Where can we find practical hope?
To the Editor:
The National Draft Plan for Alzheimer’s Disease is completed and drafts of the Maine Plan for Alzheimer’s are almost complete (LD 859 Task Force), public input sessions scheduled for the end of April, 2012, with the Final Plan due June 1, 2012, at DHHS. Chief Advocate Jill Conover, 772-0115, email jill.conover.alz.org, in Scarborough, and the Alzheimer’s Association team, have done outstanding work on these plans, and deserve awards.
Looking at the expected numbers of people who will be developing Alzheimer’s in the next 20 years, we need to start thinking about novel ways of treatment, possibly using old-fashioned methods to evaluate the effectiveness of the treatments. There appears to be consensus in the medical research and clinical communities that exercise, no smoking, good diet, robust social network, and novel cognitive challenges are almost perfect ways to prevent or delay Alzheimer’s. Yet, for those who don’t take an active role in their health care, we need alternatives.
We need alternatives because underneath the cold statistics are some warm, delightful human beings who need to know hope. Hope that is realistic. Hope that is based on best evidence medicine. Hope that gives courage to those who have watched a grandparent, and or a parent, maybe both parents, succumb to the dark march into not death, but zombie land.
Hope that was missing last week when a Vietnam Vet who returned safely from Vietnam, flew the commercial big jets for over 40 years all over the world without mishap, and fathered four daughters. He recognized his early symptoms, decided he was not going to walk in his father’s footsteps into no place and no time, and blew his brains out. He had no hope, for sure. I miss him. I wished he had called me, at least to talk about hope and why sometimes it makes sense to take prescribed drugs.
Where can we find hope, practical hope? History is a great place to start, medical history, because current established research methods not only take years, but the researchers often make assumptions that all individuals would not trade two years of cognitive clarity for some uncomfortable, possibly dangerous, even lethal side effects of untested drugs. But, some individuals facing Alzheimer's, the number is unknown, would leap and shout with joy at those chances.
Joyful leaping and shouting is what happened when Louis Pasteur discovered an effective treatment for smallpox and a treatment for rabies. Leaping and shouting, with joy and some disbelief, is what happened when medical researchers applied antibiotics to wounded and terminally ill WWII veterans, and brought the comatose and near dead back to life. More recently, AIDS victims in developed countries have moved from a no-hope certain death sentence to a long full life.
Let’s think about using methods that will allow rapid testing of drugs and other treatments, testing that must be done with the full consent and understanding of the Alzheimer’s person, testing that Pasteur would have accepted. To protect those physicians who are willing to test off-label effectiveness of drugs and combinations of drugs, let us develop legislation to protect the physicians and researchers from lawsuits from friends and family or government agencies who don’t understand, who can’t empathize with those who are on a long, lonely path of disappearing human dignity and human rights. A path of no hope.
If we don’t offer these realistic hopes, the brain blow-out alternative will increase.