” take the time necessary to help me walk comfortably again.”

In 2012, Geep went to Powell with a new request. “I told them I wanted to run,” said Geep. “My wife is a marathon runner… I want to run a marathon too!” He met with Joe Sullivan, one of the Powell partners who is also a BK (below the knee) amputee. Joe was a Paralympic volleyball player, and currently coaches several local teams, so he totally ‘got it’ when Geep said, “I want to run a marathon.”

“Joe takes the time to listen,” continued Geep. “He’s always right there to help me. I told Joe I wanted a leg that I could run on, moreover, that I was interested in distance running.” Geep’s trust in Joe was rewarded. Geep said, “Joe put together a leg for me that allowed me to run the 2014 marathon in Richmond!”

Not only did he finish, but he also did it on a compressed training schedule due to a bout of tongue cancer. “By August 2013, I was ready to run that year’s marathon,” said Geep, “but I was diagnosed with tongue cancer and was in treatment until December that year. After removal of my feeding tube in March of 2014, I was back in training.” He ran the Monument Avenue 10K, the Patrick Henry Half and completed the 2014 Richmond marathon in November.

He didn’t train much from January of 2016 until May of 2017 while his wife, DeeDee, was undergoing treatment for metastatic breast cancer. “I wanted to spend that time with her and didn’t train,” he reflected.

Subsequently, Geep channeled his emotions into training with Team DD KIWI, the novice marathon training team, that was named in his wife’s honor. “When she passed, I joined the novice team, but my prosthesis wasn’t fitting correctly,” said Geep. “Five years of below the knee atrophy had seriously compromised the fit.”

He went to see Joe at Powell to replace his limb. He told Joe, “I want to upgrade from my current ‘Variflex’ to a ‘Cheetah’ foot,” which is the choice of many distance runners. “But - I want it to be an every day leg too…. not just for running.” Powell answered the challenge. Building a prosthesis with a cheetah foot is more labor-intensive, and time consuming, and between each stage of completion, test-runs are necessary. By the middle of October it was ready. Geep remembers, “The process was challenging, but the results were so worth the time and effort. The ‘Cheetah’ is more comfortable than any of my previous legs.”

Geep hadn’t trained since mid-July. “I started the marathon anyway,” he said. “even though I only made it 22 miles. It wasn’t about winning or losing… only to have fun and to honor my wife. I had the support of the entire marathon training team, the encouragement of my running partners and DeeDee’s indomitable spirit… and thankfully, the dedication of Powell. My plan is to get that medal in 2018 and to enjoy the journey.”

With determination like his – we have no doubt he will.

Showing others how to stay physically active after amputation

Connie Moe is a firecracker of a woman from Richmond, Virginia. Though only 4’10” in height, her personality is as big as they come. Being an amputee hasn’t slowed her down one bit, and her story and determination to lead an active lifestyle is inspiring.

“I’ve always been athletic. I’m not particularly good at any sport, but love them all,” she said. Connie completed her first 10K in 2002, “One of the things I enjoyed most about doing a 10K was the training – that was as much fun as the 10K itself,” she said.   It was during that race that she began to have issues with her ankle.

“I ran the 2002 10K in Richmond and after the race my ankle looked like it had a goose egg on it,” she said. “I went to several physicians, but could never get the problem fixed.” After a number of attempts to resolve the issue, she started considering her alternatives. “I had heard about ankle replacements,” said Connie, “I thought might be a smart option. After so many surgeries, the idea of a new leg and ankle sounded great to me!”

Connie continued, “I went to a world renown specialist in ankle replacement, who initially did not want to take me on as a patient because of my age.” At this point, it was now 2005, 3 years after her initial issues with her ankle. “But after he talked with me and found out I was a personal trainer, and had taught exercise classes since 1985, he agreed to see me and then accepted me as a patient.” For Connie, exercise is an essential activity, so it was important to her to be able to maintain an active lifestyle.

Unfortunately, Connie’s ankle replacement was fraught with complications. “After the surgery, I contracted MRSA. At first, I didn’t understand that MRSA was why the replacement wasn’t taking the way it should. I had IV medications at home, I had to go to the hospital several times and my husband had to keep driving me back and forth to Baltimore, it was a mess.”

During the course of trying to repair her ankle, Connie had a total of 17 surgeries dealing with the different things to get her back up and running. “I went up for one more surgery and I told my husband, ‘I’m ready just to have this thing gone,’” said Connie. At this point, the physician and Connie agreed – it was time to amputate. Amazingly, Connie was happy. “I was just delighted to get rid of that nasty ankle that wouldn’t do anything,” she said.

“Once the MRSA entered into the bone and there was no way to get rid of it,” Connie continued. “After 2 years of not being able to function in the manner to which I was accustomed, I told the physicians to take the foot and ankle - surely anything is better than this!”

“And it was and still is,” said Connie.

“After the amputation, my husband standing by me, he said ‘you got a foot.’ The physicians had put me into an air cast, wrapped around my leg, with a foot at the bottom – and I walked out of there with that foot on my leg,” said Connie. She continued to use that until she healed enough to receive a prosthetic.

Being raised in Richmond, she was already familiar with Powell. “One of my class mates had cerebral palsy and used Powell for his stabilizers, so when it became apparent I'd need a prosthetic it never occurred to me to go anyone else but Powell.” 

Since Connie got her prosthetic, she’s been as active as ever. “It helped that I was in good physical condition when I lost my leg,” she said. “Even during recovery, I still taught and worked with clients as a personal trainer and continued teaching exercise class.” I’m 82 years old and I maintain my certification as a personal trainer and still teach classes twice a week.”

\Connie is also an active advocate for amputees. In April, she went to Washington, DC with a group of other amputees and advocates to ask legislators to support continuing care for amputees. Supported by the Amputee Coalition of American, the group visited with senators and legislators with their message on why it was important to continue medical care for amputees. “It was a bit of an amazing site,” said Connie. “We were put out on capital hill – all these people with prosthetics put out over that hill in crazy heat, but we were on a mission.” Florida Congressman Brian Mast, an Afghanistan veteran, visited with them during the afternoon. Mast is a double amputee after an IED blast during his final tour took both of his legs in 2010. 

When asked what words of encouragement she might have for those facing the loss of a limb, Connie’s advice first and foremost is to have to have a sense of humor about everything – even about a lost limb. Next, she says, “Get a good prosthetic and USE IT. Whatever the limb loss, use that prosthetic, learn to work it and just use it as much as you can. Don’t favor it – don’t treat it as what it is. Try not to limit yourself.”