I have the opportunity to present to the physiotherapy and occupational therapy team at my hospital. Im very interested in your individual experiences of physiotherapy and occupational therapy, whether positive or negative?? How can we help, what has worked for you??

We don’t often see people with MG, and im really interested to see if we could be more involved and improve the rehabilitation service offered to individuals with MG in our local area.

Thanks for your time

Love the second paragraph of your message.

I can't contribute to the physio/OT debate as it's not a service I've been offered. How could physio help an Mg'er?

Good luck with the survey.

Regards

Exercise wouldn’t be appropriate for everyone with MG because everyone presents differently depending on age, severity of the MG, current medications and so on. Although, it’s really interesting to hear your positive experiences with physio Gail, as I too feel low intensity aerobic exercise and low intensity strengthening exercises may help maintain or even improve muscle strength in certain individuals with MG.

From my personal experience, my family member was prescribed a course of ivigs due to his deterioration in his condition. Two weeks after the ivigs he made a real improvement, it was amazing, although he was still left with some muscle weakness and muscle wasting, most probably because he was not able to use his muscles sufficiently prior to the ivigs due to his high levels of fatigue.

Now the ivigs may have given him a short term opportunity to possibly regain muscle strength and work on improving his fatigue via a low intensity exercise program. Maybe this is just one example where physio could help, giving him a goal focused exercise program, whether it be to build up his energy levels so that he can get across to the paper shop or even to be able hit a golf ball again??

It appears that Muscle weakness and fatigue show an intimate relationship in MG and any form of exercise has to account for this.

Gail im really interested to know how the occupational therapists were able to assist you?

thanks again for your input

The whole area of exercise and MG is an interesting one.

As others have mentioned here, the fact that MG sufferers have muscles that "fatigue" easily and are generally particularly bad at repetitive movements is going to be a challenge for physiotherapy.

Helping people find the balance so they know how much to do before taking a rest and how long the rests need to be (all this is likely to be highly individual and vary considerably from time to time for each individual) would be a really valuable thing to do.

I find that I generally feel much better when I have a moderate level of activity (eg this week I'm over in the UK, my dad just had a fall, so I'm busy running around over here, sorting out the house etc -- between the raised adrenaline and the increased activity I'm actually feeling really well).

One big mystery for me is I often have a "hangover" effect the day after doing a bit too much activity -- any help physios could give in helping to understand that + helping MG sufferers listen to their bodies and judge how much is enough would be most useful.

Johnny I have to agree, it appears that fatigue is the major limiting factor for a therapist to contend with.

You made a very valuable comment regarding the “hangover effect” the next day. My family member found that first thing in the morning was the one of the toughest times during the day and would spend long and frustrating periods of time just getting into a sitting position and then getting clothed.

I was talking to one of my patents this week who suffers with M.S and she too reports this hang over effect and feels it is generally a sign of fatigue from doing to much. She now has her day completely mapped out and lives to a set routine. In one respect she has fine tuned the ability to do as much with her given fatigue levels as possible. Life is unpredictable and it is difficult to live to set routine and she is able to account for this, if she has too do something unexpectedly she would drop something out of her routine to try to balance her fatigue levels.

Something which may be useful would be keeping a log of what you have done during the day. Again, if you feel fatigued the next day refer to the day log and see if there are activities you can do without or adapt to do in a less energy consuming fashion, or possibly allowing for more rest breaks. With my family member he always plans to do a little more on the days when he’s had his prednisone.

Possibly rating your fatigue on a scale of 0-10, 0 = no fatigue, 10 = greatest possible fatigue. By considering this scale it may be possible to identify which activities are most energy consuming and whether there is a way in which an activity can be made less stressful ((maybe where an occ. therapist could be involved, i.e. maybe the use of a perching stool when peeling the potatoes, instead of standing)

I’m an ex ballet dancer and have Myasthenia and have also spent some time with a physiotherapist. Like many MG’ers the diagnosis took years and I also now know I had MG throughout my years at ballet school. I had a few phases where I thought I was suffering from burn out but I see now that it was the MG playing up. I think that dance was particularly good as an exercise form for MG as the movements are not as repetitive as cycling, running, swimming etc and perhaps there is something about the way it works the nervous system. I also like the fact that I was even training my facial muscles ;o) Anyway, I had a very stressful situation and became very, very weak. I have to say that at that point I mainly noticed the weakness during dance classes and also climbing stairs and very strenuous activities. I was desperate and tried to work as hard as possible but it was having am adverse effect, which was so frustrating! I had to leave London and my career behind and I was diagnosed with Chronic Fatigue about one year later. I always tried to carry on doing simple bits of exercise and I always felt it helped as long as I didn’t do too much. I then went into remission and was fine for two years. I trained to become a gyrotonic instructor and I was doing great and felt physically very strong. However, whilst teaching gyrotonic I took on a second job and had no time to do the exercise myself. Before I knew it I was ill again and this time worse than ever before. I was the least physically active that I had been for years and became the most ill I’ve ever been. Anyway, I finally got a diagnosis of MG and I started to realise that my past career may have proved to be very good for me. Once I felt a little better, I asked my GP if I could be referred to a physio as I wanted to work on my fitness level. As I had been a dancer the physio felt I had enough knowledge about exercises to do and so instead she concentrated on how to structure my road back to fitness. One piece of advice she told me, which I guess ties in with my feeling that ballet was good for the MG, was to work on balance to stimulate the nerve endings. Anyway, I saw her every two weeks for about two months and she taught me the importance of planning and writing down an exercise diary. She also helped me to come up with realistic goals and that consistency was the key. I had to do something everyday and set a baseline target for days when I didn’t feel good enough. She was really great and helped a lot and I am now hoping to return to teacher training for gyrotonic again. I am very excited about the prospect of gyrotonic and MG and feel confident that it will be very good for it.

Rhona :- You’ve mentioned some really useful points, I completely agree that the therapy has to be goal focused, but more importantly focused on what the individual wants to achieve, not the therapist. I think goals are a good opportunity to tell therapists what exactly your expectations are from therapy, which then helps us to develop a personalised therapy program.

Im also pleased that you mentioned balance, I would like to think by challenging the body in different situations like with balance exercises, we may be able to stimulate several different neural systems to improve balance and overall physical performance in some individuals with MG.

In terms of the positive benefits form the dancing, I wonder whether this is the result of the stretching element of the routines which would help with the muscular tightness/rigidity. I imagine ballet dancing heavily relies on postural control and controlled movements throughout the trunk and limbs which would greatly help with the reduced core stability that some mg suffers report.

The feedback I have received will help me provide feedback to my team on the benefits of rehab/therapy intervention with MG. I have an opportunity to present this across to community and neurology specialised therapists in a couple of weeks and I will let you know the feedback I receive. The result of this will firstly hopefully mean that we are more aware that our intervention can be useful, but also help us to be more specific in the care we offer, as discussed in this topic.

In the future I would hope to increase the number of referrals we receive by improving the awareness of the importance of therapy within M.G, with g.p's, community nurses and most importantly individuals with MG.

I hope the content of this post has been helpful and if you feel any of the above may be beneficial it may be useful to discuss it with your G.P for a possible referral.

Many thanks

Just the other day it hit me...My mestinon was at its peak also at the new higher dose I'd just been started on.

Maybe we should be looking at doing a telephone screen 2-3 weeks after discharge to see if patient’s situation has changed. From what ive learnt about the condition is it fluctuates and we need to be aware of this and provide support where necessary.

Rita - I received my first referral for a lady with MG in community on Monday, what a coincidence as ive just started looking in to the condition. She was elderly, was given her diagnosis 4 years ago. She had terrible back pain with a marked scoliosis. She had been falling at home and was having difficulties getting out of bed. It was only after her daughter called her doctor several times that he made a referral to physiotherapy. This lady should not have had to wait four years for physio input. Thankfully we have been able to do alot for her, order equipment for the bedroom and bathroom, new mobility aids, advice on good posture, seating and low impact exercise and stretches. Her daughters were extremely grateful.