Diana and Debrah - Interview for The Michael J. Fox Parkinson's Foundation

The following is an excerpt from an interview from The 5th Dementia Documentary with Diana Davidow who lives with Parkinson’s disease and her partner, Debrah Constance.  The interview took place at their home along the Venice canals.

Serene:  Who noticed your Parkinson’s first?

Diana:  Me.  I didn’t know it was Parkinson’s.  For a couple of years before, I would be sitting in a movie and this foot just torqued.  And I would have to turn it.   I thought that’s so weird.  But I let that go.  I didn’t think anything of it.  But then the other thing I realized in retrospect is that…I have a studio upstairs and I’d be walking there and then all of a sudden it was like my foot fell asleep a little.  I also ignored that.  I’m very good at not taking in what I don’t want to take in.  You know, obviously I stop being unable to feel it so I figured it was nothing.  

My gait slowed down.  I’m a fast walker and I’m trying to get myself to go the way I used to.  I thought this is it, old age.  And so that went on for quite a long time.  And then the tremor.  I had 2 kinds of tremors.  A familial tremor and a Parkinson’s tremor.  Sometimes it’s worse.  My handwriting got tiny.  It was like a miniaturization of my handwriting.  It got so small.   

Meredith (her daughter) was at the doctor’s with me to see whether I had Parkinson’s at UCLA and she saw me writing and she said “You know what mom, you have Parkinson’s, look at your handwriting.”  I said “Yeah I do, I do.”  So when I went in, I had to tell them everything.  

And there’s no definitive way to tell if you have Parkinson’s or not except if you take this particular test.  It’s a kind of an isotope something.  First of all it’s very expensive but she got it for me.  We went to one of those places where you get X-rays.  And they ordered this isotope test and this guy, I had to be there waiting for him, and he ran in with it.  It had to be used immediately. The whole test was set up and she did it and then said “you have Parkinson’s.”  

Serene:  Do you take medication?

Diana:  I don’t take much.  I actually never thought of myself as having Parkinson’s.  It was never really a thing to me. I’ve had it for a long time.  I’ve had it 6 years now.  

Some people have the tremor kind.  Some people have the internal kind.  So I think I’m lucky. The second that I found out, I got myself into everything that I heard was going to work to slow the progression.  I think that it really helped me.   I had the speech therapy at the beginning.  I didn’t have a speech problem but I wanted to make sure, so I did that.  Now I box because that is a very important thing apparently.  I just saw the thing on Michael J. Fox.  Apparently he does boxing.  I go to his annual fund raising gala every year.  I think he’s just great.

Diana:  This is Polly Bear (her dog is brought to her).  She’s the cutest.  Does anyone else have a dog as beautiful as this dog?

Serene: How did you get involved with Music Mends Minds?

Diana: Carol and I were in the same art class.  We talked about it.  We became friends.  We went to New York together to the Michael J. Fox gala.  The way that I got involved with Music Mends Minds was one day when I was at her house having lunch with her and Irwin, Carol suggested Irwin play the piano for me.  He sat down at the piano.  I asked him if he knew any show tunes.  I love singing show tunes.  He started playing and I started singing.  He’s playing and I’m singing and he’s playing and I’m singing and we’re having the best time.  I couldn’t believe this man was playing the piano.  So from that point on I was listening to what she was telling me about him.  

Carol decided to send out an email asking for anyone that could play an instrument.  She got all sorts of responses from people that played an instrument and wanting to join (The 5th Dementia band) and I was getting nothing.  So I told her I had an instrument.  She said “you do?”  I said “I have vocal chords.  I can sing.”  Carol said “ok go over there and sing.”   So I did!  I’ve made good friends there.  Pat, Bob, Leola, they are my buddies.  

Serene:  And now you have a huge group.  You meet twice a week and have the best time.  The music seems to bring everyone together.

Debrah: The fact that nobody was using their instruments or their talents.  And Now. What an unbelievable thing to happen.  It’s like a miracle.   It’s a miraculous find.

Diana:  I really like these people.  I fell in love with the group.  

Serene:  Do you see any change in Diana because of Music Mends Minds?

Debrah:  It’s a really happy interlude in her life.  It’s a nice little piece that’s added.  She brings a lot to the group.  They are lucky to have her.

Serene:  How do you help Diana now that she’s living with Parkinson’s.

Debrah:  I help her by being a loving, supportive partner.  Anything she needs.  Emotionally, with the family.  I’m a good editor.  She has a lot going on.

Diana:  I have all of these roles, these hats.  They’re all great.  I had to give something up.  I had a lot of things on my plate.   What happened was I got tired.  I didn’t look at the Parkinson’s like I had Parkinson’s for a long time.  I didn’t feel anything different.

Debrah:  She didn’t look at feeling tired as part of the Parkinson’s.  In the 20 years that I’ve known you, you don’t seem any different.  You certainly don’t seem like you’re sick or like you have anything other than you.

Diana:  Yeah.  The only thing is that when I get a knee that has a problem and a neck that has a  problem, I’m not used to that.  And then I think well I have to be careful because when I knew I had it, a few years back, I used to fall on the cement.  Which I think might have affected my knees.   It’s just like coming to me now, oh my god, I had really bad falls.  And then it stopped.

1 of their 5 dogs starts barking….

Debrah:  Polly Bear stop barking.

Diana:  Polly Bear, Polly Bear.  Here honey.

Serene:  How do you know which dog is barking. 

Diana:  Their barks are different.

Debrah:  Well that’s a tiny dog.

Serene:  They’re all tiny dogs.

Diana:  Have you seen my artwork?  They are abstract paintings.  I am having a show in January.  I’ll let you know about it if you want to come.

Debrah (pointing):  Her latest ones are the women.

Diana:  The women.  I did a series of women.  Women in power.  Women who are in transition who are becoming.  I have 3 more upstairs and I’m finishing one.  

Serene:  Is this from the art class you did with Carol?

Diana:  Yeah.  I went to this class because I wanted to learn abstract.  

Debrah:  Wait you want to see something?  I have to show you what this guy at the gym gave me.  (She gets her boxing robe to show us that says “The Menace of Venice” on the back and “Black Lives Matter” on both sleeves while shadow boxing with the hood on.)  Don’t laugh.  Wasn’t that nice of him?

Serene:  Here she comes.  (Diana sings Rocky music)  I can’t believe she’s 70.  How often do you box?

Debrah:  5 days a week and on the weekends I take Thai kickboxing.  (She shows us some boxing moves.)

Diana:  I can do that too.  I take boxing 3 times a week.  

Debrah:  You take Parkinson’s boxing.

Diana:  Well believe me it’s tough. (laughs)  Really yeah.  Parkinson’s shmarkinson’s…it’s tough.  That’s it!

Serene:  OMG it’s like a routine.

Diana:  Laughing.

Debrah:  We are a routine.

Diana:  Yeah.

Cheryl and Larry - Interview for Women's Alzheimer's Movement

Throughout my life, my dad and I adored each other but never seemed to have enough time to be together.  Now, we have the time.  Yesterday we watched a bird for an hour on his porch in the rain.  We are connected in the moment.  We can’t talk about the past.  Larry has dementia.  He is aware of his limitations.  When asked about this he has always said…”It is what it is”.  

Larry lived his whole life in Memphis where he was a beloved member of the community.  When he could no longer hide his dementia from his family, I brought him out to Los Angeles to live with me.  Once he got here, I took him to doctors that I trusted who got rid of of unnecessary medications that were making him sleep as well as lowering dosages of other medicines.  Larry told me he felt like Rip Van Winkle; like he’d woken up from a long sleep.  He said everything was beautiful again.  Memories returned, he slept less, he became involved with my family and the community.  

We joined Music Mends Minds where we met Serene Meshel - Dillman, who is filming The 5th Dementia,* a documentary about the band that Larry sings with every week.  He loves being a part of this project.  He never had any musical background but there is a strong sense of community at the rehearsals that lifts his spirits.  He always comes away from singing with the band feeling great.  We play music all the time at home now.   

Larry has spirituality and a belief that all is good in the universe.  He never gets dark or angry.  We go to temple on Friday evenings because he gets more of the feeling of community that he enjoys there.  The rabbi always says Larry is closer to God than anyone else there, even in his state.

When Larry first came out to LA, the ripple effect of caring for him became too much for me.  A social worker at UCLA told me that on a scale from 1 - 10, I was a 12 and that I was going to burn out fast.  To keep myself healthy, I aimed to be a 3!  I was able to get caregiving help for him which relieved me quite a bit.  He now lives in a house near me with his caregivers.  I visit him every day. 

Larry used to have note pads everywhere to remind himself of things he did not want to forget.  Even with the notes, he would ask me to remind him not to forgot something.  He knows things are slipping but he can still relate to me how he feels from his heart.  His continued happiness is my most important goal.  The music, his caregivers, my time with him and keeping him out of pain and in a healthy body all contribute to this.  And now that I’m a “3”, I am keeping myself healthy too.

“It is what it is.”  

I’m just glad we can look at the birds together on his porch while I listen to him hum “Singing in the Rain.”