D (Diagnosis) Day

13 July 2001
The day after....

Well here we are......diagnosis at last.
I haven't made any notes of late but it is time to put thought to paper. I saw Dr M in Brisbane 2 weeks ago and he referred me back to Dr S for further testing to confirm either Motor Neurone Disease or Multi-focal Motor Neuropathy. Over the past 2 weeks I have tried to avoid the idea that it maybe MND yet many times I found myself musing the fast progression of the muscle wasting and increased twitching. I found myself pleading with God - "don't let it be MND".

Monday I had a troubled sleep and found myself praising God for a miracle. Driving to Brisbane yesterday, as much as I preferred to receive a diagnosis of MMN, I seemed to be thinking how tough it must be for the Doctor to tell me I have MND and there is nothing they can do for me. Finally, we are in his room, Dr S examines me one more time; reads his notes; checks the MRI scans and eventually tells me,"well the scans are clear and we have talked about 2 possibilities. The tests I did on Saturday show a problem with the nervous system, the blood tests don't show any antibodies....what we are looking at here is Motor Neurone Disorder".

i hear Darryl's gasp as he tried not to cry. I felt the tears come to my eyes but I fought to hold them back...be strong...Lord now we are poised for a miracle. I vaguely remember speaking this out aloud at one stage and the Doctor agreed. He offered for me to have the immunogloblin treatment "intragam" to which a accepted. He then asked which local doctor will I be attending so that he can contact him to arrange for my healthcare team. After we asked a few more questions, unable to get any idea of a time frame, we left desperately trying to remain composed......

Outside my wonderful husband hugged me. All I wanted to do was get out of Brisbane, go home to our own secure world and pretend for awhile that everything was okay. That was not easy, so we pulled into mum's driveway and presented our biggest smiles....then my heart broke. My beautiful mum who has always been there for me had to listen to her second child tell her she has Motor Neurone Disease with a life expectancy of 27 months.

How cruel is this? Just 10 years ago my darling dad died with cancer; my only brother became a paraplegic as the result of a motorbike accident; now this beautiful lady has to face the prospect of her eldest daughter becoming a quadriplegic and probably dying a premature death.

Cruel...yes, but it's not what happens to you - It's how you handle it!