Speaking of clinical trials, we never did get to Sid's today. The office is still waiting for one more report, so we'll get there sometime this week.
Please check the "Daily News Update" on the home page - www.thealzheimerspouse.com. Click the link and read the letter to the editor by Richard Taylor, Ph.D, the psychologist who suffers from AD. I would like to know your opinions.
Well... to be perfectly frank, I think it's unfair. The letter, that is, not holding out hope.
For one thing, AD is extremely difficult to diagnose, which makes it extremely difficult to study the underlying pathology, and makes it extremely difficult to identify the "right" patients to enroll in clinical trials. It's even difficult to measure whether a given drug is effective, since it's difficult to determine the degree to which a patient is disabled. And then there's the fact that the trials have to last for many months, because they have to determine whether an initial improvement is actually meaningful ... trials are lengthy, that makes them very expensive, drugs have side effects, patients drop out.
On these boards, we've been talking about whether AD actually is a single disorder, or a family of disorders. I'm strongly inclined to believe it's a family. So when a trial involves patients who may actually have a variety of disorders, you may not be able to detect those who benefit -- from a statistical analysis of all the patients in a trial, which is how "success" is determined -- since others with other disorders may NOT benefit.
This reminds me of cancer. We often speak as if cancer is a single disease, but of course, it's not. There are dozens of different cancers, maybe hundreds. How long has the medical community recognized "cancer" as a disease? The oldest description of human cancer was found in an Egyptian papyri written between 3000-1500 BC. It referred to tumors of the breast. Hippocrates is credited with being the first to recognize the difference between benign and malignant tumors. His writings describe cancers of many body sites.
How many of these cancers can we treat ... just enough to delay the inevitable end? How long have we been able to cure any ONE cancer? Do cancer patients complain when the treatments available to them can only delay the inevitable? Do they say it is unfair to give them hope that some day, their type of cancer may be curable?
How long has the medical community recognized "Alzheimer's" as a disease? Since 1907.
How long did it take to find a way to slow down the progression of the disease? The first drug for treating AD was approved by the FDA in 1993.
Aren't we being just a LITTLE unreasonable, to expect an outright cure for such a difficult disease (or family of diseases) in such a few years?
"...The eternal optimists, the career researchers ... see failure after failure as positive progress." THEY ARE. Every last thing that we learn about Alzheimer's IS PROGRESS. A failure gives us new insight into the disease that we did not have before.
"It is not fair to people who have dementia; it is not fair to caregivers. It is just not right to continue inflating this bubble of hope -- that we are getting closer and closer to a cure." So what is he suggesting? That everyone just say oh, well, it's hopeless? That we just stop doing the research? That we put our money elsewhere, maybe into new treatments for cancer?
We ARE getting closer and closer. We just don't know which idea, which little piece of data, will be the breakthrough that we need.
I agree with everything Sunshyne said after her first sentence - that the letter is unfair. I think that Mr. Taylor criticized the research and the media reports from the perspective of someone with Alzheimer's who wants scientists to find results that will help him now. It's not surprising that he would have that hope. I know nothing about him other than what Joan said in her post, but I'm curious about his background and the state of his Alzheimer's. He says that what he heard from the conference: "confirmed for me that I can still make sound decisions based on my own thoughts and feelings." Scientists don't make decisions based on "thoughts and feelings." They look at evidence and carefully analyze that evidence using accepted analytical procedures.
I do think progress is being made - and that it isn't being made fast enough for all of us who have a vested interest in the outcome. In the discussion at the end of "The Forgetting" last night, one of the doctors said their might be some answers in five years. The family who had the familial form of AD pointed out that he had told them that five years ago. I too wish the research would move faster, but that doesn't mean that no progress is happening.
The letter sounded like a personal issue to me. He sounds like he realizes that his disease is progressing faster than hope for a cure for him, but as Sunshyne and Janet both said, any research and hope for a cure has really just begun in the overall scheme of things. He sounds depressed, let down and and the same time, angry.
I am excited about the hope on all fronts of the current research, they know so much more now than they knew 5 years ago when The Forgetting was filmed. Look what is going on with Dimebon and Rember and several other new drugs. If ever there was hope it is now. There is so much public awareness happening right now, the media has published recent articles in all the major news magazines, on all news programs, CNN, MSNBC, PBS, AARP, Time, Newsweek-everywhere). People are openly talking about AD at the water cooler, at sporting events, in the stores, it is coming out of the closet. The more this happens the more pressure and funding that will follow!!! I wish it would be tomorrow but realistically it might be within 5-10 years.
My DH has pulmonary fibrosis diagnosis confirmed in 2005). A disease discovered only in the late 1990's and is 100% fatal (like AD) with an average life span of 3 years from diagnosis (diagnosis can only be confirmed by lung biopsy). A foundation group was formed in 2000 to try to get the word out (there are 50,000 new cases diagnosed every year). They have little to no support from government funding with a first trip to vist Washington only last year by a handful of people affected desperate to get the word out. It is SO difficult to get research funding and years and years and years of research to get ANY result.
Cancer is a perfect example of research that has taken decades to get even a partial result. So I remain excited about the AD research.
I did not read Richard's letter but have met him and know some of his behaviors are due to the disease. He is remarkable because, despite his disease, he has been an active and relentless advocate for those with AD. We have to give alot of credit to those with the disease who know their personalities have changed, who know everything they say does not come out like it did when they were well and articulate, but still get out there and do more than their best. People like Richard will drive the hope for an AD cure. It is only in the last few years that the Alz Association has given a national face & voice to people with AD and included them on their board. What has propelled the cause for other illnesses e.g. breast cancer, is that that those with the disease have been able to speak for themselves. With early diagnosis, persons with AD can do the same. We need to cut them alot of slack and praise them for their efforts.
Don't want to sound to harsh but what Richard is doing is better than sitting on the couch watching TV all day.
Actually what happened with breast cancer is that the wife of a president went public about the disease, a lot of families, espeically daughters, got active and the whole thing snowballed. Once there was private money off the wall research could be funded. And they began to discover drugs and methods of caring for people that have not only turned out to cure breast cancer, but other cancers as well.
But mostly it was the early support groups that got the ball moving, fueled by the early survivors. What this disease lacks are survivors, but maybe it will be the caregiver survivors who will get this ball moving. Maybe it is us.
Everyone: Regardless of how you reacted to Richard Taylor's most recent posting, I encourage all of you to read his postings (which I think are labeled by month on Joan's link) for insight into our loved one's struggle. I have heard Dr. Taylor speak twice and have met him, and he's unusual in that he not only has insight into what he is going through, but what it is doing to his family and friends, AND, can articulate both! My DH has no insight into what this disease has done to our family, nor the ability to articulate what it is doing to him. SO, I read Richard's newsletter (and his book, which is quite good, and well organized/easy to read) when I find myself particularly frustrated with my DH, and it helps me slow down and think about things from my husband's perspective, or at least my best guess at what his perspective is. Anyway, Dr. Taylor can be a little blunt, but his writings have been extremely helpful to my attitude.
Oh, heavens, I'd agree with you, texasmom! He's a remarkable man. Joan once posted one of his essays here, "You Say Goodbye and I Say Hello", and it's words to live by for a caregiver spouse.
One reason I am disappointed by the letter is that this man is an eloquent spokesperson for AD, and he is influential, and I think his letter could do some damage.
I didn't think the letter was "unfair" at all, it is his perspective on a disease that is slowly destroying his life. I think his points were validated. I can certainly understand his disappointments as well. I have heard many many cancer patients complain, my dying uncle was one of them. My father took his life instead of dying the slow painful death his brother did. Hell I complain as there is no cure for me. I remember upon diagnoses all the promises for cures, try this, try that, breaking news…. well I did them ALL, nothing worked. It is disheartening to say the least. (of course that doesn't mean I don't still hold out hope!)
I can understand his frustration as the hopes for miracles are spewed about too easily. I remember when my niece was diagnosed with juvenile diabetes, Lord the things we were told that could cure her. We kept reading everything we could, did trial after trial. It wears you down these hopes for cures. Giving hope is a wonderful thing, giving false hopes over and over can’t help but dampen ones spirit.
My heart breaks for the man, to known daily just exactly what it is happening to him. I can’t imagine what kind of hell that must be! It will be people like Richard who can advocate for themselves who will make the biggest changes. And of course people like Tony and Joan as well!! I would love to go out and lobby for a cure but as we all know, that is impossible for a full time caregiver.
While I DO agree even failures are progress, and of course we all hope for cures for every aliment that afflicts our loved ones - present and future. But, I think it would be better all around if every single new thing found wasn’t spun as a miracle cure. This hype can only lead to disappointment when it fails to do what they promised. IMHO
Nikki, I appreciated your comments. I can't write much now, I have to go to work. Those of us who are still in the early stage of the disease need to get out and advocate as much as possible. The internet is a great tool for those who are homebound. This site is amazing. Joan, I am so impressed with you. Ten years ago I was googling desperately for help. I had given up and was very excited to find this site.
My DH is an active advocate. He can speak from both sides. He was a caregiver to his mom and now has AD. Sometimes I cringe because I don't know what my DH will say as his "filter" doesn't work as well now. I am much more reserved but the disease has propelled me to step out of my comfort zone and open up to people about the day to day effect of the disease on my life, emotions, hopes etc.
I agree with Nikki - the hype surrounding "Alzheimer's Cures" is hurtful. There was a time I spent almost all day on the internet, investigating all kinds of legitimate and quack ideas, only to have my hopes raised and dashed at every turn. Now I don't even bother to read the articles.
Someday I hope, they will find a cure and I believe that any and all reserach into the causes of the disease is to be commended. That said, I would rather see more money spent on just every-day garden-variety HELP for patients and caregivers - even if less is spent or research.
I can't remember all the details, but essentially in 1993, my DH was in the early stages & UCLA asked us to participate in a trial for a drug called Cognex. I looked it up and was frightened by the prospects and possible side effects. They told us it might help stabalize things for about 7 mos and by then something else may come along. But it could affect the liver & if it did it would be stopped immediately. Meantime it was a gruelling series of doc visits, blood draws and exams which I felt would annoy DH and cause me to spend too much time driving, explaining, cajoling, etc for what I saw as little return. So we passed. Cognex is still available but not a drug of choice for AD. About a year later they asked us to participate in a trial for Aricept, same thing, maybe 7 mos and something else might come along by then. DH said he didn't want to be anyone's guinea pig and I agreed. Aricept is now a drug of choice and for some, works much longer then 7 mos, but drugs never worked for DH and I'm not sorry we passed on that one as well. I have always felt that if we don't know what causes AD--and the causes could be many and complex--I'm not confident about all these trials. I do believe that failures are all part of the progress and I admire anyone who wants to participate. But, if you think about it, we do not 'cure' diseases. The best we do is prvent some thru vaccines--but they return if people stop w/the vaccines--and many of today's parents refuse them, other countries don't even use them. We 'arrest' diseases like cancer, but it can and does often come back, and we treat many others so that people live a long time when they would have died generations ago and, hopefully, with a large degree of comfort, always hoping that a cure or prevention is just around the next corner--how does one stop looking--maybe this time! But the disease is still there.
I long ago stopped getting excited about news alerts and people who call to tell me the 'latest' breakthroughs. Altho I do still keep hoping. Even tho DH is gone, they know I'm still involved in the AD community. The 7 mos UCLA told me about has come and gone over and over. The whole topic of trials is very complex but I do understand why so many rush in looking for 'anything' just 'anything.' Get us in a trial, any trial. But Richard is neither right nor wrong, and I give him all the leeway because he's in his shoes and we're in ours. But I do believe that there is far too much media and drug company hype (watch drug company stock go up when the media tells about a new breakthrough), we are so vulnerable and so easily led down a garden path. Of course, there is money in all of this for everybody except us. News broadcasters, magazine & papers get their products sold and their advertisers happy, can't fault them entirely. We need all this research and trials, but it's too soon to hype us. I'm not a medical person, but personally I just don't see any silver bullet in the immediate future but I'll be happy to be proven wrong. But, otherwise, guys, call when you've got something in hand, not still on the drawing board. What it does to us and the Richards among us is unkind.