CAROL'S MND

Motor Neurone Disease is a progressive disease that has a degenerative effect on the neurological paths. Basically it attacks motor neurones (upper and lower) and this stops messages from the brain getting through to the body – so you can no longer move your arms / legs / hands / feet etc. This lack of movement / loss of mobility leads to muscle wastage in limbs that are no longer being used. Similarly the impact on the throat leads to loss of speech, difficulty swallowing and breathing problems.

There is no cure.

So - at the age of 44 Carol’s just been diagnosed with an incurable disease – nobody says the word “terminal” because nobody discusses dates – MND doesn’t have dates like that you see, it’s you against the disease to see how long you’ve got. I suppose a lot depends on which type you are unlucky enough to develop and how healthy you were before the symptoms appeared. The age you’re diagnosed at doesn’t seem to make much of a difference from what I’ve seen / heard / read.  

I only ever looked at 2 sites for information – the NHS website and also the MNDA – Motor Neurone Disease Association – the MNDA would become invaluable in many ways in future times of need. These sites will tell you there are 4 main types of the disease and a sufferer can develop one or all of them to differing degrees –and they all have differing effects on the body and vastly different life expectancy periods.

Carol would develop the major symptoms of 2 of these types over the progression of the disease – these were already clearly visible at the point of diagnosis and the further development can only be viewed as rapid. Carol has been affected by:

Amyotrophic Lateral Sclerosis (ALS) – the most common form of MND. There is a weakness and wasting of limbs – this may start with the person noticing they are tripping when walking or dropping things. Average life expectancy 2 to 5 years from onset of symptoms.

Progressive Bulbar Palsy (PBP) – affects around a quarter of those diagnosed. Speech may become slurred and swallowing difficult. Average life expectancy 6 months to 3 years from onset of symptoms.

I’m sure there are elements of the other 2 types within Carol’s symptoms somewhere – PMA and PLS - but they will make little difference to the overall effect as on their own they tend to be more slow to develop and life expectancy can be much longer. Unfortunately Carol clearly developed the main type and things would begin to change in line with the symptoms of this.  

As I’ve said the main purpose of this blog is to record Carol’s journey and I plan to go through the progression on a timeline in the following blog posts. What you will see is that by November 2010, just 16 months post diagnosis, Carol would only retain movement in her left forefinger and thumb, as well as being able to turn her head slightly (with the support of a neck collar). Carol had also completely lost the ability to speak and there would be a steady deterioration in her swallowing that would ultimately lead to PEG feeding.