About Health TV with Jeanne Blake Multiple System Atrophy II

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JEANNE BLAKE:

Welcome to About Health TV. I’m Jeanne Blake. Recently on About Health TV

we talked about multiple system atrophy, MSA. It’s a disease that kills brain cells that affect balance, coordination, and movement and parts of the brain that function automatically. On this edition of About Health TV we’re going to continue our discussion about MSA with Anthony Swartz Lloyd. Tony was diagnosed with MSA two years ago. Tony is known to many in Boston as the former senior vice president of communications and public affairs at Boston’s Beth Israel Deaconess Hospital, and he’s my friend. Tony and I met when I began reporting on medicine in 1980, that long ago. Welcome to the program. TONY: It’s great to be here, Jeanne. I’m sorry that you’re coming under these conditions to talk about this disease that

JEANNE BLAKE:

has taken over your life. TONY: Well, it has. Many have described it as being like a thief in the night, and it really is that

kind of disease. You don’t get diagnosed at sort of one point, knowing that before you didn’t have it and now you have it. What happens is, little pieces of you begin disappearing and you don’t realize until a number of these pieces have disappeared, but there’s something seriously wrong. For example, you might have trouble in balancing and stuff; I tend to trip and fall. Or you might find that your voice is betraying you and getting lower and lower and you’re not realizing it, or maybe indistinct. Your writing becomes almost indistinguishable, which mine pretty much was to begin with. JEANNE BLAKE: TONY: I can attest to that, actually. I remember.

And other symptoms, each of which could be attributed to a lot of other causes beside

MSA. But taken all together, they do eventually end to diagnosis of sometimes Parkinson’s and sometimes MSA. JEANNE BLAKE: What were your first symptoms? I mean, were the first symptoms two years ago,

or was it two years ago when you were actually given your diagnosis?
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TONY:

The first symptoms were over two years ago, and they began showing up. For example,

an occasion comes to you which none of us, none of the doctors thought – none of my doctors or any of the others at the beginning – it was called orthostatic hypotension, and what that means basically is that your blood pressure when you get up from a reclining position, a reclining position to standing up, instead of going up – which it normally does – it goes down. It normally goes up to cope with the fact that you’re standing erect and you’re dealing with gravity in a different way than when you are lying down. So your body’s trying to compensate for that. And so it builds up blood pressure. But in orthostatic hypotension like this, what happens is that the blood pressure goes down and you may feel dizzy, you may feel faint, you may actually faint and fall over, although I never did that. But I did find that when I was getting up from having sat for quite a while, like in a movie or on a drive, or having laid down for a nap in the afternoon, when I got up I found myself almost falling. JEANNE BLAKE: TONY: What did you think it was if those were your first symptoms?

I thought it was orthostatic hypotension. I knew you picked up a lot working at the hospital working all those years.

JEANNE BLAKE: TONY:

Right. Right. Not all of my brains are gone. You have more than most, so you can spare a few. But you were able to

JEANNE BLAKE:

diagnosis it. I mean, you can imagine how difficult it would be, because one the problems with the disease is that there are all of these vague symptoms, as we talked about a few weeks ago when we talked about MSA. The diagnosis, especially in outlying areas of the country where you don’t have hospitals like the Beth Israel, it can be tremendously difficult to get an accurate diagnosis. TONY: That’s true. And most people have difficulty getting an accurate diagnosis. Many

physicians don’t really understand what it is or haven’t had experience in dealing with it. Fortunately for me, there’s a whole group of major Harvard teaching hospitals and they are on the cutting edge of knowing about neuro-degenerative diseases such as this, and they are most likely to diagnosis accurately and help you. JEANNE BLAKE: That’s true. Did you go to the doctor for that problem?

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TONY:

Yes, I did. I went to my own physician. Dr. Aaronson at Boston’s Beth Israel Deaconess

Medical Center first realized that there was something wrong, because I seemed to be developing several symptoms. At first it was thought to be Parkinson’s. JEANNE BLAKE: TONY: It’s very often misdiagnosed as Parkinson’s.

Often. And I’ll never forget a comment that one of the physicians made to me: Well, it

looks like Parkinson’s but thank God it isn’t something like MSA, which is the first time I’d ever heard that term. And so I hustled home to my computer that night and looked it up on the Internet and thought, oh my God, I hope it isn’t that. And as days went by and before I went to see a specialist, a neurologist who specializes in the field, Dr. Lloyd Freeman, I was diagnosed as clearly as can be diagnosed with having MSA. And as I looked down the list of likely symptoms of MSA, there were about 21 or 22 and I had about 18 or 19 of them. JEANNE BLAKE: TONY: Oh no.

So it looked like as much as it can be a fairly sure thing, and it was a sure thing. You, having worked in a hospital setting forever, well not forever – actually you

JEANNE BLAKE:

were a journalist, which we’ll talk about how that also impacted your ability to sort of confront this disease. But what was the emotional reaction that you had to this? I mean, you have a dynamic life and a fabulous life and a full life. What was it like? TONY: It was a shock at first. Complete denial, just human nature. Rejecting the possibility of

it. Thinking about what it might possibly be. Just simply not believing it, particularly the part of one of the aspects of MSA that is particularly unsettling is the fact that longevity isn’t great. The prognosis for a longer life isn’t great. JEANNE BLAKE: TONY: There’s no cure.

There’s no cure. You can treat only the symptoms … there’s no way yet of dealing with

the disease itself. And averages and statistics are tricky and they don’t mean a whole lot, but by and large most sources say that people survive around five to seven to nine years after this diagnosis. One of the tricky things is, the diagnosis could come long after you’ve actually had the disease. So you never really know, and that’s one of the characteristics of MSA. It can turn up anywhere and in any
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kind of shape. I’m sure you’ve heard the analogy to the neapolitan ice cream that has chocolate, vanilla, and strawberry – I have to remember that, I haven’t had it in a while. And if you consider each one of those layers as a cluster of symptoms of the disease or actually aspects of the disease, you may start out just eating chocolate but eventually you get to the vanilla and to the strawberry and eventually you take the whole thing. Well, MSA is sort of like that in the respect that it comes on with some symptoms at first, like a thief in the night, and those symptoms may build up, may come to a certain point and stay there for a while, and the other symptoms from the vanilla or the strawberry may start showing up. But eventually you realize that you got the whole thing. It takes a long time to develop, and when you do become aware of it that part is fairly rapid. JEANNE BLAKE: When I bumped into you – it was a year ago this month at the grocery store –

and I didn’t know that you had been diagnosed with MSA. At that time – I don’t know if you’ll remember -- you said that the likelihood was that within the next six months you’d be in a wheelchair. TONY: At that time, that was what – I mean, you hear so many things from so many sources. I’m delighted to see you walking so well and so mobile and looking so well. What

JEANNE BLAKE: symptoms? TONY:

are the ways that you prepare for a life when you can go on the Internet and see your future in your

Well, first you learn. Or actually, first you cry. And then second, you start learning. You

cannot, or I certainly cannot and I’m sure that’s true of others with MSA, cannot overstate the importance of the caregiver in this role. The caregiver in my case is my wife, Marilyn Schwartz Lloyd. The caregiver is as much a victim of the disease as the victim, and in fact I think in many ways more so. JEANNE BLAKE: TONY: How so?

Well, because they feel helpless. They certainly have a huge burden of responsibility

thrust upon them. This wasn’t foreseen in the future years ago. It’s sad to see somebody you love degenerate in terms of the things that you can do, you cannot do any more. And I’m blessed, if that word is even strong enough, I’m blessed with a wonderful caregiver, because my wife is so wonderful and so understanding. She’s the most generous and caring and talented and funny woman I’ve ever met in the world. And I just died and went to heaven when I met her. That’s the strongest support that I have now. Having said that, I also get a lot of support from our family, my children and their children, and good friends, good friends like you, and others who care for me and for whom I care. And then
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also through the support groups such as the MSA SPS support group on the Net, which has about 700 members. There are about 700 people who are talking to each other and giving advice and taking advice and giving reactions and just supporting each other. JEANNE BLAKE: We’ll make sure that all of that information – where to call and where to write and

where to go and how to get on the Internet – we’ll put all of that on our website so that folks have that available to them. I mentioned before, Tony, that your first job in your career was that of a journalist, and I know from friends who have had life-threatening illnesses that being able to access information is a really important way to cope with a disease such as this. So tell me how those skills have helped you in terms of meeting this challenge. TONY: Well, I sort of … I was a newspaper brat. I grew up in a family where my father had

been with AP for 40 years before he retired. He had met my mother at a dinner for correspondents in Italy in the thirties, and my stepfather was with AP and had been for years and years, and actually my first job out of college turned out to be as a reporter with the Hartford Courant in Connecticut. And I drifted towards a general assignment reporter and a lot of things, but I drifted closer and closer to science-based stories and, in particular, medical stories. I did a lot of the space stuff because that was in the early days of the cold war space days. But I did do an awful lot of writing about medicine and I became very interested in it. Later on, when I moved up into the Boston area, I had the opportunity to go for a position that was being vacated at the Mass Eye and Ear Infirmary, a wonderful hospital. And it was the position previously held by Laura McLoughlin, who is an accredited, nationally known editorial writer and reporter and journalist in healthcare areas. In any event, just a genius in the field. I was very privileged to follow her. So I was at the Eye and Ear for four years as director of personnel, of all things, and public relations. And then Dr. Mitchell Lefkin, who is the great famed leader of Beth Israel for so many years -- he really made that hospital what it was to become – asked me to come on with him at Beth Israel, and I worked with him for 23 wonderful years. What I was able to apply, that I think certainly helped me from my journalistic background as a kid growing up and as a reporter, is that you have to be inquisitive, you have to be curious about why things are the way they are. It sometimes is not the easiest road to take. You can just sort of accept things, while reporters don’t tend to just accept things. And they also want to be near the story. That’s one of the things that journalists, as you well know, want more than anything else, is to be near the story. You don’t want to phone it in; you want to be there. And for that reason, when I started out, particularly at the Beth Israel, what I would describe as reporter’s instinct helped me to get close to what was happening and what the doctors were like and what the nurses were like and what they confronted and how they dealt with it. I learned

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about surgical procedures from observing them inside the OR, I spent nights in the emergency unit, and I spent nights in the nursing units and so on to be close to and be aware of the job. JEANNE BLAKE: So when you were diagnosed, you really were a patient who had seen someone

living with the disease from the healthcare provider’s perspective. TONY: Yes, yes. And I was also very comfortable in speaking with physicians and nurses, and

that was part of just the years of experience that I had there and I had learned so much there. JEANNE BLAKE: Therefore, all of the talk that we hear about the importance of being an advocate

for your own care, you were able to do that. TONY: Yes, and I feel very strongly about that. You’ve got to do it. You’ve got to take it into

your own hands. I mean, your health is ultimately closer to you than anybody else in the world. It is more you than it is anybody else. JEANNE BLAKE: How does that apply when, as you said, it’s well known that this is a disease for

which there’s no cure, it can only be managed and nobody knows for sure what causes it? How does that change the way you advocate for yourself as a patient? TONY: Well, you can only treat the symptoms. You sort of have to get beyond the first stages,

which are the stages of shock, denial, and self-pity and all that. And once you do get over that, I think you get by largely through how you look at this – this is a cliché here – but largely how you look at life. And there are a couple of ways of looking at it, one of which is that Oscar Levant, the great American cynic, used to say that when he got up every morning he’d say, Well, another day less. And that’s one way of looking at it. The other way of looking at it, which is the way I look at it, is that each day is a gift, and it’s a kind of a jewel, and you string each one of these jewels as they go by like pearls, one after the other, and it doesn’t end up mattering very much at all how long the strand is ultimately, but how pretty it is no matter how long it is. And if you can get yourself to looking into actually living that cliché of taking life one day at a time, it really is, to me, being enormously helpful. Both Marilyn and I, I think, look at life that way together. JEANNE BLAKE: TONY: No. But probably didn’t always.

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JEANNE BLAKE:

I’m wondering why that philosophy is so elusive unless you’ve been handed a

diagnosis. I mean, we’ve all lost people that we cared about, and I have tried really hard, having lost two of my closest friends in the last two years to cancer, to not let the small stuff bother me. It was really not until I had a biopsy for breast cancer two months ago that thankfully was benign that I have found that it really does having a lasting quality every day. And I wonder why that is so elusive, that ability to stop and smell the roses. TONY: Well, it was hard for me. I don’t think it’s easy for anybody. You just sort of have to …

it’s like building a structure in your mind that will keep its shape and stand up, and you’ve got to go brick by brick, it’s not going to come all at once. JEANNE BLAKE: TONY: Even after your diagnosis, it didn’t come all at once?

No, no it didn’t. It took a while to get there. I mean, it took probably weeks to really

begin to … probably months, actually, to really begin to get to the point of acceptance and then ultimately kind of a celebration of each day that goes by. I cherish my days with Marilyn, and they’re just wonderful things. If it were to stop tomorrow or if I were to suddenly become much more ill, which eventually at some point you will progress to a really severe physical illness, all the jewels that we’ve put on the strand will be there. So when you look at it like that – I find this works for me and for many others – but for me it works because you just think of these jewels on a strand, and even two is good, three is great, four is wonderful. And if you’ve got a partner and someone for whom you care deeply and who cares deeply for you, and in this case it happens to be my wife, then it makes an enormous difference, because you’re doing this together. And there’s a certain intensity of love and of joined experience and mutual respect and humor that comes with being that close to a person. JEANNE BLAKE: Take a drink of water while I ask this question. You mentioned a bit earlier that

Marilyn has a lot of qualities that have really served both of you well and have helped you in this process. And you just mentioned the humor again. I’m just wondering if anything comes to mind. I know that when we were at the conference a few months ago, the two of you were telling me about things that you had found funny. But I’m wondering if anything comes to mind in some of the ways that you have found humor with this disease. TONY: Well, it’s the – by the way, the dry mouth that caused the drink of water was not from

being worried about being on television, it comes with medicine they provide.
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JEANNE BLAKE: TONY:

No, we know you’re an old pro at the TV stuff, Tony.

You take a lot of medication for each of these symptoms. I take probably 14 or 15 in a

day, and that’s one of the side effects. Humor. Well, part of it for me, or a lot of it for me, is that I’m married to a very funny lady. You’ve got to find some humor in this. You find it on the Net. People sharing jokes. Some of them are dark, by the way. JEANNE BLAKE: TONY: People always use dark humor when facing something like this.

And that’s very helpful. And there’s a surprising nucleus of humor. I don’t want to

belittle the disease or people’s perception of it at all, but there’s a surprising degree of kind of helpful humor. And the thing is that what might normally have been mildly abusing will become much more amusing. Everything is more highly focused, including humor. A lot of people look at my walking stick, which is a rather enthusiastic affair of a walking stick. JEANNE BLAKE: TONY: That’s a good description – an enthusiastic affair of a walking stick. It’s very big.

It’s very big, and it’s shaped like a snake going up a pole. And you think of Moses

standing before the Red Sea and saying, “Part, I said, damn it. Part.” It’s one of those kinds of things. And a lot of people comment on that. I remember one young man who came up to me and said one word. It was just one of the nicest things he could say. He said, Cool. And people react to you in sometimes funny ways and that can be quite amusing. It’s never insulting; it’s amusing. And then you laugh at yourself. You see these things that you could always do sort of disappearing away. There goes my ability to ski downhill – no, I never skied uphill or downhill in my life. It’s like saying, well, I’m not going to play the violin anymore. Well, that’s horrible and I’ll cry for a while, but then I’ll suddenly realize I never did. So the things that you lose, some of them are bearable. I mean, some of them are unbearable, some of the physical things that can eventually happen. There are people that are dealing with this devastating disease at that level that I’m not yet. But in the early days, you cope. Human beings are wonderfully able to cope. It’s one of the things that we do very well as a species, and humor is very much a part of that. I like to hang out with funny people, and that makes me feel a lot better. JEANNE BLAKE: I know that you must have your thumb right on the pulse of the research, and I’m

wondering what you can share about what’s going on. I know that you mentioned – we can talk about

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this as well – the autonomic research fund at the Beth Israel. What is that? TONY: Well, the autonomic research fund that Dr. Lloyd Freeman is in charge of at the Beth

Israel Deaconess Medical Center is one of those centers of research into causes of the disease, which nobody has a clue as to where it comes from. There are theories that it’s coming from possible environmental factors, possibility of being heredity, but no one really knows. It’s a complete question mark. And physician scientists like Lloyd Freeman and others known for their work in these diseases and, of course, the MGH and Brigham and Women’s here in Boston are two other major teaching hospitals in Boston, are doing research to find out things that you can. You can’t really seriously begin to approach the cure until you understand the cause, and the cause is just not well understood at all yet. There is hope, there’s a lot of work being done in stem cell research, because eventually it’s a possibility that stem cells, which, when introduced into your system, take on the bulk of the credit that was plagued by cells that have died. The cells that die in MSA are the cells that produce dopamine, which is essential for a lot of functions of your body. And when they die off, you lose the level of dopamine to pump into the system. And so stem cells would come in and become, in the best of all worlds, become the same as the cells that died and ultimately that may be one of the better cures. JEANNE BLAKE: Was there a time when you were, I don’t know … maybe now or with your initial

diagnosis, did you try to figure out how you got it? TONY: Yes, of course. What did you tell yourself? What were some of the things that floated through

JEANNE BLAKE: your mind? TONY:

Well, one of the things I did was to try to divide and conquer. I looked at all the

symptoms and I said, Well, you could have hypotension from a number of sources. And that could have come from here. The speech difficulties could have easily been caused by this and come from that. The motion disorders, well, they don’t necessarily come from other sources too. The impact on libido, which is a big problem with MSA, could have easily come from other sources, among men in their 50s, 60s and up, which is where the highest instance of MSA seems to be. JEANNE BLAKE: So even when you found out it was MSA, you still tried to break them all out?

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TONY:

I sort of built myself a court case. I said, how can I prove this isn’t MSA? Okay, but then once you accepted it was MSA, have you tried to figure out where

JEANNE BLAKE:

there might have been environmental exposure, something in the family? TONY: Yes, and I come up with nothing. Nothing that I can identify or think of. I mean, I was a

smoker for 20 years before I stopped. But I stopped 20 years ago. JEANNE BLAKE: TONY: But who wasn’t, right?

Right. I smoked like a smokestack until 30 years ago when I stopped. Actually, the

month that I met Marilyn, and she just didn’t care for smoke. She never said a word to me, but the fact that I knew that it bothered her was enough to finally make me get off of it. Smoking could have been a factor. Who knows. JEANNE BLAKE: We’re out of time. We have to end there. You’ve shared such wonderful

philosophy. If we could all apply this to our lives with or without some challenge to our emotional and physical well-being, we’d be living better lives and it would be a better world. Thank you for coming in, Tony. TONY: about it. JEANNE BLAKE: Well, I know that you’re going to continue to do well and be surrounded by love, Thank you, Jeanne. It’s wonderful that you’re doing this and that people are talking

and that will help you. Thanks, Tony. I want to thank you for joining us on About Health TV, and I’ll see you next time. I’m Jeanne Blake.
About Health TV is sponsored in part by Harvard Pilgrim Health Care Foundation. Improving health through medical education, clinical research and community service.

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