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18 | InTouch WINTER 2024 15 years ago, Julie first started noticing symptoms of her condition. Having had rheumatoid arthritis for 30 years, it took some time for Inclusion Body Myositis (IBM) to be diagnosed as a cause for Julie’s muscle loss. It wasn’t until 2020 after being tested through a neurologist and a muscle biopsy, Julie was diagnosed with IBM. Julie, based in the Hawke’s Bay, told In Touch , “I am working on gratitude and optimism on what is possible with the diagnosis, while trying not Julie Cumberworth says living with IBM has taught her a lot about life and learning to accept the present. Learning to live with my new reality manipulating pens, keys, buttons, pulling handles, and firmly grasping handshakes; deteriorating to loss of mobility and managing personal care. “When I was diagnosed, I found it very hard to come to terms with as there is no known cure, and the progressiveness of the condition and inevitable loss of function was quite daunting. I find that deeply connecting with people I love and moving as much as possible is the best medicine for dealing with IBM.” Julie’s idea of bliss is walking the Julie, a new member of the MDANZ, was made aware of the Association by the hospital neurotherapist. “I have loved meeting others with conditions at the coffee groups and have enjoyed building a relationship with my Fieldworker, Debbie”, she explains. “The IBM support group meetings are also great!”. Despite her challenges, Julie’s warmth and optimism is evident and it’s clear the key to her happiness is acceptance. “We all arrive on this planet seeking companionship so find the people who resonate with you,” she says positively. Julie is learning to adapt to the symptoms of her condition around the home too and says, “it’s a learning curve of making terrible mistakes, and dealing with the most ridiculously awkward situations!” Above: Julie at home in her garden. to be overwhelmed with the grief of loss of function.” Julie’s life has always been busy and full of creativity which she is also learning to adapt too. A passionate weaver for over 40 years, Julie now finds creative solace in sewing and knitting. Her optimistic attitude is clear, “I am learning to relate to my own life story and my connection to others.” For members with IBM, the weakness experienced may be variable and can be both proximal and distal. It typically presents with hand and forearm weakness accompanied by thigh and upper leg muscle weakness. Finger functions can become very impaired, such as for dog down the riverbank or faffing around in the water – either in the sea or Ocean Spa. Thankfully with the support of friends this is still possible. Julie is learning to adapt to the symptoms of her condition around the home too and says, “it’s a learning curve of making terrible mistakes, and dealing with the most ridiculously awkward situations!” Julie uses a walking stick most of the time now and has taken to using a scooter when out to avoid fatigue setting in which makes her prone to trips and falls. “I’m working at maintaining fluidity and acceptance of change and associated feelings of grief.” YOUR CONDITION IN REVIEW