About my parents ALS

ALS  is a condition which causes a deterioration of the nerves controlling muscle activity, leading to a wasting of muscle tissue, progressive weakness, and eventually a loss of function in any part of the body which involves muscle activity. The disease does not affect brain function, so the sufferer remains mentally aware and active to the end, though trapped in an exhausted and failing body.


ALS typically progresses through a series of stages where only certain muscles and limbs are affected for some time, effectively a 'plateau' which the patient may be able to adapt to if that plateau continues for long enough. For example it is quite common for ALS initially to affect only the legs, allowing the patient time to adapt to the use of a walking frame or wheelchair. Similarly the disease may sometimes first affect the voice, in which case the patient may learn to communicate through a device such as a Lightwriter. Stephen Hawking is probably the best known individual currently living with ALS, and since he has had the condition for almost 40 years he has spent most of his life communicating through a similar device. Unfortunately my parents both had an unusually rapidly progressing form of the disease which made it very difficult to adapt. In general no sooner had one piece of equipment arrived than the condition dropped down one more plateau. The two aids which did see a few weeks' useful service were a Lightwriter supplied by the MND Association, and wheelchairs on loan from the British Red Cross.


In fact the variant of ALS from which my parents suffered was unusual in several respects:

• It struck two unrelated people within one year. The likelihood of two unrelated people developing ALS is almost inconceivably small. The MND Association figure of 1-2 people in 100,000 developing the disease each year would suggest a probability of at most 4 in 10,000,000,000 (10 billion) that two unrelated people would develop it.
  Taking the higher disease prevalence figure of 7 in 100,000 this raises this probability that two unrelated people develop the condition throughout their entire lives to around 1 in 200,000,000.
• Most people develop ALS between the ages of 40 and 60, and it is unusual for someone over the age of 80 to develop it. My father was 78, and my mother 82 when ALS was diagnosed.
• The life expectancy of an ALS patient is typically between around 2 and 5 years from the time of diagnosis, with 6 months being considered at the very low end of the spectrum. Both of my parents survived less than 3 months from the diagnosis of ALS.

Given the extremely small chance of ALS randomly occurring in two unrelated individuals this suggests that there may be a causal link or environmental factor behind the development of ALS in my parents case. Although there has been some research into environmental causes of ALS the majority of research is into genetic factors. I would very much hope that more research into environmental factors of ALS will be carried out in future, along with research into common mechanisms for its development which apply to both genetic and environmental forms.

If you would like to donate to the MND Association, please visit http://www.justgiving.com/PhilipJAWhite