What Is Motor Neurone Disease?
Motor Neurone Disease is not curable, there is no defined treatments, there is no medications proven to work for every persons… It is the most inhumane, disheartening and cruelest disease I have ever come across.
What is Motor Neurone Disease (MND)?
Firstly there are four different types:
ALS which is the most common and affects all motor neurones of the body; upper and lower. It is where the muscles seize, reflexes are overactive and your neurones are slowly dying off. This affects EVERY ability you have in the body. the ability to breathe, to talk, to walk, to keep your heart beating. It is terminal. This is the type that is commonly referred to as MND
Progressive Bulbar palsy (PBP) is a mixture of bulbar palsy and pseudo-bulbs palsy; these affect the muscles of speech and swallowing. Primary the throat muscles and the lower part of the brain neurones are affect, but can also continue on to affect the lower limbs too. PBP affects about 25% of people diagnosed with MND.
Progressive Muscular Atrophy (PMA) affects a very small portion of people and has a very slow rate of progression. It causes damage to the lower motor neurones, affecting your walking ability and later can lead to clumsiness of the hands. Described as a muscle weakness illness.
Primary Lateral Sclerosis (PLS) is again a very rare form of MND, only causing weakness to the lower limbs. Some people have shared that they experience clumsiness in speech and hands. BUT with this type, life span can go back to normal; however a very small number of cases develop into ALS and becomes terminal.
On average there is 150 people diagnosed with MND every year in New Zealand, with 400 living with this disease at one time. It is estimated that 122 people die every year from MND, with 2011 statistics showing that for every 202 deaths, one was caused by MND. Reading the numbers you can see that lifespan is short. Some people are known to pass away within weeks or months of diagnosis, some diagnosed early are given a couple years.
Every day a person wakes up with MND they are losing more and more of their motor neurones, those connective circuits that tell your muscles how to work. Every day is unfortunately a step closer to no longer being here and that fact is traumatising to families.
I personally have worked with my father who had ALS; no cure, no medications proven to help, and a very very short life span. BUT I have also worked with people who have had PLS too! Both illnesses crippling people, but one doing so for what little life you have left.
So at Neuro Touch we give back to families who have been affected by MND. To help those who struggle with this cruel disease. Unfortunately MND is how we begun, but we will continue to carry on helping and assisting others to olive their best lives through the story of Stubby West.