New NLN position paper on exercise

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kira66715
kira66715 Member Posts: 4,681
edited June 2014 in Lymphedema

The NLN has updated their position paper on exercise, and it was written by Nancy Hutchinson MD, and is very comprehensive--and as much as they fond of Katie Schmitz, they comment on the benefit of slow, controlled resistance training, but don't state that weight lifting can cure LE:

http://www.lymphnet.org/pdfDocs/nlnexercise.pdf

NLN Position Paper: Exercise
Page 1 of 6
POSITION STATEMENT OF THE
NATIONAL LYMPHEDEMA NETWORK
By: NLN Medical Advisory Committee
Updated December 2011
TOPIC: EXERCISE
Fitness and Exercise:
It is very important for individuals with lymphedema to be physically fit and maintain a healthy weight. A safe form of exercise is an essential part of a fitness program for people with lymphedema. Fitness and exercise are not the same. Exercise includes many different types of physical movement. The three main types of exercise are: aerobic, strength, and flexibility. These three types of exercise, along with Lymphedema Remedial Exercises, are addressed in this paper. There are many other types of exercise that have health benefits such as Pilates, yoga, Tai Chi, Qigong, aquatic exercise,1 trampoline rebounding, breathing exercises,2 and relaxation exercise that have not been adequately studied in people with lymphedema. However, the person with lymphedema can use the benefits of any system of exercise if he/she follows the general safety principles of exercise with lymphedema, seeks medical guidance, and uses caution in starting any new exercise program.


Exercise and types of lymphedema:
Lymphedema has many causes. The type of exercise that is best for an individual depends upon the severity and cause of lymphedema and other co‐existing medical conditions (e.g. heart disease, diabetes, arthritis, etc). Exercise for breast cancer‐related lymphedema is the most studied lymphedema condition. Many conclusions about exercise and lymphedema are based on studies of breast cancer survivors that may or may not apply to other forms of lymphedema.


Lymphedema Remedial Exercise:
Lymphedema Remedial Exercise is a part of treatment for lymphedema when reduction of size of a limb is necessary. Lymphedema Remedial Exercise involves active, repetitive, non‐resistive motion of the involved body part. Exercise in Phase I and Phase II Complete Decongestive Therapy (CDT) (see Position Paper "Diagnosis and Treatment of Lymphedema" http://www.lymphnet.org/pdfDocs/nlntreatment.pdf) is performed with compression as an essential part of the total (complete) reductive phase of lymphedema therapy.3‐5 Lymphedema exercises, used with compression, help the body's natural muscle pump to increase venous and lymphatic fluid return to the circulatory system and out of the swollen areas. Remedial Exercises for lymphedema are similar to some movements of low impact Tai Chi and Qigong, but are different in that lymphedema Remedial Exercise is used with Phase I treatment of lymphedema to reduce size of the body part. Lymphedema Remedial Exercise has been studied and shown to reduce limb swelling.3‐5 It is unknown whether Lymphedema Remedial Exercise alone can prevent lymphedema in at‐risk individuals, or whether they can maintain reduction of swelling without compression.


Flexibility or Stretching Exercises:
Flexibility exercises include a wide range of activities that stretch muscle and connective tissues to increase and/or preserve range of motion. Flexibility exercises can minimize skin scarring and joint contractures that may lessen lymph flow. Flexibility exercises should be performed slowly and progressed gradually. Flexibility exercises are not a treatment for lymphedema, but are a part of optimal lifestyle management for reducing the complications of lymphedema. Lymphedema has a tendency to restrict motion of muscles and joints. Optimal lymphatic function requires full mobility of muscles and joints. Lymphedema from cancer treatment can be associated with tight muscles and connective tissues due to fibrous adhesions from surgery or radiation. Tight muscles and scars from surgery or radiation may require Physical or Occupational Therapy to treat before attempting to do self‐stretching. Specific stretching exercises for cancer treatment‐related scars and joint restrictions in an area at risk of lymphedema should be prescribed by a provider familiar with the management of lymphedema. A specialized form of stretching exercise may be required for Axillary Web Syndrome (AWS) or axillary cording, a condition that can occur in cancer survivors who have had axillary (armpit) lymph nodes removed.6 AWS may benefit from treatment by a certified lymphedema therapist and specific home stretches taught by a therapist.7


Resistance or Weight‐Lifting Exercise:
Resistance exercises are usually thought of as weight‐lifting. Resistance exercises may involve lifting body weight (such as push‐ups) or lifting objects (such as dumbbells, weight machines, etc). Resistance exercises can be performed without moving a joint (isometric) or by moving the joint through a range of motion (isotonic). All of these types of resistance exercise may be utilized by individuals with lymphedema, but should be done cautiously, starting with low weights, low repetitions, and gradual progression. Resistance exercises are performed against an opposing load to enhance muscle power, stamina, and tone. Resistance exercise may reduce limb volume when used as an adjunct to compression therapy8 One study showed that guided participation in resistance exercise, as a part of a total fitness program, did not increase the risk of developing lymphedema in breast cancer patients at risk over the group who did not exercise.9 Lymphedema did occur in both groups. No increase in lymphedema development was noted between the exercise and the non‐exercise group. There have been many studies on resistance exercise in breast cancer‐related lymphedema that show no harmful effect on lymphedema and beneficial effects for overall health.


Aerobic Conditioning or Cardiopulmonary Exercise:
Aerobic conditioning exercise is often referred to as "cardio" exercise. Aerobic exercise involves activity that uses large muscle groups to increase the heart rate to 60‐70% of an individual's maximum heart rate. This type of exercise, when progressed gradually, ncreases the heart and lung capacity while also improving muscle conditioning. Aerobic conditioning enhances cardiovascular fitness, effective weight management, and overall health and well‐being, all of which are very beneficial to people with lymphedema from all causes.10‐21 Walking, jogging, cycling, and swimming are examples of aerobic conditioning exercise. Aerobic conditioning has not been studied formally as a treatment for lymphedema. One study showed no adverse effect on lymphedema from aerobic exercise.17


Resistance Exercise plus Aerobic Exercise:
Studies of combined resistance and aerobic exercise have shown no adverse effects on lymphedema.21 No studies have specifically evaluated resistance plus aerobic exercise as a stand‐alone treatment for lymphedema. One study in breast cancer‐related lymphedema showed that the individuals who performed aerobic conditioning and weight lifting had better control of their lymphedema and had fewer flares of lymphedema than those who did not exercise. However, individuals with lymphedema still had to utilize standard lymphedema therapy techniques for flares.21 Another study about women at risk for breast cancer‐related lymphedema showed that aerobic conditioning and weight‐lifting reduced the risk of developing lymphedema.


Considerations for Designing an Exercise Program:
A number of studies have shown that aerobic and resistance exercises are safe and beneficial for people with lymphedema or at risk of lymphedema if they follow the guidelines for progressing slowly, use recommended compression, and report any adverse effects to a professional who can help them adapt their exercise regimen.9,16‐21 Most studies on lymphedema and exercise have been done on breast cancer survivors, but the principles may guide exercise in other forms of lymphedema. Individuals with or at risk of lymphedema must report other health conditions that need to be considered in developing a personal exercise regimen (diabetes, heart disease, neuropathy, arthritis, etc). Modifications of aerobic and resistance exercise that are commonly recommended for individuals with lymphedema are: 1) Allowing adequate rest intervals between sets; 2) Avoiding weights that wrap tightly around an extremity or clothing that cause constriction; 3) Wearing compression sleeves or bandages during exercise; 4) Maintaining hydration; 5) Avoiding extreme heat or overheating; 6) Exercising in a circuit that alters the type of exercise and body part within the exercise session.


Exercise and Compression Garments:
Lymphedema Remedial Exercise as a part of CDT requires compression garments or bandages.3‐5 There are no studies on the use of compression garments when performing stretching or flexibility exercise alone. The NLN Medical Advisory Committee (MAC) recommends using the guidelines for aerobic and resistance exercise to guide use of compression during flexibility exercise since flexibility exercises may be combined with other forms of exercise. The amount and type of compression for exercise should be decided with input from a professional knowledgeable about lymphedema. There is no strong evidence basis for the use of compression garments during exercise; however, most experts in the field of lymphedema advise the use of compression during vigorous exercise for people with a confirmed diagnosis of lymphedema. One study suggested that individuals with lymphedema who do resistance exercise without compression may increase swelling.20 Resistance exercise may reduce limb volume when used as an adjunct to compression therapy in people with confirmed lymphedema.8 One study showed that aerobic and weight‐lifting exercise was safely performed without compression in women at risk for breast cancer‐related lymphedema.9 That study showed patients who developed lymphedema could continue to exercise with compression garments. Compression garments should be measured by an individual trained and experienced in fitting compression garments for lymphedema and should be at least Class I compression for upper extremity. Higher classes may be required for more severe lymphedema and for lower extremity lymphedema. A hand piece (gauntlet or glove) is recommended when exercising with a sleeve to avoid causing or exacerbating hand swelling.


Definition of Individuals At Risk for Lymphedema:
Individuals at risk for lymphedema have not displayed signs and symptoms of lymphedema but may have sustained damage to their lymphatic systems through surgical lymph node removal or radiation therapy. Additionally, individuals at risk may have surgical incisions in the vicinity of lymph transport vessels. Individuals who have family members with hereditary lymphedema may also be at risk. An individual's risk of lymphedema may change over time depending on factors such as weight gain, age, and changes in medical condition.


It is the position of the NLN that:

Exercise is a part of a healthy lifestyle and is essential for effective lymphedema management

Before starting any exercise program, individuals should be cleared for the program of activity by their physician.

Lymphedema Exercises (also known as Remedial Exercises) are specific rhythmic muscle and breathing exercises used as a part of lymphedema treatment in Phase I and Phase II Complete Decongestive Therapy (see the NLN Position Paper on Diagnosis and Treatment). http://www.lymphnet.org/pdfDocs/nlntreatment.pdf In Phase II lymphedema maintenance, these exercises can be combined with or integrated into a regular exercise program.

After intensive treatment with CDT, the person with lymphedema should work with the certified lymphedema therapist or qualified lymphedema specialist provider (MD, NP) to adapt their remedial exercises into their fitness and weight management program at the time they are moving from Phase I (treatment phase) to Phase II (self management).

Individuals with or at risk for lymphedema can and should perform aerobic and resistance exercise in a safe manner.

The individual with or at risk for lymphedema may benefit from working with an Exercise Physiologist and/or Personal Trainer. The person with lymphedema should inquire if the trainer or exercise physiologist has experience working with lymphedema and other medical conditions. Certification for personal trainers varies. Patients who are unsure of about the qualifications of a community exercise practitioner should work with a certified lymphedema therapist or health care provider to assist them in finding a community exercise program or professional.

In general, individuals with a confirmed diagnosis of lymphedema should utilize compression garments or compression bandages during exercise.

Individuals at risk for lymphedema may or may not utilize compression garments during exercise; this is an individual decision to be made with guidance from a care provider and/or therapist based on risk, activity, and conditioning level.

Individuals at risk for lymphedema will benefit from most forms of exercise tailored to their individual needs.

Individuals at risk for or with a confirmed diagnosis of lymphedema should avoid repetitive overuse of the affected part. Sudden increase in an individual's usual exercise duration or intensity may trigger or worsen lymphedema. It is likely that a program of slowly progressive exercise for the affected body part will decrease the potential for common daily activities to result in overuse.

Exercise should be started gradually, increased cautiously, and stopped for pain, increased swelling, or discomfort.

The risks of exercise for the individual with or at risk for lymphedema must be balanced against the risks of deconditioning that undoubtedly results from not exercising. A deconditioned body part with or at risk for lymphedema can do progressively less without risk of overuse. As a result, exercise is recommended for those with and at risk for lymphedema.

The NLN cannot specifically determine the safety of exercise for any individual. The guidelines in this Position Paper provide general principles, but do not substitute for medical evaluation and recommendations from a health care professional. It is the responsibility of all individuals with or at risk for lymphedema to consult with their health care provider regarding their own specific needs.

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Comments

  • proudtospin
    proudtospin Member Posts: 5,972
    edited December 2011

    thanks, I have a meet with a new therapist tommorrow and this information will be helpful

    preventive action is important to me so that the lympho I have, does not increase

  • KS1
    KS1 Member Posts: 632
    edited December 2011
    What are "Lymphedema Remedial Exercises."  I've never been given any exercises by any of the LE therapists I have seen.  On my own, I bought the Lebed video.  When I mentioned it to a LE therapist, she said that, with respect to swelling reduction,  she didn't think there was anything special about theseor any other exercises. KS1
  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    KS1--there are the Norton exercises, which are similar to Lebed--Nitocris put up links to them, and they were once in an article and I copied them--when I started LE therapy, I was given a sheet with a different set of exercises--like "reach for the apple" "reach overhead and turn off the lightbulb" Here are Steve Norton's exercises--I'm sure he has more of them:

    0Table 5. Patient Guide to Full Spectrum of Remedial
    Upper-Extremity Exercises (Individually Tailored to the
    Severity of Lymphedema in the Affected Extremity)
    • CorrectPosture:Plant feet firmly on ground, straighten spine, and
    draw shoulders back.
    • AbdominalBreathing:Inhale through nose, allow abdomen to
    protrude outward, and exhale through mouth slowly.
    • ShoulderRotations:Smoothly draw shoulders up toward ears
    then pull them back, down, and forward in a continuous circular
    motion.
    • HeadTurns:Slowly and smoothly turn head from center to left, back
    to center, and center to right and back. Do not use force; turn gently.
    • NeckStretches:Slowly and smoothly draw chin toward chest, raise
    head, and look toward ceiling. Repeat gently.
    • ShoulderStretches:Bend elbows and raise parallel to ground, draw
    elbows back squeezing shoulder blades together, and reverse motion
    to allow bent arms to cross in front of chest. Repeat.
    • ShoulderShrugsWithBreathing:Inhale through nose while raising
    shoulders toward ears, follow by exhaling slowly through mouth and
    lowering shoulders.
    • IsometricChestPress:Clasp hands together in front of chest, raise
    bent arms parallel to ground, and push palms together. Hold,
    release, and repeat.
    • FistClenches:Place hands on thighs, clench fists slowly, fully open
    fists, and spread fingers apart before clenching again.
    • WristCircles:Begin with unaffected arm, rotate fist in small circles
    isolating movement to wrist only. Do the same with affected arm.
    • TurningOutstretchedArm:Start with unaffected arm, raise in front
    parallel to ground, rotate palm outward then inward. Rest then
    repeat on affected side.
    • BreastStroke:Place palms together, push hands forward extending
    arms, separate hands drawing elbows back, and repeat as if
    swimming.
    • ElbowCircles:Bend arms at elbow, draw small circles with point of
    elbows progressing into larger circles, and reverse direction
    spiraling down to small circles.
    • Breathing:Pause and repeat previous breathing sequence.
    • ReachtotheSky:Lift arms over head, alternately reach, and pull
    toward head.
    • PotStirring:Clasp hand in front of abdomen, separate legs
    moderately, slowly simulate a circular stirring motion, reverse
    direction.
    • IsometricChestPress:Previously described.
    • IsometricBicepCurl:With hands clasped, simulate a bicep curling
    motion while resisting with the other hand. Switch sides and repeat.
    Do not hold breath. (There is no actual movement.)
    • WristRotationsWithHandsInterlocked:Clasp hands with fingers
    interlocked in front of chest, rotate wrists in a circular motion, and
    reverse direction.
    • FingerDexterity1:Hands in prayer position, push matching fingers
    from side to side several times, move to next pair until all 5 pairs are
    worked; then in reverse order to starting point.
    • FingerDexterity2:Hands in prayer position, separate matching pairs
    of fingers away from each other, progress to next pair, then reverse
    sequence to starting point.

     

  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    The position paper is very encouraging!  I learned something recently that's worthy of thinking about, however. 

    The position paper includes body-weight resistance (such as push ups) in the description of resistance exercises that may be useful--within the context of other appropriate precautions that include adding resistance slowly and progressively, wearing compression if diagnosed with LE, etc.  But--it's not possible to know exactly how much weight we bear on the arms or on the trunk when using body weight (or even resistance bands) in our strength strength training, making it very difficult to know for sure that we are slowly, progressively adding weight and thus resistance. 

    I observed a PAL-protocol based workshop for LE therapists and personal trainers, and the facilitator stressed that for maximum compliance with the 'slowly progressive' safety factor in strength training, it's best to stick with measured weights, i.e. dumbbells or weight machines, to be certain of how much weight is being added each workout, and to be able to know how much to back off on weights after missing a workout. 

    Something to think about--I don't think this observation contradicts the NLN paper, simply adds an additional common-sense precautionary note to it. 

    Carol

  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    Carol--excellent point about push ups: I've seen a patient who was very low risk develop LE of the trunk when she did push ups, and I told her she was essentially bench pressing her body weight!

    That's also the reason that downward dog and cobra positions are risky.

    Very interesting about therabands as they are absolutely terrible for me: I get instant axillary webs whenever I try them: even at the lowest resistance.

    I need to re-read that paper.

    Carol--great information!!

    So, rather than stating: Resistance exercises may involve lifting body weight (such as push‐ups) or lifting objects (such as dumbbells, weight machines, etc). Resistance exercises can be performed without moving a joint (isometric) or by moving the joint through a range of motion (isotonic). All of these types of resistance exercise may be utilized by individuals with lymphedema, but should be done cautiously, starting with low weights, low repetitions, and gradual progression. 

    Nancy Hutchinson should have said: Resistance exercise can be utilized in lymphedema, but should be controlled--therefore use of free weights or calibrated machines--can be used cautiously, etc.

    Knowing the folks at the NLN, we'll get our heads bitten off if we inform them of this, but it's a very important point, and I remember the LE PT who saw the woman who developed the truncal LE getting so upset about the pushups.

    I'm actually a bit concerned about the lack of clarification after what you've told us, Carol, but I've fought enough LE battles this week to last me a long time, I'm still feeling upset about the impedimed debacle. And it's not over yet....I have to make a call to a major researcher to have the apparent conflict of interest "explained" to me 

    Kira 

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2011

    Okay, rolling on the floor here -- the NLN has this whole Medical Board that is supposed to vet this kind of thing, but apparently they're all asleep at the wheel, so Carol (patient, right?Laughing) comes up with an important missed point.

    Well, we've had our heads bitten off before and apparently we grow new ones, so I vote we let them know in a kind and gentle (and probably humble, since we want them to hear us) way.

    Because to all of us here, even one woman developing LE based on unsound advice (even if it comes from the NLN -- no, especially if it comes from the NLN) is one woman too many.

    Carol, THANK YOU for pointing that out!Smile

    Be well,
    Binney

  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    I believe that the caution regarding body weight and resistance bands may reside in the PAL Protocol. I can clarify that, and if so, might we ask Cathy Bryan, who blogs for bc.org and who teaches the PAL -based workshop I observed, to send a note to NLN? I will be happy to ask her about it.



    Carol

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2011

    Carol, that's great! Thank you from all of us (who don't want to be misled because we get so darn cranky when we swell!Frown)

    Hugs,
    Binney

  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    I will talk to Cathy and report back soon!



    Carol

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    Wishing Swell Sisters a happy and healthy New Year!



    Thanks for all of the support and good info these past few weeks.



    Hugs, Joy

  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    Update: On December 20,  I sent a very polite email to NLN asking them to review the bodyweight exercise recommendation, and so far no response. I copied that email to several of the PAL research team and have recently reached out to them for their help in pushing the question a bit harder.  If nothing comes of it by mid January, I'll follow up again with NLN by phone and see where that takes me.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited December 2011

    Carol, it is possible to "adjust" body weight for push-ups by using adjustable bars set higher for easy push-ups and lower for harder ones. This is how my trainer taught me to do push-ups.

  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    Heidihill, Pre-surgery, my trainer had me doing the same, so I certainly agree that adjusting bars adjusts weight/resistance. I have learned from one of the PAL researchers that the problem with any push up, however adjusted, is that it's very difficult to know where you are in your resistance, and even small form changes will alter the weight even if you don't move a bar.

    The PAL protocol has us both adding (and backing off, after LE symptoms or after missing workouts) measured weights.  The problem is in the measurement.  After successful, slowly progressive weightlifting using measured weights, without LE incident over a good window of time, the PAL trainer would indeed introduce push ups and other bodyweight resistance exercises to a BC survivor's program--but not at first.  Bodyweight resistance is such a common part of at-home strength programs, it just seems to me that there should at least be an explanation of its limitations in a slowly progressive-weight program.

    Carol

  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2011

    Carol, thank you! Yes, there should. Who'd a thunk it?Undecided What we don't know sure can hurt us!Surprised
    Binney

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    Carol, this is a great discussion. I have been fortunate to live in the area where the PAL study was conducted, and my LE therapist hooked me up with one of the trainers who participated in the PAL study. She came to my home and ran me through the home version of the PAL study, which uses hand held free weights. I purchased the PowerBloc free weights that can be adjusted in one pound increments.



    I'd like to point out that while I love the PAL routine, there were a couple of weight exercises that the trainer modified the positions for me, as I felt there was too much pressure on my arm or trunk. I ended up using the bands for my back because I actually had more control that way, and the particular bands I have and used were right for me. Those bands are definitely hard to determine tension, for sure, and one time when I adjusted my distance from the door or even a slight change in angle, sheesh! I had a flare. Same goes for when I thought I could move up to the other bands. All I know is I need to be in a specific position for the exercise to work and not cause a problem (I guess I can never move from this house!)



    I think all exercise programs must be adjusted to address each person's needs, especially when one already has LE. It is so frustrating that there is no out-of-the-box program that works for a everyone! I haven't tried the Norton exercises, but I have done the Lebed. When I first did the Lebed, I didn't have any issues, but once I started feeling comfortable with the program, I started to push it a little too much. I think this is such a natural response, especially when exercise feels good. I have to really watch that element of self control no matter what form of exercise I'm doing. Who doesn't want to do more when their body seems to be tolerating? Too much is only evident after the fact!

  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    Tina,  I think you have nailed the issue right on the head!  Everyone's LE response is different, so there's a crying need for AFFORDABLE access to trainers, ideally those who have had PAL or comparable training.  Sigh....   In a perfect world, since LE therapy is generally reimbursed by insurance, they should be able to supervise at least the beginnings of an appropriate strength training program.  When I brought one of the PAL research team to our little Michigan town, the workshop she put on was attended by both personal trainers and LE therapists.  The therapists were all PTs by training, so they all were quite knowledgeable about the exercises and proper form. They're not personal trainers, but still, they all seemed like they would be very valuable strength training supervision resources if a qualified personal trainer is not available.  Only the sad part is that they cannot charge for / be reimbursed for supervising an exercise program.

    These therapists jumped at the chance to participate in a PAL-based workshop, because they were interested in learning the protocol first hand, and because they find that continuing ed opportunities for LE therapists are a bit hard to come by without extensive travel.  So we had a very interested and willing group of therapists, but they are so limited in what they can actually do as far as ongoing follow-up with patients.

    Katie Schmitz wrote in the most recent NLN newsletter that UPenn is going to launch a PAL-based 4-week group exercise program that will require up-front certification by a LE therapist that participants are healthy enough to take part.  That's terrific, but she also notes the challenge of getting enough trainers qualified to use the protocol, and the difficulty of getting LE therapists paid to lead the sessions.  But I take great heart in the very idea that someone is working on expanding accessibility of safe strength training.  The vision of bringing better exercise coaching to 2.6 million BC survivors is a wonderful goal as we enter 2012.  My bet is that it's a long process.

    I love that you have a trainer in whom you can have confidence that modified lifts and using the bands can advance you safely thorugh your strength program!  I'm waiting for a sleeve and gauntlet to come in, for flying and for weight lifting, and expect to start lifting in a few weeks.

    (And I had my bike modified this week to put me upright over the handle bars...but that's a follow-up for a different exercise thread we were chatting in!)

    Tina, I'm LIFTING a flute of champagne to you and your fitness goals tonight!  Happy New Year!

    Carol

  • Heidihill
    Heidihill Member Posts: 5,476
    edited January 2012

    I absolutely agree that an exercise program has to be personalized and am also very glad to see that progressive strength training is now seen as part of prevention efforts. I've been lifting more than 3 years now and it's been well worth it. happy new year!

  • Lunakin
    Lunakin Member Posts: 120
    edited January 2012

    Cautions can't be emphasized enough!  One of the factors responsible for my trunkal LE was probably being told by a PT to do strenuous push-ups with not a word about compression garments. I recall thinking I should stop since I had no compression, and then feeling I was being silly since the PT clearly wasn't worried. Hah, she wasn't the one who would get LE.

    I'll never worry about feeling silly again in such a situation.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Carol, I was invited to do the group program when I met with my LE doctor in late August. We talked about the fact that I had already worked with the PAL study trainer individually, but decided it might be helpful since that was before I deconstructed. The four sessions would be billed as PT/LE sessions and count as part of my annual allotment. Unfortunately, because of my pre and post surgery MLD, I had already gone over my allotment for the year. She suggested I enroll in January, which I am tempted to do, but I worry about needing my sessions for MLD, etc. I think they they were going to include a set of the PowerBloc weights as part of the program. My dear friend's insurance doesn't allow for any further LE treatment (she won't fight it, and I am not forcing the issue) but I thought since I have the weights that I could give them to her. However, without proper guidance, I'm not sure I feel right about giving her a copy of the protocol and the weights. If there was some way she could come and observe, it would be great. It's just so unfair that she doesn't have access to this because of her insurance. I told my friend that we would hire the trainer to show her the program and how to properly use the weights.



    When my LE doctor was describing the group program, she explained they were trying to figure out how to take the info they had gathered from the study and get it out to the public in a responsible way. When you think about how the media totally made a mess of reporting on the results of the PAL study, you really can't blame them. So, it would seem at this point that patients need insurance to take the group class, and trainers need to be PT's that can bill for LE treatment. Do I understand that right? That's how it was being offered to me. I suppose with my surgery, last year was extraordinary as far as needing treatment, but I really don't like the idea of "wasting" what my insurance provides for an exercise program. As much as I would like to take the group program, I might as well have the one-on-one time in my home. My friend can purchase the weights and then come do it with me. That way it's safe and she has access. I think with all the appeal crap I am dealing with, I would do better to take advantage of my ability to get the training without involving my insurance. My trainer has the protocol for the home version as well, which is what we used in my house, but she is willing to go with me to my gym once I am stronger. I will play the cancer and lymphedema cards to scare off the regular gym trainers so they can't argue about her training me!




    Carol, congrats on modifying your bike! That's terrific! And I am so excited that once you get your sleeve and gauntlet that you will be starting a weight lifting program. I love your tenacity and motivation to bring the PAL program to your town and help give your trainer and others in the area a chance to get training in how to use the program and work with other women.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Lunakin, you should have seen the exercises my first PT/LE therapist had me doing AFTER she had diagnosed me with LE (which may have been caused by the type of exercises she had me doing). Here's one . . She had me positioning my stomach over a big ball and then "walk out" with the weight on my hands until the ball was below my shins, torso straight, and then in reverse. My torso and arms were taking the weight of my body plus balancing my torso to keep me from sliding off to the side of the ball. Good gravy! Hey, I was psyched! Look at me! I am recovering! NOT! Idiot therapist was replaced not long after that once I learned about LANA training and need for MLD. A little too late, unfortunately.

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2012

    Tina, I was under the care of an LE PT when I developed AWS three weeks post op and rather than minimize the stretch on my axilla, she had me doing all sorts of repetative motion and I was a total set up for the LE....She was replaced as well. She had been employed at the hospital LE clinic, left in a snit, worked for a urogynocologist and I frantically found her on the APTA site when I developed tons of cords over a weekend.

    There were a few crucial misteps during a critical time, and quite likely, I still would have developed LE, but being in the care of an ill-informed BS, and PT leaves me wondering....

    And, one the last times Katie Schmitz and I exchanged emails--she had me scope out the Livestrong program in my state as she wasn't happy with it, and I told her that the "Strength and Courage" DVD she likes, from Magee in Pittsburgh, has women doing wall push ups and says only to worry about LE if you had ALND and any swelling that lasts over 2 weeks after weight lifting should be reported.....

    She's having a really hard time getting her protocol out there. And what other exercise program involves insurance??? She wasn't happy with the YMCA's.

    Kira

  • carol57
    carol57 Member Posts: 3,567
    edited January 2012

    Tina, The workshop I brought to w. Michigan is called PALS for Life, and you can find info about it at www.cancersurvivorfitness.com.  This program is a one-day workshop for certified personal trainers and lympehedema therapists. The trainers need to have one of the personal training certifications so that it is clear they understand exercise physiology and can be very effective in supervising weight training form, but they do not need to also be physical therapists. 

    The woman who owns PALS for Life was the lead personal trainer in the PAL Trial, so she supervised all of the trainers who were working with the trial subjects at the Ys spread around Philadelphia. She uses --with permission-- the PAL Protocol as the basis of her workshop, and at the end of the day, the trainers have all that they need, including progress monitoring logs, visuals of the exercises, etc. to work with breast cancer survivors for a 12-week, 2.x week program. As you noted the PAL Protocol includes both in-gym and at-home exercise sequences, and the trainers attending this workshop walk away with both. 

    UPenn will send the PAL Protocol document to certified personal trainers who ask for it, so a very knowledgeable trainer who takes the program seriously can work with a BC survivor on strength training that conforms to the protocol.  What I liked about the workshop is that it was chock full of the 'why'-- why certain exercises are included and others excluded; why a particular form element for an exercise needs to be especially exact;  background on LE and its causes and risks, and the what and why of compression and MLD. As one who teaches adults via financial seminars, I know for sure that most learners get more out of information and develop stronger skills when they learn by doing and when the 'why' is delivered in tandem with the what and the how.  The PALS for Life workshop includes both classroom and in-gym demonstrations and practice, so the participants got all three: why, what, how. 

    We had some very experienced personal trainers in our workshop, including a woman with a masters in exercise physiology.  Every one of them said afterward that beforehand, they had no idea about LE and its risks, and that what they learned really opened their eyes on the need for following the PAL Protocol with BC survivors.

    Cathy Bryan--owner of PALS for Life--explained that given the billing/insurance reimbursement problems for LE therapists to supervise their patients' exercise, the best outcome is to have some PAL-trained certified personal trainers who have collegial relationships with LE therapists. Two of our participating LE therapists are in hospital settings where there are affiliated fitness facilities, and one of the participating personal trainers came from one of these fitness clubs. The idea is that the CLT does baseline arm measures and gives an LE patient a green light to begin a PAL-compliant training program, and the patient checks in periodically with the therapist to report progress. Of course, if there is a flareup that the patient cannot manage through normal MLD and garment/wrapping means, there would be a consultation with the therapist, and the personal trainer and therapist should have a phone conversation to agree on a resting interval, backing off of weights, etc. For this to work, obviously the CLT needs to know what's going on in the gym and know exactly what the PAL Protocol guidelines are.   That's why Cathy asked me to recruit CLTs for the workshop as well as personal trainers, so that we could begin to build a community of CLT/personal trainer colleagues to work together like this.

    So...if we are lucky enough to have a way to get our personal trainers trained in PAL --which Tina, you have by virtue of living where the trial took place, and I was able to do with just a little effort to bring PALS for Life here for a day--then there should be minimal need to use up insurance-covered therapy visits for strength training supervision.  As Kira said, getting the PAL training out to a meaningful number of personal trainers around the country is a daunting task.

    My CLT and another who attended our workshop are combing through patient files and will call women in the next month or so to see who might be interested in attending a free 12-week PAL session at my gym, which I think we'll schedule for the spring. The CLT/personal trainer who work together in a hospital sytem are working on scheduling a 12-week session in their town, about an hour from me.

    Meanwhile, this morning I had my first training session with my own trainer--only I won't have my sleeve and gauntlet for another few weeks, so we kept it to lower body, core, balance and flexibility. This was my first formal strength workout since my July surgery, and it felt great! And, both Todd (trainer) and I were struck by the number of adjustments we needed to make to our formerly take-for-granted exercise elements, such as no planks for core work, to avoid bodyweight on the arm.

    Sorry about the length I've written here, and I know it sounds like I'm promoting PALS for Life, but honestly, it's a great way to get some trainers trained.  Tina, maybe you can organize a group session to be led by your at-home PAL trainer.  If she/he trains at a gym, perhaps something could be worked out to gather a good group of BC survivors.  I'll bet your therapist could identify several women who would like to have such supervised strength training but whose insurance issues are like yours and your friend's.  Group training rates are often quite reasonable, and it's even possible that for such a special program, the hosting gym might not need to have everyone purchase a gym membership.

    This morning we have ten inches of snow on the ground here and more to come, all day and night. The driveway gets plowed, but now I have to think hard about how to modify my shoveling technique for the walkway from drive to house, to protect my affected arm!  (DH works 3 hours away M-Th, so it's me vs. walkway...)

    Carol

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2012

    Carol, besides modifying your technique, think about taking frequent breaks instead of doing the job all at once. (Of course some of those could be hot cocoa breaks...Laughing). Stopping is hard. We want to get out there and get the job done. Can't do that without paying close attention to our bodies anymore.

    One thing to watch out for is cold fingers -- no extremes of temperatures for LE. Remember how, when we were kids and had snowball fights our fingers would get red-cold, and then when we went inside to warm up they tingled and swelled? We don't want that swelling to happen with our compromised lymph systems. <sigh!>Tongue out

    (Easy for me to say -- I live in the desert!Embarassed)

    Stay cozy!
    Binney

  • carol57
    carol57 Member Posts: 3,567
    edited January 2012

    Binney, thanks!  I will take your advice seriously.  What's your opinion on the kind of hand-warmers that you can put in your mittens--the kind that heat up once exposed to air?  I don't suppose I'd want that right at the skin, but I could wear a thin glove inside the mitten, so the warmer is between the two.  I don't think that's necessary today, as it's in the 20s and I think my  mittens will be fine insulation, especially if I'm moving.  But when the temp really plummets, would you imagine that concentrated, supplementary heat would do more harm than good?

    Carol

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited January 2012

    carol57   Thanks for your info about PALS for Life.  I am a certified pilates instructor and 12 year avid practitioner.  Three years ago, before my diagnosis, I took a certification course to teach post-surgery breast cancer thrivers.  This course was good but did little to explain the precautions and protocol necessary in working with lympedema. This information is so important to breast cancer patients.  Proper exercise makes an incredible difference in the quality of life available to women (and men) before, during, and after surgery and treatment.   I intend to check out this course and think about certification.  It would be great to be able to offer trainer-based LE exercises, in coordination with a PT or LE therapist.  In the past, I've worked with PT's and followed up with clients with post-surgery issues.  I have yet to be able to have my trainer services accepted by insurance, though.      About the snow shoveling - is there a willing neighborhood teen that might do the job for you?   :)

    Tina   How mortifiying that some PT and LE therapists actually make the LE situation worse - like planking on a Swiss ball?!?   I can't imagine!!

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2012

    Carol, I don't know about in the mitten, but you could give it a try as long as you stay aware of how hot it's getting. Or maybe you could keep the warmers in your pockets, and when you take breaks warm your hands in there. (That might also remind you to take breaks!Laughing

    Hopefully others with expertise on extreme cold-weather hand protection will jump in here. All mittens are not created equal!

    Let us know what you discover!
    Binney

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Carol, when you talk about the PAL program with me, you're preaching to the choir! LOL! When I contacted my trainer, it was through her personal number. She explained she did home visits for X amount, but I could also train with her at the YCMA where she had been part of the PAL study - had to get a membership, pay a monthly fee, and then pay extra for trainer appts on top of all that! That's crazy and just wrong for them to charge a cancer survivor with LE those kind of rates so they can learn how exercise safely! Naturally, I decided to have her come to my house. She was excited when she learned I had purchased the PowerBloc weights. She suggested I keep my membership to PF so I have access to aerobic equipment. In the past I belonged to much nicer gyms, back when trainers supervised people working out as part of their job. Now all the "good" (and expensive) gyms in my area are totally hands off and you have to pay for a trainer to help you do anything. I understood the basics of good form and movement and finally bailed on the expensive gyms. Since my trainer will eventually help me incorporate some of the machines when my legs are stronger, PF is just fine. I would rather pay for occasional workouts with my trainer as needed than a huge monthly rate.



    Speaking of modifications to exercises, yes, the planks were ones that we avoided. We did talk about modifying those types of exercises so I may eventually work up to doing. My reconstruction was awful when it came to using chest muscles, and I am hoping that with the implants gone and muscles repaired that I will be able to (slowly) do more.



    I agree that it's best to avoid using my insurance for workouts. I might as well have one-on-one attention anyway, especially since it can be at home or in the gym. I have to admit I love that I can do a full body workout with weights in my own home. After all those years of mostly using weight machines, I am a free weight convert now that I understand how they also work the stabilizer muscles in addition to the specific muscle being exercised. Most likely, I will probably only use the machines for my legs at some point.

  • carol57
    carol57 Member Posts: 3,567
    edited January 2012

    Tina,  One advantage of living in my part of the hinterlands is that the cost of personal training is a real bargain.  My trainer --certified and now having taken the PAL workshop--charges me $15 for a one-hour session, and he has such a big heart for my needs now and before (we worked together for 11 weeks prior to bmx/diep to get me ready), we are commonly working out for 90 minutes. Before surgery, I was and now plan to continue working with him three times a week. I am so aware that I pay for three long sessions what big-city trainers charge for 1 session of 45 minutes.  If I had to pay city rates (and I used to live in a big city and had to pay $50/hour, and that was ten years ago), I would be coming up with strategies just like you are. Good thing you're so creative!

    Then again, you're in a vibrant metro area, where I travel for work somewhat often, and where my salivary glands flow and my eyes pop from the amazing restaurant diversity, art, culture...whereas here, for excitement, I look out the window to watch the deer swim.  Life's trade-offs!

    Carol

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Carol, I just sent you a PM.

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2012

    Tina, I looked up PowerBlock weights, and they are pricey! And the lowest weight is either 2.5 or 3 lb.

    Kira 

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