Jane: Email me privately. I am not familiar with this particular disease but I do know a bit about medical research and how to get decent care for elderly people.
The first thing you need to understand is that anyone who has been diagnosed with a life threatening illness needs a "designated bitch" to intercede with the for profit health care system. That may turn out to be you.
The second thing you need to do is help your father resolve to take responsibility (with your help and the help of other friends and family members) for his own medical decision making. Doctors should be given no greater deference than any other technical person, they are humans, not gods, and ALWAYS ALWAYS always get a second, third, fourth, fifth, etc. opinion.
The next thing you need to understand is that there is a tremendous amount of information on the internet about all things medical. You need to read everything but be sophisticated about who is publishing the information. Seek out innovation (www.medscape.com; and medline (need to use portals to get to medline, email me privately and I can send you some) but beware of quacks. Do net searches for clinical trials (google is a good place to start). New treatments that work are rarely discovered by the doctor, they are almost always found by the patient or the patient's advocate.
The good news is that your father's disease has a constituency, meaning an organization. I did a quick search for you and found this:
http://www.psp.org/ Its a good place to start doing research on treatment alternatives, clinical trials,care issues, and finding support in your community.
Above all else: Resist the urge to infantilize your father because he is sick and elderly. Infantilization of the elderly and disabled is a major cause of suffering and death. Just because someone has a severe physical disability does mean they have lost their intelligence. There are a world of new technologies out there to help the disabled retain much of their independence, including activities of daily living (eating, reading, watching TV, dressing themselves)and in communication.
Finally: Do not EVER allow an HMO or an insurance company to become the arbiter of your father's care.
You will learn to be less polite and more pushy. Pushiness is literally a lifesaver when someone you love is sick. Do not take NO for an answer.
You can email me at:
[email protected]