In this chapter, I only speak of my personal experience, though I know other people with a tracheotomy. For ALS patients, respiratory failure is due to diaphragm paralysis. It is impossible to breathe with a paralysed diaphragm. So the paralysed muscle must be replaced by a machine that does the same work.

 First signs of respiratory failure : the first signs of suffocation occurred in the evening and prevented me from working. Even when I did not work, I had difficulty to get my breath back, and needed to have the window open in order to feel better. Gradually, suffocating happened earlier in the day time, and in the beginning of January 1999, I could not work more than ten minutes on the computer before feeling unable to do anything any longer, I was so breathless that I had to have the window open, though it was freezing outdoors. The same happened at night, and I slept very badly. All my energy was concentrated on breathing.

 The choice : when one is in this state of suffering, it is impossible to choose between tracheotomy and cemetery, between surgery and a great quantity of morphine that makes you sleep and never wake up. You have to consider the problem earlier and take your decision before suffering. I did not choose, my husband chose for me, and I think it is the way it should be done, for nobody wants to die, but nobody wants to be a dead weight.  Letting the patient choose, means choosing death. Because once you have a tracheotomy, mucus are formed in your trachea that have to be drained off. It is very simple to do it for those who have their hands, but impossible for paralysed people. So ALS patients with a tracheotomy need to be looked after day and night, for this need to be drained can happen at any time. The person who decides to choose for or against a tracheotomy has to know that an ALS with a tracheotomy is a very heavy responsibility. Once you have the tracheotomy, nobody will switch you off, even if life is unbearable.

 Surgery : the operation lasts ten minutes, under local anaesthetic. So it is a mild operation. But after that, you have to get used to the ventilator, because you try to breathe, in other words, to stimulate the diaphragm, even though you should let the ventilator do the work, so the machine races out, and you get worn out. Even when you are used to it (for instance when you have temperature), you will maybe fight against the machine, instead of letting it go, not holding its movement up.

 Keeping after : as I already said, it is the main problem of ALS patients with tracheotomy. Apart from the problem of draining off the mucus, the ventilator can detach itself from the cannula, and then you cannot breathe. It happens quite often to me, and once I nearly died, because Bernard was somewhere in the house, and I could not reach the alarm with my foot. Horrible suffering ! 

Recent problems : in spring 2005, I suffocated once more in the afternoon, and as in January 1999, I could not work, but this time, blood tests were perfect. No need to give me oxygen, it was incomprehensible. My lung specialist, well informed on ALS patients, gave me oxygen, and it worked. She said that certain of my air cells were stuck together, which explains my great difficulty to breathe. Giving me oxygen makes bigger pressure, and unsticks air cells. Now I have a new ventilator that can get more pressure, but I still need oxygen, I suppose pressure is too weak. Another problem occurred in November 2006, but only in Paris, not in the mountains of the Jura, at 950 meters high. Early in the afternoon, I felt breathless, the opposite of suffocating, and it was impossible for me to activate scanning, so I could do nothing but watch television. Once again blood tests are perfect, we still have not found a solution.

 Conclusion : life with tracheotomy is possible for paralysed people, even recommended for those who have kept an activity, and specially for those who want to live, in spite of the difficulties of that horrible disease. No need to be scared of surgery nor of being attached day and night to a machine, you will rapidly forget it. For me, tracheotomy was real relief. And do not wait for the last minute, as I did, it will avoid you great sufferings. Get your decision very early, it is not when you are suffering, that you can decide to live or to die.