Exercise Programs Yikes!!!!

Well I got a call this a.m. before leaving for the last part of my neuro/psych testing and apparently I have to go to another hospital at 9:15 tomorrow for an assessment for the lung health clinic where they are supposed to help me with an exercise and diet program that I can do with my asthma.  They will do a 2 hour assessment tomorrow and then I am to start on Oct. 29th every tues and thurs from 1130 to1430 for 8 weeks!  This is in the downtown core of the city so it will be a challenge to get there for me alone.  I will have to drive to Mom's and then get a bus to downtown and the walk from the bus stop along could very well kill me I am sure!  hehe

Anyway, they told me to bring running shoes tomorrow for walking on the tread mill...YIKES....I can't hardly manage to stay standing when the ground only appears to be moving let alone when it really IS moving!!!  Has anyone tried to use a treadmill when they are having problems with balance?  I am really concerned about this because I really don't want those darn , wake you up in the middle of the night with a pain in your thigh like someone is stabbing you with a sword, pains!  I guess I will go check it out but any advice that anyone can offer would be appreciated!  Hubby is taking me there tomorrow so the walk back to the bus won't be an issue but in October I am thinking this could be a problem.  We stopped at the mall to buy some running shoes today and by the time we got back to the truck I had a hard time getting in... and right my legs are killing me. Hmmmm....this should be VERY INTERESTINK!

Lots of Hugs,

Rena

[Sunnytoday]

Rena... I just wanted to dash out something before i go to sleep (which would be a good idea, maybe it will chase the strange new dizzies away).

When you are doing PT, the goal is to (I was told) work you just enough that you feel pain, but not an huge amount that is un-livable. Basically, no pain no gain. But, they SHOULD each day do a pain assessment to see how you are feeling and make sure that what they are doing isn't killing you, or at least making you feel worse than when you started. This will, or should, help them assess if what they are doing is working and if they are helping or hurting.

Also, as they are doing the PT, they SHOULD be checking in on you every few minutes if not standing over you and you MUST tell them if you have any pains, or troubles as well as report the next mornings any new pains, etc. This helps them as they create and revamp a schedule for you.

Lastly, bring up your bad balance, etc. in the first PT assesment, this will allow for them to create a safer enviroment for you. (hopefully). For me, they always had a P. Therapist in the pool with me, becuase i had such bad balance already last Fall, and they knew of my terrible balance (becuase i told them) that i could fall and hurt, or drown myeslf in that little pool. Grin.  So perhaps they can modify it, some PT'ers use specialty walking equiment, etc. for bad balance because they do see a lot of it. Also, to help them out be sure to clue them in on anything that you have that they may not pick up on in first sight... such as that bad balance, any high blood pressure, insulin pumps, etc. becuase that's very important.

Hope this at least maybe made sense, as my brain is still VERY empty and strange and fuzzy feeling from the killer head-ache.

Hugs, and good night!
~Sunnytoday~

[Sunnytoday]

ooo... I forgot. Becuase this is PT for your lungs, they SHOULD be doing some type of lung functioning tests during or throughout your PT to see if this is helping or hindering your asthma, as well as monitoring your oxygen.

And, they NEED to set you up with a peak flow meter, as well as a "stop-light" plan that will help you monitor you lung volume on your own, and it will help you prevent attacks by allowing you to treat any problems or decreases in lung volume before they become a major problem or asthma attack.

Grin- I've had really bad asthma for the last ten years (since I was ten) so i've had some expereince and the peak flow meter is my best friend, i can actually tell when i'm going to get sick becuase my lung volume starts dropping....

Hope they've done this for you, it's a great tool and can prevent ER trips, and helps the Dr.'s when you go in, you can hand your peak flow chart to them and they can treat you accordingly with the correct meds.

(((hugs))))
~Sunnytoday~

[doni54]

I can't give you any better advice than Sunny already has.  Just be careful on the treadmill and make sure someone is standing there with you.  Don't won't you to lose balance and fall!!

I'll be thinking of you and sending prayers your way.

Love,
doni

[Lulu54]

Rena,
I wrote a really good response and then my laptop puked up its guts and died !  So let me try it on my regular computer -
Back in the spring when I was only a heart attack patient and had not considered MS as possible, I started doing more exercise, including using my husband's treadmill in the basement.  Picture the Jetsons and the opening scene with George caught in the loop while Astro the dog is watching .... that was me.  I went backwards off the blasted machine, limped upstairs, where my husband said "was that thump I heard you?"  I've stayed off the treadmill ever since.  I did notice in the month or so that I used it when I stopped by brain was throwing all sorts of signals that I was dizzy, off balance, could almost swear I was going to faint. MY BP never got that high because I never walked that fast, so I now think it had something to do with the jarring of my brain while I was on the treadmill  - all the bouncing and  the jarring of my vision.  

These days I stick to walking on firm ground.
When you walk on the treadmill be sure to hold onto the handles.  

Good luck with the new exercise plan,
Laura

[Super_sally888]

Treadmill will have hand rails that you can hang onto.  This will help.  Also I'm sure they'll start really slowly. And tell them about your balance issues.

Good luck!

[Sunnytoday]

So, howd' the assesment go? I'm not sure of all the time-zones... but let us know when you finish if it went ok. :)
~Sunnytoday~

[Rena705]

Sure appreciate all of your feedback yesterday...I did read it late last night so I was better prepared for today...Thank you!

It went ok I guess...I was told that my CT Scan showed that I have Emphysema as well as Asthma so that is not good.  He said there is damage in my lungs and that it can't be repaired but that I am in the low-normal bracket so if we are careful and keep up with my meds we should be able to avoid anything too serious for a while.  I have to get a flu shot although the last one a few years ago made me pretty darn sick...all the allergy blood tests were negative so I guess I am no longer allergic to eggs so he figures it's worth it to try the shot again.

The treadmill and I didn't get along very well.  I was ok until they tried to speed it up and my left leg just wouldn't participate and I kept tripping.  The lung specialist was watching and asked if I was being treated for my MS yet and when I responded no, he asked why.  I told  him that my neurologist said my MS is in-active and that I don't need to be on any meds.  He said that didn't seem right to him to which I responded, "so are you willing to help me with it?"  He said that he is going to call my gp but who knows...he did recognize the foot drop in my left leg though so why doesn't the neurologist...who bloody well knows?

Anyway, I am really tired and I think I am going to go lie down for a while.  They are going to focus on using the bicycle to try to exercise so that I won't have all the weight on my legs...the treadmill is too dangerous for me he said.  So I start the program on October 28 and go three hours a day for two days a week for 8 weeks.

Again, thanks for your help all and thanks for checking on me Sunny...how are you feeling today?

Lots of Hugs,

Rena

[Quixotic1]

PT's are not as well rounded always as we would like them to be.  These guys may have NO CLUE what to do with your neurologic deficits.  This means they may be quite unreasonable in the exercises they are proposing for you.

In the case of severe vertigo or severely compromised balance a treadmill is NOT SAFE.

I believe you should tell them immediately about your neurologic status and request that they consult with the director of the PT department so that the Pulmonary PTs can coordinate with the Neuro PTs as to what kind of a program would be best and safest for you.

Elaine has had some horrendous problems with PTs that were supposedly trained in neuro rehab, but who knew nothing about MS and were having Craig do ridiculous exercises.  They had absurd expectations and did more damage than good.

Well, old tardy here just read your last post and I see I am Johnny Come Lately here.  It would be nice if the Lung Specialist could request a neuro PT eval for you if even through your do-nothing GP.

Are you a smoker?  Why do you have emphysema?  Aren't you still in your 40's?  Wow!

Quix

[wonko]

I'm sorry to hear about the Emphysema & Asthma, but as I read that I was also so glad to recall that you've quit smoking for over a year now.

I hope your commitment to better health stays strong and keeps you feeling at your best!
  

[doni54]

Just wanted to send you bunches of hugs.....rest well, my friend.

Love
doni

[Rena705]

Hey Quix...(did ya wanna borrow that plug you sent me he he he he) couldn't resist that one!  Anyway, I am, as I found out today when I passed it by my Mom in conversation that I will be 46 next month!  I have been telling everyone for about a  year that I am already 46 and will be 47!  TALK ABOUT COGNITIVE DYSFUNCTION EH?!! hehehe  I did smoke for quite a few years and quit 1 year and 2 months ago and I will never go back.  I know I did it to myself and am willing to take the consequences with little complaint...I hope that I can keep things under control and my lung doctor is supposed to be the best in the city so I am finally lucky in something medical! hehe

Wonko...thanks for the kind words honey...I can promise that I will never smoke again...I can't walk by a smoker outdoor's right now without choking so I don't see me doing it again myself.

Lots of Hugs,

Rena

[wonko]

You're light years ahead of me, sister.  

I've got 5+ smoke-free months under my belt, but I am still tempted to tackle outdoor smokers pull their cigs out of their hands for me!

I have similar fantasies when I pass someone eating a cheeseburger or brownie ;-)

But it's like seeing a really expensive pair of shoes:  I might really want 'em, but I can't have them, and even if I could, they'd do more harm than good (as I'd likely fall, esp. if there are heals!).

Congrats on quitting.  Let's not dwell on and feel guilty about the past.  Instead of feeling like you did this to yourself, think of what a great thing you did for yourself by quitting.  Guilt is ugly stuff, it's anger at yourself.  I hope you don't really feel that way.  We're all really proud of you!

[shoshin]

Gosh, three hours of PT. Mine was 45 minutes and I often thought that was entirely long enough. I hope you hold out and I hope they are able to understand your limitations. I had an unexpected sub PT person one day and it was like everything was off because her expectations were out of whack. Plus she kept trying to make small talk while I was trying to concentrate on my balance.

I did once have a neuro tell me he thought I should try walking on a treadmill to "challenge" my balance. I'm not sure that would have been such a good idea and I'm glad they're switching you to a bike.

I hope the lung specialist is finally a decent doctor in your life.

sho

PS for Wonko: when my mother quit smoking for a long time she used to follow smokers around the supermarket (this was some time ago) just so she could smell the smoke. Now she can't stand the smell of cigarette smoke. I think it took a while, though.

[Sunnytoday]

Man o days....... three hours? Are they insane? I'm glad you are ok, i can't imagine anyone making it that long on a treadmill... most fit people don't even stay on one that long. WHEW! I'm glad that you have a good Physical Therapist, it sounds like he was watching and at least knew his stuff if he's moving you to the bycicle that's good.... hopefully it won't bother your hip joints. I had trouble with that during PT last fall.

They probably "had" to start you out on the treadmill to at least see how it would work, becuase that's what the Dr. ordered and in order to change it you have to try it and document it, etc. to be able to do it differently even if the PT'ers see that you can't function properly on the treadmill.... insurance companies are so crazy in their demands for documentation for PT. That's what I was told last year at least.

I hope that you will recover ok, and that next week goes better for ya!
I'm doing ok myeslf, but I could lose the "weird" squeezing feeling on my neck and head and be a lot happier... i should go to bed and get some sleep and see if that doesn't help. I've got to get enough sleep, appears I may have had another seizure last night. Just enough to spook ya', i keep thing I'm "over" them things, and then, well, I have another one and it sorta reminds ya that I'm not dreaming this all up.

~Sunnytoday~

[Rena705]

Gee Sunny...I don't know where that idea came from...I was only on the treadmill for about 5 minutes I suppose at the most and then my left leg kept bumming out and I kept tripping so they got me off that thing.  I don't know that it was a PT I was working with anyway...I believe they were techs.  They were there to hook me up to the breathing machines and then when the testing started my lung doctor was sitting right next to me for the whole thing and it was he that told them to stop and that they had enough information and that the treadmill was out for me for the time being.  It was the lung doctor that told them that I am not to be on the treadmill again..to start me on the bicycle at the end of October when the program starts.  The program will include exercise (warmups, stretches, breathing retraining, muscle strengthening, walking and weights, and the stationary bicycle.  Education will be a large part as well and topics include using meds properly, conserving energy, understanding breathing, coping with fear, anger and stress, managing leisure time,choosing healthy foods, using oxygen, importance of exercise and the power of laughter and a positive outlook.  They also said that a dietician will be made availablefor me and they are going to request that she make up an eating plan designed just for me.  They said all diets are pretty much for healthy people and by the look of my file I am not very healthy so they sound as though they are genuinely interested in helping me which would be such as switch in my life in comparison to the last 18 months in dealing with healthcare eh?  I am going to give it a good try and see if it will help and I am going to try to start working on the exercise bike here at home first so it won't be such a jolt to my legs once I start.  I guess time will tell but it feels pretty good to have the feeling that these people genuinely seem to care!  What a switch for me!

Lots of Hugs,

Rena

[Sunnytoday]

Wow... sounds aboslutely wonderful.... I'm headed for PT tomorrow for gait training and possible braces for my feet. And I hope that my experience is half as good as that!

Somehow I read the 3 hours and just figured you were on there for that long. Bleck! I know when I went in to PT last fall I got stuck on the machines for my entire sessions, so that's probably why i figured that.

Your doc. was there too? Wow, that's amazing, my doc. always some-how manged to "forget' to send the directions over to PT until after I was there for a few weeks and asked " ARE you SURE we are doing the RIGHT thing here, this is KILLING me!!" This time I have the Rx. in hand to give to them and I KNOW what it says! :)

They sound like they are REALLY going to work with you, on the whole person and not just on your muscles or your lungs. I'm HAPPY that it looks like they at least are doing a very good job! YAY!!! Let us know how it goes so we can support you, i found it's hard to keep up with all those excercises, plans and such after a few months. I'll keep you in my thoughts!!!
~Sunnytoday~