Cheryl Fong – Motor Neurone Disease patient
I was told it was probably familial MND and that I should see one of two specialists in Sydney. My husband and I knew what the implications were for me so we found ourselves in the car park shocked, weeping and immobilised. We were falling apart.
Fortunately for me we got an appointment with Professor Dominic Rowe at Macquarie Neurology the next week. He put us back together again with his warmth, humanity and straight talking. The MND Clinic at Macquarie University brings together all of the health professionals who can help us to manage our symptoms. It makes it possible for each patient to have coordinated action plan.
I have been living with MND for over two years now. For how much longer who knows? I can no longer speak or eat normally it is hard to keep trying to interact socially. I am fortunate that my lower motor neurones are hanging on so that I can still walk, garden, cook for my husband, family and friends. I am even still able to snorkel which I am passionate about. One thing I know for sure is that my journey so far has been made more bearable by Dominic and the team he has assembled at the Clinic with the purpose to help his MND patients live the best life possible.
In my case I have lived a very full life since being diagnosed. Despite the rapid onset of bulbous MND to my upper body I have maintained capability in my limbs throughout.
With some illnesses a positive mindset and a preparedness to endure radical treatment may win the day. MND is not like this, and I concluded early in the journey that I needed to live with the disease rather than “fight” some battle I was destined to lose. The reality is that MND always runs its course and you don’t survive but it doesn’t mean that you have to give up on life. In fact in some ways the MND diagnosis provides opportunities to enhance the life you have in ways you could not have dreamed.
This is my point about living with MND rather than battling against it. You use your energy to live the life you can rather than trying to maintain the life you had.
Cheryl passed away on Monday 09 September 2013 at her home in Narooma with her husband and family by her side.