Ron’s Journey – IBM

I used to play football and was known for my running speed but, at 43 years old I discovered I couldn’t run. That was in the mid 1990s. 

Progressively over a few years I realised that I was losing strength. In 1998, I bought a pushbike to try to improve my quads. I would ride most days and although felt fitter I wasn’t getting stronger. Little adaptations were made to continue riding. I’d gauge the turn of the traffic lights to avoid putting my feet on the ground because I couldn’t stand up in the bike seat to accelerate from the lights. 

Frustrating and confusing things started to happen. Numerous falls occurred and things would drop out of my hands unexpectedly. 

In 2013, I then went to a doctor and fortunately was diagnosed quite easily. While my GP hadn’t heard of IBM he carried out a number of preliminary tests and referred me to Dr Nicholas Crump neurologist in Victoria. On seeing me walk into his room, Dr Crump immediately said ‘I think you have IBM. Will do some checks and you will also need a muscle biopsy for confirmation’.  

I’m 68 years old now and spend most of my day in a wheelchair. I’m glad I can still walk if I hold onto something because it’s important for transfers from chair to bed or toilet.

Luckily I haven’t had any major setbacks. One fall in the bathroom behind the door was notable. My Apple watch rang 000 and showed my location, making it easy for the ambulance to attend. Being hauled out from behind the door was more challenging and has revealed that 2 entry points to the toilet would be beneficial. 

My decline seems to have been slow and continuous. Previously vigorous gardening was a big interest and I had a major involvement with planting everything in our garden.  It gives me a great sense of achievement to look outside and see all the things I planted  But, overtime I progressed from using a normal shovel, to a recovery shovel and then a trowel. To split my winter firewood I’ve had to move from an axe to a wedge and hammers. Now I have a new interest of building remote control vehicles. I love it. My brother helped me set up a good little workshop.  It’s still frustrating when I drop things, but building sizeable cars and semi trailers. has given me a new lease on life. 

I’ve never had a problem accepting everything that’s happened so far on my IBM journey. I try not to think about having it – I’m just cohabiting with it. It walks beside me and we have jousts during the day. More of an opponent who might trip me up rather than an enemy.  If one path has been blocked I manage to find another path. If I can’t use a piece of equipment, I sell it off and find something I can use. I research and plan in advance to be prepared for the next phase. 

The Black Dog visits for a pat every so often and I get down.  I get myself over these periods by talking online, giving a friend a call or calling a helpline. The helplines are great. They don’t get burdened by my problems or not want to talk about them – it’s their job. 

Access to disability funding through the NDIS should be great but the very things that should make life easier often give grief. Changes in OT’s and providers, approvals and supply delays can mean that budget allocations usually expire unused. The patient has little voice in the process and NDIS employees assume they know best. I’m currently in the midst of long waits for an improved wheelchair and bathroom renovations. Along the way, I’ve bought equipment online through 2nd hand sites. Fortuitously some equipment came from an IBMer. I’m never bored and never get lonely. I don’t need to go outside my yard. I shop online. I Call friends, have friends visit, listen to my wife’s golf exploits, watch some TV and tinker in my shed.

I’m passionate about end of life planning and advocated to the Victorian Parliament for assisted dying laws. Having made a written submission, I was invited to speak to the Parliamentary Committee. Unfortuately at the time of my meeting, the rules hadn’t been formulated. Ultimately, the terms of the legislation which was passed are likely to make it difficult for me to qualify. – End-of-life choices 13 August 2015.pdf

Ron Henney 2022.

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