Sunday Mar 22, 2009

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Hi all,
It saddens me to say that my Uncle has been diagnosed with Motor Neurone Disease. I have no idea how long he has left to live. he is in the prime of his life and has 2 small children and wife. They will all be lost without him.

What saddens me more is that he is on the other side of the world and I can't get to my family to offer support or to see him before he degenerates much further. I am saving my ass off at the moment and working as hard as I can so that I can get over to see him before it is too late.

The best thing I can do right now is focus on him being able to live for longer than the next 14 months. I wish the economy was not so fucked because I could be over in Scotland right now seeing him. My mother is a wreck as she too is stuck here at the moment. My family is banding together so that we can get over as soon as possible to offer our support and to spend some quality time with him while we still can.

To my friends I am feeling a little fragile and I need you more than ever now, I need your hugs and your happiness. I need to come and see you all this weekend so that I can escape into your veil of fun and laughter. Thank you all for being there for me over how ever long it has been. You are all special......and i mean ALL! I love you very much. biggrin

The below information is about the diseases.


Motor neurone disease explained

SPOILERS! (Click to view)

Motor neurone disease often begins with weakness of the muscles of the hands or feet. It eventually leads to generalised paralysis. People with motor neurone disease need help with daily activities and have a life expectancy of three to five years after their diagnosis.

A variety of physical effects
The physical effects of motor neurone disease (MND) can include:

Weakness or muscle wasting this is often first noticed in the hands or feet
Difficulty swallowing or slurred speech
Muscle twitching
Cramps
Emotional instability, depression
Fatigue, pain.
Causes are unknown
The causes of MND are unknown but worldwide research includes studies on:
Viruses, toxins, genetic factors and immune factors
Nerve growth factors and chemicals which control nerve cells and allow them to communicate with each other
Growth, repair and ageing of motor neurones.
Effects of motor neurone disease
People who have MND will have:
A potential to develop generalised paralysis
Loss of speech and difficulty swallowing
A dependence on others for all aspects of day-to-day activity
An average life expectancy of 3 to 5 years after diagnosis.
Needs arising from motor neurone disease
As MND progresses there will be:
Increasing pressure on carers as the physical needs of the person with MND change
Escalating need for assistance for the person with MND and their support network
Emotional pressures associated with a worsening disability this includes the stress of being cared for.
There is no cure for motor neurone disease
The drug Rilutek (riluzole) has been demonstrated in clinical trials to show a modest extension of life expectancy, and works best in conjunction with support from a multi-disciplinary team of health professionals. Rilutek is available on the Pharmaceutical Benefits Scheme.

Costly and unproven therapies are sometimes recommended by well-meaning people. People should seek professional advice before embarking on unproven therapies.

Coping with the physical and emotional effects
The Motor Neurone Disease Association can help people to cope with the physical and emotional effects of the diagnosis by providing:
Information about MND this includes information about experiences that other people have found helpful

VIEW 10 of 10 COMMENTS
scotty:
hey, do you reckon you guys can pick us up from Toowong on Saturday? We'll be there visint some people, and Ash and i have absolutely no idea where to go to get to sushi frown lol
lior:
haha raaw

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