MND diagnosis? There’s much you can do in the way of social activity and recreation to make this difficult condition more bearable.
Motor-neurone disease (MND) is a rare and incurable condition that, over time, damages parts of the nervous system, and causes weakness and muscle wasting. The disease occurs when motor neurons (specialist nerve cells found in the spinal cord and the brain) stop working properly.
As the condition progresses, people with MND find the following bodily functions increasingly difficult. Later, they become impossible to perform:
An estimated 1,200 Australians are currently diagnosed with MND and about 400 new cases are reported each year. Because there’s very little available in the way of treatment or a cure, having MND may seem like a hopeless situation.
However, there’s no reason why you can’t still enjoy many of the activities you enjoyed before for a very long time. In fact, it’s important to stay involved in as many “normal” activities as long as you can. Enjoying fun activities with family and friends is an important way to thwart depression – a condition that’s closely associated with terminal illness.
Experts recommend just slightly modifying some activities as your body starts to change. An occupational therapist and, possibly, a physiotherapist specialising in MND will be able to help you with this, whereas family, friends and caregivers will assist you once you’re ready to give the adjusted activities a go.
For instance, if your speech is unaffected, you can still partake in card and board games, creative writing or even a round of golf with friends, while someone with limited leg or arm movements can still sing in a choir, read to keep busy or even enjoy fun karaoke nights at home with the family.
So, how can you modify or tailor activities around the stage of MND that you might be in right now?
Cards and games
• Get games with large playing pieces (chess, draughts, dominoes etc.).
• Use extra-large playing cards (they’re available via Amazon.com).
• Invest in an automatic card shuffler and card holder.
• Use an adjustable table or bookstand and a non-slip mat to stop books from slipping.
• Use an e-book.
• A stationer’s rubber thimble or a short wooden rod both make page turning easy.
• Audio/talking books are also a good alternative to paper books. Contact Vision Australia (www.visionaustralia.org) or your local library.
• Use a writing pad instead of loose sheets, along with a non-slip mat, to prevent sliding.
• Felt-tip pens are easier to write with and can be bound with rubber or foam for easy grip.
• Learn to enjoy the internet and all the entertainment it offers – one of the advantages is that the keys require minimal pressure.
• Computers are also great for communication – via email, Facebook or Skype, for example.
• Use your computer to shop online.
• Consider blogging and interacting with other terminally ill people.
• Maintain links with local clubs and keep up to date with events that interest you.
• Depending on your mobility, continue to participate in the sport of your choice. Alternatively, become a spectator.
• Gardening is a good way to spend time outdoors.
• A day at the beach or near the pool can be invigorating.
• And parks are great for picnics and outdoor barbeques. The good news is that many have wheelchair access.
REMEMBER: Leisure and recreation is important for all people. With this in mind, activities should be fun for both the sufferer and the caregiver.