Self-management of Lymphedema - Choosing between active coping or passive avoidance?

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5 Self-management of Lymphedema - Choosing between active coping or passive avoidance? Treating lymphedema is time-consuming, frustrating, psychologically difficult to handle on a daily basis and expensive. There is a widespread perception that there is nothing you can do about lymphedema and that you just have to live with it for the rest of your life. Well, lymphedema is not a disease one just lives with, it can be successfully managed with on-going maintenance. Self-care is a major component of a successful life-long management of lymphedema. According to international lymphedema management guidelines, life-long maintenance of lymphedema consists of: - daily use of compression garments - Manual lymphatic drainage (whenever needed) - self-care o daily skin and nail care o daily decongestive exercises (also called remedial or therapeutical exercises) combined with o deep breathing exercises o self-massage ( explained by a certified therapist) - regular exercise (aerobic, strength, flexibility exercises, etc) - weigh control Talking about all the components of self-care would be too long in one article, so I will concentrate on two methods that our Tuusula Support Group has been experimenting : Lymphedema remedial exercises together with deep breathing exercises and Aqua Lymphatic Therapy (ALT). Decongestive (Remedial) Exercises for Lymphedema Decongestive and breathing exercises are an integral part in the treatment and management of lymphedema. They are designed to encourage the flow of lymph and complement the more passive drainage techniques like Manual lymphatic drainage. The exercises we have been practicing are based on Steve Norton s DVD Remedial exercises for the Upper Extremities which I ordered from the USA. Steve Norton is a renowned authority in the field of lymphedema therapy and founder of the Norton School of Lymphatic Therapy. The DVD consists of three individual routines (each about 15 minutes) which have been designed to instruct the participant to correctly exercise his/her affected arm. These clinically accepted therapeutical exercises are very useful for patients who continue their home care program. They can also be used by therapists providing treatments for patients. As a matter of fact, my therapist has ordered both the arm and the leg DVD for her practice and this educational material can be borrowed by clients. The first routine consists of exercises using only arms and hands; the second uses a soft ball and the third uses a yard stick. Exercises are performed according to a specific sequence: abdominal breathing, opening of the lymphatic pathways, dynamic pumping exercises, abdominal breathing to finish. It is important to wear compression (sleeve and glove) as it enhances the pumping action of the muscles. Movements are executed in a slow and controlled manner and the muscles should be relaxed between each exercise. Abdominal (diaphragmatic) breathing: Deep breathing exercises stimulate the diaphragm to help create a pumping action for the lymphatic system. In addition, it offers many great benefits such as increasing oxygen to tissue cells throughout the body, lowering heart rate, decreasing blood pressure, relaxing muscles which are also very important to promote lymphatic flow throughout the body. Opening of the Lymphatic pathways: these exercises are always performed first as a warm up to prepare the lymphatics to receive the lymph that will be flowing from the arm. They consist of head and neck movements, followed by shoulder and chest movements to create space for the lymph that will be moved by the exercises. Exercises: Various pumping exercises involving upper, forearm, wrist and fingers to move the lymph from the extremities toward the chest and neck area. These remedial exercises are a useful tool for patients who are willing to be actively involved in the selfmanagement process and should be available to everybody. I prepared a Finish version of these exercises with which the ladies of our support group been exercising since last spring. With Steve Norton s

6 agreement, I posted the English exercise worksheets that I prepared on the web site of the breast cancer association in the USA. I got a very positive feedback from the ladies there. They found the instructions and illustrations very helpful and the fact that many other women were also doing the same program was very motivating. Written instructions are available both in finish and english for routine I, II and III and illustrations for routine I and III. These easy-to-follow exercises are important for self-help and our support group is currently collaborating with Rintasyöpäyhdistys to find a way to make them available to many lymphedema patients in Finland. It is important that lymphedema patients be better educated in self-management and have access to educational material. Aqua Lymphatic Therapy (ALT) The Tidhar Method The use of aquatic exercise as one means to manage lymphedema is more and more talked about. If, in principle, water is good for lymphedema, one must make a difference between various forms of aquatic exercises. Water aerobic, water jogging, swimming, etc, are more intense activities that are good for stimulating the overall fitness and conditioning of the whole body; they don t specifically target lymphedema. ALT is a method designed by Dorit Tidhar, Lymphedema therapist and teacher in self management and exercise for lymphedema in Quebec, Canada. This is an innovative program for lymphedema performed in a therapy pool. ALT uses the physical properties of the water to enable women (and men) to perform safe exercises and self-massage to maintain and even improve the volume reduction achieved with conventional treatment. Exercises are gentle, slow paced, performed in a low resistance manner. The sequence of exercises in ALT is important: - breathing exercises combined with - exercises for chest and shoulders with arm gently floating horizontally (no resistance) to open central lymphatic channels, and mobilize the upper chest muscles. - self-massage sequence - various exercises with arms positioned vertically in the water to maximize the pressure gradient and move lymph from the extremities towards the cleared areas - self-massage sequence - deep breathing. The good thing about exercising in an aquatic environment is that one does not need compression. The hydrostatic pressure provides the compression you need on your arm and also on the whole body. Being a member of the National Lymphedema Network (NLN) in the USA has enabled me to have access to a lot of information regarding new developments in the field of LE treatment and that is how I discovered ALT. I contacted D. Tidhar in Canada and told her I would like to try her method. She sent me the DVD she had just released for arm lymphedema and I asked the ladies of our support group if they would be willing to try it with me. Since last November, we have been practicing once a week in the therapy pool in Tuusula to get familiar with all the moves. The program takes 45 to 50 mn. Normally, this program is done under the supervision of a trained lymphedema therapist who takes measurements before and after pool session in order to follow the patients progress. There is nobody in Finland who is certified in the Tidhar method, so we decided to try it ourselves. This is a gentle and safe program which gives patients another tool for carrying out self treatment at their convenience. Safety rules for ALT are the same as for any aquatic activity for lymphedema people: i.e. no open wound, no active infection, no recent radiation on the skin, no low white cells count, etc. At first, all the components of life-long maintenance seem a lot, but once you have integrated them all in your life, it becomes a routine. Lymphedema will never go away, but despite the frustration and sometimes discouragement, you must remember that by actively coping with lymphedema you not only lowers the risk of infection, prevent deterioration, but also improves your quality of life. The way you handle your lymphedema, emotionally and physically has a powerful impact. Many patients are isolated, poorly informed about lymphedema, treatments available and self-management components. We want to share experiences and encourage them to actively cope with this disease. Having some professionals on our side to support our project would be a great asset. Text: Martine Sarret-Talvela Translation: Anita Roppola