Kicking LEs butt!! Exercise & Self Care Log
Comments
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Dawn~great idea!!!
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It's more effective for me than self-mld, which is too easy to rush or to apply too much pressure.
Wow!
That's great,Binney.Yes, I know what the theory is , but I must say that have not felt those effects. I wonder if perhaps I gave up on it too soon.
Maybe I'll pull the DVD out again. I ( we of course) have a limited amt. of time to devote to all this, and I just didnt see any benefit so I put that one on the back burner.
Just might be worth another try.
THX
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Purple, Lebed only augments LE self-care, and likely works better for some than others. But keeping up with it seems to be part of the benefit, so do give it a longer try if you find the time.
Directed exercise, excellent skin care, self-mld and compression (wrapping and garments) are all part of the basics.
Everything else--pumps, rebounders, skin brushing, Nordic walking, Lebed and, yes, even cork-tossing
--are just add-ons that appear to present little risk when done carefully and are helpful for some.Let us know what you think if you give it a go!
Binney0 -
Maybe an update on a project mentioned a month or so ago will add to our recent conversation here. Remember when I posted about writing a what-we-want-our-trainers-to-know handout, to be put on the stepup-speakout website, for download? Well, I had some wonderful people here raise their hands to help out, including some great posts on suggestions for fitness instructors, and one of our members here is a Pilates instructor, and she wrote a great section on that.
In addition, the wonderful doctor and LE researcher Dr. Andrea Cheville has reviewed what's currently in the document, because she did some Pilates/LE research and we wanted to see if she would weigh in and endorse our suggestions. She's a great supporter of exercise when done intelligently--which is what Purple is working toward, too.
I'm about on draft #4, with a yoga section yet to come. I hope it will be finished by the end of February, and then it will be on the Su-So site soon after. So, Purple--I wish I had this ready now, but it should not be too long from now. It explains LE and its causes and then suggests precautions by different exercise type. Everything is related back to the research available, which is most available for weight lifting, but from which we can extend common sense guidelines to other types of exercise.
The idea is for women with breast cancer related LE, and those not diagnosed but at risk for BCRL, to download and print the handout, and to give it to our trainers and exercise, Pilates, yoga etc. instructors. It sounds like a few LiveStrong trainers would be great candidates for someone handing this over to them!
Oh, and today: 5.5 miles of spectacular outdoor walking, with a stroller loaded with two little ones, but one of my best friends came drove several hours to spend the day with me in my grandma role, and SHE pushed the stroller! And I hereby commit to doing Lebed before bed!
Carol
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Sad night, unrelated to LE but my brother lost his long battle with Hodgkins last night. He had found a match for a stem cell donation which was scheduled but he was too weak and passed without the ultimate treatment.
not sure my feelings now as he became angry years ago when I said I was not likely a donor
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Purple, Lebed only augments LE self-care,
Yes, I do realize Binney. I will try to squeeze it in again. Maybe I did not persevere enough. Thanks.
Carol,How exciting!
Yoga and qigong are two of the things I have been looking into. I used to do Pilates myself ( Denise Austin style and a class at a college nearby ) so this is very exciting indeed. Thanks for keeping me in mind. I will appreciate the sharing of your info when you have it complete.In the meantime, I do plan to type up a doc for the LIVESTRONG folks that includes all of the basic precautiions we all know about ( avoiding repetetive arm movements, jumping into an exercise program, cautions about resistance bands, possibly being evaluated for the use of a sleeve and hand protection, starting outvery slow and building only gradually, drinking lots of water, not exercising in hot, steamy rooms, use of modifications, care taken on things like plank moves or chest presses, LISTENING ... and also I plan to type a page of LE symptoms to watch for . I will take any and all of your suggestions with me. I received an email today saying we will meet next week on a lunch break, buit we have not selected the day yet.
I will also suggest to them that if they see or if a client sees any LE symptoms, they consider discontinuing the program ( w/out compression) and seeking advice from an LE therapist before they can re-enter. I really believe these guidelines may help some women and are pretty common sense to those of us with LE - dont have to have a medical degree to suggest these things.
proud
I am SO sorry about your loss. Life can be so painful!
I hope you will not make it harder on yourself with regrets that cannot be undone. We do the best we can at any given time, and we live with the choices. That is all any one of us can do. We all have our own set of problems.Your brother is at peace now- I hope you can be too.
Please take care of yourself.
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Proud, I'm so sorry. Keeping you close in my thoughts tonight and in the difficult days just ahead. Peace and Light!
Binney0 -
RE: Lebeds - I find it hard to do also, and all I do now is the opening, I over did when I tried to do more and caused more bad than good. But like Binney, I think that Lebeds works better for me than MLD, and I noticed this week when I went back to Lebeds daily (well three days in a row now), my swelling is actually down much more than it was with MLD for a week and a half. It also makes me feel energized to do it, and like I said, that's only the opening. I'm hoping to work in to the other routines soon, or at least the opening and one routine each day. I love the idea of playing my own music - thanks.
Carol - that sounds often(edited I think I meant awesome!), be sure to let us know when it's posted.
Proud - I just checked and if you've had cancer, except in situ, you can't donate anyway. So sorry for your loss, may he rest in peace, and may you find peace also.
I'm so glad you are all here, I find it so helpful to come to these forums and see others that are going through the same thing, share suggestions, successes and failures - it's all so helpful.
God Bless you guys,
Linda
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Sorry I haven't caught up on the posts,will do tomorrow
Just reporting that I have done some rock solid exercising here. Walking, stretching and rebounding, lebeds opening and tai chi breathing and I learned how to do my own MLD at my last LE session. I hope I can keep up this schedule. I am sure not getting house work done.
I guess it is all about me this week. eeks the dust is mounting up.0 -
, I think that Lebeds works better for me than MLD, and I noticed this week when I went back to Lebeds daily (well three days in a row now), my swelling is actually down much more than it was with MLD...
Wow, Linda - that is very encouraging!
thxHugz
let the dustbunnies multiply- that's what bunnies like to do most!
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Linda, yeah, I did my checking on if I were able to donate, asked all 3 of my docs who looked at me dumb founded that I would ask and said no.
A gym pal of mine was a donor to his brother long ago and his comment was that my brother's family had not done their due diligence in researching the proceedure.
A good thing has come out of this, my sister has opened up to me again as she had her own problems and was not taking my calls. God works in mysterious ways at times.
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What good news, Proud--and so much more welcome when it comes like this in the middle of a loss. Mysterious indeed!
Gentle hugs,
Binney0 -
That is good news Proud!
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my sister was having problems with stuff and I always felt that she would not get better unless she could talk to me
wahoo, and she is planning on doing the Avon walk in Boston!
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So sorry for your loss proud. Take care of yourself.
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Hi everyone,
I have been lurking, but not posting much, which is generally my MO:) I was on another board and we were discussing the issue that many of you raised about tailoring treatments/rehab to our stated needs rather than what others think we need. It prompted this response from me:
One of my PT friends interviewed me about my experiences because she is hoping to put something together for health care professionals to get them to consider that women have active, dynamic lives and people treating us should assume we want to resume them after treatment. This is a very early rough cut she worked on a while back, and I felt like sharing it even though there are some things that might be insensitive because they are strictly from my viewpoint. One thing that you can see in the film (in addition to my ridiculous glasses!) is that my back is full of fluid (truncal swelling) in the beginning, but in the next couple of months it is all gone due to the paddling. Almost none of that is related to weight loss. Also, now, many months later, paddling is the way I keep my LE at bay, if I am relatively inactive (like over the holidays) I can feel it start to return a bit. As you can see, I am flat and thankfully so, because when I asked the PS what would happen when I flexed to take a stroke, she said that my expander would likely jump a bit. Anyway, I am now (one year later) competing full force and it has really helped me emotionally as well as helping to control the LE (which developed during chemo). Thought I would share since you have all shared pics, videos, etc., and I appreciate what you have shared.
http://www.youtube.com/watch?v=RD69ufUqq7USome of the women on that board thought I should share it here, although I was somewhat reluctant because my case was very mild and that is how I had so much success...I don't want to seem as though I am somehow minimizing how much effort it takes to try to control LE or giving advice about lymphedema in general because it is so individual (as you have mentioned). Really, for me it was more about how when you meet a professional who listens and tailors things to your needs how wonderful it is and it makes you much more hopeful about recovery...BTW, the PT I talk about in the video was someone Binney told me about...I am very thankful! Best, Anne
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Thanks for sharing on this boardd Anne, I love your video, and appreciate your words..
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Anne, THANK YOU for sharing that fabulous video! Your PT friend is spot on about our need to chart a recover/rehab path that leads right back to our active selves. Your story is quite an inspiration!
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Anne, you're beautiful!
Wonderful story, great job of narration--thanks so much for the inspiration!
Binney0 -
Anne - wow! I'm 42 now and so much of your story resonated with me. Thank you for sharing your story. So inspiring, so encouraging. Thank you. I want to live not just survive. Love.
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me again as she had her own problems and was not taking my calls...
What a happy ending for the two of you!
Anne
Thx so much for sharing your imspirational story- I am sure it gives us all hope!
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Thanks Anne, for sharing your video! Very inspiring!
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Well, I am trying the Lebed again.
Did brief MLD and 5 mins rebound before work. After work, did 25 min ' fast walk' followed by Lebed opening and 5 mins rebound. ( Probably should have done Lebed first)
Later, I will have a long session of MLD. I go to the LE'ist on MON.EDIT: I keep meaning to ask- do many of you elevate your arm on a regiular basis ? I always forget it. Is that a part of your routine you do not skip or do most consider it unimportant ?
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I elevate my arm when I can, my LE-T recommended it, so when I can, I do.
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BUTTT kicked LE into a manageable corner today. GO GIRLS!
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Four miles walking at an easy pace today, not pushing a stroller. Need to do Lebed yet.
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Took it easy today, just some gardening and 15mins of rebounding. But I ordered the Lebed DVD you all are talking about.
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Did MLD, Lebed, walked, wore sleeve/glove, elevated - went to bed with way less swelling - woke up this morning to sausage fingers and my hand looks like someone blew it up like a balloon - what the heck - I guess I should have worn my jovipak last night - I guess I'll start over today - at least the sun is shining and it's supposed to warm up
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Linda, I woke up with some hand swelling too, bummer, huh? Not so much my fingers, but a thickness in my hand. What did you sleep in last night?
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I didn't use anything on my arm when I slept - I was feeling so good about the progress that I decided I didn't need to wear the JoviPak sleeve - Maybe there was an air pressure change, is that wishful thinking?
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