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23 July 2010

Posted by DMC on 23 July 2010 in Diary |


I learned something today, about MND, which has puzzled me for some time and that is, how Prof Hawkins has managed to survive for so long.

Indeed, it is a question I am  asked frequently but I merely repeat what I have been told myself in the past, and that is what he has a different strain to that which  I have. However, having read a very interesting article in the ALS newsletter about a young man called David Jayne, in the US, I am now led to believe it is all to do with ventilation due to the failure of the muscles in the diaphragm which operate the lungs. It seems that  “A minority of patients, 10%, or fewer, opt to prolong their lives through surgery which allows them to breathe through a tube inserted in their trachea and connected to a ventilator. With “venting” they may live for years or, like Jayne or the famous physicist Steven Hawkins, even decades

Of course, there are various stages before one gets to such invasive surgery. For example, a face mask or vents inserted into the nostrils. In fact, a friend of mine actually plays golf wearing this contraption, disconnecting his oxygen bottle before each stroke. Then there is the invasive surgery involving an insert which stimulate the muscles in the diaphragm.

Millions of people, with or without MND, know Prof Hawkins, and may have asked themselves what  quality of life can be enjoyed by someone like that who, it appears, cannot move a muscle. I know how frustrated I get with my relatively minor disabilities. David Jayne, who contracted the disease when he was 27 and is now 49. He bravely decided to survive for the sake of his two children. He cannot speak or move his body, except for one finger and a few muscles in his face. He eats through a feeding tube, inserted just above his belly button.

He is wheelchair-bound and cannot to perform even simple tasks without the help of others. Apparently he has a Bluetooth -enabled   sensor in his jaw which enables him to use his computer and communicate with friends and others. According to the article, other people, in the latter stages of ALS, can type or speak electronically by directing keys to the cursor with their eyes in what is called an eye gaze system. (Costing between $15,000 — $18,000)  There is apparently an even more  bizarre device, currently being researched, for use when even the eye muscles fail, that it is hoped will create a brain – computer interface that will translate electrical activity within the skull into dialogue when users concentrate on characters on a monitor.  It all sounds very fascinating and something of which I must not lose sight. That is if ever I find myself that disabled and being prepared to carry on. Who can possibly say how one would react under such circumstances? (I am grateful to journalist Anya Martin, Market Watch, for this article entitled High-Tech tools are a lifeline for ALS patients.)

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