FA10 this is a much better approach than the other thread. I do not have ALS, but and the wife and care giver of someone who has. I agree that PALS & CALS should speak up, and be heard. We had to go through a very difficult appointment with my husbands ALS doctor, who basically said to forget about the DSP, and that going onto a vent will definitely extend his life, but at what cost. Canada does not advocate the use of DSPs in the use of ALS as it is a disease that is progressive, where a high quadriplegia is not. I agree with your statement that the ability to feel and communicate the development of a pressure sore is an advantage, thus will decrease some of the complications of this disease.
My husband and I have a unique situation, as he is an American veteran living in Canada, which means that we may be able to go to Seattle and have a DSP implanted if he qualifies. He has not decided whether he will choose to go on a ventilator as yet, and this could possibly give him time to be more sure. There is equipment in the US that is not available in Canada, but thankfully the VA has been very good to us.
I must now tell you that I am a member of the medical community and it is hard to hear that "we don't care." Maybe you wouldn't consider an RN as someone in that field, but I do. I have given my life to helping people, and would give my right arm if it meant that my husband would not die of this horrible disease. I spend every spare minute that I have researching what I can to help my husband. I know that there are abuses in spending money that is collected for research, as there are abuses in money given for aiding orphans in other countries, or taxes given to the government. There seems to be very little accountability to those who are perpetrating the mishandling of money, all around the world. What is the answer? I am not sure, but I would happily stand up and be heard.
The problem with dealing with certain diseases IS money. Who pays for the research? The people who develop drugs are not doing it out of the goodness of their hearts, it is for profit. There is not much money to be made on a drug for a rare disease, so then the brunt of the money that goes into research for rare diseases must come from the government, who gets it, by taxing the people. The price of technology is rising exponentially and may not be self sustaining. Do I like that? Not a chance! I have lost a brother to cancer, and actually facilitated a chemotherapy program in the hospital that I worked in, so that I could be involved in the system, and be there to learn. I went to the conference held for the oncology doctors working in the field. I found that they were very dedicated, and did care about curing cancer. I was able to contact the head oncologist for our province anytime I wanted, and he was willing to come to our hospital to address issues that I had with our program.
This reply is way too long, but I want to communicate that medical people are just as vulnerable to the diseases of man, so it is contrary to their best interest to waste their time. But there is always people out there that are ready to exploit something if it means monetary gain, and I lay that squarely on the pharmaceutical companies, and some fund raising executives.
Paulette