Patient Stories: A Moxie Update

Moxie attended her 1st Amputee Support Group meeting on August 1, 2017, at the University of Maryland Rehabilitation & Orthopaedic Institute (UMROI). Nina Bondre, CPO, and Jeanne Smith, Patient Services Representative, shared Moxie’s story of rescue, adoption, and how she has adapted to her life as an amputee (you can read earlier stories about Moxie by looking in our News Archives.) Attendees also discussed and shared their experiences, challenges, and successes as amputees in the community. Everyone was surprised to learn about how similar dog prostheses and human prostheses are, as well as the various adaptations used to overcome obstacles in daily life. As Moxie flaunted her newest tie-dyed prosthesis, she modeled for photos and received lots of love and treats from the members of the group.

Thanks to Naomi Miller, PT, for inviting Moxie to attend this social and informational support group. The University of Maryland Amputee Support Group is held on the 3rd Wednesday of each month from 6:30-8:30PM at UMROI: 2200 Kernan Drive, Baltimore, MD 21207. 

Patient Stories: Kimberly Daum

It isn’t often someone can say that a piece of furniture may have saved her life. Yet, three years ago this spring, the day she whacked her foot on a kitchen table leg rushing to answer the phone may have done just that, according to Kimberly Daum. When it happened, aside from the pain, it certainly didn’t seem significant, but running into that piece of furniture is what started a series of events that eventually led Kim to becoming an amputee. At first, she thought she had broken toes, and was put in a boot to heal. She was on her feet 50-60 hours a week as a long term employee of Lowes and it didn’t take long for her to be ready to get out of that boot! After six weeks, still having pain, she had an MRI. Kim got some shocking news – there was no fracture, but she had an invasive mass in her right foot.

A biopsy revealed a rare, aggressive form of cancer called synovial sarcoma that had her surgeons recommending foot amputation. By early July she had done her research on prosthetics and was ready to go. Post surgery necrosis set in and only a week after her initial surgery, Kim found herself a below knee amputee. On top of that, she was still fighting the cancer! This very active working mom of two struggled with this sudden change in her situation. Depression and anxiety set in even as family and friends surrounded and supported her.

She wasn’t able to start chemo until five months later. For six grueling months she and her husband Chris made the hour and half drive to Ruby Memorial Hospital in Morgantown, VA, where Kim checked herself into the hospital every month for a week to do battle with her cancer – using the chemo drug they call the “Red Devil” because it is so toxic. Adriamycin and Ifosfamide are the two chemos used in treating synovial sarcoma. This cancer is very rare and unfortunately affects children. The normal treatment for this cancer is amputation because it is very aggressive and attacks bones, muscle, tendons and joints.

After completing her treatments and because of her depressed immune system, Kim could not spend time with the pets who would normally comfort her – Mugsy the Beagle, and Cheyenne the cat. At the same time, her son had to leave and report for duty for his Navy training.

Kim credits her teenaged daughter, her husband, best friend, mom and her father for keeping her going. It was almost a full year after her amputation before she was physically strong enough to start physical therapy with a preparatory prosthesis. Even then, she had a lot of pain and required a revision to her residual limb. This meant additional healing time and it was making her nuts! She was increasingly frustrated by her limited mobility. She wanted to do something as simple as clean her house her own way.

Once she was healed and headed back to PT, she “never looked back”. As she became stronger and more mobile, it was time for the next fight on her hands – with the insurance company. Kim had done her homework and she wasn’t going to settle for something less than she needed to regain her mobility and active lifestyle. She was determined she wasn’t going to let the insurance company tell her what she could do and what she needed. After numerous appeals and fighting them as aggressively as she had fought her cancer, she got the high activity foot she needed. She finally got her definitive prosthesis and is back at the gym three days a week and is working toward getting her driver’s license back. Through a Maryland Division of Rehabilitation Services program, she is getting retraining so that she can get back into the workplace. She speaks highly of the program and looks forward to new job opportunities.

During her long recovery, everyone told her to keep looking for the light at the end of the tunnel. For a long time, she couldn’t see it. There were a lot of rough days, crying, anxiety and pain – but she fought on for her family and she DID come to see the light and now, she says she is “OK. I am here! Never give up!” She is cancer free now, but there will still be some anxiety when she goes for regular checkups. She speaks highly of her children and their own accomplishments while supporting her through her difficult time. Her son graduated from his Navy training and is now married with a child. Kim lovingly tells the story of her daughter confronting the doctors more than once, despite her youth, to make sure her mom was getting what she needed. She is in college now and wants to be a doctor herself.

Kim regrets the lack of an amputee support group in the western Maryland area, since she feels like this would have helped her better prepare and adjust to her amputation. She says it was heart wrenching not to have other amputees to talk to. Travelling to the nearest support group in Baltimore wasn’t really an option. Kim has resolved to work on remedying this situation as soon as she has transportation by starting a support group in the area. There, amputees could share their recovery experiences, support each other when tackling insurance issues, and share tips and tricks – like the compression sleeve!

What, you say? She is determined to have some fun with this prosthesis. She told Mark Treasure,  her prosthetist, that she didn’t want to wear tennis shoes for the rest of her life, and she wants to wear skirts and shorts – but with style! She got the idea to get really fun compression sleeves and pull them over the socket to create a different look any time she wants to. It is an inexpensive way to dress her socket up or down, depending upon her clothing or her mood. Rumor has it that she was going to vacation on the beach and intended to wear a sleeve that had great white sharks on them just to see the reaction she might get! It is with sense of humor and determination that she moves forward and sees a light at the end of a tunnel.

Patient Stories: Cordelia C

Cordelia is an amazingly smart, happy, intelligent, beautiful little four year old who happens to have Down Syndrome. During our pregnancy we found that there was a possibility that our baby had Down Syndrome. It wasn’t confirmed until Cordelia’s arrival; it was less than 24 hours after giving birth that we would hear those words “Your daughter has Trisomy 21, or Down Syndrome.”

Cordelia was also born with two holes in her heart - called an Atrial Septal Defects (ASD) and Ventricular Septal Defect (VSD). Her heart was completely repaired at four months old. Since then Cordelia has had multiple surgeries and diagnoses; however, none of this has stopped her from hitting her milestones and growing into the independent toddler that she is today!

We were first introduced to Dankmeyer when Cordelia was around 1 ½ years old by her physical therapist, Havala McKinney, PT, DPT, MSPT, PCS, CEIM (pictured above, right, with Cordelia in the gym.) Havala was Cordelia’s physical therapist starting at just one month old through the Infants and Toddlers program in the Baltimore County school system. It was thought that the Sure Step orthoses would help Cordelia gain the strength needed in her ankles to support her in walking independently. So, I set the appointment.

Jamie (Dean, Patient Services Representative) greeted us when we came into the office for the first time and Jed (Newhardt, CPO) guided us back to the “big” room where Cordelia was measured for her first pair of Sure Step braces. Jed has the patience of a saint. He never complained about Cordelia not sitting still. In fact, he would crawl around on the floor with her, working with her, watching her positioning and measuring her feet and ankles.

At 22 months old, just one month after she was the flower girl in her cousin’s wedding, Cordelia took her first steps. She was off and running. There was nothing stopping her now; well, maybe a baby gate here and there.

Cordelia has worn two different types of braces over the years. She has had two pairs of Sure Step braces and one pair of DAFO #4’s (an example in yellow, above.) We are currently waiting on a new pair of Sure Step braces to arrive. When Cordelia doesn’t wear her braces I can definitely notice a difference in her positioning when walking. I truly feel that the braces have helped with the straightening of Cordelia’s feet (she tends to walk pigeon-toed) as well as stopped her from pushing/flexing her knees back.

I am truly grateful for Havala sending us to Dankmeyer and for the amazing experiences that we have had since. The entire office is amazing!! I feel like they listen to our concerns with Cordelia; their willingness to work with Cordelia’s therapist is like nothing I have ever seen.

Cordelia is currently working towards and meeting goals within the school system. She is an amazing climber on the playground and has no fear when doing so. If she falls she gets right back up and attempts to do the obstacle all over again. There is nothing that will ever hold Cordelia back. This is her life; this is her normal and she will accomplish anything that she is asked to do and wants to do.

Down Syndrome does not limit her.

Her disABILITY is beautiful.

I cannot wait to see what she will accomplish next. 

- Written by Angie White, Cordelia's mom

Cordelia with her mom, Angie White.

Patient Stories: Joe Maese

Joe's Profile:

Joe Maese (pronounced MY-ESSAY) is originally from Phoenix, Arizona. He was drafted by the Baltimore Ravens in the 6th round in 2001. Joe continued his career with the Detroit Lions in 2006 and played Baltimore Arena Football in 2007. 

In 2010, Joe became a career firefighter/EMT.

Currently, Joe runs and operates 59 Athletics in Owings Mills, Maryland, where he trains high school and college student athletes and fitness/bodybuilding competitors.

Joe's Story:

When asked if deciding to have an amputation was difficult, Joe's answer is "Absolutely, and here's why: When what you are left with after an accident is causing you tremendous difficulty, many impossibilities, long-term infections, and the destruction of any good tissue or bone that is left, an amputation is not only a viable option, it can be a thriving alternative."

After four hospitals and seven doctor's opinions, Joe was finally introduced to Dr. Janet Conway, Advanced Orthopeadist and Foot Specialist. When Joe woke up from surgery and spoke to his doctor, she told him he definitely made the right decision in choosing to have his amputation. It had been a long road. Joe had fourteen surgeries in seven months and had enough of feeling like a hamster on a wheel. He decided the only way to stop the continual infections from growing further up his leg was to amputate and move forward. Dr. Conway's expertise and opinion was an integral part of Joe's decision making.

Last week marked five months since Joe's below-knee amputation. Joe feels that once his amputation wound healed, he could not have been paired with a better person and organization than Mark Hopkins (CPO, PT, MBA) and his team at Dankmeyer, Inc. Joe adds that from the start, Mark and his team recognized his individual, personal needs and continue to strive to get him the equipment that he needs in order to live his life to the fullest extent of his capabilities - and to not be held back by a prosthesis and equipment that does not work for him.

Joe attributes his successful transition to a prosthetic leg to the way he was raised and the many challenges and adversities he faced in his career choices as a pro football player and a firefighter. He adds that all of those things combined instilled in him the wherewithall to rise to the challenge that being an amputee requires and has given him continual drive and success moving forward.

　

 

Patient Stories: Patients Attend Hill Days

Kelly Miller at Amputee Coalition's Hill Days

Kelly Miller and Jeanne Smith, Patient Services Coordinator attended The Amputee Coalition's Hill Days in Washington DC on Tuesday, April 25th and Wednesday, April 26th.  Along with other Dankmeyer patients, amputees from all over the country came together to meet with elected officials to discuss issues affecting the limb loss community: to include insurance fairness for all amputees, healthcare reform, and support for research program funding. Among other attendees was a family of three  generations, a young four year old amputee and his mother and his grandfather, all dedicated to advocating for insurance fairness for ALL persons affected with limb loss.  

Many thanks to all of the Senators, Congressman and their staff for meeting with the 2017 Hill Days participants.  A special thank you to the following Senators, Congressman and staff who took time to met with Kelly and Jeanne:

  • Senator Chris Van Hollen and David Radcliffe, Department of Defense Fellow
  • Dvora Lovinger, Congressman John Sarbanes’ Deputy Chief of Staff
  • Alexandra Menardy, MPH, Senator Benjamin Cardin’s Legislative Correspondent, along with Health Fellow, Arnold Solamillos 

In addition, we thank Congressman Brian Mast of Florida, Veteran and bilateral amputee, for hosting a wrap up discussion and reception. 

For more about the Amputee Coalition and the annual Hill Days, click here.