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I have lived happily in Brown Hill since 1984. I had my first attack of MS in 1989, when we had just introduced my eldest daughter into the world. That is when I first noticed some strange things happening. I would be speaking on the telephone and holding it in one hand and my daughter in the other (on my left side) and my left hand would commence shaking violently. As I was worried about dropping her, I made an appointment to see my General Practitioner, who, in-turn, referred me to a specialist and commenced me on anti-epileptic medication. I was given a possible diagnosis of Encephalitis with a secondary diagnosis of MS.
I was always quite fit and healthy. I used to run around the Lake several times per week. I successfully paddled ten Murray River canoe marathons. I had just completed the Melbourne running marathon. My family and work life were excellent and everything was great. I felt 'on top of the world'!
Following my second ‘similar attack’, I was informed that I had MS. I was visited by a neurologist from Melbourne who informed me that I had to accept the fact that my athletic days were finished and the only exercise I would be doing is mowing the lawn. I still mow the lawn, but have a ride-on mower now, so they might finally be right.
I distinctly remember this and was determined to prove the neurologist wrong. At the same time, I had to accept the diagnosis.
Looking back now, we are almost thirty years down the track. I have had an interesting and dream lifetime. I have been very lucky as my right-hand side is still strong. I walk with the aid of a stick and use a wheelchair for distances. I possess great life-time friends and family.
Simple things such as using a walking stick and wheelchair were initially hard to accept. I still get embarrassed if someone I know sees me in the chair, as they tend to look worried because they think I’ve deteriorated. I see myself as very lucky as I am able to get around and still have my IQ.
Since my diagnosis, I have completed a Graduate Diploma and Masters Degree, Diploma of Education and Training and Diploma of Training Development and Design. I was able to keep some interests.
I was lucky enough to receive a Public Service Medal for services to mental health rehabilitation in the Grampians Region in the 1995 Queens Birthday Honours. It was nice to get some recognition at a relatively young age.
I kept working, but reduced my time to three days per week, as I was becoming very fatigued. I finally succumbed to MS, leaving work in 2008. At that stage, I was 49 years-old but still believed I had something to offer. But what?
With my employment, I was linked to the 'Victorian Dual Diagnosis Initiative', with which I have continued to be in contact. I remember, at the time I left, the manager of the education arm of the service said to me, what I still regard as the greatest compliment anyone has ever given me, and I remember it to this day, “I know your body is stuffed but your mind is still one of the best in the land in this area so we don’t want to lose you. We want you to look after our online training”. I did that role for many years.
A few years passed by and I was re-diagnosed with 'Secondary Progressive Multiple Sclerosis' which meant I was not going to get the regular attacks of MS which usually resulted in a stay in hospital, but just a slow deterioration of symptoms.
A few years ago, on a train going to Melbourne, my life took another turn. A lady with whom I previously had worked was now working with the Department of Health and Human Services. She convinced me to register for the National Disability Insurance Scheme (NDIS).
I finally did this and following much research and discussions with the program staff, I found the NDIS provided support to people with a disability (which I finally accepted I had), their families and carers. I found I was more easily able to access all services, such as health, education and things I didn’t even know existed, i.e. enabling a greater access to community services. This enabled me to maintain supports, such as family and friends.
What was more interesting to me was some of the objectives of the NDIS. They include supporting the independence and social and economic participation of people with disability. I found out that this was exactly what I wanted. I only wanted to feel that I was of use to the community and I always believed I could still work. I have always been and hope to continue with this independence. But I questioned how could they do this so I didn’t feel like a welfare recipient and say good bye to my independence.
I was informed the the NDIS staff would help by providing reasonable and necessary supports, including early intervention supports. They enabled me to exercise choice and control in pursuit of my goals and in the planning and delivery of my program. I self-manage the funds.
I have been assisted to return to some voluntary and casual work by being provided with some 'Assistive Technology' supports which help with my mobility. For example, a motorized wheelchair with right-handed functions. I have also been provided therapy supports such physiotherapy which is helping to kept my body moving and occupational therapy (OT). The NDIS also provides support that helps to maintain our home, instead of my wife and family doing it. Finally, assistance is provided to maintain our social and community participation. So, I don’t feel totally useless.
I am unable to complain in any way about my eighteen months with the NDIS. I have received help and support I didn’t know I needed. I never wanted hand-outs, but through the NDIS I am now receiving the required supports to continue. I can honestly say, from my experience, it is A+. I can now see a future.
I must acknowledge the support of my wife, who, for most of our married life has put up with the many symptoms of my having MS, including changes in my well-being and mood. These unfortunately go with the seasons and fatigue. I also thank my three girls who have only known me with MS, my siblings, along with my brothers in-law and extended family, for my magnificent ramp, previous gardening and house maintenance, and all my friends. Last but not least the NDIS for providing me with a future.
To be eligible for the National Disability Insurance Scheme (NDIS) you must:
For enquiries about the NDIS: Central Highlands Local Area Coordination Service – a Latrobe Community Health Service, is a partner with the National Disability Insurance Agency (NDIA) delivering the NDIS across the Central Highlands Region (LGAs: Ballarat, Ararat, Pyrenees Shire, Moorabool Shire, Golden Plains Shire, Hepburn Shire).
Loretta Beardmore: Area Manager
Email enquiries: central.highlandsLAC@ndis.gov.au
Please view https://www.ndis.gov.au/communities/local-area-coordination.html for information about Local Area Coordination
Central Highlands Early Childhood Early Intervention Service – a Latrobe Community Health Service is a partner with the National Disability Insurance Agency (NDIA) delivering the NDIS across the Central Highlands Region (LGAs: Ballarat, Ararat, Pyrenees Shire, Moorabool Shire, Golden Plains Shire, Hepburn Shire).
Karen Boehm: Area Manager
We will assist families to determine the right supports to help meet their individual goals.This may include:
Email enquiries: central.highlandsECEI@ndis.gov.au
Please view https://www.ndis.gov.au/ecei.html for information about Early Childhood Early Intervention
All Enquiries: Phone: 1800 242 696 press 1 – your call will go through a call centre – you will be directed to the appropriate regional office.
Community Development and Capacity Building Coordinator, Local Area Coordination Service
Central Highlands National Disability Insurance Scheme LAC Partner