It’s been a tough year since diagnosis and i have eventually put some personal thoughts to paper.

I’ve always tried to see the positive in every situation. What is mine now i ask? Well, it might well be to assist others now that are less fortunate or pass on my experiences to help make a difference.

Lets take a step back. I made a decision shortly after diagnosis to just live one day at a time and not worry too much about what lay ahead for me. Sam, my wife and saviour was adamant right from the start that we do a renovation to our house to accommodate a downstairs bathroom and lift to get me up some stairs. Her timing was perfect and has made my daily life so much easier. Forward planning is so important and will transition you into the next phase. One of the biggest challenges i am faced with, is and will always be my mind. Every new day is different from the previous one. You have new thoughts and new challenges that come your way and you need time to process and overcome them. It is not always easy but having a good support structure around you and a positive mindset helps a lot. I keep myself very busy which helps me as a coping mechanism.

The progression happens when i least expect it. I woke up one morning and I was no longer able to stand or use my crutches. I had to get a wheelchair and the process from when you start doing your homework until when you finally receive it is around 1 to 2 months depending on your specifications. When choosing a wheelchair the mobility company will come to your house and take all your measurements as well as your own personal needs such as what wheels you want, or what type of backrest you prefer. Be careful you don’t get carried away by all the options as the price of your wheelchair can increase very quickly.

I had to purchase a transfer board once i lost the ability to stand and this makes transfering form one position to the next relatively easy if you have assistance and still have your upper body strength. Make sure you choose the correct length so that you have more that enough space and don’t risk falling becuase it’s too short. You will use this board to transfer into your car as well so it becomes very important.

Something which a lot of people don’t like talking about but is very important is the business side of the disease. I’m talking about your will, businesses, bank accounts, and things like your passwords for all your banks cards, Netflix etc. There really is so much to consider when you have these discussions so make sure that you don’t rush this process and get a financial advisor involved to assist you if need be to map out your “financial side” to make life easier for your spouse or next of kin.

Be prepared for good and bad days, i have a bad one every now and then. We are not perfect after all and you have every reason to be edgy or cross or tearful. Motor Neurone Disease is very frustrating and i’m sure your support structure will understand when you have these moments.

Regards Grant