Carol’s Journey – IBM
I’m a busy and relatively healthy 69 year old living on the Sunshine Coast. My husband and I have shared a very happy life together since we were 16 and 18 years of age.
We live an ideal lifestyle. Our home is a wonderful apartment with ocean views and we have our 2 fantastic children and our 5 grandchildren living within 10 minutes. Our family is very important to us, but so is our other life, travelling Australia in our caravan.
Before retiring in 2014, we worked 24/7 in our business. I walked daily and enjoyed a period of working with a personal trainer at the gym. I have always kept busy and since 2016 have practised yoga up to 3 times per week in addition to my walks on the beach.
Over the years I noticed my legs weren’t as strong as they could be. Step ups, getting up from a seated position and stairs were getting difficult. So in 2019, back to the gym with a personal trainer who expressed concern about my leg strength and asked if I’d mentioned this to my doctor. No I hadn’t, I thought I just needed to work harder.
Intense leg work however meant that after leaving the gym my legs were like ‘jelly’ and wanted to buckle as I walked.
In 2020 Covid put an end to our gym sessions. I kept up with my yoga practise and walks on the beach, even challenging myself up and down stairs to our apartment on Level 5. Hand railing on the staircase increasingly became a necessary and reliable support.
2021 was a year of more pronounced change so I told my doctor about my leg weakness. She was concerned that I had been putting up with this for so long without mentioning it to her. I thought it was just weak, skinny legs with poor muscle tone and probably my fault for not doing enough exercise.
After arranging hip x-rays to dismiss any issues there, I began physiotherapy. I was keen to find out whether daily physio exercise along with my yoga and walking would help to improve my leg strength.
As the year progressed however I was getting worse instead of better. My list of difficulties was getting longer –
Weakness became muscle fatigue, stiffness in thighs, buttocks & lower back
I needed to concentrate when walking and could no longer walk fast
Walking on uneven surfaces or down an incline was difficult
I started falling over, legs buckling
I had difficulty getting up from sitting without using my arms
Impossible to raise from a squat, needed arm strength to get off the floor
Stairs became a nightmare, going down worse than up
After a consult with a sports physician, further blood tests, CT scan and MRI of lumbar region I was referred to a neurologist. A nerve conduction study, electromyography, and physical exam were undertaken and MRI of brain and leg was arranged.
Although my scans and MRI’s showed nothing significant, my nerve conduction study and electromyography showed something was wrong with my leg muscles. My neurologist’s working diagnosis at this stage was Inclusion Body Myositis and so referred me to a neurosurgeon for a thigh muscle biopsy.
Though this procedure was a day procedure conducted in March 2022, it was a lot more invasive than I anticipated. After 2 weeks of limited activity and discomfort I recovered with no problems and waited for my results. In May I found out my muscle biopsy confirmed Inclusion Body Myositis.
With no cure or medication to treat IBM my options are to maintain existing muscle through exercise – physiotherapy, hydrotherapy, yoga and keeping active. Walking has become increasingly difficult with my legs tiring after as little as 200 metres. My activities within the home have not really been impacted enough to stop me from enjoying cooking, cleaning etc. The neurologist has however noticed that my forearms are now showing some evidence of weakness.
The positive of my diagnosis at nearly 70 years of age is that perhaps I might keep my mobility for the remainder of my lifetime….I hope! No guarantees of this though.
Another positive is that I remain active and don’t have any other significant health issues that affect my mobility.
