In 2000, at the age of 36, Mike Weinman was diagnosed with PD. An experienced finance and operations executive, Mike has served as Treasurer of PCLA since its founding. He also runs a support group for those living with Young Onset Parkinson’s disease. We spoke to Mike about his experience as a support group leader, his role in the formation of PCLA, and how Parkinson’s has impacted his family..
Mike, you are a founding board member of PCLA. How did the organization start, and why did you decide to get involved?
Nessa [Weinman, Mike’s wife] and I had been involved in another Parkinson’s non-profit, but the organization didn’t have as much of a local focus as we would’ve like. I’d known [fellow Board members] Patrick LosSasso, Judy Yaras, and Bob Potter for years when they told us they wanted to start a new non-profit that would focus on what people with PD in Los Angeles need.
I liked the mission they proposed and agreed to join the Board. I’d just decided to scale back at my job, so the timing was good for me. I’d been running my support group for a couple of years at the point, and helping to get PCLA started was another way to give back to the community.
You mentioned your support group. Would you tell us more about it?
I’ve been running this group for about 6 years. It is an encouraging, open group with a conversation format. Around 10-20 people come each month, both people with PD and care partners, and we have open dialogue about our current challenges and share information and resources.
Are there some topics that come up again and again during these conversations?
Medication management is a frequent topic of conversation. And medication changes, as well – I remember at one point there was a change in the way the generic form of Sinemet [carbidopa levodopa] was being issued, at one particular pharmacy that several people in the group used. Once we realized we had all noticed a change in the medication, we shared notes and worked together to track down the information we needed to fix the problem.
That’s a very real benefit of support groups – the ability to crowd-source information and share experiences. Without that, some of the group members might’ve been struggling to figure out the medication issue for much longer.
That’s right – including me!
You mentioned you’ve been running the group for six years. Do you still find it beneficial in your journey with PD?
Yes, I do. It is rewarding to help others, and I enjoy the conversations and still find them helpful.
You were diagnosed at age 36. How long had you been having symptoms?
I’d been having symptoms for maybe two years. The first symptoms mimicked sports injuries, so I first went to see a sports medicine doctor. Then I began to notice changes in the left side of my body – my arm wasn’t swinging when I walked. I went to the doctor, and they sent me to see a neurologist, which I was not expecting. I then went through about six months of testing – with a general neurologist, not a movement disorder specialist – to try to figure out what was going on. Ultimately, it was Jeff Bronstein [at UCLA] who diagnosed me.
What was your reaction to the diagnosis?
It was disconcerting. The only thing I really knew about Parkinson’s at that point was the Michael J. Fox had it.
For the first five years, it didn’t really impact my life. The medication managed my symptoms well, and I was able to keep working, keep exercising, and raise my young family.
You mentioned your wife Nessa. She has been very involved in the Parkinson’s community, and runs a support group, as well. [Nessa’s group meets once a month, in the morning on the 2nd Monday of the month, in Westwood. To read more about Nessa’s journey as a caregiver read her recent blog post here. You and Nessa have three sons. They were pretty young when you were diagnosed, so they’ve grown up with PD in the family. How has life with Parkinson’s been for them?
They are really empathetic, and they help out a lot. But there have been challenges for them, as well. It’s hard for them to see me struggle, and it was difficult at times for them to have a dad who couldn’t do some of the things that other dads do.
What’s next for PCLA? What are you most excited about?
Getting our information & referral helpline established last year was a big move forward for us. I think the continuing education programs [such as November 2018’s Life Beyond the Basics] are a very important part of what we do. The Living Artistically art exhibitions, as well.
Another big step would be to have a walk or hike, to raise money for even more programs to help support the community. To take our education programs to the next level I’d like to see us someday do a multi-day Parkinson’s wellness retreat, for people with PD and care partners and family members.
Thanks for talking with us, Mike! Do you have any words of advice for other members of our community?
It’s really important to stay active, and to make the most of what you’ve got. Work to maintain perspective on what’s most important. Living with PD has made me re-prioritize what’s most important in my life — like spending time with my family, and going to my boys’ sporting events when they were younger.