Kicking LEs butt!! Exercise & Self Care Log
Comments
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RE: Purple - HTH do you ladies afford to ' medically retire "?! :>)
I can't afford it, luckily my company had LTD which covered me until last October, when I was granted SSDI, and lost the balance of the LTD, I'm still appealling their decision. I have been left with many dibilitating side effects from the treatments, that I'm unable to work do to pain issues, fatigue that really hasn't improved since about 3 months post radiation, as well as PMPS, the list goes on and on. So I haven't much of a choice at this point - but thanks for asking!
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When I was doing the dry brushing I basically did the same routine that my LE T gave me for MLD, followed that pattern/sequence and added my legs.
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I see, Linda.
Sorry, I did not realize you were on SSDI.Yes as for the stroller pushing, I have noticed if I have aFULL grocery cart, my arm does start to bother me . sigh.Maybe it is time for me to start building strength.
Thx Victoria for all the detalls- I will ask my LEist more next Monday.
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Ummm, I was looking around for dry brushing and came across this.
How many things is this person doing wrong?
http://eclectichealingguidenews.blogspot.com/2012/03/my-journey-with-lymphedema.html
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Purple, I really don't have a choice, at this point I still can't work because of all the SE's, so SSDI, and hopefully, LTD, are perks. Because we can't really afford for me not to work either, but you do what you have to do.
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MLD, walked for an hour, wore compression sleeve all day, did Lebed and am now headed to our local support group - great day!
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but you do what you have to do.
Don't I know it, Linda - all too well!
Have a great day.0 -
HELP WANTED!
Ok ladies, I (we?) have an opportunity here and would love your help. I have managed a meeting next week with two area YMCA LIVESTRONG directors. In case you are not familiar- many YMCAs offer the wonderful service of giving any cancer pt. totally free access to YMCA instructors and gyms for 12 weeks. It is very generous of them. You can probably google LIVESTRONG YMCA Cancer program to see if your local Y participates.
Having said that, there has bene some concerns about the YMCA instructors simply having BC pts exercise " like the others" - meaning, lifting weights , using armbands, etc etc etc ...Of course , I have my own ideas , and I will share them- that is my whole purpose in the meeting, but I would love to have some of you guide me with what is MOST important to get across to these trainers. Resident experts and exercise gurus...there is no chance of liability here so please chime in. I am the one who will have the face time, and would like to think we might ' save' some BC sisters from getting to where we are .
These two directors at the Y were kind enough to listen to my concerns about LE risk ( neither one ever heard of LE!
) and agreed to meet with me so I can explain exactly what I mean.As I said, I can offer up my own ' stuff' but 2 heads are better than one...multiply that by many, and I am hoping that some of these LIVESTRONG programs, who aim only to do good, might just accomplish their mission.
Suggestions ?
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Nibbana, No kidding...that site is loaded with misinformation, but it has enough good information that the unaware/susceptible might well fall for the pseudo-science the blog writer passes off as being real. Shudder, shudder.
Purple, tell the Livestrong trainers about http://cancersurvivorfitness.com/ . The website is owned by the lead personal trainer on the PAL Trial team, and she takes a one-day workshop, for personal trainers, on the road. The workshop teaches what trainers need to know to apply the PAL protocol in their individual and group training programs. My local gym hosted this workshop, and one of our area Ys sent their program director, and afterward she revised their program for cancer survivors (not a Livestrong program, but similar). There is a fee for the workshop, but local sponsors might help out with the expenses.
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Carol - thanks for that website info - just checked it out and looks like it just might be of help for me.
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Carol
Thanks for the link. I checked it out but I personally spoke with the person on that website ( just a few weeks ago) and she told me they are not happy with the YMCA ( for not following the pal protocol) and therefore, they refuse to work with them!
Any other suggestions ?
Anybody ?thx
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Purple, want me to pm you the email address of the current lead investigator of the pal study? I have my last visit with him for the study on the 21st. I am not sure if he can help you or not, but you could give him a try.
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I checked out the Livestrong program at the local Y, I was not impressed
leader was a little ...disinterested, not sure she knew anything about LE really But already had a membership in a reg gym and they were very helpful regarding a LE trainer for me. He has helped me a lot and has me on the right track on my exercise now, I was overdoing the weights and he....slapped me down!
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Proud to spin - hope you don't mean that literally
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Purple, I'm sorry you got that response. Seems to me that if the trainers at a Y want to take steps to learn about LE and the PAL protocol, one should work with them!
Back to exercise reporting: lots more stroller pushing for me yesterday and today. I've had no trouble getting 5 miles in during the day, and today I also did my home weight lifting routine, so all set on exercise. I've been wearing my compression sleeve all day this week (normally just during exercise, repetitive, and stress activity, and flying), because lifting babies wears on the old arm! My hat is off to anyone who is managing LE with kids (of any age, actually) at home. There's a lot more carrying, lifting, pushing, etc. that I remember. My nest has been empty for a long time, and the grandkids are pretty young, so this is all new again.
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Carol, what fun! Grandkids really are an eye-opener. You think, how on earth did I ever do all that?!!
I'm still corking along. I actually like the reinforcement of being able to pile something up and see it mount. Otherwise I have trouble visualizing how the effort of exercise is helping and get tired of it. Jogging is fairly mindless, so I can think about other things while I'm doing it (or even talk on the phone, as Kira can tell you, since I was puffing a bit during our last call
), and since I'm doing this in the house lots of things get picked up and put away as I jog by, that I'd otherwise not get around to. Also, one of our dogs loves jogging along with me, so he gets some exercise too (this is not convenient, especially in the narrow hallway where he tends to run me into the wall. Ah, well!) So, crazy as it is, I think I've found my aerobic exercise niche, and I'm grateful to all of you for inspiring me.
Onward!
Binney0 -
I was trying to explain your exercise routine to my daughter when we were on our walk the other day, Binney. I thought it would be an interesting idea for those days where the weather is too bad - she looked at me kind of funny
But I love your idea, I need to go back and read the more complete version that you posted a week or two ago. Keep on corking 
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Binney - I love it! I can totally visualize the crashing into the wall.
My house is way too small to get much exercise in but I may start trying laps around my house just to simply pick everything up. 
Love it, Binney! xo0 -
Purple - A couple of things that come to mind re the trainers:
1. Remember that we all are unique and our Lymphedema manifests in different ways and they need to LISTEN to us. We are scared for a reason ... 'a little swelling' may not be a big deal to them but it is huge to us and we want to exercise to reduce swelling not make it worse ... so LISTEN to us!
2. Be flexible and willing to work with us. Again, I think it goes back that we are all different ... we are all individuals and they may have to get creative ... it's not a one form fits all kind of thing. I told a trainer I've worked over the last couple of years that I missed doing ab planks and she figured out a way that I could do them (in a modified way) with a ball. Be flexible, be creative, be innovative.
Keep us posted on how it goes. Such a blessing you have their ear.
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I'm still not feeling really well. I'm back among the living but fatigued. Today was my first day back with my trainer and it went well. He went easy on me ... on my arms anyway.
Worked me hard on balance and abs. I've had my eye on a rebounder. I'm totally going to get one when I can afford it.
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checked out the Livestrong program at the local Y, I was not impressed
leader was a little ...disinterested, not sure she knew anything about LE really....
Yes, This is *precisely* why I am optimistic about meeting with them. It;'s great in theory, but we need certain precautions in place, and they are willing to listen.
Kay
PM me anytime at all .thanks.
Carol
Thank you. I agree. I think this is a perfect example of a situation where if you actually HAVE the condition/ disease/illness ... you give more- become a bit tenacious perhaps
Anyhow, I am still looking for those ' personal' suggesitions, cautions etc ... otherwise it will be limited to my own list, and I'm sure you ladies will want to contribute .
Thanks!
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Dawne
Thx so much for your ideas. The modifications are are good point. And yes, a little swelling is a BIG BIG deal to us - you are so right !
Not sure if you want to get a cheapie rebounder like I did ( buyer beware) but they have one on sale at Kmart this week . It's under $30.
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Haven't posted for awhile but have been keeping up with all we have to do to keep LE under control. I worked full time during treatment and the first three months of LE but was fortunate to be able to go to part time as I was already retired from the federal government. But I did keep up and probably managed my time better when working full time.
Just finished an hour of cardio on treadmill, MLD exercises, and MLD. Now off to work.
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Hmmmm, Becky, interesting observation about time management and working. Whenever I have a delicious stretch of time to get things done I seem to accomplish less--and feel more scattered--than when the schedule's tight and demanding.
But, hey! I still love those delicious stretches of time!I'd fallen off the Lebed wagon, but I'm back on and, as always, it helps considerably. Why do I fight it when I feel so much better when I do it regularly?!!
I wish there was a DVD of JUST the opening section exercises, but half a dozen different settings with a variety of leaders and music, so you could have a different one every day of the week. Maybe no chatter on the rest of them and we could just follow along without all the comments. I do get tired of the same old same old.Linda, too funny! Yep, jogging around the house with my arms full of freshly folded laundry to put away, nabbing corks along the way, is pathetic!
Wish I could have seen your daughter's face! But you have to admit, acquiring a collection of wine bottle corks isn't all bad.Hugs all around,
Binney0 -
No Linda, not literally! He did sort of frown at me and tell me I should have paid attention to all the stuff I had read about doing l read about starting with light weights. He sort of laughed at me but has been a huge help and so sorry that he is going back to grad school after this weekend. sigh, he promised to leave instructions with another trainer.
He is setting up a cancer training program at the cancer institute of NJ so I feel fortunate to have had his time now.
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Proud, he's fortunate to have had you to work with too--learning about LE and how to handle it is never a one-way street, and your awareness and efforts to make it work really make it easier for the next Sistah who comes along.
Hugs,
Binney0 -
It's great when we find docs, pt's, ot's that listen and work with us, adapt the program to fit our needs rather than - follow the book!!!!! I wish that my cancer center had a rehab program - seems like sometimes we need to fight our way to knowledge and help. I feel so bad for those women that just go along with what their doctor says, it's amazing to me that the doctors and therapists that work in this field are so ignorant about things that their treatments cause or effect? Just a short 2 week course or less on LE - actually just one intro meeting with my LE -T would give them a ton more info than they seem to have - oooppps! - should this have been on the rant website!
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but I'm back on and, as always, it helps considerably.
Binney
I wish I could feel some true impact from it. Can you tell me what you mean? I mean- how does it help you ? Is it with ROM, with actual reduction of swelling or with energy or ????
Thanks!
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Hi, Purple,
Doing the Lebed opening section daily reduces the pain from my truncal LE. It's not ROM, because I do lots of other things throughout the day that keep me active and stretching. It's the order, pace and precision of that routine that affects the lymph flow, which in turn helps reduce swelling and pain.
Which is why it's hard for me to figure out why I balk at doing it.
It's more effective for me than self-mld, which is too easy to rush or to apply too much pressure.Hope that helps!
Binney0 -
Binney - I've only done the whole Lebed tape a few times. I do the opening a lot. What I've found myself doing recently is turning the volume on it way down and the volume on some favorite songs way up. So ... I'm doing it to my own music.
That probably wouldn't work if you did the whole tape but it totally works for just the opening.
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