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

By Creighton Parker

My diagnosis was in March 2017. I must have presented with classic MND symptoms, as on my first visit to the neurologist and within 30 minutes, I was given the sad news. I didn't know much about MND but I have learned a lot since then.

The first thing I learned was that on average from diagnosis to death was 28 months, that of course was a shock and very confronting. Even at 66 years old I felt indestructible, especially as I had been very fit and healthy for my entire life.

Nearly 3 years on and I am still going ok. Eating normally, sleeping ok but now unable to walk and the feeling loss of the use of my fingers and my hands along with reduced lung capacity. I am fortunate to have some strength in my arms and shoulders. What you learn as you gain more knowledge of your MND is that no two people travel the same road. The disease can manifest in different parts of the body, at variable rates of decline, and there seems to be no real way of understanding how your symptoms might unfold into the future. It speeds up, then plateaus for no apparent reason.

It goes without saying that having the support of family and friends is critical to your well being, comfort and mental health. I am extremely fortunate to have such support and every day I am very appreciative of the people around me, especially my wife, Judy who is my 24-hour carer. I also get personal care for an hour each morning through my Aged Care Package.

As time progresses it is also important to be aware of, and understand, the support you can receive from external organisations. MND Victoria has provided me with equipment to meet my changing needs. From day one, MND Victoria has been a phone call away to provide a helping hand. I also get support from Eastern Palliative Care which helped facilitate and drive my application for an Aged Care Package which we now fully utilise, along with some "non medical" financial support. The medical profession at all levels has been wonderful.

Making an early application for Government support is really important as these processes are usually complex and can take considerable time. Reasonable levels of "on line" skills can be handy to help you undertake these tasks. Advocating for your self and your situation is also important. For those under 65 the NDIS is the place to start, if over 65 the My Aged Care is for you.

MND is a difficult prognosis to deal with especially if you are relatively young. To give encouragement to others,  I have tried to think of the positive opportunities and outcomes I have discovered whilst under this dark cloud. Being as positive as possible has helped me to cope with my situation. I definitely appreciate how modern equipment contributes to making life easier. Motorised wheelchairs*, shower chairs*, a hospital type bed for more comfortable sleeping. I have a B-pap machine to assist my breathing whilst lying down and sleeping. Modern technology has been so necessary and helpful.

We had a ceiling hoist installed to allow me to be lifted and transferred from bed to chair etc. It has been a great investment and has made caring for me so much easier. My ability to stay at home for as long as possible has been considerably enhanced because of the quality and functionality of the modern equipment I have access to. My advice to others is to plan in advance and, if you are able, get these aides in place before you really need them. Of course your Occupational Therapist and medical advisors would need to be there to guide you in this regard.

Another positive I draw upon is access to TV, Foxtel, Netflix and other online sources of entertainment. I enjoy classical music and discovered, much to my delight, terrific music on YouTube. An online subscription to a daily newspaper, online books, email, casting from my android tablet to the TV, so many forms of entertainment that keep me stimulated and are accessible from my wheelchair. If needed, find a tech guru to help you with these things.

I enjoy regular visits from family and friends and the affection shown to me by so many has constantly lifted my spirits. Of course there are days that are hard, but they are few and far between. Of course every individual is different and will have different ways of coping with their disease.

There is no right or wrong about how you should feel. MND is a dreadful disease, incurable and difficult to accept. If I were to give some advice, then that is to remember that those who are caring for you are doing their best, and might be just as stressed and worried as you.

All the best to those reading this article. I hope the road you travel is as kind as it can possibly be.

 

*Equipment from MND Victoria

/Gary's%20Volunteering%20History

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