Sandy Yaras is the leader of PCLA’s Let Talk About Parkinson’s support group and our PCLA Online virtual support group. He was diagnosed in 2004 at the age of 63. Sandy taught middle school students for over 20 years and is also an artist, writer, and stand-up comic.

Judy Yaras is Vice-President of PCLA and Director of Museum Shop Operations at Fashion Institute of Design & Merchandising. Her professional background spans the healthcare and retail industries, teaching, and includes boardroom experience for a number of nonprofits.

Sandy and Judy, thanks for chatting with us. Sandy, you are a writer and artist [Sandy’s work has been included in “Living Artistically” in the past]. Have you always led a creative life?

I remember writing a book in the third or fourth grade – actually I wrote and illustrated it – that I tried to get all my friends to read. They weren’t at all interested, though! At some point in elementary school we did  “The Nutcracker” and I danced in it, and made wigs for the whole production. I also made some felt beards, which were held on with gum.

When I went to college I started out studying electronics, but I figured out early that it would lead to a boring career. A friend talked me into taking a technical course for theatre – lighting, and stuff like that – and I ended up diving into it and spending the next five years in the Theatre Arts department. I took a break in my education when our first son was born, and when I went back to finish my degree I made sure to take all the theatre classes after I’d finished the other requirements, so I wouldn’t get distracted.

Judy, you have a creative arts background too, as a musical theatre actor, and a bespoke clothing designer. Did you meet through your work as artists?

Sandy: She answered my ad in the back of Variety.

Judy: In 1967! I was working on being an actor then. I’d studied theatre and music at UCLA. Sandy was working on his first production and he placed an ad looking for actors. The production was Tevye and his Daughters, and I ended up playing Tzeitel.

Sandy: When my father passed away I took a bit of the money he left me to start up the theatre. It’s called Company Theatre and it’s gone on to be very big, actually.

Judy: I ended up leaving acting behind, and for years I had my own custom clothing company. Then I was asked to teach at FIDM [the Fashion Institute of Design & Merchandising, in downtown Los Angeles], where I also took on the role of Director of Operations for the museum shop, which I’m still doing today.

Theatre production and directing, electronics, writing — you sound like quite a Renaissance man, Sandy.

Sandy: I think by the time I was fifty I’d probably had fifty jobs. I get bored and I need to move on and try something new! I love photography and have had several photography businesses. I worked for years in a film-processing lab.

Judy: We think that’s where the Parkinson’s came from – he was mixing those chemicals with his bare hands.

What has been your longest job so far?

Sandy: Teaching. I taught math, science, and computers for middle school for 20 years. I retired the year after I was diagnosed. But I didn’t stay “retired” long – I started taking online play writing courses and wrote a couple of one act plays.

You were diagnosed in 2004. Would you mind sharing your diagnosis story with us?

Sandy: I had fallen a couple of times at work, and I’d had a TIA [transient ischemic attack; a very brief, stroke-like attack]. We went to Santa Monica Hospital and as we were leaving they told us I had a movement disorder. I had no idea what that was.

How did they make that assessment so quickly?

Judy: They could tell by looking at him as he moved. His fist was clenched tight and as he walked his arm didn’t swing. After that we went to see a neurologist. As we were leaving the office –

Sandy: We already had one foot out of the door!

Judy: — they said, “By the way, you have Parkinson’s disease.” We went to see another neurologist for a proper diagnosis. Soon after that, we went to a Young Onset support group.

How was that first support group experience for you?

Sandy: We were initially afraid, like most people – we were afraid to see what our future might look like.

Judy: The first meeting was traumatic, but we stuck with it, because we knew it would be good for us. It was through those meetings that we found our Parkinson’s support network – friends we are still very close to. It was Nessa Weinman, who I met through a support group, who taught us that we needed to find our “new normal” as a couple, and a family, living with PD.

How has Parkinson’s impacted your family?

Judy: The neurologist who diagnosed Sandy spent a lot of time with us. He told us to get ready for a “wild ride” with Parkinson’s, so we braced ourselves. Sandy really only had a slight tremor for a long time – for the first twelve years or so he didn’t look like he had Parkinson’s.

The kids were grown then but it was still hard on them. For a while we were all afraid to let him do anything by himself, because we didn’t want him to get hurt.

Judy, you’ve been a care partner for 15 years. Do you have any tips for self-care for care partners?

Judy: The main thing that really helped me was being physically active. I got very involved in cycling – that was my sport of choice and it gave me a real sense of well-being. I think it’s important for care partners to find a way to connect with themselves physically. Maybe your thing is gardening or walking…whatever it may be that makes you happy and nourishes your soul — work on finding that.

In the early years I did private therapy for myself. Sandy had been facing heart disease for years, and then the Parkinson’s…how do you cope with all that illness? Private therapy really helped me, and so did connecting with other care partners. I still go to a care partner support group.

You founded PCLA after working for years with other Parkinson’s non-profits. What was your vision for this new organization?

Judy: We had a strong network of support early on in the journey, but we worried about other members of the Parkinson’s community. What is out there for the newly diagnosed? Are they finding help and resources? We [Judy and several other PCLA board members] talked a lot about what we wanted to see happen for people with PD in Los Angeles, and we realized that in order to have what we wanted, we’d have to create it ourselves.

We wanted to focus on support – not fundraising for research, as other organizations were working on that – and get an information and referral person. We wanted to make ourselves available to people new to the journey to let them know that it gets better, that you can have a life with Parkinson’s. We were seeing so many young people who were scared of what was coming for them, and needed help. So, we started PCLA, in my living room!

Can you tell us what is next for PCLA?

Judy: I’m really excited about our transportation program. We just had our first fundraiser for that. I have a person in my home with PD who can’t drive, and I know there are so many others.

In September our Living Artistically with Parkinson’s exhibition returns. This is one of our signature events – an exhibition of artworks by people with PD. We kept meeting people with PD who had never before been artistic, and suddenly got creative after living with the disease. Living Artistically gives them an outlet for that creativity, and lets people see their work.

Sandy: We recently launched a virtual support group. There are so many people who don’t live near a group or can’t travel to one, and now they can find support from home. All you need is a computer with a camera, and an internet connection. I’m hoping to see this group grow.

Thank you for talking with us, and thank you for all you do for the Parkinson’s community!