Newly Diagnosed – MND and Me Foundation

Newly Diagnosed

Being diagnosed with Motor Neurone Disease can feel extremely overwhelming. It will take time for you, your family and friends to deal with the news. Having access to factually correct information about the disease, services and supports available during this time will assist you process the diagnosis.

It is very natural to have questions like:

  • Why me?
  • What causes MND?
  • What symptoms should I be looking out for?
  • How do we explain this to the children?
  • Where can I go for assistance?

Our recommendations for a person who is newly diagnosed with MND:

  1. Call the MND and Me Foundation on 07 3394 5333 for an introductory chat. You may also like to call in to our office at the MND Centre between 8.30am to 5.00pm Monday to Friday
  2. Please register with the Foundation by completing this Contact Form and Consent Form and returning them to services@mndandme.com.au 
  3. Please like our Facebook Page as we use this to provide research updates, announce support service initiatives and publicise events
  4. Reliable, practical and up-to-date information about MND is critical. We highly recommend the following websites:
  5. Please register with your State MND Association:
  6. The presentations below are extremely good at explaining Motor Neurone Disease:
    • Newly Diagnosed – Dr Robert Henderson
      Dr Robert Henderson is a senior staff specialist in Neurology at the Royal Brisbane and Women’s Hospital and The Prince Charles Hospital, an Associate Professor at the University of Queensland, and conducts private practice at the Wesley.
      https://www.youtube.com/watch?v=3O1Q4MgVmNw&feature=youtu.be
    • What Causes MND – Ammar Al-Chalabi
      Ammar Al-Chalabi is Professor of Neurology and Complex Disease Genetics at King’s College London, and a consultant neurologist at King’s College Hospital, London, UK. He is Director of the King’s MND Care and Research Centre – an MND Association endorsed centre of excellence – combining a world class multi-professional specialist MND clinic and a research team of international standing. He was awarded the prestigious Sheila Essey Award in ALS from the American Academy of Neurology this year. His research focusses on understanding the causes of MND and how they relate to the different ways that MND affects people.
      Ammar Al-Chalabi’s research team has identified or helped identify most of the known gene variations involved in MND – recently completing the largest ever genetic study of the condition. He now co-leads the international Project MinE consortium, aiming to completely sequence the entire genomes of 15,000 people with MND. He also leads a European consortium, STRENGTH, using genetics, population registers and environmental questionnaires to identify subtypes of MND.
      http://qbi.uq.edu.au/event/2016-peter-goodenough-memorial-lecture
    • Other useful videos of information sessions provided by the Foundation can be found HERE

Useful Information

Videos 

We have prepared some useful videos containing interviews with people living with MND covering what they have learnt and advice they would like to pass on to anyone newly diagnosed or those who want strategies to assist in dealing with living with Motor Neurone Disease. 

The interviews are very personal accounts, they are not medical or clinical.  They cover topics such as:

      1. The emotions you will go through once diagnosed
      2. Strategies to get through the day
      3. What you can expect – disease progression and milestones
      4. What to do next once diagnosed
      5. What not to do next once diagnosed
      6. Telling the world
      7. Dealing with family and friends
      8. There is support, you are not alone
  1.  
  2. The videos can be accessed by clicking these links: 

Documents

Here are some useful documents for you to download.

      • Helping you keep track – we recommend using this document when you talk with your medical/ clinical care team, NDIS or My Aged Care Teams, Spark Neurocare and all community based service providers. 
      • Useful contacts – In this document you will find a number of key organisations to contact if you have MND or are caring for someone with MND. 
      • Who is Who – A handy guide to care providers and what services they can assist you with. 

 

Voice Banking

Voice banking is a way for you to record and store your own voice to use at a later date when you may have trouble speaking. You record your voice and then the sounds are broken down to create a synthetic version of your natural voice. After you record your voice, it can be used on a smartphone, tablet, computer or other communication device.
It is important to start as early as possible, so that any future changes in your speech will be avoided and the voice you record will sound the most like your own, original voice. It can be very upsetting to think about possibly losing your voice. If you would like to give voice banking a go, try not to wait too long before starting. Please remember – not everyone looses their voice. More information and the Guide can be found HERE.

 

Motor Neurone Disease Research

If you would like to participate in MND Research you need to speak to your Neurologist or General Practitioner. Around Australia there are various studies and drug trials underway. It is important to realise many of these trials and studies have strict inclusion and exclusion criteria and the sooner you become involved in research, generally the better your chances are of being selected to participate.

          • Key Research Websites

            • ALS Untangled is a free online tool that offers reviews of some off-label treatments by researchers and scientists. To read the reviews and listen to podcasts on treatments by Dr Rick Bedlack, visit the ALS Untangled website – http://www.alsuntangled.com/index.html
            • The Motor Neurone Disease Research Institute of Australia (MNDRIA) is the research arm of MND Australia. The MNDRIA was established in 1984 as a national organisation promoting medical and scientific research into MND. The organisation has been driven forward by the vision to understand the causes, find effective treatments and discover cures for MND. https://www.mndaust.asn.au/Discover-our-research.aspx