1. Introduction

You are looking at someone who after 57 years of generally very good health (apart from the usual childhood ailments) and involved in many sports including football, swimming, rowing, tennis, boxing, golf, squash, and ski-ing, I was taken ill with what we now know to be POLYMYOSITIS.
March 8th 2007 is a date I will never forget as I arose from bed to go to work, I thought “what on earth am I doing” – I could hardly move.

2.Symptoms

These were in the main fatigue (major energy loss), shoulder/neck muscle attack (my head fell forward uncontrollably), severe mobility problems, difficulty in swallowing and anger management. This last one might sound a bit strange but I found that if I became annoyed about anything then the energy literally drained out of me.
After visits to GP and BUPA consultant, I was hospitalised 6th – 28th April 2007 for a large no. of tests. As I was unaware just how serious this disease is, my consultant’s comments remain with me to this day –“this is not a trivial condition you have”.

3. Diagnosis/Medication

Tests carried out in hospital were:-
Numerous X-Rays,CT scan, E.M.G., Biopsy, M.R.I., Lung function , E.C.G.,
Video fluoroscopy X-ray, U/S heart scan and many blood tests.
Following the results of the above tests, the doctor advised me they were looking at Polymyositis/Dermatomyositis as the cause of my condition. I was prescribed prednisolone (steroids) and Cyclophosphamide. I remember saying to my brother and sister-in-law ‘I think this is a bit more serious than I thought it was’.
On the 28th April 2007, I was discharged from hospital. By this time, I needed help to arise from bed, dress, wash etc. and my wife kindly put up with me for next 6-9 months.

4.Recovery

From May 2007 onwards , I had regular visits from Occupational Therapist, Speech Therapist, Dietician, Physiotherapy Nurse,Incontinence Nurse and weekly visits to GP Surgery for blood FBC and CK tests.

Make use of any gadgets provided e.g. Neck collar, Tubular frame for bed, Step-up boards, Shower stool, Pulley system, Board game –hoops on sticks, and Sock stick.
Physiotherapy exercises are very important and extremely beneficial. These can be minimal to begin with and even only once, twice or three times a day but the important thing is to do them with a gradual build up. (Do one of them last thing at night before you go to bed). Even everyday events are good physiotherapy e.g. washing, making the bed, opening drawers etc.but you must take your time.

I seemed to benefit greatly from HYDROTHERAPY even just walking in water and light exercises.

Anger management is important because I found that if I got annoyed about anything (examples), any energy I had just drained away from me so try and control your emotions and stay calm.

My weight was now approaching 50Kgs (8 stone) and I was due to undergo a gastrostomy operation when on a visit to hospital one of the senior physiotherapists (Mr. Dave Boskin) advised me “ If you think you are going to cough – don’t—Swallow”. Within 48 hrs, my swallowing had improved and I began to put on weight. 1 week later, my operation was cancelled. I believe this to have been a combination of the drugs and physiotherapy

5.Conclusions

It is vitally important not to let this condition get one down. One must keep going/trying and to think positively. Keep doing your physiotherapy exercises however minimal.
Also, one’s reactive strength is likely to be very low, so one must be very careful to avoid falls.TAKE CARE IN EVERYTHING YOU DO.

Maintain an interest in a hobby/activity to keep your mind active. My own interests are philately and horseracing.

After 18 months I have recovered to a degree ( I estimate 40-60% of my original health) but obviously we are looking at long term drugs.

My CK blood levels have reduced from 9000(nine thousand) to 500-700(five to seven hundred)

Although improvement is slow/long term, never give up because the important point is that RECOVERY is possible.

For those of you using the internet check out STANS POLYMYOSITIS web page which is very useful/helpful in describing how Stan (a gentleman from Memphis Tennessee USA) coped with the condition.

6.Questions

If anybody has any questions, I would be happy to answer them as best as I can.