Kicking LEs butt!! Exercise & Self Care Log
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Carol, I think I have been moving up on the weights too much so would welcome the info. My gym of late seems to be running through dif trainers like water! I had a great one and he left for a better corporate job. Picking a trainer is very personal I think
I eased back on the weights this morning and really felt better doing my laps in the pool! Love the pool. I think my left arm is weaker than it used to be and trying to find the right mix not to make it mad~~
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OK so I wore the sleeve and OTC glove for nearly 7 hrs at work today.
JUST got my Lebed vbideo , got the eleev and glove back on , and did the whole thing through. Felt good to make so many arm movements and not feel as though I might be making myself worse.0 -
Awesome Purple, mine are ordered, hopefully will be here soon. Has anyone overdone with the Lebed - I started out, it felt so good the first day that I decided to try it twice a day, and stretch a little farther - I ended up in a ton of pain. I think the problem is that I didn't follow the rules of - if it hurts don't do it, and if you get tired rest. So I'm giving it a couple of days rest, then will start again, but slowly.
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The whole Lebed video for me, was too much at first.
I had a lot of pain after my DMX, TE's and Exchange Surgery...don't know the why or what but the arm section ... honestly I still can't do that whole section. I haven't tried in six months but I would be careful doing the whole thing. If you can do it GREAT but don't push yourself too hard.
The key for me is doing the Lymphatic Opening. That's the part I do most everyday.
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The gym is going to be closed tomorrow and I won't meet with my trainer tomorrow either so I went and did a stretching class then ran on the treadmill. I ran for 30 minutes. I haven't run that long or that far on a treadmill I think, ever. I can tell even with my gloves on that my fingers are amazing. I haven't been doing well at all in water consumption so I must drink tonight.
Happy Thanksgiving everyone!
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...don't know the why or what but the arm section ... honestly I still can't do that whole section.
Really ?!
Seemed very easy to me. Maybe I'll be sore tomorrow.Who knows ?
I liked the feeling I was doing something for myself.
Several yrs ago I tore my rotator cuff- it was almost complete/ severe. I went to PT Three times a week for 6 mos until my INS said I was done. I also had 2 cortisone shots. STILL, my hand could not reach past my forehead.(I avoid surgery like the plague !) In any case, the therapists there told me they would see me again- after my surgery.
Two yrs later I was in therapy ( for a broken knee) and saw my main therapist. I waved to him from across th room. Seeing my arm go so high he said " Aaaah, you finally had the surgery , huh ?"
When I answered no, he came across the room later to talke to me. He was amazed when I told him I did yoga and pilates every single day for a year and I got every single bit of my ROM back.I was reminded of that by Lebed.
It makes me feel like maybe, just maybe , it can help.0 -
purple - It just goes to show we are all different. The LE OT I saw I few times did myofascial release on me and wow! It HURT but it gave me my mobility back. I couldn't raise my arms over my head after my exchange surgery. I was in chronic pain for a year and a half. She told me she thought the TE had sat on my ulnar nerve. The only time I hurt now is related to the LE and it mostly only hurts when there are barometric changes but I was a mess the first year and half out of my surgery. I've come a long way.
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Thank you Dawne!
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Happy Thanksgiving everyone! I do wish Planet Fitness had a pool. The hotel we are staying in at London does and I have enjoyed using it the last two days. They keep it at 86 degrees, which is just heavenly. I can swim much more than I thought. I think I will be able to do the quarter mile swim for that mini triathlon I want to do in August. Once the summer comes, I will have access to a pool, but it won't be 86 degrees.
Happy Thanksgiving!0 -
I was a mess the first year and half out of my surgery. I've come a long way.
That sounds very hopeful.Thank you.
Happy Thanksgiving to all!
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Happy Thanksgiving to everyone, and Kay, I hope you find some properly prepared Turkey while on that London vacation!
In the optimism department, I can say without a doubt that I am stronger and more flexible and have better cardio endurance now, about 16 months after my bmx/recon, than I had before my surgery. I'm always amazed at how skipping stretches and range-of-motion work can make me feel tight through the chest and shoulders after missing just a day or two. Maybe these constant reminders that I need to keep on working and stretching muscles is what keeps me moving even on days when I don't really feel like it. And I remind myself all the time that I didn't get this far overnight; fitness comes one workout/one day at a time, and that means when there are setbacks, just keep in mind that you can get your strength back again, one workout/one day at a time, and they don't have to be blow-out, knock-down workouts, either. Just do what you can, trying to do a little more each day!
Today I woke up very early and seized the early hour to do a '3-mile fast walk' Sansone DVD, followed by Lebed lymphatic opening, followed by 20 minutes of stretching and ab work. The rest of my day will be a mix of cooking, eating, and playing with my almost-two granddaughter, with more emphasis on the playing than on the eating!
So much to be thankful for!
Carol
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WOW! Good for you, Carol!
I have a 2 yr old grand-girl as well.
ENJOY!!!!!!0 -
OK Carol you've inspired me ! Glove and sleeve on and I did the Lebed opening as my warmup followed immediately by 1 mile with sansone. I skip most of her hand movements and instead, at one pointt, I raise the arm and do 10 slow squeezes open and close. (Gotta' keep reminding myself Leslie does not have lE :>) Feels good so far.
Now off to do some cooking! Does that count ?!!!!
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Afternoon all, did my gym this morning, the pool is my luxury and do believe it helps all things, mental and physical! After touching base with Carol, I am working out a plan to talk to my gym to see if they would be interested in getting at least one trainer in gear for PAL program. My gym is part of a local group and has loads of women who have been through BC but of the trainers I have mentioned it to, they were clueless. Owners tie up with hospitals and use the name of the hospital on the door. There newest is opening soon and it will have the name of my cancer center on the door. So, thinking it a good time to mouth off!
I also realize that doing weights 6 days in a row as I did the other week.....not a good thing!
Day off of weights was needed. Gee I am so stupid and know better
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Becky, I hope your mom is doing okay and you are enjoying time with family in MD. Yes! I will be in K-ville early Dec. I definitely want to meet if it works for you. I will have a car and can drive up your way. Take me to the dam! Will PM dates.
Carol, I will be in touch, but you have been doing the program for so long that I think what your trainer is planning with you will be fine. We will have to compare notes. I can guarantee that what I am doing is mild in comparison to your routine but they sound quite similar. The PAL trainer who taught me the home protocol worked with Cathy Bryan at the largest Y where they did the study. After she taught me the routine, she showed me a couple of variations. I think I should hire her to come back to my house to kick my butt a little more.
I am grateful to live near Phila and am part of the current PAL study. I also took a four week PAL training class run by by Penn LE therapist and her colleague. I got a free set of PowerBlock weights! They are terrific, as they allow you to increase in 1 lb increments, which is the point of the whole PAL program, to advance slowly without creating inflammation and swelling. I had a tad of swelling from Hurricane Sandy that started as it approached and lasted more than a week after it passed. Had to pass on the weight program until it was back under control and go easy with the weight for a bit. I hadn't made that much progress in increasing weight since I just finished training program in Oct, but it was still frustrating.
Dawne, I can't do the arm part of the Lebed program either without it triggering swelling. I can do the program quite easily without any problem at all, my ROM is 100% and my energy is there. My LE just does not like it and my arm swells when I do the swinging the arms around above the head. Feels like centrifugal movement pushes the fluid into my hand. I really don't understand it, but I can dance in my living room by myself to pretty intense music with my arms moving more and longer than with the Lebed program but I don't swell from it. Since I'd rather dance by myself to music I like, I don't worry about why the other doesn't work for my LE. We're all different and the point is to listen to our bodies and follow their lead.
Had two days of decent walking, but I finally logged over 10,000 steps yesterday. Succumbing to some tasty treats but trying to keep it to a minimum. Drinking LOTS of water!! Dinner out tonight, just me and my husband. Will be downtown so we will get plenty of walking in before and after. Planning on doing weights this evening - motivation to not over eat!!
Happy Thanksgiving, all!! Definitely a day to up that water consumption!0 -
Proudtospin - Sounds like a perfect situation for creating positive results with the PAL program! Good for you - go for it!
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Tina - Good to know that you have some issues with the Lebed arm exercises, I have the ROM, and can do them, but they end up causing my hand to swell, and increase my pain level. I have the program and 3 different DVD's ordered, I think I'll start more slowly, and definitely start with the Lymph exercises, and some stretches. I haven't done it for several days because of the increase in pain. So do I need to have Listen to your Bodysomewhere on my body, and maybe painted on each wall of the house, stickers in the car, magnets on the fridge.....
Hope you are all having a great Thanksgiving - the clouds and rain have cleared for the day, so I'm going to get out there and take a walk.
God Bless you all!
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Yes, Linda, I have notes to myself to drink water, etc in different spots of the house. A note with Listen to Your Body sounds great. I will make one to post here. In the meantime, here's the one I have in my kitchen:
Okay, I forget at the moment how to post an image. Back later!
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Carol. I was just so happy to hear about your progress report with PAL, moving around, etc. I actually got gleefull inside just reading your report. You inspired me and everyone else too. Makes me want to move more.
Good news I think my back and hip are slowly improving although will never be the same. My chiropractor is stretching the Psoas muscle deep in my back. It is the best I have felt since last May although I am still not doing any hills. just flat.
Did 50 min walk today and pulled my sleeve up at the top and ripped a hole in it. DANG! Thanks to Binney's" fix it" idea I will put Fray check on it to stop the 1 inch run.
Oh everyone here..... take 5 deep breaths NOW!
No turkey until you do it.0 -
Proudtospin, I do hope you make some inroads with your hospital-affiliated fitness center.
When I organized a PAL workshop for trainers and LE therapists here, two area hospitals, both of which have affiliated fitness centers, sent both an LE therapist and a personal trainer. Their idea was to be able to work in partnership with LE patients and BC survivors, which is a wonderful idea.
On the more frustrating side, I tried to convince the Y in the largest area city to send one or more trainers to the workshop, but after discussing it, some committee or other decided they would not participate, because their strategic direction for community outreach was diabetes help last year, and heart disease this year, so no room for LE! I was crushed, tried to convince them that they most certainly have BC survivors working out in their facilities, and that neither the Y staff nor probably most of the BC survivors knows about LE risk. They would not budge.
And then there was the Y at another large city nearby, which sent their program director, who is also a certified personal trainer. She was great, telling me that they had not been able to participate in the LiveStrong cancer survivor program, for budget reasons, so they designed their own program, a combination cardio, flexibility, and strength training program, for all cancer survivors. After her day in our workshop, she said that she would be making changes to the program, because neither she nor the two trainers who had helped her develop the program had any clue about the LE risks they were inadvertently subjecting their clients to.
These three stories are quite different, but they are all testimony to just how little is known about LE in the fitness and even in the cancer-center world. And too many BC survivors are unaware, which is a big reason there is not a groundswell of demand from patients and gym members to request programs like PAL workshops.
Which brings me back to my motto on all things related to LE education: tag, we're it! If we don't speak up and demand information, and in this case programs, our care providers and our gym owners are not going to know of our needs and they won't spend a dime to meet them.
Proudtospin, I send you bucketloads of encouragement for when you start talking to the folks at the new fitness center! I have lots of documents explaining the what and why for a gym to learn about PAL and incorporate it in their member programs, so just PM me if you would like those resources.
Carol
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Carol, I will let you know how it comes out. I know the management team and have been a member of the gym for over 8 years. My onco and my LE person are both part of the new hospital the gym is setting up with so may be a help. I know the management likes anything they can make money on~~~
I was checking the web site of the hospital that is hooked up with my current gym, online they say they over LE therapy at my gym.....news to me! NJ is not over flowing with LE therapist in my opinion.
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Tina - interesting and encouraging that you had the same problem with the arm section. I'm sorry, though. I thought my body was crazy. But I'm in good company.
I'm interested in those block weights. I never have gotten back to five lb weights since my flair this summer. I'm stuck at three lbs for the time being. 0 -
OK , so not sure what to do today as I did the lebed opening followed by sansone 1 mile. Three hrs later, I noticed my wrist was tight in the sleeve.
Hmmm, is it too much to do both at once or? / I dunno'. I was standing a lot since early in the morning too which is very bad for my circulation...have had those issues for several years actually!
So, am meeting with my therapist and fitter today and will see what they suggest.
Not sure if I should skip exercise altogether today or what.What do you ladies do when swelling occurs in these type instances ?
Also- I kept the sleeve on for at least 4 hrs after that ( Dont wear it just for exercise ) but wonder if I should have just yanked it immediately (?) The swelling was mild. It ' felt like' ripping it off might have MADE the swelling worsen , but WHT do I know ?!Had it been extremely tight, I would have yanked it regrdless.0 -
Purple - when I get that too tight feeling, I do tend to "rip" my sleeve off, but only if I can sit with my arm elevated for a while after. You know I've been having the problem with my sleeve/gaunlet causing my knuckles and fingers to swell, I'm afraid if I don't take it off it will cause even more issues. It is a question we should probably ask our LE therapists though, I guess. I have an awesome therapist, and she's well trained, up to date, been doing this for lots of years, but sometimes I think that she hasn't seen some of the issues that I have gotten, maybe I'm just more whiney then her other clients...... I guess we could wrap instead of wearing our compression garments - YUCK!
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I'm afraid if I don't take it off it will cause even more issues."
That is what I wondered as well!
My therapist said that ' ripping it off' could cause it to balloon even more ! She said for mild swelling (NOT cutting off circulation sleeve) keep it on as long as possible.THEN< later, take off and elevate, do deep breathing etc ... This was her advice, but I so gree with listening to our own bodies. I would like to take a mix of the professional, what you ladies have foiund works, and what my arm is screaming and feel a more comfortable level of confidence with what to do. ( which is why I so appreciate all of you!)
She was not happy I have not made more of an attempt to do MLD, but was more than patient in showing me how to again, and I even requested another follow up appt. because I want to be sure I am doing it RIGHT. ( Next time, I'd like to be the one to demo to her and see what she says )
I asked her opinion on LeBed and she said it was 'ok but she isnt as impressed as she might be because there is just no proof it works.Her take on PAL? She loves it , but said I am too early in the game for it, which I do appreciate.
My angel fitter who came in on her day off took all suggestions I asked for , and I did let her ' win out' on a custom glove as well.I must sat, I have had LOTS of compliments on these arthritis IMAK gray fingerless gloves ! ( Mostly from the young crowd) Ordered from amazon.
SO- I am dedicated to doing this MLD/ right or wrong, and I have but one question for all ...IF you could only do MLD once a day would it be before exercise , after work, after shower, or at days end/ bedtime. What have you found the most effective ?
Thanks, Ladies !0 -
Dawne, as long as I can do the Lebed opening and then perform other types of stretching and exercise, that's fine with me. I have an aversion to that DVD! I prefer the self MLD because I think it's more effective, but it does take more time. I, too, am stuck at 3 lbs for now. Two steps forward, one step back it seems. I guess we should be used to this by now, but I still find it frustrating. The only thing I can consistently do without swelling is walk, so I console myself with that when the weights are out. I avoid swinging my arms a lot when I walk because I think it bothers my truncal LE. If my hand or arm is bothering me, I will usually keep my hand in my jacket pocket.
Purple, I don't have any experience with the Sansone programs, but I do know some are more advanced. Carol said that some can be taxing on the arms, and I don't know which one you are using. I tend to avoid swinging my arms repetitively because it causes friction in my trunk from my compression tank. As far as doing too much, that is something you will have to see what is true for you. When I was taking the PAL classes, we talked about the "total load" for the day. For example, if one were to do the weight program in the morning, it would probably be best not to do something else later like intensive gardening or scrubbing the floor. As one is beginning to exercise, these other tasks need to be considered because they do create an additional demand on the lymphatic system. I think this is also true for aerobic exercise. All these activities generate "waste" that must be processed by the lymphatic system. One isn't really just reconditioning muscles or lung capacity, but the lymphatic system, too. (Well, it's more like finding the amount of cardio, weight exercises, and daily tasks one can do at the time that allows the lymphatic system to maintain its equilibrium. This, hopefully, will increase over time.) Just because a lot of daily activities seemed like nothing prior to surgery and LE, they need to be accounted for if one is experiencing LE for the first time and trying to stabilize it. Actually, if your LE is not yet stable, you need to be very careful not to not further stress. Likewise, during a flare one needs to back off putting additional demand on the limb, as it is clearly struggling to remove the existing fluid that is present. Yes, some walking is good, but three miles of vigorous walking with arm pumping is probably too much. If Carol comes along, I'm sure she can explain this further.
Linda, you are not more whiny, you are an educated patient! I asked my therapist once if I was making too big of a deal about a small amount of swelling or pain, and she said she preferred that much more to those who don't complain until their hand or arm is experiencing significant swelling or pain. This is one situation where you should never have to feel like a hypochondriac or a complainer, and anyone who says otherwise can take a hike. Having said that, one does develop a realistic sense of how things feel as they ebb and flow at times due to a flare, sodium intake, summer weather, etc and learn when to ask for professional help. However, in the beginning as one is learning how to control and maintain their LE, it is always best to ask if you are concerned by the way something looks or feels.0 -
Purple, did your therapist give you a printout with instructions and diagram? That is very helpful. Also, yes, your therapist should instruct you and then you do it to show you understand. We need to know how much pressure is right, how quickly to perform the strokes, etc. Once she is satisfied you have an understanding of how to do, you would practice on your own between sessions. When you return she should want to know how you think you are doing, has it been helpful, and watch you do again and provide necessary correction. As far as when to do MLD, I try to do morning and night, but definitely at night since I have more swelling by the end of the day. I may skip mornings. Before exercise I usually stimulate the nodes or do the Lebed opening.
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. Yes, some walking is good, but three miles of vigorous walking with arm pumping is probably too much."
No, I only do one mile after Lebed opening segment , and I totally avoid the arm movements.My therapist was actually saying I SHOULD do the arm movements because otherwise the position I had my arm in (stationary and across my breast / bent) was actually contributing to stagnation.
I do have an appreciation on what you said about iNCL. the ADL's etc ... I have several other conditions as well, and my therapist said it very well when she explained that if my vascular/ circ. system is ' having a tough day" and then the lymphatic system is also having a tough day. ... well, they are sort of ' married to each other' ( Makes for a rocky road for both husband an wife)
Thanks very much for your comments !0 -
Thanks Tina.
Yes, I have complete instructions ( no diagrams though )
OK, I will try to do mine at night and do Lebed before workouts.0 -
Putting rain gear on and gettin the heck out of being trapped in office.
Linda, You are not whiney, It is not fun being uncomfortable especially when we are trying to be compliant with all this stupid, idiotic LE garment stuff. Yes, sometimes I take mine off and elevate for awhile when it bugs me. I feel so free when I do this.
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