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Living With Stroke: Community TV

  • Richard Cohen:

    Stroke is the third leading cause of death in the United States.  Almost 145,000 Americans die each year from stroke. And one more statistic:  Almost 800,000 strokes occur in the United States each year. OK, enough numbers. Most of us know surprisingly little about stroke.  Harvey Alter knows.  Harvey learned the hard way.  I want to hear it from someone who has been there.  What happened?  You were a stroke victim.  It came out of nowhere.  Tell me about it. 

  • Harvey Alter:

    I had a stroke in 2003 in June.  I was cleaning my apartment and getting ready to walk the dog when I leaned down to put her collar on, I felt dizzy and that led me to almost falling.  And the room started to spin and I couldn’t find my balance.  And I realized that I, my speech was not sounding correct.  There was a workman in the house at the time, working on the air conditioner.  And he couldn’t understand me.  I realized that something was going on.  I tried to communicate with him and nothing happened.  I then tried to write down a note to him to say that something’s wrong.  I realized then that it must be a stroke. 

  • Richard:

    When you realized it was a stroke, what in the world did you do? 

  • Harvey:

    Well, I, the super came up into my apartment and he couldn’t understand me at all.  So after signaling each other an attempt to communicate, I finally pointed to the phone.  And said, he couldn’t understand me but he said he’s going to call 911.  And that’s how it began. 

  • Richard:

    You know Harvey, your mind is all you know.  It’s your identity, your skills, your dreams.  All of this was at risk.  Weren’t you petrified? 

  • Harvey:

    I was so petrified.  I didn’t know what was happening.  I thought I was going to die. 

  • Richard:

    You really did. 

  • Harvey:

    Yes.  It kept getting worse.  My speech and my head and confusion, it was getting worse and worse.

  • Richard:

    You know, common wisdom says you have three hours to get medical help if you’re going to reverse the effects.  The clock was ticking.  Did you actually make it? 

  • Harvey:

    No, no. 

  • Richard:

    Really!  How much did you miss it by?

  • Harvey:

    I got there about four hours into the stroke. 

  • Richard:

    Do you think that that made a difference?

  • Harvey:

    I don’t know.  If I had been there an hour say, something else could have been done.  But in through the doors I come and four hours have passed.  They started giving me anticoagulants and kept me in the emergency room and I stayed there for about six to eight hours.  I was scared.  There I was waiting to find out what my fate was. 

  • Richard:

    Harvey, you’ve talked about the Valley of Death.  Tell me about it.

  • Harvey:

    Well, I believe that all of us stroke survivors, we have all been to the Valley of Death.  And some of us climb out and we are the survivors.  We are the people who have had a brush with death.  We climbed out and there we were.  What to do?  Incidentally, our partners, our wives, our children, they too have been with us in going to the Valley of Death.  They are now co-survivors.  They will remember going there with us. 

  • Richard:

    For some it’s a one way trip, isn’t it?

  • Harvey:

    I call it 'going to the country of aphasia.'  It means going somewhere that you’ve never been before.  And once you’re there, that’s where you stay.  There are…

  • Richard:

    We’re going to talk about aphasia.  You know, stroke is the leading cause of long-term disability.  And yet as strange as this sounds, you sang your way out of the whole thing, didn’t you?  Please explain that.

  • Harvey:

    In therapy with my speech therapist, she discovered that I could sing my, while I could not talk.  I couldn’t say a word but yet I can sing. 

  • Richard:

    Is this where you learned about melodic intonation therapy? 

  • Harvey:

    Yes.

  • Richard:

    Tell us about that. 

  • Harvey:

    That is when you use the right -- well, I should explain.  I had ischemic stroke on my left side of my brain.

  • Richard:

    Now, there are two kinds of strokes.

  • Harvey:

    Yes.

  • Richard:

    Explain those. 

  • Harvey:

    One is ischemic and the other is hemorrhagic.  Ischemic stroke occurs when a blood vessel that supplies blood to the brain is blocked by a plugged clot.

  • Richard:

    So it’s a clot.

  • Harvey:

    Yes.  It’s a clot in your body somewhere cutting off.

  • Richard:

    The other one is the bleed.

  • Harvey:

    The other one is bleeding in the brain.  The hemorrhagic stroke occurs when a blood vessel part of the brain becomes weak and bursts open, causing blood to leak into the brain. 

  • Richard:

    Right.  Now with this melodic intonation therapy, and this is a little complicated, it all has to do, the left side and the right side of the brain, right?

  • Harvey:

    Right. 

  • Richard:

    Can you explain that?

  • Harvey:

    Yes, I will.  The left side of the brain controls language.  That is the language center.  When you have an ischemic stroke, your left side in most cases is damaged.  You, hence, the talking ability and communication ability is damaged.

  • Richard:

    And what about the right side?

  • Harvey:

    Now the right side is where you use it.  And singing is controlled by the right side of the brain.  The trick is to make the right side of the brain take over the functions of the left side.

  • Richard:

    So the right side in effect, becomes a magnet for pulling out words, right?

  • Harvey:

    Yes.  But they come out in song, you see.

  • Richard:

    So you could see, you could sing what you could not say.

  • Harvey:

    Yes.  If you, a trained ear can tell that I am singing to you right now, I cannot talk.  I have perfected how to sing and make my singing sound like talking. 

  • Richard:

    You know Harvey, you have a classic stroke voice but nobody would guess that you were singing. 

  • Harvey:

    I’m actually singing.  The melody is my attempt to communicate the words to you through singing.  For a long time, I would actually sing the words until I learned how to use the words and make it sound like I was really talking. 

  • Richard:

    So tell me, what is the significance of Happy Birthday?

  • Harvey:

    Oh…Happy Birthday is the first song I was able to sing.  The first time my therapist asked me to sing Happy Birthday was the first time I realized that I could sing.  How is that possible?  I can sing but I cannot talk. 

  • Richard:

    Well, Harvey, I have to ask you this.  Would you sing Happy Birthday for us?

  • Harvey:

    Yes, I will.  [sings] Happy Birthday to you.  Happy Birthday to you.  Happy Birthday, dear Richard.  Happy Birthday to you. 

  • Richard:

    That’s really extraordinary.  Explain more about aphasia to us, because this is really what’s it all about with a stroke.

  • Harvey:

    Yes.  People that have strokes often times have aphasia.  Aphasia is the problem where your mind doesn’t communicate with your mouth.  Your mind says one thing and your mouth says another.  Basically, that is what happens.  Aphasia is the lack of communication between the brain and the mouth. 

  • Richard:

    And is that the biggest problem with stroke?

  • Harvey:

    No.  I see it as the biggest problem with stroke because I myself have aphasia.  I deal with many aphasia people and they haven’t yet figured out our train practice enough to make the sounds and the words meet each other so their brains and mouths can connect.

  • Richard:

    Right.  Now, other people with stroke might have mobility problems or fine motor skills problems with things like this.  This is your thing.  This is what happened to you, right?

  • Harvey:

    I’m lucky in that I first was paralyzed on my right side, by my arm to my leg.  I thought that was going to last forever, but slowly my paralysis went away.  But my voice still wouldn’t change.  I still could not say anything other than sounds.  My paralysis was gone, but my mouth and voice were a problem.  That’s how it was for about a year or so until we started using music and then through melodic intonation therapy I was able to sing myself.  My communication was limited to things I could sing.  I was…

  • Richard:

    But that must have grown. 

  • Harvey:

    Well, the songs got replaced with words, like Happy Birthday will be [sings] ‘how are you today.  I am feeling fine.  I hope you are feeling fine.  And I wish you good day.’  I was singing everything.  I was using every melody I could.

  • Richard:

    Harvey, this must have been like getting out of prison.  You must have been liberated.

  • Harvey:

    It was.  But I wanted to speak, not sing.  Then we got into a place where we had to find a way to make the melody come out as words rather than songs.  So we practiced for two years to make myself speak, not sing.  But I’m really singing right now, I’m singing to you.  It sounds like I’m speaking but it’s really my singing.  It was…

  • Richard:

    That’s extraordinary.  You know, you used to be a criminologist.  What’s your job today? 

  • Harvey:

    Today, I’m the director of the International Aphasia Movement.  I work at helping people with aphasia from groups and support groups and share experiences with each other.  I am currently running several programs at St. Vincent’s Hospital in New York and Marymount College in New York.  But I have gone as far as Australia, England, where I speak, where I speak to aphasia and trying to give them hope. 

  • Richard:

    And for all of this, what are you paid?

  • Harvey:

    Nothing. 

  • Richard:

    Really, so this is a mission. 

  • Harvey:

    Yes.  Because I found my voice so to speak, I want everyone in the world who has aphasia try it.  Try to sing.  Try to sing anything.  And then reduce your singing to words.  It is so hopeful to people who have not said a word suddenly realizing that they can sing. 

  • Richard:

    You know, you run groups for stroke victims.  What do you do there? 

  • Harvey:

    We, it’s funny, we run groups, and our biggest group is about 40 people.  When you come into the room, you leave your aphasia at the door.  No one in the group of aphasia people has aphasia.  Everyone is the same.  And from that, we help each other to speak correctly -- and I shouldn’t say correctly, as best we can. 

  • Richard:

    What is your advice to newly affected people?

  • Harvey:

    To what?

  • Richard:

    To people who have had strokes.

  • Harvey:

    People who have had a stroke and have aphasia, I urge them to be a part of an aphasia group.  There are aphasia groups all around the country, about 800 or 900.  If you can’t find one, start one.  It’s very easy.  You can start an aphasia group by two people meeting and talking to each other and telling each other how they sound.  It will grow, more people will come.  You know the saying, ‘if you build it, they will come.’  It’s like a joy to be in an aphasia group.

  • Richard:

    You know, according to the New York Times , more and more kids are having strokes. 

  • Harvey:

    Yes.

  • Richard:

    You know, they’re seeing it in infants and children, I’m shocked at that.  Are they seeing aphasia in that same age group?

  • Harvey:

    Yes. 

  • Richard:

    What do you make of it?

  • Harvey:

    There are people as young as 7 years old who have aphasia.  It knows no age.  Common thinking used to be that old people have strokes and they have a language problem stemming from the stroke and that’s it.  But recent developments over the past 20 years, aphasia has grown.  People are addressing the need, and now children who are suffering from strokes, aphasia, it’s an area that is uncapped, bringing music to children who have strokes to try and teach them the trick a melodic intonation therapy.  It hasn’t been done yet as a movement.  It’s a whole world of aphasia.

  • Richard:

    Do you have kids in your groups?

  • Harvey:

    No we have, well, 21 years of age up to 87.

  • Richard:

    Really.

  • Harvey:

    All in one group. 

  • Richard:

    And you can give these people hope.

  • Harvey:

    Yes.  They all have hope.  That’s why they come to the groups.  Week after week, they come to groups and they can laugh together and cry together and be able to speak, and nothing is better than saying your first words and having people with aphasia who have the same problem saying to you, ‘Yay, you did it, now say something else.’  That’s the group, the meaning of the group. 

  • Richard:

    Harvey, you seem to have a good life.  Maybe you’re proving to people that you can go home again. 

  • Harvey:

    You can go home again.  But mind you, there’s no leaving the country of aphasia.  There is no plane, no boat, once you’re there, you’re there.  You can sing your way to heaven but you still have aphasia. 

  • Richard:

    But you can make your peace and live with it. 

  • Harvey:

    Yes, you can.  It’s funny, but aphasia people all over the world have that in common.  They’re all in the country of aphasia. 

  • Richard:

    Well, Harvey Alter, thank you very much for taking us on a tour of that country.  We’ve learned a lot and we appreciate it. 

  • Harvey:

    It’s my pleasure to get you to understand what it is we’re going through. 

  • Richard:

    Thanks.

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