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.

At a snail´s pace...
 

:) 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..... :Painting:......and swinging my arms just a little - which was impossible with my previous deltoid weakness.

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

Exercise is overrated anyway.

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.

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.

:hug:
Annie

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.

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

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.

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.

Roger, I really, really do see where you are coming from. You want to be able to do the things that you want to do. I feel the same way.

I am still riding my horse. If I get weak and get killed from it, oh well..... Riding my horse is a major part of defining who I am. I also plan to exert myself singing a concert tomorrow night. If I feel like crap for a week, oh well......... It probably won't kill me.

Keep on keeping on. Just be aware that you may have to modify some things. I make sure to take my mestinon before exerting myself because it is too late afterwards. The drugs do help. If they don't, then they are a waste of time and money.

About riding my horse; I can't really feel confident jumping competitively. I do enjoy trail riding. Maybe if you find that you can't compete well at running, you could enjoy hiking.

You will not prove me wrong.
I never thought or said that patients with MG can't have a full and long lasting remission. I don't think that what is written in the medical text-books is wrong. I just think that unfortunately it does not apply to all the patients.

What I said was that you have to give your body time to heal. This is the part which up to you.
This is also the place where I think that the lack of understanding of this illness by many neurologists can be so damaging.
No doubt that they have the best intentions when they encourage their patients to go back to their normal life as soon as possible, but I believe that for some this may be very counterproductive and have a negative effect on their chance to fully recover.

My husband is a marathon runner and one of my physicians was a marathon trainer. I have learned from both of them that a trained marathon runner never pushes himself beyond 70% of his maximal ability.

You also don't run a marathon every day.

I have seen marathon runners who were not properly trained and the significant difference between the way they run and their chance of getting into trouble as compared to those who are properly trained.

Those rules of thumb apply very well to MG.

I am sure that if you had a cardiorespiratory test prior to MG your VO2 max would have been very different than what it is now.

I am also sure that you gradually built up your endurance level and not started running the full 42 kilometers right away.

I am sure that you are aware of the fate of the first marathon runner.

http://www.2500marathonanniversary.com/history.aspx

rogerm213, Is your name Roger?

Studies have shown that it's the newly diagnosed or the undiagnosed MG patients who often go into an MG crisis in approximately the first year because no one is willing to give them cold, hard facts about MG. I've been in one and wouldn't want anyone to go through it. Doctors often give that line that "You can live a normal life with MG," and then patients think they ALL can do that.

The other issue is the "plasticity" of MG. It tends not to be. The brain, for example, is very plastic and by that I mean that it is capable of learning and relearning. It's "flexible."

With MG, however, the more you push, the worse you get. The worse you get, the longer it takes to recover. For example, it took a MONTH for me to get out of bed after my crisis (2005) to do anything. Four months after my crisis, I socialized with family who were in town and I had an exacerbation, which is not quite a crisis. I can go do errands now and only need to rest for a much shorter time, like an hour.

And you are not only pushing MG but your immune system too. Once the immune system goes awry, it tends to go southward in other ways as well. Many of us have more than one disease. I have celiac disease, asthma and allergies. Some have thyroid diseases or pernicious anemia. So pampering your immune system, not only your MG, is a very good move (i.e., getting enough sleep).

I'm sorry if you were put off by anything I, or others, have said here. Being realistic about MG does not equate to taking hope away. There's always hope. Our honest discussions here do not preclude hope. On the contrary, they give us the skills to combat this illness the best way we can. And you absolutely need knowledge to do that. MG has a big learning curve.

I hate quoting statistics because I honestly don't believe they're accurate, since they've historically been done on small groups of MGers. The old adage was that 1/3 get better, 1/3 stay the same and 1/3 get worse. I think that's BS. ;) And I think "they" need to take a fresh look at MG and its patients.

I'm sure you must know, being a runner, that you can't sweat out sodium and then intake too much water or you'll be open to having hyponatremia (low sodium). If it happens quickly, like with binge drinking alcohol, you can die. Knowing that does not stop anyone from running but it gives them knowledge to best take care of themselves, right?

MG is more stubborn than my Norwegian ancestors. It'll do what it wants whenever it wants to do it. So when you do decide that you'll do whatever you want whenever you want to do it, just know that your MG "partner" may have other ideas.

You do go through a grieving process when you get any disease. What I have had to give up in my life has just about killed me. And the financial strain is impossible to deal with most days. You really have to fine tune existing coping skills or get new ones to deal with a disease and what it can "take" from you. That does not mean, however, that you can't have a good life. But it'll probably be a new "normal" that is harder for you and your family/friends to adjust to.

We are all here to support everyone in the best way we know how to. We all bring different skills to the discussion and that's what makes it so interesting here. And we RESPECT each other. So, please, feel free to share anything and do say what you just said about feeling a loss of hope. I don't speak for everyone here but let me say from my heart that I welcome what you have to offer.

Human beings haven't even begun to tap the potential for healing within themselves and there is ALWAYS hope.

Annie

Annie, you wrote something in a post a long time ago about, once you get an autoimmune illness you always have it. Does my memory serve me correctly? I remember thinking....how come I didn´t know that? But, if this is true then it really changes my thinking about the bigger picture of things and guides my own tempo of activity into a much healthier perspective. :)

Anacrusis

Roger, I completely understand. Runners run. And MG is heartbreaking. I had many flares before I was diagnosed but mostly recovered and continued endurance training. This autumn, though, I was a spectator at my hometown marathon, and I have given up being ready for a December Marathon that I had selected for its cool weather. I am registered for Boston, which I have never run, and hope to be able to run it. I feel it is my responsibility to know when my goals truly are unrealistic but that it is the physician's responsibility to adjust his or her definition of normal health according to each patient, even if there is a chance of only partial success. It is difficult. I am sorry. Like you, I want to run.

Elinora, Good Luck making Boston happen. I will never be fast enough for Boston but I usually go down and watch it. I hope next year is a bit cooler than this past year was. Even the most well trained athletes struggled in the heat in 2012.

I think a lot of this boils down to perspective. There's obvious risks to a lot of activities if you have MG and how far you're willing to push your body and push your limits is up to each individual. Some perfectly healthy people like to jump out of planes. Regardless of anything else, they take a calculated risk each and every time they jump out of that plane that their parachute will open without fail. But when you're doing something you love to do, sometimes you accept the risk that comes with doing it. And sometimes, that risk isn't worth it. It's all about the individual's perception, reaction and acceptance of the level of risk. Me? I'll listen to my body, like I always have when running. If I'm having a bad day, I'm not about to push my body harder or further and damage myself more. But if I'm feeling good, then I might be more willing to take risks with it. Will other people understand that perspective? Maybe, maybe not. But it works for me and my life, and that's all that matters to me.

And to answer your question rogerm123, I completed my three leg (4.7, 4.5 and 7.0) without any trouble, at least not associated with MG. In fact, health-wise, I felt no different during the race than I did during my previous races. Despite the fatigue, the cold, the snow, the freezing rain, the seemingly gale-force headwinds and the stress that all of that plus running 16 miles puts on your body, I felt better than I have in quite a while. Although my legs are just a bit sore this morning... :)

Glad to hear the race went well Adam. As for jumping out of a plane I think I will pass on that one for now! :D

Hi elinora...that´s a good point. In my own case it feels like that is almost impossible - But I´m still working on finding one who does exactly that :) .....Anacrusis

Originally Posted by elinora

......it is the physician's responsibility to adjust his or her definition of normal health according to each patient

BRAVO elinora - to me, this is the sign of a good physician. I just don't know how many of these type of doctors are out there.


Originally Posted by Anacrusis

Hi elinora...that´s a good point. In my own case it feels like that is almost impossible - But I´m still working on finding one who does exactly that .....Anacrusis



Anacrusis

I sincerely hope you will soon be able to find the doctor that is the best for you and your health needs. I am very grateful for my current neuro - and - I do believe that he is still learning about MG via verfiable medical information and my "subjective updates" regarding my health/life with myasthenia gravis. My neuro is a "generalist" neurologist (does not assert to be a specialist in any neurological area).

Before I became this doctor's patient, I was seeing a neurologist who lists MG as one of his "specialties". His rigid approach and expectations from his medical treatment was (to me) at times, perplexing. Upon leaving an appointment one day I was approached by another patient who expressed this same observation. An MG crisis (while under this specialist's care) and subsequent hospitalizaton in a hospital - which he did not have attending privileges to - is what generated my transition from one neurologist to another.

Hang in there, when the time is right, I believe you will find the right physician.

Lol! Me too! I'll keep my feet firmly planted on the ground!

Oh! A surprise message of support just when I needed it most but least expected it! THANKS SoftTalker Sue :)

Thanks also for sharing your experiences with docs - Sounds like the second doc needs a class set of those books you mentioned about in the reading thread! :)

Thanks! I'm trying. I hope I'm answering correctly here. It's new and confusing.

You are doing great elinora.

Welcome to the "Group".

SoftTalker Sue

I have done loads of thinking on all of this and have decided after last nights 2 mile run (which turned into more walking than running) that I am going to defer my January marathon at Disney and instead put the credit for the entry fee toward the Disneyland Half Marathon in September. While I am seeing progress I have to think more long term and have to accept that progress will be slow in coming. Being stubborn and impatient will likely only lead me down a road to failure and risk undoing the progress I have made.

I apologize if I came off as a bit of a jerk here. My long term goal is still to get back to life as it was before MG and I think in time I can do that.

I will still make the trip to Disney in January as a spectator to cheer on my wife and daughter and spend time with all the friends that I have met through running over the years. There will be other races but first I need to try and heal at a slow and hopefully steady pace.

Thanks for all your advice. You all have helped me learn so much and it has been great to go to the Docs with knowledge in advance of my appointments.

You were not being a jerk. This is a really frustrating thing to be going through. We are in the same boat. I feel like my life is being stolen by this thing and I believe that the rest of us do as well. The treatments working to help us get our lives back.

I was good at taking it slow on Sunday and Monday. Well, sort of.

Saturday I sang and played a gig. I was the lead singer. I put a tremendous effort out and it went great. I was able to sing well. I sat on a stool rather than standing. The audience was receptive and enthusiastic. I was able to present several of my original songs as well as a few standards. I even had a nice chat with several people after the show.

I was glad that my husband drove me because on the way home, I ran out of gas. My tongue was paralyzed and I couldn't talk. If I had been pulled over, I would have been arrested for drunk driving. Then it because difficult to breath. I tried to relax and concentrate on breathing and it got easier in a few minutes.

By the time we got home I was a lot better. (It was an hour drive.) I have been a bit wobbly in my gait and my ptosis has been bad since, but I seem to be feeling ok this morning. I am going off to work here in a bit.

"You pays your money and you takes your chances."

I can really relate to this because I too used to sing. I can't sing anymore and it makes me sad. I can't play guitar anymore either. I want to soooo much, but anytime I sing I can't breathe. I used to have a very powerful voice and now there is no ability to even control where the notes go without a lot of effort. Once upon a time I was a music major in college and even had a once in a life time opportunity to sing in the 1000 voice choir at the 1984 Olympic Open Ceremonies. I would have continued into a music career but circumstances halted me, and now that I'm able to pursue something my body can't.

I've tried to find another way to use my creative abilities so later in life I became an art major with an emphasis in painting, but by the time I graduated the economy tanked and I have a bunch of abstract paintings that I can't sell, especially in Arizona where Southwestern style prevails. I haven't painted in a while because I'm just too tired and I feel it's pointless to continue in this economy.

Now, I've been trying to write a sci-fi/fantasy novel, and I'm about a third of the way done, but my mind is very dull lately. I try to write bits of the story here and there, but my memory of details are often obscured. I've made a calender of events in the story so that I don't get too far off track, and I'm writing bits out of sequence and will piece them together later.

It's like I'm evolving all the time; searching for a niche that my body can handle.

It's really difficult, and you had to sort through things in your own way. One reads a lot of information and draws up plans in one's mind based on that info, but then one finds out how little MG concerns itself with plans. I don't know one runner who would do well with dealing with this. I am not. Have hope, though. I was unable to run a mile this summer, but now on 40 mg of prednisone, running is coming back. I have done two long runs, albeit at an excruciatingly slow pace. Don't give up!