ALS is an unmerciful disease which places the patient and his/hers relatives in several difficult situations. Life has to be lived to its full extent in spite of the worst possible prospects. The continuous adaption to new disabilities is a strain - for the surroundings as well. Relationships alter both in the private and the social spheres…the list goes on and on and is as unpleasant as it is long. It can be tough to face it all.

On the other hand ALS is merciful. It does not hurt and you don’t feel ill. To some extent the losses can be compensated for. But above all: ALS allows us to preserve our mind, feelings, and senses. We are still capable of being in control of our lives and we can acquire the knowledge which qualifies us to make decisions that are vital to the progress of the disease and to our quality of life.

These decisions are for example: acceptance or rejection of aid remedies, feeding tube or not, openness or denial, and position on the question of ventilator and other breathing remedies.

Do not take it for granted that your MD will automatically inform about your options. Firstly, very few doctors know anything about ALS-breathing problems and secondly some doctors are afraid to confront us with these issues, because they don’t think that we can cope.

My viewpoint is like this: If I am able to handle the knowledge that I suffer from a disabling and terminal disease then I am also ready to deal with a knowledge that improves my general well-being and prolongs my life!

Taken from my friend Birgers site

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http://home20.inet.tele.dk/heaven/en/index.htm