Jill’s Journey – IBM

I first noticed the weakness in my right arm in 2015.  Neurologists did tests and thought the problem came from my spine and I even went to see a back surgeon who then sent me back to neurology.  After many more tests I was told I had motor neurone disease and had between 6 months and 3 years to live.  I was referred to a MND clinic and had regular visits there with neurologists, OT and Physio for three years.   Then my present neurologist said he wasn’t sure I had MND.  He got muscle biopsies done and I was diagnosed with Inclusion Body Myositis.

I have always been an active person, a keen gardener and played sport. After retirement I took up golf. I have moved from a large two story house into a unit and now just have a courtyard garden to potter around in.  I do pay to get some gardening done for me.  I had to give up golf about 18 months ago and now have joined a croquet club.  With my muscle weakness I can’t hit balls very far and just enjoy playing socially.  I can use the mallet like a walking stick if I feel weak.

About three years ago my index finger on my right hand stiffened and I was unable to bend it.  Since then two other fingers on my right hand and the index finger on my left hand have also stiffened which often makes it difficult to grip objects.  I find coffee shop mugs easier than cups and wine glasses easier than water tumblers.

I walk now with a walking stick as the muscles in my legs have also weakened.  I find steps and stairs difficult.  I order my groceries online and pick them up from the supermarket where they put them in my car boot.  My weak arm muscles cannot lift heavy items so I carry a few at a time into my unit.  I do very simple cooking and have gadgets to open jars, chop veggies etc.  I am an avid reader and use the local library.  I get a newspaper delivered every morning and enjoy doing all the puzzles in it.

In the past year I have started to have difficulty swallowing and have changed my diet a little to moisten foods(toast is out!) and have a glass of water with meals.  I have recently had immunoglobulin infusions to help with swallowing and maybe muscle weakening.

I went to the Myositis conference in Adelaide in 2019 and found it most interesting.  I would recommend anyone with Myositis to attend the next conference.  I had been doing exercises here with Physio and found them very similar to those physio Helene Alexanderson from the Karolinska institute, Stockholm showed us at the conference. I was told that all I could do to help the progression of IBM was to exercise so that is why I never miss a day exercising.  It takes me over an hour every day and I do them in short sessions because of muscle fatigue.

I think it great that there is a Myositis Association in Australia.  There is much to learn about living with Myositis.