Many people have recently taken part or sponsored others to undertake the Ice Bucket Challenge in order to raise funds for charity.
The challenge first gained widespread exposure in the USA in support of Amyotrophic Lateral Sclerosis (ALS) – the American term for Motor Neuron Disease (MND). After one ALS sufferer was given the Challenge by US golfer Chris Kennedy, former Baseball player Pete Frates promoted it on social networking sites. This resulted in the immense participation of sportspeople, celebrities and the public.
Unlike some other serious conditions there is still no cure for MND and the main medication, Riluzole, extends life expectancy by only a few months. Funding for research and treatment of MND is miniscule in comparison to many other diseases. Compared with other serious conditions such as cancer and neurological conditions such as Alzheimer’s, dementia and Parkinson’s Disease, very little about MND is reported in the media. I have seen no leaflets or posters about the disease in hospital neurological departments.
The purpose of my letter is to try to raise public awareness about this illness and the best way that I feel that I can do so, is to briefly share with your readers my experience of caring for my late wife who passed away last October after being diagnosed with MND approximately six months previously.
Many in the early stages of the condition are misdiagnosed as having an ear, nose and throat problem or suffering from strokes. This may create false hopes of recovery for families before it becomes apparent that something else is wrong.
Within a few weeks of eventually being diagnosed, my wife lost the ability to swallow food and drinks and had to be fed through a tube. This was soon followed by loss of speech, muscle degeneration of her limbs and breathing difficulties.
To watch her body fail her in this way, was the most horrendous and traumatic thing that I have ever witnessed and is ever-present in my thoughts.
There is still very little known by many medical professionals and nursing staff about how to care for those with MND. Often, a great deal of the burden falls on families to inform health care professionals even about things as simple as not laying a person with MND flat in bed which can make breathing more difficult.
Only with better training and understanding by GPs, consultants and nurses about this disease, will sufferers receive accurate diagnosis of their condition and appropriate treatment. The MND Association is an essential source of information and assist sufferers and their families by sending people to train hospital staff.
For more information about the work of this organisation please go to http://www.mndassociation.org/
I would very much like thank everyone who has kindly participated in the Ice Bucket Challenge or donated to this cause.