[Junker]

How I finally put together a suitable exercise program after two chaotic MG years:

The evolvement of my exercise program took 2 years. Please be aware that the following thoughts reflect my personal experience, it´s not meant to be professional advice.

To be more precise:

The first year was chararacterized by simply following instructions of doctors, physiotherapists and 2 extensive rehab hospital stays. This was all about getting out of bed, learning to walk again and coping with my daily routines independently.

In the course of the second year I gradually learned to plan rehab measures and to set my individual goals. The last two months, however, turned out to be the first ones in which I could establish something like a steady training plan.

But let´s get back to Jodi´s opening questions:

How have your exercise limits or routines changed over time?

Within the initial phase of MG I had no such landmarks like limits or routines. I would have no idea when I would exceed my limits and scope/intensity of my exercises would alter on a daily basis. Periods of apparent progress were followed by periods of fatigue and total inactivity. It particularly confounded me that overstraining would become noticable with a substantial time lag. Often in the course of a sleepless night with major cramps.

So I had to learn not to train into exhaustion. For example rather than absolving 3 or 4 repetitions of an exercise I would limit myself to two repetitions and rather than pushing the limits I would try to reach regularity of exercises.

Have you discovered any safe and sustainable movements that work for you?

Physiotherapy and occupational therapy may provide you with a vast number of suitable exercises and movements. I would chose a limited number of exercises and make notes or watch video instructions. From my point of view it is important to put together some reasonable stretching and strengthening program that can easily be executed at home without an instructor. MG makes my muscles feel continously strained. Stretching may therefore be a pleasant countermove.

With respect to using gym facilities I agreed trial subscriptions and finally found out that given the limited endurance of MG patients it would make sense to find facilities nearby where a dense and efficient training can be ensured.

I discovered eGYM Training and I really appreciate it for the following features: It is easy to operate, movements are well guided and and exactly recorded. So you can reflect and adapt your efforts easily.

How
did you cope when myasthenia gravis symptoms prompted you to pause or start
over?

The easy answer would be to just start again. My whole MG journey was an ongoing sequence of trial and error. It took until the last two months to establish some kind of routine consisting of:

1. Two intensive physiotherapy units per week form the basis of my exercising efforts

2. A balanced selection of about 10 stretching and strengthening exercises for home training

3. Regular eGym Training combined with some ergometer training

While I have just been develping some kind of routine I had to go back to hospital for surgery that will force me to take care of my surgery wound and to slow down for at least six weeks.

I would therefore like to postpone my answer to the question above. I hope I will successfully cope with this challenge and I am ready to further elaborate.

[Jodi]

Your exercise journey is great to read, and speaks volumes about your patience and persistence. We’d love it if you shared tips like this as posts in the Support for Myasthenia Gravis Facebook group. There’s so much here others could learn from, especially around not training into exhaustion and choosing sustainability over intensity. -Jodi, Patient Advocate

[Junker]

You are making an interesting point. In deed I asked myself just recenlty if I should rather post here or in the the Support Facebook Group. In this case I appreciated that I would respond to your questions and discussion points on facebook I would feel like acting the big shot. I will try to find a good balance. In general I have no objections to share esxperiences on both channels.

[Junker]

I actually just reviewed and adapted this piece and would make it available as post in the Support for
Myasthenia Gravis Facebook group. Maybe it’s too long for a post, though. Just let me know…😉

[Jodi]

I appreciate it! That makes total sense. Maybe just test the waters and see how the Support for Myasthenia Gravis group ends up evolving. It doesn’t have to be set in stone which platform you lean toward more. The forums can be a great space to prompt your mind to think about something new that day, maybe something you haven’t thought about in a while, or even something totally new. It can also be a good push to reflect and share your own experience. Of course, the support group also has great questions and discussions too, so maybe just see which platform ends up offering responses or stories that resonate most with you. -Jodi, Patient Advocate