By Carolyn Hutchison, Bendigo
I was a stay at home single mum with 3 children aged 5, 7 and 9 in 2003 and my youngest was recovering from cancer treatment. I had left my husband in 2002 while my son was having his treatment. During the time from 2003 to 2012 I went back to TAFE to study Information Technology, Business, Business admin, Project Management and Education Support completing all courses with Qualifications. I was accepted into Diploma of Children’s services for 2013 however could not afford the fees to study and was attending compulsory Job Network Training as well as working 3 days a week in a Pizza shop washing dishes, taking orders and doing some kitchen work.
I first noticed symptoms while working in the pizza shop, I was having difficulty holding things like the pen to write orders. My fingers would cramp while stirring food on the stove and it was becoming difficult holding dishes to wash and dry them. My legs would cramp numerous times of a night when I was trying to sleep and I would get tingling and numbness in my fingers, especially in my dominant right hand. Visits to my GP proved fruitless as every test came back fine.
In August 2013 I secured a permanent part time job at Brumby’s bakery and my hand deteriorated more. The muscles were wasting away and I lost the use of my thumb. My GP sent me to the local Neurologist (who I had seen for Ulnar Nerve issues previously) and the more invasive tests began. I had EMG’s which showed no blockages, I went to Cabrini for a second opinion which determined I did have muscle atrophy which was clearly visible and it was slowly spreading into my forearm. Both neurologists agreed to try IVIG (intravenous Immunoglobulin) treatment for 3 months looking for Multifocal Motor Neuropathy (MMN). This treatment did not help and I was sent for an MRI and a Lumbar Puncture which also provided no insight. I visited my local Neurologist again on June 1st 2016 and was diagnosed with Progressive Muscular Atrophy (PMA) which is a slow progressing form of MND. I left the specialists confused and not knowing what I was meant to do next.
I got home, started searching the internet for some answers and was coming up with very little, when I found MND Victoria’s site and decided to message them. If it were not for you I would have had no idea where to go or who to speak to. I gave up working on August 22nd 2016, 3 years to the day from when I started as it was the repetitive twist tying bread bags that had affected my hand.
My PMA still remains slow but it is spreading to my other limbs. I am still able to do most things, it is just more awkward now and very frustrating. I can’t express how grateful I am to MND Victoria and especially Eric my Regional Advisor for all the support, care and invaluable information you have provided me since my diagnosis.