The Lymphedema Superheroes among us

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Today, Tx:Team celebrates Lymphedema Day and the work of therapists to serve those living with Lymphedema. Physical Therapists and Occupational Therapists perform really incredible work so that their patients regain the strength and confidence to live a life they thought was out of reach. One of our own therapists, Amy Rutherford, pursued a specialty in Lymphedema therapy early in her career, and today, we highlight the care and compassion that she provides to the residents of Frankfort, Indiana.

Amy works at IU Health Frankfort Hospital, located about an hour northwest of the state’s capitol, Indianapolis, in its more rural Clinton County. In her area, she mostly sees Lymphedema patients coming in with swelling of the lower extremities from COPD and diabetes. For Amy, she appreciates how simple lifestyle changes can greatly affect her patients and reduce the burden of Lymphedema on their lives.

What’s Lymphedema?

Lymphedema is a diagnosis of body swelling that is caused from damage to the lymphatic system. Whereas healthy bodies can manage their fluids and dispose of waste properly, bodies with damaged lymph nodes can build up the fluid that would normally be filtered out. On the outside, we see that buildup of fluid looking like an arm or leg that’s been blown up like a balloon.

In early stages, Lymphedema is easily treatable and reversible. However, the signs of this stage are so subtle that they can be very difficult to detect. A patient might feel tight in clothing or they’ll need to loosen the notch of their wristwatch. By the time the body is noticeably swelling, Lymphedema has typically progressed into a lifelong chronic condition that can significantly interfere with someone’s quality of life.

How does Lymphedema affect a person’s life?

A swollen arm or leg can make it difficult for a person to get dressed in the morning because their body is heavier, and they might not fit in the clothes they usually wear. It can be more difficult to do some of life’s basic routines, like bathing, for example. Little things that we don’t think about in our everyday lives- like washing our feet- can suddenly become near impossible because it’s too straining to reach passed the swelling to the feet.

It’s not just a physical condition. You can imagine that not being able to fit in your normal clothes and going out in public with a large swollen arm could affect your self-confidence. And if you can no longer wash your feet, you probably feel less clean than you’d like to be. For these reasons, Lymphedema can take a toll on a person’s mental health. Feelings of embarrassment and depression can creep in and linger throughout the day.

Just about all superheroes don’t wear capes.

Day in and day out, Amy is committed to making her patients feel healthy and great about themselves. She provides not only her expertise, but also compassion for her patients’ lives. When a patient arrived unable to properly clean himself, she knelt down to wash his feet. Really wash his feet of likely weeks of grime. “Cleaning a patient,” she says, “is work that really creates a bond. It’s work that reminds you of the biblical act of washing feet to show your care for another.” Encouraging patients to use proper soap and lotions, like Dove and Eucerin, and getting them to be a little more active in their day has undoubtedly improved the lives of many. We remember how simple, yet genuine care can impactfully change lives.

So today, we thank Amy Rutherford for almost twenty years of work in her field. Lymphedema is a debilitating and frustrating condition that can bring a lot of pain into patients’ lives. Therapists like Amy, who have committed themselves to treating Lymphedema, offer support that restores independence and dignity to those they serve.

Amy is just one of our Certified Lymphedema Therapists. We are thankful for all our CLTs and the work they do.

 

Cabin Fever? Beat the Winter Doldrums

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“I’m bored.”  In the middle of winter, this phrase can make any mom or dad break out in a sweat.  And a snowy winter day with children who cannot find anything to do may seem to last centuries.  A long day at home or a lengthy winter vacation is the perfect time for children to participate in fun activities that will build their skills, as well as put a stop to the classic complaints of boredom.  Coming up with creative ideas in a variety of skill areas, along with ideas for adaptations for children with special needs, can be a daunting task for parents as well.  Consider the child’s age and/or developmental level, safety, needs, and preferences to help you select appropriate activities to bust those cries of boredom!

 

Plan Ahead

To avoid being put on the spot in coming up with a fun activity when the famous “I’m bored…” complaint erupts, put together a “boredom box” with ideas from which the children can select.  Assist your child with coming up with his or her own ideas of what to include.  This can be a good strategy to use whenever your child has more ideas of things to do than time.  Include skill building activities that are developmentally appropriate and are “just the right challenge” with a fun twist so that the activity is not viewed as work.  To avoid having to scramble for materials for activities at the last minute, organize an additional “supply box” with basic craft supplies (e.g., construction paper, crayons or markers, cardboard tubes, paper plates and bags, glue, glitter or other decorations).   Consider including small craft sets with instructions, puzzles, and small travel games that are new or seldom-used.  Examine the skill categories below and adapt the following activities to your child’s skill level and safety needs.

 

Make Dressing and Self-Care Fun!

Winter break, snow days, and weekends afford plenty of opportunities for children to master the art of getting dressed, due to the extra time to get ready, and the extra seasonal clothing, such as snowsuits and boots.  If your child needs additional practice mastering fasteners, or resists getting dressed without assistance, incorporate fasteners and dressing into a game.  When multiple children are present, have a suitcase race where children don clothes (over their own clothing) as quickly as they can to win a prize—this can be done as a relay race for more than two children.  Institute a fashion show where the children can practice putting together their own outfits from old clothes (including parents’ clothing), or a doll or stuffed animal fashion show.

 

Visual and Fine Motor Skills

As visual and fine motor skills are an integral part of the school day from an early age, incorporating some of the fun activities below at home will help to boost skills

  • Make some homemade Valentines or birthday cards.
  • Write letters to family or friends on personalized letterhead.
  • Design scrapbook pages from a recent vacation or holiday to incorporate cutting, coloring, and handwriting.
  • Dust off the jigsaw puzzles, legos, lincoln logs, or travel editions of games (these have smaller parts).
  • Encourage building from a model made by a parent or older sibling, or if appropriate, building from instructions on the box. In addition to visual motor skills, word finds or crossword puzzles build vocabulary, and your child can design his or her own puzzle for someone else to solve.
  • For imaginary play, set up a pretend office with supplies such as paper clips, binder clips, old folders, or junk mail to practice manipulating common items. Get messy with squirt bottles (to spray a window or shower), hole punches, or clay tools and presses to strengthen fingers.
  • You can make handwriting fun by designing a secret code to write with fun squiggly pens, bathtub or window markers, or invisible ink markers.
  • Institute a “no-talking, only writing” time to communicate for fifteen minutes or so to encourage writing (this also might help to calm a noisy household).

 

Gross Motor Skills

After spending too much time indoors due to inclement weather, children will need to find a safe way to move around and expend some energy.

  • In a large, open area (basement, family room), provide your children with common household items, such as chairs, plastic juice bottles, a broom handle, hula hoops, or jump rope to design an obstacle course (with adult supervision for safety).
  • Hang up an over-the-door basketball hoop, or design one from a box with the top and bottom cut out to play rag basketball (from knotted up towels or t-shirts), or use a lightweight sponge ball.  Using these homemade toys or games can be more fun than purchased ones, and this will encourage their creative development.
  • If your child enjoys dance or aerobic exercise, consider renting or purchasing an inexpensive exercise or dance video for kids, use a dance pad video game, or have your own dance choreography contest.
  • Consider games from birthday parties or gym class, such as “Twister,” hopscotch (many toy stores offer foam mats), hula hoops, jump rope, “Simon Says,” or “charades” to encourage development of certain movement skills and physical activity.  By playing these games in a fun, friendly atmosphere, rather than being graded in gym class, or being concerned with winning a prize in sports, children who have difficulties with coordination may become more comfortable with motor planning.

 

Cognitive and Social Skills

We all continue to build our cognitive and social skills throughout life, establishing systems to do things and how we appear to other people; therefore, these are very important skills to practice.

  • If your child has difficulties interpreting emotions from facial expressions and body language, try body language charades (what is this person telling you?) or making an emotions collage of people from magazines with a designated facial expression or body language.
  • Practice teamwork by building something together or use an obstacle course as a relay race.
  • Work on sequencing via the oldie but goodie “follow directions game” by having children write down the directions to make a peanut butter and jelly sandwich, then have someone else make the sandwich following the directions exactly (use your *clean* hands if the directions don’t specify a knife)!

 

Sensory Skills

For children who have difficulties interpreting and processing sensory information, winter may be a difficult time to get used to seasonal changes in sensory input, and less access to outdoors (where many calming strategies might be located).

  • You can put clean snow in a dishpan or large plastic container for some table play inside to adjust to the sensation and temperature of snow prior to immersing the child in snow outside.
  • For a slightly easier to clean up sensory experience, place rice, beans, flax, or popcorn kernels into a bowl/bin/container with some of those summer sand toys!
  • Also, pull out the summer mini child’s pool, and fill with lightweight plastic balls (available at many toy stores) to create your own ball pit.
  • To create an indoor quiet area, your children may enjoy draping old sheets or blankets over two chairs to create a tent or use a large (appliance) box for a calming space with cushions or pillows for resting.
  • Children may enjoy spending a day inside making pretzels, kneading bread dough, rolling out cookie dough, or making “slime” as a tactile sensory experience.
  • Some household heavy work can be calming to children with “cabin fever,” such as pushing or pulling a vacuum, pushing a shopping cart, shoveling snow, pushing a wagon or wheelbarrow—all of these should be of appropriate size/weight (toy or regular), depending on the child’s size/abilities.

 

Seeking Expert Assistance

If your child has significant difficulties with dressing/fasteners, fine motor or handwriting skills, visual motor skills, motor planning, or sensitivity to tactile experiences, he or she may benefit from a physician’s referral for a pediatric therapy evaluation.  A pediatric therapist working in an outpatient center can determine if your child could benefit from skilled services and home exercise programs that build on these skills.

Lymphedema & Physical Therapy

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Christina Kuzma, Manager of Business Development at Tx:Team, successfully battled breast cancer this year using physical therapy as an integral part of her treatment plan. She says that the one thing she would have done differently is to start physical therapy sooner. She began therapy the day after surgery with stretches and massages to target her lymphatic system. Despite her success, she thinks that her body would have been better prepared for the pain and stiffness if she had practiced therapy in the weeks leading up to her surgery. These pre-operation exercises are especially important when thinking about post-operation outcomes that can hinder a patient’s success. An example to consider, which often goes undetailed, is Lymphedema. Christina’s symptoms during radiation did not flare to become Lymphedema; however, reports show that having an extensive surgery, such as mastectomy, paired with radiation can increase the odds of facing Lymphedema six-fold.

WHAT’S LYMPHEDEMA?

Lymphedema can occur from any compromise to the lymphatic system; however, Lymphedema is especially common among breast cancer survivors because it can happen when lymph nodes are missing, impaired, or removed. Swelling will ensue if this system begins to have problems draining excess fluids, waste, or toxins from the body. Most commonly in breast cancer patients, the swelling shows in the arm or hand, and sometimes in the underarm, chest, trunk, or back. It can be a very serious, debilitating, and painful problem.

 

To identify Lymphedema, know that it develops gradually; however, early detection is important. Uncomfortable sensations, like tingling or numbness, in any of the listed common areas precedes visible swelling of those parts. Some patients will also report feeling full or heavy, and others report decreased flexibility and tightness. Including a Lymphedema assessment in a routine follow-up visit with a doctor at most, 6 months after surgery, could substantially decrease the physical, emotional, and financial burdens of Lymphedema on breast cancer survivors. Early detection treatment and even a pre-surgical rehab visit can vastly improve your outcome if diagnosed with Lymphedema.

MEET KIM BROWN

Kim Brown is a Tx:Team Physical Therapist at FMH Rehabilitation Crestwood, in Frederick, Maryland. While she did not treat Christina directly, Kim is all too familiar with the diagnosis and treatment for patients just like Christina.

Kim is trained and certified in Lymphedema treatment. Seventy-five percent of her clients are breast cancer patients. Due to the sensitivity of this condition, which balloons the body and causes intense, uncomfortable pain, Kim treats Lymphedema with private and personal care. According to Kim, “Success is defined by the empowerment of patients, with hopes of not only regaining their strength and living pain-free, but also regaining self-esteem and authority over their condition.”

For that reason, education about Lymphedema is a big part of Kim’s job.  “Most patients haven’t tried much besides medication to cope with their pain or persistent disability,” says Kim.  It’s likely that for that reason, many patients arrive thinking that there’s no real opportunity to improve. However, alongside the use of manual therapy and bandaging to heal tissue and reduce swelling, Kim and her team of therapists teach their patients how to exercise and manage their condition on their own.

There are few comprehensive studies conducted on Lymphedema in breast cancer patients, and as a result, Lymphedema can often be brushed over in conversation. Christina Kuzma reports that she only knew about Lymphedema thanks to a co-worker. Otherwise, Lymphedema was only mentioned to her quickly in a doctor’s visit as a potential outcome. Despite this serious lack of information and discussion, you are not an outlier if you experience this swelling and it deserves immediate attention. One study reports that in the first 18 months of recovery from breast cancer surgery, 1 in 10 patients experience Lymphedema. By 18 months, about 30% of patients have, or have had Lymphedema. Irrespective of these odds, it is most important to educate yourself on Lymphedema and keep tabs on the changes in your body as it undergoes intense and stressful circumstances.

LIVE YOUR LIFE, PAIN-FREE

It cannot be said enough how important it is to care for the health of your body and those you love. Circumstances can quickly change and you may feel out of control, but know that living comfortably is within reach. Especially to cancer patients, Kim Brown insists that there is always room for improvement. She says, “Beating cancer isn’t the end of your journey. Don’t accept weakness, fatigue, and pain as a part of your life post-cancer. Talk to your doctor and maintain that your goal is to return to the state that you were in before cancer came into your life.”