Until there's a cure ... there's care

"When the future with MND was explained it felt like we’d been hit by an express train"

Joy and John with their MND AdvisorOver the years John and I have spent a lot of time at our holiday home on Raymond Island which is just two hours from our home in Morwell. One of the things we’ve enjoyed there is to ride our bikes around the island. It was after one of those rides that I first noticed the weakness in my legs. As it had been a few months since I’d last done a big ride I didn’t think too much about it, nor the fact that I had difficulty unlocking the front door. On returning home I went to my local GP and after a few tests was diagnosed with Polymyalgia late April 2016. On May 3rd I tripped on a mat in the kitchen at Raymond Island and my head hit the stove on the way down. I had to go to emergency at Bairnsdale Hospital where they glued my cut! A week later I started to limp but as all the blood tests were negative I didn’t have any further treatment.

By this time I’d noticed that I was losing weight (I’ve never been big anyway) was finding it harder to lift things and also noticed that I had a lot of saliva build up. I thought that might have been a result of eating too many Mentos but of course that wasn’t the case! At my November GP visit I had a different blood test that revealed muscle weakness. After another muscle blood test a few weeks later I was referred to a Movement Neurologist. In January 2017 I was admitted to St. Vincent’s Private Hospital for tests which revealed I had motor neurone disease.

Neither John nor I had expected this and when the future with MND is explained it feels like you’ve been hit by an express train. We walked around in a bubble for about a week not knowing how we were going to cope but then we decided that we just had to get on with life as best we could. Fortunately we had been given the contact details for MND Victoria and were encouraged to contact them as they have been supporting people with MND for over 35 years. We were told they would provide us with advice through their information service as well as their MND Advisor, connect us with health professionals and community support in the area and provide me with equipment that would help me stay active and in control of my life.

In the months since my diagnosis I have definitely noticed that I’m getting weaker and that it’s harder to do “normal” things like wash and style my hair, get in and out of my chair, even getting out of bed is a challenge. We rigged up an “aid” for me to lean on when getting out of bed – it was a suitcase on top of a clothes basket! Jenny, my MND Advisor, was horrified when she saw it – especially as it was right next to a floor length window. Straight away Jenny organised a bed-stick for me so now I use that and it’s a much safer option. Jenny also put me in touch with a local OT who came around and assessed my needs. On the OT’s recommendation MND Victoria provided me with a four-wheel walker, electric riser chair and over the toilet frame, all loaned to me without any restrictions on how long I can keep them and at no cost to me. The Association has been so helpful. I resisted using these aids initially but now I can see they will help me stay mobile for longer as well as help keep John and I from hurting ourselves.

My strength is deteriorating as well as my voice and ability to swallow. At first I allowed this to stop me from going out to dinner, unless I could order risotto, as I didn’t want to have to ask someone to cut up my meat. I’ve now decided not to put such obstacles in my way – I want to live as much as possible and I want John and I to create good memories with our family and friends.

I’ve always taken good care of myself – the full make-up, hair and fashionable dressing. Now it’s really frustrating because I find it very difficult to put on my make-up and styling my hair is virtually impossible. John has been very patient with me. At first he would insist on helping me but now he just waits until I ask for help. John does have to help me dress now, particularly trying to put on a jacket and I know that the time will probably come when he has to do even more, but for right now I want to do as much for myself as I can, even if it takes twice as long. It’s been very difficult to let go of the things I’ve really loved doing. I’ve designed and made jewellery and quilts for many years. Reading was not really my thing. Now the weakness in my hands means I can no longer do my jewellery or sewing so I’m learning how to sit and read, or stay in touch with the grandchildren through my iPad. I’ve gone from being a very competent typist to a one-finger typist now because of my muscle loss, but the iPad is good as it’s very easy to use and eventually it can be adapted so I can continue using it even with very little finger movement.

As it’s only been a few months since my diagnosis I haven’t yet had to use too many of the services provided by MND Victoria but it is really good to know that Jenny, our MND Advisor, is there as a back-up. She’s been to see us a couple of times already and is only a phone call away. We can also call the MND Victoria office if we have any questions about the disease, and the equipment team is very helpful – luckily we haven’t had to contact them very much so far. The back up and support from the Association is fantastic and it is very reassuring to know that they have a whole range of equipment that we will be able to access as the disease progresses. We’re also lucky that we’re close to our sons and their families and can rely on them for help as well.

Thank you for taking the time to read my story. Please know that any gift you give to MND Victoria will help someone just like me to live better for longer. Until there is a cure … there is care.

Joy Blakeley

This story was from our 2017 Tax Appeal | Please make an online donation

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