Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

Many more adventures to be had

18 March 2021
Melanie Louden

A “zombie-ish” moment in the lead up to a major solo art exhibition led to Judy Smith’s ocular myasthenia gravis diagnosis. She writes about living with the condition and her love of life. 

Judy is pictured in her studio working on an oil on canvas work titled 'Home Sweet Home in Covid-19'.

Hello, my name is Judy Smith and I live in Gisborne. In 2016, when aged 70, I was diagnosed with ocular myasthenia gravis with complexities.

I am a trained artist and my career was lecturing in the Scottish art schools and developing my own work in ceramic sculpture. I had to retire from this in 1996, on medical grounds, due to fibromyalgia and chronic fatigue. 

In 2003 my husband Jim and I emigrated to New Zealand and became permanent residents in 2005. We have family who live in Auckland and they have been a great support to us both. The two grandchildren are a delight.

I continued practising my art but changed to drawing, painting and printmaking as they were less physically demanding.

It was in 2016, while gathering work for a major solo exhibition at Tairāwhiti Museum and Art Gallery, that I became unusually fatigued and what I called ‘zombie-ish‘!

My eyelids wouldn’t stay open and my speech was slurred. 

Initially I put it down to nervous exhaustion, but after struggling for about a week I went to my GP who sent me to A&E at Gisborne Hospital. They quite quickly diagnosed ocular myasthenia gravis.

I was then sent to Waikato Hospital after a particularly bad crisis, when my breathing was hampered, and I ended up on a ventilator. I was in the Neurological Unit for a few weeks having tests and they diagnosed I had complexities.

These complexities are numb toes on both feet and sometimes very sore toes, muscular problems, breathing problems etc.

I love life and my attitude is to have as many stress-free activities as my health allows.

My husband Jim has been an amazing support. 

Activities that I can pick up and put down, as needs must, are important. 

About two years ago I created a charity project for myself, where I would design 10 greetings cards and make numerous fabric dolls, depicting aspects of myasthenia gravis. They all have a slight humorous side to them!

These are ongoing but suffer from long spells of inactivity due to health hiccups.

In fact, the fabric dolls haven’t started yet. But they will. I was lucky enough to gain $500 from the Bradley Jenkin Memorial Fund which helped me buy equipment for this project.

Hopefully I’ll gain more momentum this year. It all depends on how many viruses and infections sneak into my system!

Judy Smith and her cat Mr Pip. 

For the first few years I really struggled to keep my head above water, as my neurological input was very sporadic and I became allergic to all the myasthenia gravis drugs I was offered.

Two years ago I linked up with a neurologist called Dr Stuart Mossman, who travels to Gisborne Hospital every few months, and he has given me more stability and found a new drug called rituximab which is given intravenously. 

This drug and Dr Mossman have given me confidence and with the help of blood plasma infusions on rare occasions, I’m nearly bouncing!

Life has to go on and the more you put into it the more you’ll get out of it.

Dwelling on your ill health can be very negative. I love people, and when I feel a bit isolated, I pick up the phone and arrange to meet a friend. They will not always come to you. You often have to make the first move. People can get fed up with ill
health.

I’m aware that I’m getting older and that gradually I’ll have to slow down, but there is life in the old dog yet and many more adventures to be had!

* This story was originally published in the Autumn 2021 edition of In Touch  magazine. 

For more information please contact:        
Melanie Louden 
Communications and Marketing Advisor 
Muscular Dystrophy Association of New Zealand 
027 509 8774 
[email protected]