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National Lymphedema Network
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Lymph e-Channel vol. 6
January 2013
In This Issue
· Welcome
· Therapist Article
· Patient Perspective
· New Product
· LE Treatment Act
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Patients: We want to share
your stories!
Don't forget to send us
a short paragraph of
your experiences with lymphedema and a picture for us to publish!
All submissions should go to robin@lymphnet.org [mailto:robin@lymphnet.org].
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Help Spread Awareness!
The NLN is creating FREE Lymphedema Educational Kits for all patients at risk for
lymphedema. Please help us raise money for the campaign by creating your own page
and spreading the word. It only takes a minute!
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NLN's Support Community
Looking to correspond with others who have lymphedema? Look no further than the
NLN Lymphedema Support Community sponsored by inspire.com
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Position Papers
Exercise [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MTUxBwocPzmvBnD3o_7wgsUIZ19vC2JkxjXhz1cK35ISJmUeL1ZZrmygVB71MSQAwcNMO9QF7RvJ_CfATsWVdEY-sm3h4wpEKzuNFnbNW1Pm_B38eKQ91OuIcinfVItBYyXLF41__V-UAXqQt5RoRYGNgE6Ekev2AMKLdWBCcWQM_joqKAoF2i-8wBXuOlV_iCjFFNKZI4YKanj9LKcLQtZ5rz8ScBrU6OXsSN-kl5lQ_ZQLHcwyDh1OhfphVRqSSmvz1JUIzEjWcF2vkHN6Yyjr3AmU2C7rfU=]
Risk Reduction [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MQ7iqU1XeFpB5THP1IFjOk7hR5LOLJwZ6lBbB2RhQTgrEgK21VqwyQUbGmYE2HumkCpZn3vPfR4F10wDRKHn7FIyqOP9-LY6eNcBcJV7umVv7dPNNprSurLQkkvJRNdyZk-QU5HDbMU4ueFaABKtoPUIRvexbhHFw-RPvMksevfUvhVwJmEIUU4iDi8gcKFRGx8ZGQ3cEN47-ryfpwjKgVihkdkYq19xZ3p3JRPnMeI_em7fwybj16w5lOhvBvzv67CQdHlwj8TbbRIUQjOgwwvDGTuPnik7szJxE7maJpdrA==]
Diagnosis & Treatment of Lymphedema [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MQNJLrIabqrS_7eiDzzxoDjc8d_eUe0zDyXnZ92oSajA27jHMyUO3AHxtSBAsy1NajsjA_qXl9yv8Rz62Fnni_8_a-bZdO9iGidri5fdZvHlC3E0sCROVLzZsOh1917x7zbTaKF7tXeeMsLIpVQV-sFrEOqfZ0n_PiwanJFpAmwLwr-3iJa56PU9nQ-KARJIn66Irr2xPe_nEpTTqF3V6C9XkVs3EgkkPFhWW0EstWrHMUdz6kRBbXBCXYETPBDkLF9MN2wZHfSoEPMN7whcv_dyRTxX-p68Ms=]
Breast Cancer Related Lymphedema [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MT0Nn5CpRDh7i6BcjyJAZn73UJZ40wGyfqhPMFYC2UasnfUtftn7fh6rhnljo2I8NeuMqGheOdkLNv8F0YcajuI4ljOthUVY8jWlDRgxRe1sI3aK0eVRuV30-KM4aYnNN4NguMNKBeZOWt5wJil6FgOXo3NUbPJvXHlUsj-4ZDiNgY0Vb7r-Ri8JkOKxidurRjAuk0IV8eckFxljuWbUjtfl3fhb0xDA4dVN9VUbF3Gi-6z5zorV0NgechCQNuUhA3sJDTxQzN5rV5_t5U-rmv8]
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Quick Links
National Lymphedema Network [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MRCQBPOvU1MKxaio1aOGZdDJu7S2dPteCQoOZkeeDObbbd_Z_QTF7Zt6XJKh-Hq5-w3o_fsDMaygBc2-46pbwngvcZNvT0s-RO7zu7BNDMKQcipDVJPnqCwtG1SfBDrYS_-jptOXGq7ZlhzInBDjMaciTzN_LtSZEOjmwbOrKpnjeZMFOshZUUFaSwwATrQWB_Z7k2Htptaah8Lo3-Hb4DOTS-2Hu0NfrUFSORBOc6d_-WYVannLQnAsm81rau8Ys4=]
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Welcome to Lymph e-Channel
Dear friends of the NLN,
We kick off the New Year with our first e-Channel of 2013. We have an ambitious
schedule for the year ahead which includes expanding our reach to more patients
affected by lymphedema. There are many underlying causes to lymphedema, and every
patient has a different set of needs and concerns. This e-Channel focuses on bandaging
and its challenges, including tips on utilizing bandage alternatives beyond the
bedroom.
e-Channel is more focused, providing more practical guidelines for care as well
as presenting day-to-day issues. These experiences, good, not so good, and sometimes
frustrating, define what it means to live with lymphedema. Your stories Give Voice
to our community. The stories are passed around in support groups, exchanges with
your doctor and therapist, and the stranger on the street that asks what you have
on your arm or leg. Many patients have little to no support, and we want them to
know that there is a community for them - one that is more than willing to provide
help and support. Please do not be shy and share your experiences, and show that,
above all, life is just brilliant and even more fulfilling if you have to wear a
garment every day.
Thank you to our new e-Channel editorial committee for volunteering their time and
expertise.
The NLN staff is looking forward to a productive year for the lymphedema community
nationwide, and we wish everyone a healthy and happy New Year!
Kind Regards,
Saskia R.J. Thiadens, RN & NLN staff
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A Day in the Life of a "Night Garment"
By: Tracey Podolsky, MPT, CLT-LANA, CLM
What is a "Night Garment"? When I first began treating lymphedema, I never used
the terminology "Night Garment". I used to teach all patients how to remove the
elastic compression garment that was worn during the day and then self bandage the
limb at night before going to bed. Over the years, however, there has been a burst
of alternative options to use in place of self-bandaging during Phase II of Complete
Decongestive Therapy - Self-Care Management. I began referring to these garments
as "Night Garments" because they are most commonly used at night during sleep.
Night garments can be described as alternative nonelastic compression garments that
are made to replace bandaging in order to improve quality of life by making the
process of compressing the limb at night easier and faster to apply. Over the years,
I have been able to incorporate the use of so many of these night garments successfully
in self-care management. I almost always recommend the option of using a night garment
somewhere in the patient's self care regimen because I feel it does allow the patient
to be more compliant.
What I have learned by using night garments is that you must be attentive to how
many hours you are averaging in the night garments per night. When I see patients
for follow up in self-care management and they are struggling, I ask them a plethora
of questions to figure out why their self-care regimen isn't working for them.
Compliance to wearing the night garment every night is only one of the questions
that should be asked during a self-care management follow up appointment with your
lymphedema therapist. The most important question is how many hours are you averaging
each night in the night garment? The reason why this question is so important is
because some patients only sleep 3-4 hours a night. If a night garment is mistakenly
understood as a garment to be worn only when you are sleeping, the effected limb
may not be getting as many quality hours in the night garment as it should be.
This simple but extremely important question has solved issues that arise in self-
care management much quicker. I make a conscious effort to educate my patients about
how many hours of use are recommended for any of their compression garments when
I am teaching them how to independently manage their swelling. I typically recommend
that my patients shoot for 12 hours in the night garment which gives them less than
12 hours in the daytime elastic compression, given that you will be showering or
cleansing the skin in between. This may vary per patient depending on the lifestyle,
assistance needed, severity of lymphedema, and willingness to comply.
Some patients must use night garments 24 hours/day. Some other patients may only
use the night garments when they need a break from self-bandaging for a night.
Others may use the night garment during the day to add to the number of hours
in a night garment within a 24-hour period. Regardless, it is important to ask your
lymphedema therapist how long they recommend you use the night garment because success
in self-care management could depend on it.
Because different patients perceive the use of the term "Night Garment" differently,
I have changed my terminology with patients from "Night Garment" to "Alternative
Compression Garment" or "Nonelastic Compression Garment". This doesn't cause any
confusion or misunderstanding when instructing a patient when or how to use the
garment.
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How Bandage Alternatives Made My Lymphedema More Manageable
by Robin Miller, Design and Development Coordinator, NLN
For the newly diagnosed, the daily requirements for self LE care can be a lot to
take in. I was first diagnosed with LE when I was 22, and the thought of having
to wear a sleeve daily was too much for me to bear. My therapist kindly tried to
ease me into a routine by starting me off just wearing a sleeve and gauntlet during
the day and nothing at night. Soon I realized that in order to keep my arm under
control I would need to wear compression at night too.
The first time my therapist bandaged my arm I cried. I didn't think I'd ever get
used to it or be able to bandage it on my own. While I knew that this was a necessary
step, I had a very hard time actually doing it. It would take me over 30 minutes
every day to bandage, and I would usually end up removing the bandaging from my
arm sometime during the night. I had a difficult time getting the compression gradient
correct and that would often cause my hand to go numb. My failed bandage attempts
made me feel defeated, and I started losing interest in being compliant.
After seeing me struggle, my therapist introduced me to the wonderful world of bandage
alternatives. We looked at all of the options and picked one that we both thought
I would like. With my new bandage alternative my "bandaging" time was reduced from
30 minutes to 5 immediately! I only needed to bandage my fingers and slide my arm
into my custom made, comfy garment. After many years of practice I can roll finger
bandages, do my skin care, bandage my fingers and secure my bandage alternative
garment in about 2 minutes or less. That is something I always have time for!
Also, I have found that I don't mind my arm being "bandaged" anymore and am much
more willing to keep it on. If I'm having a lazy day around the house or am just
feeling a little extra swollen, I keep my garment on all day. I can still type and
do my work with it on and feel like I am being extra good about my care. Sometimes
my therapists (all of whom are good friends after all of these years) and I joke
about my early "non-compliant days" of treatment. They can't say that about me
any more!
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LymphaPod® Pneumatic Compression
by Lympha Press USA
Therapist review: Leslyn Keith, MS, OTR/L, CLT-LANA
Central Coast Lymphedema Therapy
San Louis Obispo, CA
I find the LymphaPod® pneumatic compression therapysystem an effective treatment
option for bariatric and larger sized patients who need treatment of the abdomen,
genitals and buttocks as well as the legs. It is particularly beneficial for those
patients with less mobility, who have difficulty donning and doffing other compression
garments.
I have had good success with the LymphaPod. It's been highly effective for softening
fibrotic tissue and making edema easier to evacuate. The appliance fits the bariatric-sized
patient better because of its design, and addresses edema in the trunk, and especially
the dependent edema in the pannus. My patient is motivated to use it regularly because
of how well it works. I consider it to be an essential part of my bariatric patient's
home program. He would not be able to manage his lymphedema without it."
Patient review: L. Kelley, lymphedema patient
Ripon, CA
After using the LymphaPod, I feel lighter and can move around better. It really
helps reduce my edema, particularly in my abdomen. I don't feel as stuck in one
place and it makes it easier for me to walk. I get from a sitting to a standing
position more easily. I feel less heaviness and pressure which makes it easier for
me to sleep. After using the LymphaPod my body doesn't hurt as much; using it gives
me hope. I look forward to using it each time, and it has changed my life.
Contact Lympha Press USA www.lympha-press.com, toll free 888-596-7421 for information.
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Lymphedema Treatment Act Update
As we enter this new cycle of Congress I am pleased to share with you this important
information regarding the Lymphedema Treatment Act.
We are glad that the majority of our cosponsors have returned to office this year.
Although cosponsors do not carry over from one Congress to the next, members typically
sign back on to bills they cosponsored previously. Once our bill is reintroduced
in the 113th Congress it will be imperative that you contact your members of Congress
again.
In the mean time, you can use our "smart" Action Alert to thank your Representative
if they cosponsored the Act during the 112th Congress, or express your disappointment
if they did not. Either way you will be laying the groundwork for this cycle of
Congress by asking that they cosponsor as soon as the bill is reintroduced. (Click
HERE [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MRJkMOlPt3apr6G-qvlsq6wtBq-EOefTi1P_AOqs3T7_cfam28xJcNr747uE6FPKeBmxm053MYWUFc-x_ukmf1qMCOQGw9Rkivh8Qx0Ezj-mlnaAQPpThfYiEkta_lbdUgEXy5j5GKG_YoS_R0dd9GA1yPyA8aCogrHzOAewvP3-rfJmPScKTRNLMRwnYucEoAEb77Q6METsDU4x0GTxDhiIIt-PNFiEf_aBZuvm7CYE0q9AV-Fi1xjhnyNXK3qeNvZbqHrDPQR6ZWNA3Og_EIFup_QStQDHxwiNju37vJZ8TUVEVgeMZJlz1puZa0P6w8z9_vOrsX0uyv0f5KG98_OZwhvpkWneOUvzXoqItt_6Q==]
to send your letter now.)
Be aware that bills also do not carry over from one Congress to the next. All bills
that have not been passed into law must be reintroduced in the subsequent Congress.
In the process, they receive a new bill number. We are saddened that our original
bill sponsor, Congressman Larry Kissell, was not reelected, but we are very excited
that Congressman Dave Reichert (WA-8) will be the sponsor of our bill in the 113th
Congress.
A wonderful team of patient advocates in WA State secured Reichert's sponsorship.
Inspired by their success, we have begun building similar teams in every state in
order to gain maximum support for the Act. If you are interested in working with
other advocates in your state please email us at info@LymphedemaTreatmentAct.org
[mailto:info@LymphedemaTreatmentAct.org].
We made considerably more progress in the 112th Congress than the 111th, and with
your help we'll go even further during the 113th Congress. Our grass roots advocacy
depends on the involvement of people just like you!
To receive the most up to date information on the bill status and the other simple
ways you can help, please subscribe to the Lymphedema Treatment Act e-Newsletter
[http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MSZ8hGGtjqwq-5-qyz17LZkmedb442mu-QJrjOgZjQ7ClcEW63pt_uKrb26C7wCOOdFxEnFtRGv56Ht1ZakjenZGl6w9j5Iw6f61Ya8w7-8pM4cgN7qOGMBa4bAGSpHeiCiEFxjE7CIxOfNqeGV049xn7gRxKHmYQ6JHvvR46yPc5OxO25zk-YT0DywJvOKRVNGHEXnD5_JXFHMOoRsMgqRBctckpM67YGiT9vKFuJiNq9YyIN9ELtgnBvtpxqoDi-znv6SdAn4mvQgW6Rd6a_zwNk0bNN56MC-uCrLT5ZGxw==].
Then, please use our easy Tell-A-Friend [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MRc6R1huHHvajkjB_LTyMMjmuOCNtyoITwrEQb5DQjn2oHlPFZ26jEHg4gPPnWC2xP2_VpqjNpW_E_47G7j__-XsAwrmtw07bX9bkHBkA7BNAo3RNzED1WN2fqnuZG175f-AsrFZR6o7cKyHXIdvqIzUR8rZb-9emedDfOJRoSjs3u80R1d4WJGhhdIUADuQ96J7YE7xXA1vBa4oseabwIP3GqKisBW63CKmHwWBKVSURMDwo8fwe-LoXzn2ZkU8fuHTzpTyDytorIab57N9O1s3m8ck4THMbc=]
form to get others involved.
The federal legislative process is long and tedious, and can feel frustratingly
slow at times, but those who succeed do so because they have the will to endure
the process. With your help, we will persevere as long as it takes and we will succeed!
Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org [http://r20.rs6.net/tn.jsp?e=001fTMJbYXY-MRNTY9UzE87ppNvaRUPLpq15Vq-Wrca1hKZVAz90xlvEC8ajlpjFxCQZyfjc3ZHlHZMkgHpjB-MZPmw77lF_Jx11pxA4-2w86TglJEsc0-WpVApLDcEBmIjF9hHnjlB5vwddYZBL5l8lHiAm-2nFrM8CB8WYDRTxFFS1b6KlkML471Cti3zZtXfIF3Y0ebr8DVDk7nFydfcNl_a9ZQkZY9KmlTDoBOgosIaoc-NlaSdbsCv67VoFwlu5P7MiTAjLZU3mYTQKxMU2w==]
info@LymphedemaTreatmentAct.org [mailto:info@LymphedemaTreatmentAct.org]
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National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
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The inclusion of advertising, logos or Web site links within this electronic publication
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products or services so advertised.
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