Alzheimer's Patients Describe Life with Disease

And I know Bill, you first were diagnosed with depression or at least the suggestion was that you were suffering from depression.

BILL BRIDGWATER: And Susan, that's another valid point. Doctors don't look at a 48-year old man as a typical candidate for Alzheimer's disease. So, when I explained the symptoms that I was having -- and you fill this out before you go into see your general practitioner, and that's who I saw initially -- the signs pointed more towards depression.

I think James Smith had a similar assessment from one of his doctors, and I was actually put on a depression medication. And the doctor and I both agreed that there were no visible signs of depression. But he believed that the sleep deprivation, things of that nature, might be somewhat typical of a depression, so he was going to treat me for that, and see if that worked. It didn't.

Then we came back and we thought initially it might be traumatic stress, some type of a traumatic stress disorder. But I hadn't been in any environment where I had incurred a traumatic stress environment. So, we ruled that out.

And ultimately it becomes a ruling out of what it could be, to ultimately, in my case, I sought the expert opinion of a psychiatrist, a neurologist, complimented with several tests -- a PET scan, a SPEC scan, a MRI, a CRT, a neuro-psychological battery of tests, or a series of tests that you take over 8 hours, broken into two days. And the combination of all of those testing tools and the compilation pointed to Alzheimer's disease.

And then I went to see a specialist who confirmed that, in fact, I did have Alzheimer's disease.

SUSAN DENTZER: So, James I know you had quite a saga of getting diagnosed, seeing a group of physicians, one from another who thought that maybe you had Huntington's, thought that maybe you had multiple sclerosis -- people didn't really know what you had. Tell us a bit about that.

JAMES SMITH: Well, my symptoms were an interesting mix of symptoms and I think that added to the challenge, and that, coupled with my age.

I had the usual symptoms of memory loss and I was losing documents, and I couldn't perform mental math, but I also lost my sense of smell, and I didn't have much of a sense of time. And then I developed a tremor in my handwriting and had some minor gait problems. So, as all of this sort of progressed, I took it all to my primary care physician, and he examined me and then sent me to a neurologist initially and they did some testing and some imaging, MRIs and that sort of thing.

Because of the movement components they were thinking it might be something like MS [multiple sclerosis] or Huntington's or something along those lines, so they sent me to the University of Minnesota who did quite a bit of extensive testing. And that went on for months and sort of ruled out MS, eventually ruled out Huntington's disease, and then when they sort of got to the end of the movement disorder track, then they referred me to the Mayo Clinic in Rochester, Minn., here. And we went to the Rochester Mayo Clinic which has a specialty unit for memory loss and repeated some of the testing, did some new testing, and through that process -- all of this took about, just about a complete year. But at the end of it, they came to the diagnosis of Alzheimer's.

SUSAN DENTZER: One viewer wrote in and asked, based on all of this, this is Cynthia from Kennesaw, Ga., who asks, "What tests would you say are needed to get a proper diagnosis, if you really do have Alzheimer's disease?"

And Bill, you mentioned the neuro-psychological testing that you had, a couple of you have mentioned the brain scanning that you had -- MRIs and PET scans. What's your -- in a nutshell -- what's your advice to people about what helps to make the diagnosis?

BILL BRIDGWATER: Well, Susan, this is Bill, and I would offer just very quickly and briefly, that from all of the scientific meetings that I have attended within the gene specialists today, in 2008, the two most important tests would be the PET scan and the neuro-psych battery. There's also some blood typing that can point out some gene correlation. But the two primary tests, one would be imaging -- it would be the PET scan -- and two would be the neuro-psychological battery.

SUSAN DENTZER: Others of you, agree with that?

RICHARD BOZANICH: Yes, this is Richard and I would agree with that, as well. I think -- I had an MRI which ruled out that I did not have a brain tumor but it was the PET scan, coupled with -- for me -- two days of the neuro-psych testing that, you know, so -- the two together, I think, make the complete picture.

SUSAN DENTZER: And of course, this is an improvement from the old days, because it used to be you could only make a definitive diagnosis on autopsy. But now, I guess, the good news is, we can get an interim look, and tell from a PET scan or from the neuro-psych testing that there really is an issue.

JAMES SMITH: And, Susan, this is James, I would agree with Bill and Richard that it appears that the neuro-psych test was the directional test that sort of led you towards the PET scan, and the PET scan, for me, was the confirming test.

The other thing I would throw out is that they have made some advances in recent years, and they're still in the testing phase of these, but there are some compounds, and one is called Pittsburgh Compound B that will actually highlight your levels of amyloid plaques in the brain that you can encapture (sic) through imaging.

So there's some good testing now, I think there's some even better testing coming in the very near future.

Now, we should go onto say that there are several genes that are implicated in -- gene mutations, I should say -- that are implicated in early onset Alzheimer's, but we don't know the genetic roots of all forms of early onset Alzheimer's. And, at least to my knowledge, for the three of you, there was no family history that was, at least, inherited, on your part, for early onset Alzheimer's, is that correct?

BILL BRIDGWATER: Well, Susan, this is Bill, and in my case, my father actually had Alzheimer's in his early 60s, late 50s, died at age 68. And I have his sister and his mother that died from the disease, as well. But if I can give the lady who asked the question some solace, we have understood over the last several years of investigation, that only three percent of Alzheimer's disease is genetically related. So, the vast majority of cases are not related, they're the ones that you hear about that are, obviously, but the vast majority are not genetically related.

SUSAN DENTZER: And James, in your case, and Richard, did you ever suspect that there was an inherited component to your Alzheimer's?

RICHARD BOZANICH: This is Richard. It does run in my mother's family, on my mother's side. And, you know, I guess one of those things I get -- denial, or whatever -- I didn't go there, it wasn't the first thing that I thought of when I was having the symptoms. And I didn't think to do those kinds of testing. And, I think most people, it's just probably a place you don't -- your brain doesn't want to go to, or to think of.

SUSAN DENTZER: And what about you, James?

JAMES SMITH: Well, Susan, my case was a little bit different. I was actually adopted during a period of time when adoption records were sealed and I wasn't able to access those records, so I didn't have any sense at all as to what my family history was.

But after I was diagnosed, my concern was, might there be some doubts, you know, later risk to my children. And so, I did opt to take the genetic test, which is actually a simple blood test. One of the things that you have to do when you take that test, is you go through some counseling to determine, what is it you will do with the outcomes of the test? You need to sort of predetermine that before you take the test and get those results back.

But I did take the test, and it was determined that I do not have any of the genetic markers that would be related to Alzheimer's, which then correlates to mean that my children don't have -- don't carry those markers.

SUSAN DENTZER: And your recommendation to Anna, about taking the test, what would you say?

JAMES SMITH: My recommendation would be, if she has concerns, and has a sense for what she would do with the results, if she got -- if they came back positive, if she knows, you know, how she might handle that -- I would suggest that she go to a doctor and, you know, request to have the testing done. They will -- they will most likely ask her to go through that same counseling process that I went through, but then -- you know, if she knows that she wants to know, and she knows what she'll do with that information, then I would say, go ahead.

BILL BRIDGWATER: This is Bill, and adding to what James just said, I couldn't agree more. And it's important, as well that the individual seeking that type of information has their insurance, their long-term care, their health care coverage, in place before taking the test. In many cases, insurers will not provide insurance, long-term care facilities do not provide long-term care insurance for individuals that have a diagnosis of Alzheimer's disease.

JAMES SMITH: That's a terrific point, Bill, and in addition, you know, to long-term care, you need to think about things like life insurance and disability insurance and medical all of that, so -- great point.

SUSAN DENTZER: Good precautions to take under any circumstances, and especially important if you're about to undergo genetic testing.

What about the causes of early onset Alzheimer's that are distinct from the genetic, inherited type that we've just talked about? Surely all of you have spent a lot of time looking into this and thinking about this. What risk factors you might have had that contributed to having Alzheimer's? What do we know about this, and Bill, and particularly in your case, I know you had a history of head injuries -- what have you learned about the risk factors that you can now look back on and identify in your own life?

BILL BRIDGWATER: Well, much like the professional boxers, and Muhammad Ali comes to mind more than anyone else, and the difficulties that he has had with Parkinson's and a lot of that has been attributed to the trauma that he sustained during his fighting career -- not to compare myself to Muhammad Ali -- but I played high school football and college football, and had -- over the course of my playing career, and then just some mishaps in life -- a total of 30 concussions. About a third of those required overnight stays in hospitals. And we didn't know then what we know now about progressive brain trauma and the additive effects of it over time. So, I look back and I think that that accelerated my situation and greatly enhanced my chances of having it.

SUSAN DENTZER: What about you, James, and you, Richard -- risk factors that you've identified?

JAMES SMITH: Well, I will tell you that when you get this diagnosis there is a tendency to try and go back and, you know, find the reason why, you know, why this came about. And, because I was able to rule out genetics, and, you know, I had some head injuries, but certainly not to the level of what Bill had, you know, maybe, maybe I was just a little faster on the field and didn't get hit as much.

[Laughter.]

JAMES SMITH: But, I wasn't really able to go back and pinpoint anything from an environmental standpoint, or, you know, from a physical standpoint that might have caused trauma to the brain. And I think that's important, too, is that, you know, there's a tendency to look for that reason, and in some cases, we just don't know enough about the disease to know what that is. So, for me I wasn't able to link it back to anything specific.

RICHARD BOZANICH: This is Richard, I would say, again, exactly, I think it's human nature to want to look back and say, well, what happened? When I was four or five years old I had very severe head trauma, and so, you know, one wonders, you know, had I not, you know, hit my head at that age, you know, would that have made a difference? And, I think, we don't know. It's just one of those unknowable things, I think, right now.

SUSAN DENTZER: A related question came in from Paul who says he's from Canada. "From listening to all of you," he says, "I had the impression that things like the environment or what we feed ourselves has nothing to do with getting the disease." What are your thoughts on this, did you all think that your diet had, in any way, contributed?

JAMES SMITH: I will, well, let me start, this is James. One of those things that I think is a potential risk factor is, we're learning now that what's good for your heart is good for your brain. And so, lifestyle factors such as exercise and diet can make a difference in the health of your cardio-vascular system.

And there are some theories -- and again, I'm not a doctor -- but there are some theories that some of the plaque buildup can be a cause of, or can be triggered by, damage that is cardiovascular-related. So, if you get like mini micro-strokes, what they call vascular dementia, that can then trigger the formation of some of the plaques which can then starts an auto-immune mechanism.

Again, these are theories but one of those things that they have be able to link pretty closely is that if you have a heart-healthy diet, and a heart-healthy lifestyle, that that is also good for your brain.

SUSAN DENTZER: We've got a bunch of questions on treatment options, on medications, on nutritional supplements. And they basically come down to asking you, what sources do you use for information on all of this? Because as we mentioned in the broadcast piece, some of you have found some benefit from using the drugs that are now on the market for Alzheimer's and you've also benefited from nutritional supplements. But, how do you find out about all of that? How do you know what to do?

BILL BRIDGWATER: Susan, this is Bill, and I would offer to you that in my particular situation, two years ago, I was unable to speak fluently. And that's hard to believe today, but I wasn't -- I had stuttering fits, and I couldn't talk, and I couldn't -- I could think, but I couldn't communicate, I couldn't articulate it. And as a result of taking the two drugs that I take -- Namenda and Arocet -- together, it is improved that.

Other things have improved slightly, but other things continue to deteriorate at a significant rate, and what I would tell this particular individual is there are drugs that are specifically designed and approved by the FDA -- it's very important -- for Alzheimer's treatment, both in the early stages and then subsequent stages.

The disease still remains terminal, there is no type of treatment that will cure you of Alzheimer's at this point in time, and if someone decides to go into supplements or other type of drugs to compliment the two that have, or the four, that have been identified by the FDA and approved, I would ask them to work with their doctor and teaming to make those decisions. Because blood workups are needed to make sure that you're not creating toxic levels in your body, and you need to do those periodically. A doctor needs to check you to make sure that the progress that you anticipate is the progress you're achieving, et cetera, so I'll just stop there.

RICHARD BOZANICH: This is Richard, and I was going to say -- I work with my doctor and he's aware of all the supplements that I take. I also work with a psycho-pharmacologist, and so he looks at all of the drug interactions that -- he's aware of all of the supplements that I take. I don't want to sound like I'm endorsing anything, but some things that have been said to work, or at least to be helpful, and we don't know exactly because there are studies that go both ways on this, but curcumin is one, folic acid, Coenzyme Q10 and omega fish oil. I take six of those a day. So, you know, I'll try anything.

BILL BRIDGWATER: This is Bill, and I would say the best source of information on Alzheimer's is the National Alzheimer's Association which is at www.alz.org. And, you know, you can go to that location, that Web site, and they have a helpline. But, as you're working on medical issues relating to your particular condition, I think Rich pointed out a great concept, that he's partnering with his doctor, and they're coming up with things that work for him. And I'm doing a similar scenario, but I wouldn't, I don't feel comfortable giving that out to people, because I think they ought to do that under a doctor's oversight.

JAMES SMITH: This is James -- I will tell you that we live in an age where we have access to more information about these kinds of things than ever before. And through the Internet we can get a ton of information. So, I use, really, a, you know, information that I get from, you know, Web sites on the Internet -- alz.org is a terrific recommendation. I read every book that I can get my hands on, I read neurological publications, and -- but before I act on any of that, I bring all of that information into my doctor. And I'm sure he loves it when I come in with a stack of printouts, and you know, questions, but by doing that, I feel like I'm able to, hopefully, educate him, he's able to help me weed through the misinformation that might be out there.

So, I think the recommendation to work with your doctor is a good one, but I would say, you know, nobody is more motivated to find a cure, or to find something that will help then the people who have this disease, and so many of us do, sort of, go out and do as much research as we can, and then the right thing to do is to bring that to your doctor and help him sort you through that.

RICHARD BOZANICH: Susan, James brings up a tremendous point, and that is that in many cases, after some period of time, you will become the expert of new information and bring it to your doctor, as opposed to vice versa. This isn't a common cold. And most doctors don't see a person like James at, you know, 47, 48, Rich at 49, myself at 48 -- they don't see that once or twice a year. So that's not what their practice is based on, and that's not what their study is geared toward. And you've got to depend on that individual to help you get to the next level of specialization as you seek a cure, so that was a great insight on James' part.

SUSAN DENTZER: Sounds like you all deserve honorary medical degrees at this point for what you've learned and what you've put into this, understanding your conditions.

Let me close by asking a question on behalf of Susan of Reston, Va., who wrote in and said, "I was very moved by the participants on the show. My question is, in addition to supporting and pushing for funds for further research into Alzheimer's and other neurological conditions, what can the general public do to support you? What are the two or three things that would help the most?" Whether it's political action, or ways to support you socially, or whatever else you think is important.

And Bill, let's start with you on that.

BILL BRIDGWATER: Well, thanks, Susan. I would say, in the state of Colorado, where I reside, on your tax return this year, there is a check-off, and it's check 41, and you can actually stroke that, and part of your tax contribution will go directly to the Alzheimer's Association.

So, first and foremost, I think, the awareness is important, raising funds is equally important, and then letting your elected officials know of your concern.

But, more than anything, I appreciate the individuals on a personal level -- involvement, activism, prayer, and support. And I must say, as well, you have to find peace with this, with this diagnosis. James, Richard and I are living and thriving with a terminal diagnosis. And I think people need to understand that, hear it, and see it, because we're not giving up. And you can't give up. So, it's important to move forward, and to do the things you can with the disease and the same things that I'm suggesting that she does, we're all doing, as well.

SUSAN DENTZER: Richard, what would you add to that?

RICHARD BOZANICH: I think one of those things that I would ask is that people don't treat us differently, as if we're some kind of "other" -- I think lots of times, actually, after the piece aired on PBS, someone said to my mother, "You know, I see your son, and, you know, he seems so normal," and you know, I'm friends with James and Bill, and I think we hear that all of the time. At a session at the conference, I think someone said to James after the session, "I don't believe you have Alzheimer's."

And you know, we can sit here and tell you all of the things we go through and all of the symptoms that we have, but I think one thing is to treat it with respect, and I think the main thing is allow us to talk about this openly, and let us, you know, not hide.

And also, I think what needs to happen in this country is that there needs to be a discussion about it, and you know, I don't want to get on a harangue here, but I think the government doesn't spend enough money on research, and I think sadly, because of that the most brilliant minds are moving on to study other diseases. And I think if they really want to see something happen for the people that come after us, they need to make their voices heard.

SUSAN DENTZER: James Smith, we'll give the last word to you on that.

JAMES SMITH: Well, I would agree with what Bill and Richard have said. I would also say that I think that the Alzheimer's Association is a great place to go for information. It's also a great place to go to find out how you can help fight the disease. And there's a couple of fronts that it needs to be fought on.

We talked a lot about the need for research and finding a cure, but the other thing that's important is to understand that today there's five million people living with this disease, already. And those people need the support that the Alzheimer's Association provides, the families of those people need that support.

The biggest thing that I would say that people need to do is to understand that by and large this is really a silent disease, it's a silent epidemic. We've got 5.1 million people today that have it, by the year 2050 we will have 15 million people in this country that have this disease. And we live in an age where we talk about numbers in millions and billions, but let me try and give you some perspective on that.

If you started in New York City and lined up those 15 million people, shoulder to shoulder, along the highway, that line would stretch from New York all the way across the country to Los Angeles, and then turn up the coast for several hundred more miles. So, think of that line of people, each of those having Alzheimer's, and standing behind each one of those is a caregiver, is a family, is a community, and you have some sense of the scale of the problems that we're going to be facing in just a few years.

I think people need to understand that, I think they need to be a voice for those people who can't speak for themselves, that's part of what we're trying to do. And I think if that type of awareness comes about in our country, then the political action that follows will naturally drive us towards the cure that we so desperately need.

SUSAN DENTZER: Well, I can't thank all of you enough for your eloquence, for your thoughtfulness and for your time in joining us to talk about this extremely important subject. And I also want to thank all of our many, many viewers and listeners, and online readers who took the time to send in questions. We did receive an unprecedented number of e-mails on this topic, and we tried to get to as many of them as possible. As I said, we also have a separate forum directed to a neurologist, but there are many more questions to be answered for everyone. And you can find more information and resources on early onset Alzheimer's on the Insider Forum Web site, at pbs.org/newshour/insider.

Again, I want to thank our guests. Be sure to check back soon for your chance to send questions to next week's expert panel.

I'm Susan Dentzer, thanks so much for joining us.