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Learning to Take it SLOW

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Unread 11-07-2012, 10:43 AM   #1
Lesmom96
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Default Learning to Take it SLOW

I am still newly diagnosed (6 weeks) so all of this is a learning curve for me and I know everyone responds differently with MG.

Last week I was feeling really good with Mestinon and Prednisone controlling my symptoms well. I started back on an exercise plan and was able to complete 30 minutes for 5 days in a row of walking and some brief jogging. So on sunday early afternoon, I decided to go for an easy 1 mile run. I did it and it felt ok. But then later that afternoon I was having problems with walking and breathing again. The last 2 days I have rested and I am feeling better.

I really want and need to exercise but I know I need to be careful and progress slowly.

This all seem so crazy on how much it has changed my life.
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Unread 11-07-2012, 03:00 PM   #2
Anacrusis
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Default At a snail΄s pace...

Quote:
Originally Posted by Lesmom96 View Post
This all seem so crazy on how much it has changed my life.
I know what you mean!

I never really liked exercising regularly in the old days - a 5 hour ski trip, a river rafting expedition, yes but too regular no!

But what I did notice in a different kind of way is that my personality has slowed down its own tempo completely. I talk slowly, I walk slowly, I am more patient, I teach at a slower pace but definitively much more effectively. I am much more grounded than I ever was and so are my students. I take time to live in the moment. I take my time when talking to people and space out or break up my questions which often leads them to mirroring my own slower tempo which I have only felt good about thus far

I do go for walks but I walk slowly - perhaps only because now I appreciate each step.....what is around me..... ......and swinging my arms just a little - which was impossible with my previous deltoid weakness.
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Unread 11-07-2012, 10:24 PM   #3
hajile99
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Quote:
Originally Posted by Lesmom96 View Post
I am still newly diagnosed (6 weeks) so all of this is a learning curve for me and I know everyone responds differently with MG.

I really want and need to exercise but I know I need to be careful and progress slowly.

This all seem so crazy on how much it has changed my life.
I'm newly diagnosed as well (August 29th) and a runner. It's definitely a hard transition, and while being careful and progressing at a pace that works for you is essential, don't despair. Everyone responds differently, but keep out hope that you will be able to exercise and do what you love.

I've been on Mestinon since diagnosis, as well as IVIg, and have been responding well. I still exhibit some symptoms, but I've been able to get back into running. In fact, I just ran my first half marathon since diagnosis this past weekend. And I'm running in a 200-mile relay race (I'm doing 16 miles) this coming weekend. Am I pushing myself? Yes. Is it a good idea? Maybe not. But I'll listen to my body as I go and make the best choices I can.

So, take it easy, but know that there is hope and that there's always a chance you can, smartly, get back doing what you love!

Adam
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Unread 11-07-2012, 10:26 PM   #4
southblues
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Exercise is overrated anyway.
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Unread 11-08-2012, 11:48 AM   #5
rogerm213
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Neuro gave me permission to get out and try running a bit after Monday's appt and seeing my leg strength was returning. We came up with a very conservative plan to start out and I will only run 30 second intervals for now and walk a minute or two in between them. I did 2.3 miles on Monday night and 1.5 on Tuesday. I will say in both instances I walked after I felt I had reached my run limit. It was just great to get out and move again.
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Unread 11-08-2012, 02:14 PM   #6
AnnieB3
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Nice to see you again, Lesmom.

For those of you who go running or anywhere else there is not a phone or people to help, I hope you will have a cell phone and a medical alert card with you! But then, what if you get much weaker and can't talk?

Sure, you should be able to do some activity, alternating with rest, and be "okay." But the problem with MG is that it does not act like an algorithm. It can surprise you when you least expect it.

Don't forget that activity heats up the body. Heating up the body increases acetylcholinesterase, the enzyme whose job it is to mop up acetylcholine. So more activity + heat can counteract the effects of Mestinon.

Staying hydrated can help keep your body cooler. Cooling down after an activity helps. Lying down for 15 - 20 minutes after activity is smart too.

Also, exercise can not only deplete water but electrolytes. Some people on certain drugs (like Pred) can have more issues with fluid and electrolyte balance. So just keep that in mind too since an imbalance of electrolytes like calcium, potassium and sodium can cause muscle weakness too.

Drugs are great but even with them, you still have MG. Just talk to the MGers who have more severe MG and not even doing nothing in addition to major drugs can make their MG better. Yeah, there are some MGers who do great and can do anything. But can you really know how your MG is going to go yet?

I've had this stupid disease my entire life. It can wax and wane. But it can also surprise you when you think you have it all figured out. So at least be prepared for "what ifs," be cautious and set yourselves up for the best MG success.

Your doctor can be "fooled" by MG too. If you are sitting in your neuro's office, well-rested and not doing anything, they can declare that you're fine. Sure, in that one, static moment in time your MG looks fine. But MG isn't static. It's very deceptive to think that MG is the same while sitting still as it is while exercising. And because you really want to do something, you can "fool" yourself into thinking that you can do anything.

Don't forget about the often delayed reaction of MG. Yes, MG gets worse when you dry your hair and then better after you stop. But MG can also continue to get worse for the next 1 - 3 days (average) without you even doing more. So you might be able to exercise one day but not be able to cook dinner 2 days later.

It just takes time to figure out what you can do. No, you shouldn't give up all of what you love to do but exercise is one thing that needs serious thought. I hope you will all be fine during and after doing it.


Annie
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Unread 11-08-2012, 03:05 PM   #7
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Adam, At the time I was diagnosed I was training for the Disney Marathon in January. I was diagnosed on September 28th and decided then I would do all in my power to get well enough to still give it a shot. About two weeks ago I pretty much had decided it could not happen. The plasmapheresis seemed to stop the forward progress of my MG and while I was not getting worse I was not improving either. The last two weeks things have turned positive and while I still have a ways to go to cover 26.2 miles I have every intention of being at the starting line in January and I have a great group of running friends that have offered to stay with me the whole way to support me even if I land walking most of it.

Is this foolish? It may be but I do know that I am not going to push beyond the point where I will put my life iin the balance. I have gone this distance and further in the past. It is this goal that has kept me positive and got me through the tough days when climbing a flight of stairs or even pouring a glass of juice was a challenge.

I wish you the best this weekend Adam and hope it goes well for you. I hope you will let us know how it goes.

As I approach January I have tossed out all time goals and fully realize I may ride the sweeper bus to the finish line. If I do it will be the first time I have not finished a race I started. I just can't accept not at least starting.
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Unread 11-08-2012, 09:20 PM   #8
AnnieB3
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Geez, rogerm213, I wasn't saying that YOU are foolish. MG is deceptive and can fool anyone. That doesn't make you foolish nor does it mean you have to give up what you do.

There are some of us, however, that have HAD TO give up what we do in order to survive the day and do "some" of what we want to do. It's all a matter of degree. I'm not going to give up my writing or design for this disease, though there are periods of time when I have to. And I am in no way saying that any of you should give up what you want to do but MG often has the last say about that.

I was trying to give tips on how to do it WELL when you decide to do it. You are still newbies, right? Or do you all know everything there is to know about MG? None of us, not even doctors and researchers, know everything there is to know about it. But for patients, not knowing certain things - like staying cool - can be dangerous.

Adam, I'm glad you feel that it's right for you to take a risk to run. But what I do know, from personal experience, is that when you push MG, there's no way to predict how far it will go at pushing right back. You can Google "cooling vests" and other ways to stay cool while running.

Please just be prepared ahead of time, no matter what you do.

Annie
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Unread 11-09-2012, 03:00 AM   #9
alice md
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I think that apart from physical adjustment to this illness and learning how to use your limited muscle strength in the most effective way, there is also mental adjustment.

For a very long period it was important for me to show myself and the world that I can do everything just like I did before.

3 years ago, when I required respiratory support on a daily basis, I sent an abstract of our research to a conference abroad. It was accepted as a poster and I went there. For those few hours of sitting in my wheelchair next to my poster (which no doubt was a true achievement) I paid with a few days of lying in a hotel room, not sure if I am going to survive and 2 months of recovery to the level of activity I had before.

A few months ago, my abstract was accepted for an oral presentation in an international conference (which under normal circumstance mean that I would fly there with no hesitation). I was past "proving" to myself and the world that I could do this. I weighed the pros and cons with my neurologist and some colleagues and decided that someone else could present this work just as well. Those 20 minutes of " glory" were not worth the price. It was much more important for me to preserve my level of activity, so that I could do more work, than to personally present the work that I did.

I don't think I would have been capable of thinking that way 3 years ago. What was important for me then, is no longer important for me now. But this was a process I went through and I doubt there are any short-cuts I could have made.

I think that mentally adjusting to MG is very hard, because it takes time to understand what your true abilities are. Why would you give up activities and adjust to a disability that you don't have? Both you and those around you (including your physicians) think that you can do much more than you really can. It takes time to realize that walking that extra distance today, means that you will not be able to walk tomorrow. It's very hard to make the connection between what you did with what felt like reasonable effort 2 days ago, to the way you are feeling now.
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Unread 11-09-2012, 11:27 AM   #10
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I guess I need to say that I have found information provided by both Alice and Annie to be extremely helpful and I do appreciate all both of you have done to help me better understand MG. Annie, I did not intend to imply that you called me foolish it is honestly something I bring on myself because I wonder at times if I am refusing to see the bigger picture. Will I be biting off more than I can chew? I have conceded to myself that I may not be able to do this and I make that clear. But I am do need to at very least try and if it is not to be I will then not be afraid to say you are correct and reevaluate where to from here.

I agree with Alice about the mental adjustment and perhaps I will learn the hard way. I have over come so much to get to a point where I have fought my body to complete endurance events including two years ago when I finished a half marathon followed by a marathon the day after. That I think is where my current mind frame leaves me. I am refusing to accept I can't and I'm trying to convince my mind and body I can! As I have said above in the end perhaps I can't but I am still going to try.

I am new to MG and I consider myself lucky in some ways. I was diagnosed so quickly in part because I was sliding downhill so fast. I went from finishing a half marathon on September 6nd to double vision and having little to no strength in my arms, hands and legs in less than a month. By October 1st I had my first plasmaperesis and I remember that night laying in bed and being afraid to fall asleep because my breathing was just not right.

I was lucky to find this group and I was also lucky to find a good neuro who seems to both know what he is dealing with but also listens to me and my questions. Let me add the people here have been wonderful in helping me be prepared to ask those questions and I owe a great deal of thanks to many of you for that.

I honestly can say I was disenheartened when reading the responses and came close to not coming back. While I know your responses are well intended I feel they dash the hopes and dreams of some who still think we can get beyond our diagnosises and get back to a somewhat normal lifestyle. As you both have said MG effects all of us differently and some people do go into remission and some can get back to life as they previously knew it.

I will continue to come back and I do value the information here. I do thank both of you for sharing your knowledge. In my case however I hope I can prove you wrong and find normal again.

I hope you can understand where I am coming from and see this from my point of view.
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