[Junker]

Given that I just had my 2 year MG anniversary and on the vigil of my next neurologic checkup this may be an excellent occasion to reflect my different MG phases.

Unpredictability is a major MG feature that makes it difficult to identify patterns and stages. I will give it a try focusing on symptom development:

1. Disorientation – Being helpless in the face of numerous symptoms and ongoing setbacks (06/2023 – 01/2024)

MG was diagnosed about a month after it occurred. It all started with heavy ocular symptoms such as double vision (diplopia) and droopy eyes (ptosis) but it was soon accompanied by vertigo and gait disorder. The most noticeable symptoms would seem to improve when medication started with heavy doses of Prednisolon and Mestinon. Thymectomy was carried out in 09/2023 followed by a rehab hospital stay. My physical condition had been impaired by several causes: heart problems (cardiac arrhythmia), orthopedic issues and increasing overweight with clear signs of cushing syndrome driven by overdosing Prednisolon. Doctors would expect me to differentiate between symptoms and causes while I would expect THEM to specify which kind of illness caused specific symptoms. So I ended up in a situation where I felt helpless being confronted with deteriorating physical and psychological conditions.

2. Starting coordinated measures subsequent to major MG crisis (02/2024 – 08/2024)

Astonishingly things had to become worse to start to get better. Meanwhile I had collected information about MG, became member of Deutsche Myasthenie Gesellschaft (German Myasthenia Association) and succeeded in being taken care of by competent neurologists associated to a certified Myasthenia Center. So I finally had adequate contact persons when a major MG crisis hit me. Amysosthenia worsened and I was bedridden with problems to cope with daily routines and had to go hospital again. Infusions enabled me to get out of bed and to gradually mobilize. Medication has being checked regularly and the Prednisolon overdose has being reduced constantly. Another rehab clinic measure focused on my mobility, concentration, responsiveness and strengthening my muscles. Nevertheless I would not be able to walk, stand or even sit for more than a couple of minutes. A rollator became my main medical device to be able to alternate between these activities and thus increased my mobility.

3. (Hopefully) Stabilizing Symptoms (since 09/2024)

Once medication had been adjusted and started to make a significant impact I could start to set personal goals and to intensify measures to cope with MG. Notwithstanding that MG flare-ups continue to interfere with my day to day management, I could regain my job and cope with daily chores. Lack of mobility, substantial muscle and joint pain as well as sleepless nights remain to be a heavy burden, but I have the feeling that I am still making progress in regaining strength and stabilizing symptoms. For example ocular and breathing problems are meanwhile kept under control relatively well.

This text may seem like the description of a gradually improving process. That would be far from truth as way too may setbacks and moments of desperation impeded my journey. Patience is key. After 2 years of patience I feel to be in the position to reflect discreetly and categorize my MG journey. Let´s wait and see what comes next….

[Junker]

I was diagnosed with MG in 07/2023 at the age of 57 within a professional environment characterized by continuous job reductions. No one really expected me to be able to regain my original job in banking.

I would even say that this particular position had ceased to exist as tusks and responsibilities would have been changing constantly.

So my challenge was to fight for my job and to somehow become capable of work again.

This would include:

• Intensive Rehab Program to restore a certain
  level of physical and mental abilities
• Developing the adequate mental strength and self-
  confidence to dare to face up to a rough working atmosphere
• Get familiar with all relevant labor and social security regulations
• Get your “troops” together such as worker´s
  council, union member, representative body for disabled employees etc.
• Apply for the legal status as disabled employee (according
  to German labor law) as it may provide you with certain work protection
  rights.
• Learn to present and market yourself again

We all know that MG always holds surprises in store for us. So my illness was also marked by the usual ups and downs and a persistent uncertainty.

To fit all these requirements and tusks into my difficult and lengthy MG journey sometimes seemed to be like a mission impossible.

I finally made it back to my job. To be frank, at the age of (almost) 60 this is going to be my last job and it’s more like preserving existential needs rather than career planning.

Pressure will continue to rise and any lengthy sick leave might bring my job perspective finally to an end.

Nevertheless it was worth the efforts!

[Junker]

Although not being able to drive results in a significant lack of mobilitiy (especially when you live in the countryside) I have chosen a very careful approach to regain this form of independence.

As MG features have been shifting from ocular issues to generalized MG with major muscle problems I had to focus on body flexibility, endurance and responsivness.

These abilitlies have been tested intensively and finally successfully in the course of two necessary rehab stays. Subsequent to a final OK from ophthalmologist I would carefully start to test my driving.

After all it took me more than a year to drive again. It turned out to be worthwhile to take this time to ensure that I am able to focus and concentrate in the driver´s seat.

Today I drive regularly. The longer the ride the more important is to care for an adequate medication level. I would still stay away from my car, though, in the maybe 5% of days where I just feel disabled and would limit long rides to the necessary level.

[Junker]

First of all this fatigue that seems to mildew my whole life and secondly the loss of mobility caused by portentous concurrence of orthopedic problems and muscle weakness.

My lack of mobility is quite obvious once I show up with a rollator. With respect to fatigue the mildew picture describes fairly well the constraining of my former spontaneity and enthusiasm.

I would also describe this feeling of helplessness as you never know what your strength or energy level is going to be like. Just imagine -I would tell my friends – living in this kind of uncertainty.

[Junker]

I know that this is a major issue for many MG patients. I have actually never been told this. Probably because I mostly use a rollator and have serious walking problems.

Like many others I have been going through various MG phases and I have been isolated in hospitals or at home for a long while. Once I started to go out, though, I had gained lots of weight and had to cope with Cushing Syndrom caused by heavy prednisolon overdoses.

So people would not say that I would not look sick, but rather tell me that I should lose weight to get rid of my problems. Different issue, but same background, as the illness is not recognized as the ultimate problem. Lose weight and you will look and move better, stop sweating and become more active!

So the invisible illness would be ignored and – even worse – you would be blamed for being overweighted and too lazy. I guess I am over this today, but this experience is still hurting me.

[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.

[Junker]

A one- year – agreement for home office equipped with furniture and technical facilities suitable for disabled individuals enabled me to stay in my banking job for the time being.

Making use of a rollator walker increased my mobility. It seemed a kind of weird at the beginning, but it soon provided me with enough security to take care of medical appointments, shopping or administrative tasks on my own. Irrespective of my weak appearance being reliant on it, the rollator amplified my facilites and became a real game changer.

[Junker]

I loved to attend concerts, festivals and sport events. Typical summer enjoyments would include sitting and chatting with friends in a German beer garden. All those activities belong to the past. After 2 years of MG I am not stable and strong enough for any of these options. Summer heat makes it even more complicated. I now try to make short visits to social events despite my lack of mobility and the everlasting threat of stomach problems. Had to learn though that it would not work without some friend´s support. Next week I want to go to a small Rock Concert. Got the ticket, enrolled as handicapped person dependent on rollator and a person who takes care. Looking forward, pretty nervous though. It is a first step, hope it´s gonna work….

[Junker]

To cope with MG I need plans and schedules. Once I am on track with my physiotherapy units, gym and stretching exercises and diet efforts, I appreciate my progress, write it down in my MG diary and motivate myself for the next steps.

But as you all know, these plans may all of a sudden seem like a waste of paper and time. When it´s getting tough, being overwhelmed by tiredness and fatigue, I tend to lose focus and fall into depression. Not always, but often enough.

Zen Meditation used to be a relaxation technique that worked for me. But that was before MG. Nowadays I am lacking the focus and the strength for determined meditation. Relaxation turns into sheer tiredness and body pain overwhelms my mind.

So I am trying to find energy and motivation by reading and dealing with philosophy. It is hard, however, to concentrate and I became a real slow reader. Lately I found some encouragement and new power by dealing with the myth of Sisiphus, who would have to push a rock up a mountain again and again, just like coping with MG flares and fatigue again and again….

[Junker]

I finally found a very good and helpful physiotherapist. We agreed to focus on two intensive weekly treatment dates. This schedule and her wonderful expertise helped me to activate my bad muscles. In coordination with my physiotherapist I started to exercise in Gym this month. The main challenge seems to be to exercise efficiently while not to getting into exhaustion that might cause MG flare-ups. I do EGym- exercises that are well recorded and fairly easy to handle. Additionally I need to ensure proper stretching. I understood that MG patients should rather focus on short exercise units and not to do too many sets. But as I mentioned I am currently exploring my potential and need to learn and experience.

[Junker]

During the last two years I was focused on reducing my medical problems and the MG symptoms. Last September I felt stable enough to work fulltime again based in my home office. Since then I am still struggling to find back to normal life. Turns out to be hard to reactive some kind of social life when you can not make plans.

[Junker]

Even after two years suffering from MG I am still wondering if I a m still wondering if I am affected by brain fog. Doctors would say no, but as a matte of fact I have serious problems to concentrate. Used to be a pasionate reader. Haven´t been able, however, to read a single book throughout the last two years.

[Junker]

Started with 100mg and began reducing the prednisone dose gradually after 5 months. Really felt like I was suffering severly from these high doses. My weight literally exploded, I was sweating all the time and usually short of breath. Things got better once a qualified neurologist tooke care of medication. Even though the prednisone dose was gradually scaled down to 5mg, all diet efforts seemed to be useless. I guess even on the 5mg level, my body still needed time to adapt. MG was diagnosed two years ago in June 2023. Took me until November 2024 to make real progress in losing weight.

[Junker]

Eyelid drooping and problems regarding facial expressions were the first visible changes in my appearance. It was tough when friends and family members obviously had to fight their tears while looking at me. While these changes could managed fairly well through medication, it was the enormous weight gain and a distinct moon face resulting from prednisone medication that really devastated me. Especially in combination with amyotrophia and the loss of strenght.

First step was to be patient and to accept these changes for the time being. Next steps were to reduce medication in accordance with medical advice, to change nutrition and to intensify physical exercise.

After two years of MG in terms of weight I am back on the pre-MG level. I am still misssing strength and muscles to move confidently, but even being dependent on a rollator walker I feel a lot more self confident. It´s still a long way to go and patience will remain to be key…

[Junker]

It definitely changed my identity and being almost 60 years old and after 2 years suffering from MG I am still struggling to define my new identity. I always hated to limits to myself. All of a sudden I had to accept to live with the limitations imposed by MG. I became isolated, losing friends and having to fight for my job and subsistence. I am still learning to accept my new life and finding out who I am now. Some days I feel fine, some days are depressing. It remains challenging and maybe that´s what pushes me further.

[Junker]

Due to high doses of prednisolon I showed clear symptoms of the so called cushing syndrome, such as a round face, a fatty hump between the shoulders and I gained a lot of weight. These symptoms in combination with MG fatigue would make people feel entitled to give me the advice to lose weight and to exercise more. Of course this may be reasonable advice in general, but for me it felt like an absurd misunderstanding of my health problems. It all seemed to be about the stereotype of being too fat and too tired (or even lazy).

I had to learn patience and serenity and to focus on myself. That was a hard lesson to learn. It took almost two years since diagnosis to scale down medication, especially prednisolon/cortisol and find the right level of physical exercise, always aware that we need to compromise and to liaise with health professional and other patients just like you…

[Junker]

I dramatically gained weight during my first year with MG and the high dose of cortisol (100mg daily over months) lead to increased appetite and terrible cushing syndrome. Tried to start all kinds of diet efforts without any successs at all. With heart problems occuring at the same time, weight loss became a must. Meanwhile I lost a substantial amout of weight, but I still find it frustrating that being on a diet has become such an integral part of my life. I have reached a point where it appears to be rather painful to lose any pound taking away strength that I would urgently need to cope with other MG symptoms and flare-ups.

[Junker]

Look for appropriate neurologic medical care, interact with other MG patients sharing experiences and benefitting from mental support, learn as much as possible about your disease and be patient with yourself. I habe to admit, though, I am still working on all of these points myself.

[Junker]

Was very reluctant o use a rollator walker, but it finally provided me with a new range of mobility and I could travel on my own. Besides this mobility aid I am currently testing apps to faciltate dialy life.

[Junker]

Thank you for your encouraging words. You had been right, I really did fine. Just two weeks after surgery I am back home and could start some light physio exercise units. My relatively good physical condition helped and I managed to get out of bed the same day in the evening. Had no significant MG flare up, but need to be careful with my surgery wound. Thanks and all the best to you.

[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…😉

[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]

Thank you very much for your good wishes and your useful information. I made a quick decision on the surgery. The respective fracture was diagnosed just a week ago. It annoys me, that my path of recovery is put on risk, but I have a good feeling. May be an advantage to be in a much better physical condition than 2 years ago, when I had my thymectomy.

Thanks again and all the best for you!

[Junker]

Wonderfully brought to the point!