As a part of our Parkinson’s Awareness Month Program, we had the opportunity to interview Sharon Krischer. Sharon has been a spokesperson for the Parkinson’s community for the last few years. Diagnosed in 2009, Sharon started her blog Twitchy Woman’s Adventures with Parkinson’s, in 2015 to encourage the exchange of ideas and solutions with others whose lives have been affected. Her blog “Twitchy Woman” has readers from all over the world.
Sharon is positive, motivated, meticulous and she just lights up the room. In the interview, she describes her journey, struggles, how she keeps motivated and the brilliant team that works with the support group. Here are some excerpts:
You were diagnosed with Parkinson's in 2009, how did your life change after that?
It was tough. It was kind of gradual with the Parkinson’s but I was diagnosed with breast cancer and Parkinson’s in the same month.I had surgery and radiation for about 6 weeks. Emotionally, breast cancer was a much easier diagnosis to internalize than Parkinson’s.
I read whatever I could about Parkinson’s at the time. I found one blogger and three foundations. I was also trying to hide my Parkinson’s at the same time. I told my husband immediately, but it was difficult to admit it to the rest of the family. So I was reading all this, but I wasn’t speaking about it to anyone. But it is hard to hide. They figured it out anyway, and then they started sending people to me saying “Speak to this person, they just got diagnosed”.
What symptoms did you have initially?
I had problems with tremors on and off. I’d be writing and my foot would start to shake. One day I fell and broke my left ankle, and my right foot started shaking as well. I went to my doctor and he said he suspected Parkinson’s. It was a complicated situation at the time with one foot in the cast and the other was shaking. And from then it continued to get worse and I got diagnosed in 2009.
My symptoms started in the right side, affecting my handwriting. Eating became more difficult, using a knife was more difficult. At the time, our doctor decided to wait before starting medication. We actually waited for five years before starting medication. It was quite difficult during that time. Medication changed my life. It made things a lot better.
How did your family react to your diagnosis?
It was really a tough thing to tell my kids, of course I told my husband right away. It was hard telling people, at least for the first five years. My mother, I waited until I saw her in person. It was hard saying to people “I have Parkinson’s”. And that is a common problem because it's a disease you expect in an old man, at the time it was the belief. But that image is changing now, we are working on it.
Have you had to adapt your way of life to deal with Parkinson’s?
I have always exercised but I added more to it. I started going to boxing classes, I did yoga two to three times a week. But basically I have been doing everything I did before. I used to play tennis, but my tennis game is going downhill now. I can’t hold the racquet anymore, I keep losing my grip.
I had a business doing calligraphy for many years. But now it’s different. There’s a right brain-left brain shift. So it is difficult to start, to put the pen on paper. But the moment I begin it’s alright.
Sleep is the biggest change. I’ve always had trouble sleeping, but now it’s worse. Driving is difficult sometimes if my foot starts shaking.
What would you want the loved ones and the family ones to really understand about Parkinson’s?
That, they need to listen and they need to ask. Ask questions. Because it's not always easy for us to express what we are feeling inside.
How did you manage to get through the dark moments of Parkinson's?
I had a friend who was diagnosed not too long after I was diagnosed. He was my support group for a long time. We were there for each other.
Can you tell us more about your work in the Parkinson's community?
It started in 2015, at a two-day conference called “Women in Parkinson’s”, organised by what was then the Parkinson’s Disease Foundation. You had to apply for it, and they accepted 25 women. I was lucky to be among those 25 women. We spent two nights and three days in New Jersey, with all kinds of speakers, team building exercises and we were told to go home and do something in our community, to give back.
So I had a list of women in Los Angeles, and I emailed them and asked if they would like to get together for a one-time event. And in the first meeting I had three people respond yes, and the day before the event, one woman called and cancelled because she was afraid and she hadn't met anyone else with Parkinson’s before that. So I asked her if she’d like to meet over coffee a few days later, to which she agreed, and I met the two other women. The three of us decided to do a lunch meeting and invite all these people and see what happens. So we had fifteen people come to the lunch, and we had a speaker and they liked the idea and wanted to continue. But they didn’t want to be a support group, they wanted to have fun. And that’s the basis of the group that we started.
We met every 4-6 weeks, and people travelled from over an hour away. We realised there was such a need for this. It was fun. And then the pandemic hit. An event that got cancelled suggested that we try using zoom. So we tried it. And someone from New Jersey read about it on my blog and asked if she could join. We said okay. This was soon after things had shut down, in March. So we decided to meet every two weeks and then cut back once things relaxed a bit. Here it is, thirteen months later and we are still meeting every two weeks. The women love it, and they don’t want to cut back because it is contact with the outside world. It’s contact with others that have Parkinson’s. The idea that we can learn and have fun at it is really catching on. Women from all over the world participate. We’ve had over four hundred women participate.
We started a peer to peer mentoring program during the lockdown. Newly diagnosed women had nowhere to go. All the dancing and boxing classes that we used to go to were a source of support for them, and they couldn't go there now. We now have them in these sessions and it’s going really well. When we floated the mentoring program, I asked women in the group to volunteer. And I got a really great team that put together the entire package in less than three months.
A lot of people in India and other countries often face stigma relating to Parkinson's and are unwilling to talk about it. What could we do to change things around?
Now with Parkinson’s awareness month people are understanding Parkinson's more, and are willing to express it. Awareness is key. Now people find us literally the day they are diagnosed, which wasn’t the case a few years ago.
What would you say to someone just diagnosed with Parkinson's?
Hang in there! There are people who can help you. And exercise a lot. You’re not alone.
We really enjoyed speaking with Sharon. Her proactive approach to life and her kindness really warmed our hearts. Keep going strong! Do head over to Sharon’s blog and have a look at https://twitchywoman.com.
Stay tuned for more in our series during Parkinson’s Awareness Month 2021.