L'info AQL fall 17

LAUNCHING a support group

The Benefits of YOGA

Online access to this magazine and Pathways in English for LAQ members Join us on Facebook www.infolympho.ca

TEEN camp

Votre ressource pour le lymphœdème

L’iNFO

Pathways en français + des articles du Québec et d’ailleurs

The right FIT

Numéro spécial GRATUIT

Un médicament porteur d’espoir L’IMPORTANCE

de la prise en charge Pathways in French & articles from Québec and beyond

Your resource for lymphedema

FREE Special Issue

L’iNFO

Qualité de vie après la CHIRURGIE Les bienfaits du YOGA

www.infolympho.ca Rejoignez-nous sur Facebook

Les ADOS réunis en camp

Accès à ce magazine en ligne pour les membres de l’AQL

AQL_couverture_PRINT.indd 2-3

17-10-13 14:19

pour mieux vivre avec le lymphœdème

Find us on

L’AQL

www.infolympho.ca

514 979-2463

Become a member of the LAQ, volunteer for the cause or deepen your knowledge with us. Together, we can support the people courageously living with lymphedema.

Le lymphœdème (prononcez linf-édèm) est de l’enflure et une inflammation causées par un système lymphatique traumatisé ou défectueux. Cette condition qui fait enfler les bras, les jambes, la tête, le cou, le tronc ou d’autres parties du corps peut être une conséquence des traitements contre le cancer, d’une blessure ou d’un développement anormal. À l’heure actuelle, le lymphœdème est une condition chronique incurable.

S’adapter au lymphœdème et se familiariser avec la Thérapie lymphatique décongestive et l’autogestion présentent plusieurs défis. L’Association québécoise du lymphœdème est là pour vous aider. Organisation à but non lucratif fondée en 1999, l’AQL a pour objectifs de mieux faire connaître le lymphœdème, ses causes, la réduction des risques et les traitements.

L’AQL est formée de personnes directement touchées par le lymphœdème, leurs familles, leurs amis ainsi que par des professionnels de la santé certifiés en traitement du lymphœdème et spécialement sensibilisés à cette condition.

Nos services visent à aider les patients à réduire le plus possible les impacts du lymphœdème dans leur vie. L’AQL vous offre un éventail de ressources : • Documentation en français et en anglais expliquant la réduction des risques et la gestion dans le cadre de la Thérapie lymphatique décongestive • NOUVEAU Notre livret en français – Vivre avec le lymphœdème : apprendre l’autogestion. Un outil facilitant la prise en charge par le patient • Service téléphonique : des thérapeutes certifiés répondent à vos questions et vous orientent

• Rencontres d’éducation et d’entraide pour les patients – animées par des thérapeutes et des patients • Formations offertes aux thérapeutes souhaitant obtenir une certification reconnue • Réunions de réseautage et de formation continue pour thérapeutes accrédités • L’info AQL, notre magazine trimestriel informant nos membres de l’actualité du lymphœdème d’ici et d’ailleurs !

• Lymphedema magazine: Get Pathways in English and L’info AQL in French with your LAQ membership • Networking and continuing education meetings for certified therapists • Organized training for health professionals wishing to obtain a recognized lymphedema therapy certification • Education and support meetings for patients – led by therapists and patients

• Bottin pour identifier les thérapeutes certifiés par région

• Resource Guide to identify certified therapists by region • Telephone service: certified therapists to answer your questions and guide you • Our booklet in English - Living with Lymphedema: learn self-management. A tool to facilitate the patient to be self-caring • Documentation in French and in English explaining the risk reduction and management in decongestive lymphatic therapy

Our services are designed to help patients reduce as much as possible the impacts of lymphedema in their lives. The LAQ offers a range of resources:

treatment and especially aware of this condition. families, friends and healthcare professionals certified in lymphedema The LAQ is formed of people directly affected by lymphedema, their its causes, risk reduction and treatments. in 1999, the LAQ’s objectives are to raise awareness about lymphedema, of Québec (LAQ) is there to help you. A non-profit organization founded phatic therapy present several challenges. The Lymphedema Association Adapting to lymphedema and becoming familiar with decongestive lymdevelopment. Currently, lymphedema is a chronic, incurable condition. body, can be a side effect of cancer treatment, an injury or abnormal creates swelling of the arms, legs, head, neck, trunk or other parts of the by a traumatized or defective lymphatic system. This condition, which Lymphedema (pronounce linf-edima) is swelling and inflammation caused

Devenez membre de l’AQL, faites du bénévolat pour la cause ou approfondissez vos connaissances avec nous. Ensemble, nous pouvons alléger la vie des personnes vivant courageusement avec le lymphœdème.

United to live better with lymphedema

514 979-2463 www.infolympho.ca

LAQ

Suivez-nous sur

AQL_couverture_PRINT.indd 4-5

17-10-13 14:19

AQL_MAQUETTE_french.indd 23

17-10-13 11:00

23

PATIENTS AND THERAPISTS COOPERATE TO PROVIDE SUPPORT ON THE NORTH SHORE

L’info AQL

How to launch a

SUPPORT GROUP

BY ANNE-MARIE JONCAS

t is not easy to live with lymphedema: “especially at the beginning!”; “especially when, after a long stable period, the swelling comes back in force”; “especially when you feel isolated and alone in your situation”; “even more so when you live far away from the big cities” and “it’s not so obvious when your lymphedema makes getting around more complicated”. “It gets very difficult when you have infection”. “Personally I am only at risk, but it worries me a lot”; “it would be so much better if we could talk to people who understand.”

There are so many concerns… It is precisely for all these reasons and more that a group affiliated with the LAQ was created as a pilot project on Montreal’s North Shore with a mission to educate and support. This initiative which was started by a patient can easily be repeated by a therapist, a lymphedema clinic, a breast clinic, an oncology center, a patient, the parent of a child living with lymphedema, etc.

To start a support group, you need five elements: 1 A few interested patients at risk or living with lymphedema – We contacted a local resource center for people undergoing cancer treatment (SERCAN).

Through a short presentation on lymphedema to the patients at SERCAN, we were able to recruit 7 people interested in joining our group. We then sent a release to the local newspaper and the LAQ published our meeting calendar on its Facebook page. When

people called to register, we had many occasions to explain the content of the meeting and to list the expectations of participants.

2 A therapist certified in lymphedema who becomes a partner – We searched the LAQ Resource Guide for our region and we got in touch with a local massage therapist who is certified in lymphedema. We invited her to lead the meeting.

It is essential that a health professional certified in lymphedema be responsible for the content of these meetings.

Valérie Pedneault volunteered to come and share her knowledge with our group.

3 An educated and informed volunteer patient – In this case, I was the initiator of this project. I had attended several education sessions held by the LAQ in Montreal. To get training, the patient can get in touch with the LAQ and they will provide resources. It is very important that a patient act as moderator of the meeting, because it helps to build trust and facilitate support and it frees the therapist from having to worry about tasks such as advertising, room reservations, etc.

4 A meeting room – SERCAN agreed to let us use a meeting room free of charge.

It was easy for us to find a venue to hold our meetings by asking a obvious partner for lymphedema. Try contacting CLSC’s, cancer organisations and physiotherapy clinics.

5 Themes and educational material – We used the traditional themes of the

L’info AQL 6

LAQ, namely the ABC of lymphedema and the reduction of risks; self-management, self-massage, introduction of the Casley Smith exercises, physical activity and lymphedema, compression garments and the RAMQ program. We also handed out the LAQ educational brochures to participants.

From one meeting to the next word got around on the North Shore, and patients developed strong ties. An increasing number of participants now attend our meetings; they bring their questions and they share. This is a very positive experience that everyone can enjoy.

To check if there is an education and support group in your area or if you would like to start your own LAQ group, simply contact the Lymphedema Association of Québec by dialing 514 979-2463. With the help of our resources, you will soon be ready to take flight!

AQL_MAQUETTE_french.indd 24

17-10-16 20:51

24

BENEFICIAL TO PATIENTS IN A LYMPHEDEMAADAPTED VERSION

L’info AQL

YOGA AND LYMPHEDEMA

BY VALÉRIE PEDNEAULT

re you interested in yoga, but you’re no longer 20 years old?

Good news: yoga is for all ages! It’s a discipline based on selfrespect and on gradually increasing your physical abilities. Regardless of your physical condition, there is a form of yoga for you. Hatha yoga is the most common in the West. It places great importance on āsanas, i.e. physical exercise combining strength and flexibility and on prānāyāmas, or breathing technique.

Physical activity is an integral part of the care and treatment of lymphedema.

Yoga can be adapted to one’s physical condition1,2. During chemotherapy, for example, vigorous āsanas would be inappropriate. On the other hand, a gently restorative program combined with breathing exercises would be ideal.

Meditation and guided visualization are not only very relaxing but can also reduce anxiety. Yoga has been shown to reduce fatigue, improve the quality of sleep and indeed, the quality of life, in general1,3,4.

But how can yoga help in Lymphedema?

Physical activity is an integral part of the care and treatment of lymphedema.

Muscle contraction and deep diaphragmatic breathing improve lymphatic circulation5. It has been established that gentle shoulder movement, aqua lymphatic therapy and remedial exercises

(such as the Casley-Smith sequence) do not aggravate lymphedema6.

In addition, current research on other forms of exercise has shown that none of the programs aggravates or causes lymphedema6. When participants are properly followed by therapists and they carry out activities gradually, all goes welll generally. Dragonboat7 teams are a prime example of this: despite vigorous activity, participants’ lymphedema did not increase since they trained slowly but surely.

It is important to monitor your body closely when you are new to yoga. Start slowly, do a sequence in 2 to 4 sessions before progressing to the next level.

Over the next 24 hours, check to see if there is any swelling or pain. Continue if the symptoms disappear within this time period. If swelling persists, moderate your efforts, practice self-management and wear a compression sleeve or stocking as needed (if none was worn previously).

The more advanced positions and inversions should be approached with great caution and initially avoided8.

They can always be added gradually, with adaptations. These positions include headstands (too much weight on the arms and neck), shoulder supporting exercises, such as the plank (too much weight and pressure on the neck and shoulders) and the downward dog position (too much weight on the arms). It is also important to exercise caution with hot yoga, as heat and humidity are not recommended for anyone with lymphedema or at risk. If you just want to experiment, however, monitor yourself carefully, as you would with any new activity.

L’info AQL 5

From a scientific point of view, the physical benefits of yoga are chiefly based on the direct experience of participants and the observations of coaches and therapists. As far as lymphedema is concerned, no study has shown a worsening of the condition, indeed, the results seem to show only benefits 8,9. Future research will teach us more about yoga’s benefits for lymphedema patients.

Research and my own experience as a yoga teacher and lymphedema therapist have shown me that yoga is the perfect complement to therapy. Joining a supervised yoga class will give you one more tool to promote good lymphedema management.

AQL_MAQUETTE_french.indd 25

17-10-16 20:51

25

L’info AQL

CAMP ANTHARES, CANDIA, TURIN, ITALY, 12 -16 JULY 2017

2nd INTERNATIONAL CAMP for children with lymphedema: resumé of an enriching experience

BY CHANTAL LAPOINTE

et me present myself: Chantal Lapointe, pediatric physiotherapist at the University Hospital of Sainte-Justine in Montreal.

Since January 2014 I have been caring for children with lymphedema who are patients of our clinic.

T hroug h th e a s s is ta nc e o f Dr. Isabelle Quéré, two adolescents from our clinic and I had the opportunity to take part in an international camp dedicated to children with lymphedema in Turin, Italy. It was a unique experience of sharing, collaborating, joy, games and giggling together.

Twenty-two children from Italy, France, England, Ireland, South Africa and Canada arrived at the camp, motivated to learn about their condition, to have fun and make new friends.

The days at the camp flew by in an atmosphere of good humour and mutual

helpfulness. Professionals from different countries participated in many workshops and sports activities.

DAY 1 The eminent Dr. Roccatello of the Centre of Research of Immunopatholoy and Documentation of Rare Diseases (CMID) presented a theoretical session on lymphedema in Italian.

DAY 2 In a workshop led by therapists, children and parents looked into lymphatic drainage.

DAY 3 Bandaging was the topic of the day and everyone got to practise under the guidance of the expert patients and therapists.

Throughout their stay, the children

L’info AQL 4

encouraged each other and gave suggestions on how to improve their technique. The afternoons were reserved for different guided physical activities such as aquagym, stretching and other exercises outdoors, a yoga session, and even an introduction to dragon-boating techniques. Afterwards, the children could make their own choice among other activities offered at the camp, such as archery, tree to tree, and swimming, all in the enchanting setting of Camp Anthares which is surrounded by the Italian Alps.

We were kept busy in the evenings with the ‘discoteca’, facilitated by Cesco, whom the children adored.

We returned filled with memories, new friends, new challenges, and new knowledge to share. Obviously, this unforgettable, life-changing experience could not have happened without the remarkable Italian organizers. Thank you, Elodi Stasi and Roberto Bartoletti, for your commitment and exceptional dedication. Thank you to the Lymphido Association (association of Italian parents of children with primary lymphedema) for their invaluable collaboration.

Thank you to the team of Italian therapists for their warm welcome. Thank you to the Lymphedema Association of Québec (LAQ) for its support of participation in this camp.

Looking forward to seeing you all at the next international camp.

Pediatric lymphedema therapist colleagues interested in organizing the next international camp... come forward!

The next camp could take place in your beautiful corner of the world! See you soon!

AQL_MAQUETTE_french.indd 26

17-10-13 11:00

26

IS THIS THE RIGHT FIT?

L’info AQL

What you should look for with

COMPRESSION GARMENTS

BY KATRIN SCHUMANN LYMPHEDEMA THERAPIST AND GARMENT FITTER

ymphedema requires a lifelong commitment to compression garments. Having the right fit with the right garment is therefore essential and it may change over time. Many options are available (e.g. circular, flat-knit, standard, custommade), so your garment fitter should be able to guide you. Ideally, every garment should be custom-made, at least in lymphedema stages II and III.

At your measurement assessment with the fitter, expect to be asked the following questions: • What are your daily activities?

• What type of sport(s) or exercise(s) are you doing?

• Are you able to put on or take off the garment by yourself?

• Do you have help to put or take off the garment?

The garment fitter must inspect your limb to evaluate the skin color, the dimension of the swelling, and your mobility. In a last step before the measurements can be taken, the garment fitter has to touch and feel the skin of the affected and the unaffected limb. The information obtained from this examination can be very significant and could change the type of compression that you need. After obtaining all this information, the garment fitter will choose the material and take the measurements.

A custom-made garment takes time to be produced and delivered, as it is manufactured either in Germany or in

the United States. To avoid an increase in swelling, it is recommended to continue bandaging or wear your old garment while you are waiting for the new one to arrive. In addition, you should continue doing your exercises. If you are not continuing, your affected limb could increase and your new garment may not fit.

Once your custom-made garment is received, the fitter will teach you some tips on how to put it on: • The seam has to be placed in the middle of the back of your leg or arm (elbow).

• The special marks (elbow, knee and/or heel) need to be properly placed.

• The donning aids (e.g. gloves, butler, easy slide) should be offered.

L’info AQL 3

When you receive your garment, the fitter often puts it on for you to show you how it should fit. However, it is suggested you remove it and try to put it on (either by yourself or with the person helping you) in front of the fitter. This way, the fitter can identify problems and propose other tips and/or proper donning aids.

The fitter will make sure that the length is right and that the garment fits you adequately. You should then give feedback on how the compression feels and whether there is any discomfort. Of course, the new garment will be tight, but it should not cause constriction (e.g. numbness in fingers/hand or toes/foot).

You are now wearing your new garment. The fit may be fine, or you may still have some doubts. Each custommade garment comes with a warranty from the company; please ask your fitter about the return policies. Garments that do not fit properly can be sent back to the company for adjustments within the warranty period.

Usually, the garment needs to be remeasured when: • The garment is too tight or too loose (sliding down easily).

• The length is not adequate (too long or too short).

Measuring is an art. It is important that you choose a garment fitter you are comfortable with and who makes sure that your garment fits properly, as you have to wear it every day. Your body will change over time, just as your garment!