A diagnosis of motor neurone disease (MND) is a challenging milestone for anyone to face, but understanding the condition is an important first step toward managing and planning from the early days and as the condition progresses. It’s also important for carers and people closest to the person to be well informed about MND and to receive advice and support from the outset.
The Motor Neurone Disease Association of WA (MNDAWA) is dedicated to supporting people living with MND and their family and carers. They are an important first point of contact following a diagnosis.
Medical treatments and therapies
Although there is no cure for MND, it’s important to be aware that certain therapies and treatments can help address effects of the condition and maintain quality of life. Your neurologist will discuss such treatments with you. There are medications available to help with the symptoms of MND such as cramps, constipation and muscle spasms.
A medication called Riluzole has been approved in Australia for the treatment of MND. Riluzole treatment has provided positive results for some people by extending the median survival rate and/or delaying the onset of more advanced symptoms.
You may hear about alternative treatments for MND, whether by word of mouth or the internet. Speak to your treating physician before you try any treatments that are unproven by medical science. The International Alliance of ALS/MND Associations has published a policy statement on alternative treatments.
It can be very beneficial to join the various support programs available for people living with MND and their carers and families.
Whether talking to someone one to one, or in group sessions, the opportunity to discuss your challenges and concerns, exchange advice and tips and just sharing a cup of tea or coffee with someone experiencing the same condition, can make a positive difference to your outlook.
Equipment and therapies for people living with MND
Physiotherapists and occupational therapists can assess your condition and needs and provide therapies and assistive technologies to help enhance your day-to-day living.
Mobility aids can help you get around at different stages of your condition. These devices range from walking sticks and frames to wheechairs and hoists.
Other assistive technologies can help you maintain your range of activities from communicating to reading and using a computer.
For day-to-day self-sufficiency, modified cups, plates and cutlery are available, along with special cushions and chair supports.
A physiotherapist may develop a program of exercises to perform in a gym or at home to help you maintain your range of movement of the joints, reduce stiffness and discomfort.
MND and driving
You may be able to continue driving after a diagnosis of MND. It is advisable to check with your treating physician.
The Department of Transport of Western Australia requires drivers to report certain medical conditions. It may be necessary to undertake a medical assessment before your licence is renewed. To find out if you are required to report a diagnosis of MND, check with the Department.
It is advisable to notify your insurer of your condition.
If you’re living with MND, MSWA’s multidisciplinary team of physiotherapists, speech pathologists, dietitians, occupational therapists, counsellors and social welfare specialists provide a wide spectrum of services and support to help you get the most out of life.