My Illness

My Illness

What Is ALS/MND?

Motor Neurone Disease (MND) is an all embracing term used to cover a number of illnesses of the motor neurone.Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), Primary Lateral Sclerosis (PLS) are all subtypes. MND is the generic term used more in Europe whilst ALS is sometimes used more generically in the USA.

These diseases are also known as Maladie de Charcot, and are often referred to in America as Lou Gehrig’s Disease, after the famous baseball player who died of the disease.

ALS/MND is characterised by progressive degeneration of the motor cells in the brain and spinal cord. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe and swallow. With no nerves to activate them, muscles gradually weaken and waste. Its symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing and breathing. In most cases it does not affect intellect, memory or the senses.

Progress is relentless and generally rapid, with a life expectancy of between two and five years from the onset of symptoms.

Though it can affect anyone, ALS/MND is more often found in the 40 to 70 year age group.  Once thought rare, it is in fact quite common.  There are nearly 120,000 cases diagnosed worldwide each year.  That is 328 new cases every day!  The impact on the community of ALS/MND is usually measured by the incidence and prevalence of the disease.  Incidence is the number of new cases added in a defined period, usually a year.  Prevalence is the number of cases existing at any point in time.

The incidence of ALS/MND is 2 per 100,000 of total population, while prevalence is six per 100,000 of total population.Research has found that the incidence is higher in people aged over 50 years.  Only 10% of cases are familial (inherited) with the remaining 90% sporadic.

The disease affects each individual differently and can have a devastating impact on family, carers and friends.The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability which, in turn, require increased levels of support.


My Personal Strugle

So how did it start with me?

Around summer of 2010 I started to notice weakness in my left hand. I noticed this because I used to play guitar, I had been playing for 8 years. The weakness wasn’t normal. I carried on as normal. Then in September I had to stop playing guitar. Then I started my degree and had a fall while playing football, which injured my knee. This meant that I had to stop playing football and other activities like the gym. I thought my knee would heal but it didn’t, which was unusual, and progressively got worse along with my hand. I started to attend physiotherapy in January 2011. They couldn’t work out what was wrong for 6 months, during this time I finished my first year of Uni. During summer I went to a Neurologist who had me assessed by 6 other Neurologists and ran lots of tests. I was finally diagnosed with MND/ALS in the summer of 2011. 

How far has it progressed?

My whole body is now useless. My hands and legs are useless for everything. Typing is impossible without computer access technology. I get painful cramps all the time, annoying twitches all the time, severe weakness and stiffness. My breathing, jaw and throat muscles are mildy affected. This makes talking difficult. Chewing and swallowing are very mildly affected.

How does it affect me emotionally?

Honestly? Up and down. I have good days where I think I can manage this. I can study, I could become a theological/philosophical Steven Hawking. Then I have bad days. The days where I hate life, doubt everything and just want to give up. There is research to suggest that people with this illness can have hyper sensitive emotions. Basically you may laugh/cry at things that aren’t funny or sad. Though I’m uncertain how much this affects me.

How does it affect my intellect?

It doesn’t. Though in some cases it is reported that Frontal Temporal Dementia has developed. I hope I don’t get that.

What do I hate most about it?

That there is no escape from it. That I will never have the life I could have had. A life I wanted.

*Update* 22/12/13

I now have a ventilator machine for at night as the muscles around my lungs are significantly deteriorating…

I hate this…