Contents

COVID-19
Clothing and Fashion
Compression Garment Care
Exercise
Skin Care
Travel
General Care
Increasing Awareness

COVID-19

  • Especially given the COVID-19 isolation protocols, it can be hard to remind yourself to move. Our daily step counts are dwindling just due to the decrease in daily activities we normally have outside the home. Aim to get up once every hour and walk around—whether it be outside or inside your house.
  • Due to the global pandemic we have all been made aware that one of the most important things we can do as a precaution is to wash our hands. To protect your skin, ensure that you are keeping your water at a lower temperature to avoid damage or possible burns to the skin.
  • Deep breathing is helpful for all types of lymphedema, even head and neck swelling. It works by changing the pressure in your abdomen and chest. This encourages lymph to flow back into the blood system. Deep breathing can also help you to relax. Try taking 5 deep breaths while lying down with your hand on your abdomen. Breathe in through your nose and slowly out through your mouth, making sure that your abdomen rises and falls with each breath.
  • While lymphedema therapy appointments have been put on hold (or may be occurring less frequently) make sure that you stay in touch with your therapist. They may have at home massage tips that will prove to be helpful while we are all staying home.
  • Living with a chronic illness can feel isolating, and not being able to leave the house can intensify these feelings. It is important during these times to ensure you stay connected with the people in your life or even form new connections by reaching out to people who might be feeling the same way. See if you can get connected with another patient by researching support groups in your area. Your provincial lymphedema association can be a valuable resource.
  • This is a time to stay connected with the people that you love. Set up a time to call a friend or family member every week to catch up and talk about what you are feeling. It’s also a great time to give each other any new book or TV recommendations, as the days get shorter!

Clothing and Fashion

  • Wearing compression garments requires some creative ways to look fashionable. For special occasions, when you don’t want the appearance of heavy stockings, simply wear a thin pair of sheer, shiny pantyhose over your skin colour compression stockings. No one will know what lies underneath and you can feel glamorous for the evening.
  • It is a good idea to keep a pair of rubber gloves in your purse or briefcase to help when your compression stocking or sleeve needs adjusting. To be discreet, why not store them in a pretty Chinese silk pouch which you can pick up at the Dollar store. Fashionable and practical!
  • People living with lymphedema know that fitting shoes can be a problem when one foot is swollen and larger than the other. It is expensive to purchase dual pairs of shoes in different sizes. A tip is to choose the shoe size that will accommodate the larger foot. Then insoles can be used to down-size the shoe for the “normal” foot. You can keep a pair of insoles in your bag so that you have the option of either inserting or removing them when foot size fluctuates during the day or when travelling.
  • Finally, the designers of medical compression garments understand that even people with moderate to severe lymphedema who require the use of flat knit compression garments like to look fashionable. No more ugly, medical–looking, boring beige or sand colours. Check out the advertisers in the Pathways magazine for refreshing choices of colour, texture and patterns in flat knit stockings.
  • Finding clothing that fits a larger or swollen arm can be a challenge. Some style options that can help you in your search include: Dolman sleeves, kimono sleeve, bell/butterfly sleeves. Source: LympheDivas.com
  • People living with lymphedema know that fitting shoes can be a problem when one foot is swollen and larger than the other. It is expensive to purchase duplicate pairs of shoes in different sizes, so purchase shoes that will accommodate the larger foot. An insole can be used to down-size the shoe for the “normal” foot. You can keep the insole in your bag so that you can either insert or remove it when your foot fluctuates during the day or when travelling.
  • Diabetes socks are non-binding and non-elasticated socks which are designed so as not to constrict the foot or leg. Usually they are also seamless so there are no pressure points on the foot and to prevent chaffing or blisters.  They typically are made of fabric that has been treated to reduce moisture and bacterial growth. They can be found in the hose section of most pharmacies and are a great benefit to people with leg lymphedema.
  • Sport compression socks can be an alternative to regular compression for some patients. They are light and comfortable to wear; especially during the heat of the summer and while exercising.
  • Always wear slippers or sandals at home when living with leg lymphedema. Walking around the house with bare feet may increase the risk of injury and a serious infection called cellulitis.
  • Summer gardening brings pleasure to many people. Lymphedema patients and those at risk should remember to wear rubber or protective gardening gloves and long sleeved tops or long pants to minimize the risk of scratches from nasty branches or rose thorns, which can lead to serious infection called cellulitis.
  • Some people find that wearing compression garments under long pants or skirts can cause excessive clinging (where the knit of the compression causes the fabric of your clothes to catch on your garments.) A simple solution to this is to wear thin stockings over top of your compression garments and under your pants or skirt. Not only will this stop the sticking, but it will help disguise the look of your compression stockings.
  • Most flat knit compression garments can and should be washed in the washing machine – daily and ideally in a laundry net. Make sure you use the machine’s delicate cycle at 40C degrees and do not use fabric softeners. Flat knit compression garments can also be dried in the dryer using the delicate cycle. Always be sure to read the manufacturers guidelines for your specific compression garment care.

Compression Garment Care

  • Compression stockings should be hand washed daily. Regular washing of compression garments is important for proper hygiene and to extend the life of the garment. Do not wring out the stockings or put them in the washer or dryer. Press water out by placing them between layers of towels. Hang or lay flat to dry. Refer to the instructions in your product brochure for more specific instructions about the care of your stockings. Note: Lotion can break down the fibres in your stockings, so it  is best to moisturize your legs at night.
  • When storing compression bandages, sleeves, night-time garments, tape and foam, these can look unsightly, so consider alternative packaging. Many stores sell inexpensive baskets that people use for many purposes, including creating a gift basket. You can give the same gift to yourself by placing your lymphedema supplies in an attractive, appropriately sized basket with or without a handle. First line the basket with a linen or cotton napkin to prevent damage to the contents. If the basket has a handle, you can tie a ribbon on it to add to the festive look. Now when you pull your supplies from the shelf, they will not only be in one place, but will be attractively presented. It will make you feel special to retrieve items from such a pretty container. Jan Hasak – Cleveland, Ohio 
  • Replacing compression garments regularly is important to ensure the appropriate level of compression is most effective in the management of lymphedema. On average, most garments need to be replaced every three or four months. However, don’t throw out your old garments as they can still be useful for many tasks. They can be kept as a backup, for use in a chlorinated pool or to wear on top of new garments when doing messy tasks (i.e. gardening, painting, etc.). To help you differentiate between your old and new garments, upon receiving a new compression garment – use a black marker and record the date on the label.
  • In very warm weather, if you are not near an air conditioner—try wetting your compression garment to keep your body temperature down and your limb cool. However, don’t keep it wet too long, because bacteria are lurking and you could get an infection.
  • If your arm is wrapped in compression bandaging and you are around water – get a clear plastic umbrella bag to wear on your arm to protect the bandaging. These disposable bags are sometimes found in the foyer of big department stores like Walmart or Target for your wet umbrellas. Saran wrap also works well, as do veterinarian gloves – which can be purchased at vet supply stores or farming stores.
  • Many people find that the tedious task of rolling their compression bandages is made easier with a handy tool. However the cost of bandage rollers varies with different suppliers, and can be quite high. However, they can also be purchased at any decent tack store (horse store) for a lot less. Leg wraps are used all the time on competition horses and they use rollers to keep them neat, but they are a great tool for lymphedema sufferers as well.
  • Instead of throwing out those old, stretched out compression sleeves or stockings – why not mark them as your backup supply to use when you are gardening, swimming, painting etc. You can wear them on top of your new compression garments to give you extra compression and protect them. Another option is to wear two older compression garments on top of each other – for added support and to extend their wear.
  • Having trouble donning and doffing your compression garments? If you have problems putting on or taking off your compression stockings, contact your garment authorizer or vendor. They may suggest stocking aids to help you, or a family member may have to assist you. Wear rubber gloves when putting on or taking off the garments, and keeping your finger/toenails trimmed can help to prevent tearing or holes. There are many donning aids. Check the fall 2012 issue of Pathways for a description of the various tools that can help you.
  • If you struggle to keep your compression garments pulled up, there is an adhesive lotion or glue available to help them stick to your skin. The lotion comes in a roll-on tube. The best method for applying it is in vertical stripes around the top band on your garment, rather than horizontally or otherwise. Ask your compression fitter about this glue.
  • When prescribing compression for children, start with the lowest compression (i.e. 20 mm Hg) and help them choose colours the children like. Be flexible and creative with mild compression garments. Compression garments in children may need to be changed more often than twice a year due to growth as well as wear and tear. Early on, clinicians may be less insistent on wearing a compressive glove, so as not to perturb fine motor skills.
  • Offer to see the child patient with their compression garment within the first 10 days after arrival, in order to make any adjustments to the garment with the fitter. Support the parents and provide education on lymphatic drainage, facilitating control over their child’s lymphedema.
  • The summer heat inevitably means an increased amount of perspiration, especially under tight compression garments.  Be sure to clean your garment regularly to avoid a buildup of bacteria from sunscreen residue, body oil and sweat.  Using baby-powder or an anti-fungal powder in your shoes may also help cut down on bacteria around your feet. Source: www.lymphnet.org
  • Compression stockings should be hand washed daily. Do not wring out the stockings or put them in the washer or dryer. Press water out by placing them between layers of towels. Hang or lay flat to dry. Refer to the instructions in your product brochure for more specific instructions about the care of your stockings. Note: Lotion can break down the fibres in your stockings, so it is best to moisturize your legs at night.
  • If you have problems putting on or taking off your compression stockings, contact your garment authorizer or vendor. They may suggest stocking aids to help you, or a family member may have to assist you. Wearing rubber gloves when putting on or taking off the garments, and keeping your finger and toenails trimmed can help to prevent tearing or holes.  Source: Alberta Aids to Daily Living Website
  • I have recently purchased a bandage roller, which I use every day, and find to be an excellent tool. I located this one on-line at the Lymphedema Depot website and feel the price of $19.95 plus shipping to be worth every penny! Linda Gimbel, Stettler, Alberta
  • Medical compression shirts for truncal lymphedema can be very expensive. Sportswear like the Nike Pro shirt work well for some people and are more affordable. You might consider buying a few sizes smaller to add the compression element. Also the V-neck allows it to go almost unseen when worn… and it comes in a bunch of colors.
  • Try to be at your “best measurement” before you get fitted for a new garment.  This might mean having the garment fitter measure your limb in the morning rather than in the late afternoon, when your limb might be more swollen.  Depending on your situation, it might also mean that you should use night compression bandaging or devices, or even 24-hour self-bandaging, for a few days before you go to get measured. Get advice from your lymphedema therapist about this. Being measured when you are at “your best” will help maintain your limb volume that way. This might require that you collect a small “wardrobe” of self-management tools and solutions. Anna Towers, Montreal, Quebec
  • If you are travelling with no access to a clothes dryer – do not dry compression garments on a radiator or heater. Its better to pull the garments carefully back into shape after washing, spread them out carefully, and leave them to dry (perhaps on a clothes hanger).  The garment may also be wrapped in a towel and carefully pressed dry. Unwrap from the towel, and allow garment to air dry. Never leave the garment wrapped in the towel. Source: Medi Skin Care

Exercise

  • Although there is no concrete evidence for or against wearing compression during exercise like swimming, intuitively, we are told it can’t hurt. However since the chlorine can damage the fibres of expensive garments, simply save your old worn compression garments for the pool.
  • Exercise while wearing compression garments can get the lymph moving and help manage swelling. Sitting on a huge exercise ball and gently bouncing may also have the potential to stimulate the lymphatic system. Why not sit on a ball instead of a couch when watching TV and have fun at the same time.
  • Exercise, in particular water exercise, has been shown to provide great benefits to people living with lymphedema. If you can’t find a group program or aqua lymphatic trainer near you, you can simply walk in the water, wearing a floatation device. Similar to the floaters used for young children, The Aqua Jogger® buoyancy belt comfortably suspends you at shoulder level in deep water allowing you to breathe normally and move freely while performing a wide variety of water exercises. You will not only benefit from the movements but also from feeling like a kid again! aquajogger.com
  • Tai Chi classes have many benefits, on of which is deep breathing and movements which can help the flow of lymph Betty Thompson, Calgary, Alberta
  • Walking a route with changing elevations and changing your route (up hills, down hills) helps alleviate the tension and swelling in your legs rather than regularly walking on flat terrain.
  • Remedial Exercise is active, repetitive non-resistive motions of the affected limb and is shown to help the body’s natural muscle pump to reduce swelling when used with compression. Low impact exercises like Tai Chi and Qigong have similar movements to Remedial Exercise and may be a good place to start.
  • Resistance Exercise is usually thought of as weight lifting, but can also involve lifting body weight. Push-ups, squats, lifting dumbbells and/or using weight machines are resistance exercises that can be utilized by lymphedema patients, but should be started with low weight, low repetitions and gradual progression.
  • Aerobic Conditioning/Cardio Exercise increases the heart and lung capacity, and enhances cardiovascular fitness, effective weight management, and overall health and wellbeing – which are beneficial to individuals with lymphedema. Walking, jogging, cycling and swimming are examples of cardio exercise.
  • Try making breathing and other simple exercises a routine thing you do. I have leg lymphedema and often rest in a recliner. I posted reminder notes around the recliner to make deep breathing and easy leg exercises a part of my routine each time I put my legs up. It soon becomes a habit! Angela Dunphy, Newfoundland
  • Detailed information on effective and safe exercise with lymphedema can be found on this page.
  • Exercise is an important component of CDT, but as temperatures rise, so is staying cool.  Be sure to take frequent breaks from any sports or physical activity in order to cool off.  A wet towel over your compression is a great way to provide immediate relief from the heat, and it is a good idea to place a plastic bag as a barrier between the towel and your compression garment to keep it dry.  Source: www.lymphnet.org
  • The cold weather does not mean you should be discouraged from moving as much as you can. Try some yoga with a guided YouTube video, or set aside space in your living room to do some simple exercises and stretching. You can refer to recent Pathways articles for suggested arm exercises (Spring 2020) and leg exercises (Fall 2020).

Skin Care

  • Patients with lymphedema may experience intermittent leaking of fluid from the affected limb, especially with primary leg lymphedema. This leaking of fluid is called lymphorrhea and can be very hard on the skin. Using a highly absorptive product for drainage is important. This may include gauze made with calcium alginate or even incontinence pads. Use a protective barrier cream or spray to protect the skin. Compliance with compression therapy is essential to preventing and treating lymphorrea. See your doctor or nurse practitioner if you develop a fever, pain, heat and redness in the skin. It may be cellulitis and always requires medical attention.
  • In the event that a lymphedema patient does get a cut or scratch ….keep antibiotic cream at hand by carrying a miniature tube of Polysporin in your purse or briefcase, along with a bandage. One particular mini size that Johnson & Johnson sells is called Poly to Go.
  • Bugs beware: Since most bactericidals can irritate your skin, try adding a few drops of tea-tree oil to your skin cream that you are applying to the lymphedematous limb. Although it may stink a bit, it is a very good repellent of mosquitoes, fleas, ticks and other bugs. These insects are attracted to the blood collecting under the skin that is compressed, so they will try hard to bite through the compression garment.
  • When spending time outside in the summer use an insect repellent on exposed skin (Johnson’s OFF ‘Botanicals’ lotion has been recommended by a reader). If you do get bitten use an ‘After Bite’ product right away.
  • According to personal preference and budget, the following skin creams are recommended by Canadian dermatologist, Dr. Catherine McCuaig – for maintaining good skin care for those with lymphedema:
    • Vaseline, Aquaphor Ointment
    • Glycerin 10%, Aquaphor 40%, H20 50%
    • Glaxal base, CeraVe, Vaseline Creamy
    • Lipikar Baume AP, Trixera, A-Derma Exomega, Restoraderm (Cetaphil), spectroeczema care, Cutibase, Cetraben
    • Any oil, preferably not perfumed
  • Having lymphedema in your arm or leg, doesn’t mean you can’t continue to look and feel pretty by visiting your favourite salon. However, extra precautions are required. Bring your own “box” of manicure tools if your salon doesn’t already do so, and never allow anyone to cut your cuticles, rather have them gentle pushed back instead. You might also consider applying an anti-fungal cream or spray when you arrive home in case you may have picked up any fungus at the salon.
  • With proper precaution, those living with leg lymphedema can still enjoy relaxing walks on the beach. Be sure to wear a compression garment, covered by a long cover-up or wide and lightweight palazzo pants to shield the sun. Don’t forget appropriate footwear to protect your feet from sharp shells, insect bites and other potential hazards that could result in breaks to the skin. Anna Kennedy, Toronto, Ontario

Travel

  • When travelling on an airplane, it is recommended to request an aisle seat on the side of the affected limb to allow for greater mobility during air travel. People living with leg lymphedema, might also request a bulkhead seat. Once the airplane seat belt sign turns off, you can retrieve your small carry-on from the overhead bin and use it to prop up your leg.
  • A portable footrest can be easily used in a car or airplane to provide
    elevation for your leg(s) during travel. Simply hang the straps over your tray table and place your feet in the footrest to allow for elevation. Most models are designed with adjustable straps to allow elevation whether your tray table is up or down. This is a great option
    to provide relief for your leg while travelling. Linda Gimble, Stetter, Alberta
  • When you travel, be sure to keep all your lymphedema supplies in your hotel room out of view of the cleaners. As an example, do not put them in a plastic shopping bag away from your suitcase. The maid may think the bag is full of garbage and throw it out. This actually happened to a patient who was traveling in Europe and did not notice the bag was missing until the garbage had been collected and thrown in a dumpster. Jan Hasak – Cleveland, Ohio
  • Patients suffering from lymphedema have a significantly increased risk of infection. Consider speaking to your doctor about bringing along your own supply of antibiotics when travelling. This will be helpful if you develop cellulitis in geographical areas that have increased risk of disease (e.g. tropical regions) or in the event of a long delay in the emergency room or when antibiotics are not as readily available.
  • Anyone who travels knows that there is always a little bit of trepidation when travelling, and traveling with lymphedema just adds to that stress. Here are a few things that I do to alleviate my stress:
    • I always bring a small pillow to support my arm, as the airlines no longer automatically have pillows for you to use.  I have left arm lymphedema so I always try to sit on the left side of the plane so there is no interference from other passengers.
    • I wear a loose fitting top so I don’t constrict my arm and something warm to keep my arm warm during the take-off and landing.
    • I usually wrap my arm a little looser just before getting on the plane to accommodate the swelling that may happen during flights. Michelle Kinakin, British Columbia
  • When flying, give yourself lots of time to get through airport security and then wrap your limb once you are through security. I find that security personnel are mistrustful of compression gloves/sleeves and I am always checked for gunpowder, patted down, etc. Sophia Lang, Calgary, Alberta
  • Keep the compression garments you plan to take with you on a trip, close to you (in your purse or carry-on). That way it will be easier to find these items if needed, for example, to provide additional reduction in swelling or if needed as a replacement due to the slight soiling of one garment. Jan Hasak, Chico, California

General Care

  • Finding a certified lymphedema therapist should be easier than you think. Contact your provincial lymphedema association for a list of qualified therapists who meet the new CLF training standards. These professionals have all met the minimum 135 hours of post graduate training on the lymphatic system and treatment.
  • Take a load off: For those living with leg lymphedema— gravity is not your friend. When sitting down at your computer for long periods of time, rest your affected leg by elevating it on a box or upside-down recycling blue bin under your desk.
  • Well-intentioned New Year’s resolutions made in January unfortunately subside for many people, by the middle of February. However eating healthy and staying fit are not just “nice to have” intentions when you have lymphedema – they are a necessity. A difference of even five to ten pounds can significantly impact your lymphedema. Following Canada’s Food Guide suggestions of eating a healthy diet with 7-10 daily servings of fruit and vegetables plus getting the recommended 150 minutes of physical activity each week will keep you on track.
  • Prior to any medical procedure it is imperative that patients with lymphedema or at risk to develop lymphedema, have a mechanism to alert medical professionals of their condition. Many times a patient is sedated or under anesthesia and cannot protect or prevent at risk procedures such as, injections, blood draws, IV insertion, blood pressure readings By donning a brightly coloured Lymphedema Alert band on their wrist or ankle this will alert technicians to the risk. Peninsula Medical will send, at no charge, an alert band to any patient with or at risk of developing lymphedema. www.lymphedema.com/alertband.htm
  • Leg lymphedema has its own set of challenges due to the effect gravity has on lymphatic flow. If your job requires you to sit all day – position a blue-box or garbage pail upside down under your desk, and elevate your affected leg whenever possible. Anything you can do to reduce the amount of time your leg is just hanging will benefit you. Ensure you get up at least once per hour – walking around the office, or up and down the stairs, to get that lymph fluid moving!
  • Elevation of a lymphedema-affected limb, either upper or lower, can be very effective to help reduce oedema volume overnight. One common error that patients make is that they elevate their arm up over their head at night. This is a risky position to put the shoulder in as the rotator cuff tendons are at high risk for impingement. Avoid this overhead position and instead elevate the arm on pillows either lying on your back or side. Also for any hand swelling, the hand must be above the level of the elbow to promote drainage of the hand. Lori Radke, Edmonton, Alberta 
  • For over a year now I have been using the Circulation Booster on my feet and my legs.  I have had some success with it and in two or three sittings the swelling in my feet and legs has come down quite a bit.  I don’t know if this would work for everyone but I thought I would pass it along anyway. Beckie Hutchinson, British Columbia
  • If you have some pitting edema (where pressure on the limb with a fingerprint leaves an indentation), self-bandaging at night or 24/24 for a few days or more when you are due to replace your garment may lead to better control of your lymphedema. As a compression garment gets older the limb size might increase. Self-bandaging is to try to get back to your “best” size. There are many new self-bandaging aids and devices on the market. For more severe degrees of pitting edema, repeat a shorter course of decongestive lymphatic therapy with your therapist prior to a garment change. Dr. Anna Towers, Montreal, Quebec
  • Research indicates that early detection and timely treatment are key factors to successful lymphedema treatment. Be sure to pass on the early signs of feeling of heaviness, pain, swelling and discomfort.
  • Create a positive attitude! As you are putting on your garment think about the super-hero you are. This works well for children with lymphedema but could have positive outcomes for all patients. Kim Avanthay, Lac du Bonnet, Manitoba
  • Reporting changes in your lymphedema to your healthcare provider is a key component of risk reduction. For many, keeping a journal is therapeutic and can also be a great way to keep track of the condition of your limb. Make note of any changes in size, skin condition, sensation, temperature or colour.
  • The self-esteem issues that come along with lymphedema can mean that exposing your limb and your compression garments can be daunting, but covering it up can sometimes be a hassle. If exposing your limb is something that bothers you, it may help to start small. You can begin by wearing shorts or a t-shirt around the house, and then build up to running an errand, like grocery shopping and eventually work up to revealing your compression garment at a social gathering. Be patient and practice lots of positive self talk! It takes time, there is no need to rush yourself into an uncomfortable situation.
  • Practice positive self-talk and create a self-care routine that you’ll be able to maintain. Whether it’s learning how to self-bandage, or exercising for 15 minutes a day, small efforts can have a positive impact on your lymphedema management. Sometimes we all need a fresh start to get back on track!
  • Lymphedema is a chronic disease. Therapists have to be sure that parents and children understand the meaning of the treatment prescribed before starting. Sometimes, less is better! Start by supporting the parents and child overall as they are overwhelmed by the diagnosis. Encourage fun through enjoyable physical activities such as swimming.
  • Spring can be a time of renewal so consider taking the opportunity to change the way you care for your lymphedema. Practice positive self-talk and create a self-care routine that you know you’ll be able to maintain. Whether it is learning how to self-bandage, or exercising for 15 minutes day, even small efforts like these can have a positive impact on your lymphedema management. Sometimes we all need a fresh start to get back on track and into a routine!
  • For those living with leg lymphedema – gravity is not your friend. When sitting down at your computer for long periods of time, rest your affected leg by elevating it on a box or upside-down recycling blue bin under your desk.
  • Since most bactericidals can irritate your skin, try adding a few drops of tea-tree oil to your skin cream that you are applying to the lymphedematous limb. Although it may stink a bit, it is a very good repellent of mosquitoes, fleas, ticks and other bugs. These insects are attracted to the blood collecting under the skin that is compressed, so they will try hard to bite through the compression garment. Leda Raptis, Kingston, Ontario
  • People living with lymphedema can feel isolated and think no one else understands what they are going through. There are many patient stories on the Canadian Lymphedema Framework website www.canadalymph.ca/resources that can provide hope and inspiration. Do you have a story to tell? Email us at canadalymph@live.ca and we will feature it in a future issue of Pathways magazine
  • There are several new innovative products and suppliers in the marketplace to help people manage lymphedema. We encourage readers to carefully look at the advertisements in this issue to see some new companies featured in the world of technology, pumps and unique socks.  Please support all of our advertisers and sponsors.
  • Take time to pamper your lymphedema leg by doing things like rubbing moisturizing lotion on your legs, painting your toes a cheerful color, or wearing soft, comfy socks. Lymphedema maintenance routines can become an extension of “me-time”: when using a compression pump or doing manual lymphatic drainage, use it as time to read a few chapters of a book or catch up on the latest episode of your favourite TV show.
  • There are many assistive devices available through medical supply stores or through your fitter to help the challenging chore of putting on compression sleeves or stockings. These include rubber gloves (for traction), easy slides or donning frames. Ask your fitter for suggestions to help your daily habit of putting on your garments easier.
  • Try wrapping your leg or arm earlier in the evening (i.i. when you get home from work or when watching television) rather than waiting to apply before bed.
  • As a self-management strategy; measure your arms at least once a month using a tape measure to monitor your limb volume. Measurements can be taken at the wrist, elbow, and upper arm.
  • Find a consistent time to do self-massage. In the evening, we watch one particular TV program and during that time, I do my self-massage and bandaging before I get too tired. Donna Gushue, Lindsay, Ontario
  • During the colder months when there are fewer opportunities to connect with people outside, why not try listening to an informative podcast? One suggestion is called ‘The Lymphedema Podcast,’ hosted by a lymphedema therapist, which can be found on the website: www. lymphedemapodcast.com
  • In my experience, people with lymphedema who have the best outcomes, in terms of circumference, pain and function—are those patients who concentrate on overall health (physical, mental and social) in what they can control in their lives. Jennifer St. Michael, PT, CDT, Renfrew, Ontario

Increasing Awareness

  • Reading Pathways magazine is only one way of staying abreast of what is happening in the world of lymphedema. Two easy updates to incorporate into your daily life. Pub Med – searches will scour the latest research news that involves lymphedema and Google Alert – is an option to read about stories highlighted in the news regarding lymphedema.
  • March is LE Awareness Month – Use the winter months to prepare for a focus on lymphedema awareness in March.
    • Write your MPP about your personal story and include a copy of this magazine.
    • Send that same story to your local press or community news
    • Post on Facebook and twitter about lymphedema
    • Organize a community event or fundraiser to share information about lymphedema and raise funds for the CLF or your local provincial association
  • Many lymphedema patients become more knowledgeable about their condition than their primary health care providers – who unfortunately haven’t received very much medical training in this area. Help spread the word about lymphedema to both doctors and the people who may be at risk for lymphedema, by passing on your copy of the Pathways magazine to your doctor’s office for display in the reception or waiting area.
  • People living with lymphedema can feel isolated and think no one else understands what they are going through. There are many patient stories on the Canadian Lymphedema Framework website and the 2019 Lymphedema Calendar that can provide hope and inspiration. Do you have a story to tell? Email us at canadalymph@live.ca and to be featured in a future issue of Pathways magazine or other “Inspiring Stories” publications.
  • Share information about lymphedema with your child’s teacher/school. As well as knowing what to do if your child gets hurt, teachers can help in other ways. They can encourage stories about lymphedema in “show and tell” and help the class understand your child better.
  • Google Alerts is a useful tool that can be used to stay up-to-date on the latest lymphedema news and breakthroughs.  By visiting google.ca/alerts, you can set up email alerts that will notify you when lymphedema is in the news.  You simply choose the email address you’d like the alerts sent to and the frequency of the alerts, and links to news articles will appear in your email inbox.
  • This peer-reviewed publication is a dedicated online journal for improving practice, raising awareness and setting standards for lymphedema care. It is now available free online. Check out their current issue for a description of the abstract the CLF presented about Pathways at the recent Asia Pacific conference in Darwin, Australia.  www.journaloflymphoedema.com
  • Share information about lymphedema with your child’s teacher/school. As well as knowing what to do if your child gets hurt, teachers can help in other ways. They can encourage stories about lymphedema in “show and tell” and help the class understand your child better

And finally 

  • Lymphedema therapists work hard for little reward“”consider sending a note at intervals to tell your therapist how you’re doing and to say thanks for teaching lymphedema self-care. You can also send letters commending your therapist, doctor, nurse, and fitter to their respective professional organization, letting them know how they have made your medical care easier. Bonnie Pike – Phoenix, Arizona
    • With all the lists of dos and don’t – many people worry that there might have been something they could have done to prevent their lymphedema. There has been limited research as to what triggers may be responsible.  Recent research is indicating that people may be predisposed to a malfunctioning lymphatic system- and therefore.  Just remember – IT’S NOT YOUR FAULT.  What is important is that you start to manage the chronic condition early so that you have the best chance of living a healthy, normal life with this condition.
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