Living with MND
If you or someone in your family has recently been diagnosed with Motor Neurone Disease MND it is likely that you are experiencing many confusing and confronting emotions.
Good quality information and support from people who understand MND, and its impact are vital at this time.
MNDSA Support Explained
The MND community is extensive, committed and immensely supportive. Information Sessions and Peer support groups are held regularly with options for virtual attendance. We can also work together with other care providers such as staff at the MND Clinic, local health professionals and community care providers to assist people with MND to live as independently as possible.
While there is much still to learn about MND, the team at MNDSA know the MND journey, and its impacts are different for everybody.
MNDSA has many resources available to help you and your family understand what MND is. MND Explained is an easy-to-read downloadable booklet about MND. Physical copies of the booklet are available please contact MNDSA. We also have programs that can assist to connect you with other people who are having similar experiences as you.
Your MNDSA team will comprise of Support Coordinators, Occupational Therapists, and Allied Health Assistants. Our team are on hand to help clients, and their families deal with evolving physical needs such as:
- Mobility
- Energy
- Breathing
- Sleep
- Maintaining body warmth
- Pain, stiffness, and cramps
- Neck strength
- Hand and arm function
Your team will be able to advise you on strategies and equipment that will help minimise the impact of these changes.
Occupational Therapist (OT) and MND Support Coordinator will have useful strategies and suggestions, and may recommend assistive technology to help with communication including:
- Speech
- Facial expressions
- Hand gestures
- Body language
- Writing
- Typing
Our staff will also be able to provide strategies and equipment that will enable you to have independence for as long as possible and support your families and carers with personal needs such as:
- Going to the toilet
- Bathing
- Washing your hair
- Getting dressed and undressed.
MNDSA have a broad range of specialist care and mobility <equipment> available to you to assist your comfort including:
- Chairs
- Wheelchairs
- Neck Braces
- Beds
Multidisciplinary Care
Your care team will have multiple members collaborating and contributing to your care, each with their own specialist areas. This is known as multidisciplinary care and each member will have strategies and suggestions about how best to manage and minimise MND’s impact, so that you can live as well as possible for as long as possible.
Members of your multidisciplinary team, such as Occupational Therapists, Speech Pathologists and Dieticians will be able to assist with strategies, suggestions, and specialised equipment to help with changes to eating and drinking including:
- Cooking
- Using crockery and cutlery
- Holding a cup or glass
- Chewing and swallowing
- Diet and weight.
Emotional Wellbeing
We encourage you and your family to look after your emotional and mental health. Speak with your General Practitioner (GP) or Neurologist who will be able to help or refer you to the appropriate service if you have emotional needs such as:
- Feelings of anxiety and depression
- Worrying
- Uncontrolled crying or laughing
- Physical intimacy