Barbara is a founding member of PCLA’s Board of Directors and Steve is on the advisory board. Barbara has been living with Parkinson’s since 2002. Among career mileposts, she is a past president of the Florida State Museum, the founder and president of a successful wholesale bakery, and, as an early consumer advocate in Virginia, developed toy safety regulations that became a national standard. She also raised two sons who have made their mark in the Los Angeles entertainment industry.
Barbara met Steve while they were students at Columbia University. Barbara was pursuing a masters degree in child psychology and Steve a law degree. Steve became an attorney in the Justice Department in Washington, DC and then a law professor at the University of Florida before moving into private practice in Washington and Florida, and eventually California.
The Rubins moved to the Los Angeles area from Virginia in 2009, to live near their two sons and their families. They have two granddaughters.
Barbara and Steve, thank you for speaking with us today. Barbara, would you share your diagnosis story with us?
Barbara: It began with a slight tremor in my left thumb, in 2002. This spread progressively to my other fingers and my hand, then up my arm and down to my leg on my left side. The diagnosis of the first neurologist I consulted was either Parkinson’s or a “benign tremor.” He thought it was the latter, so he prescribed a medication that would cure a benign tremor, but would do nothing for Parkinson’s. If the tremor did not stop, I would be given the levodopa test for Parkinson’s. He wanted to eliminate these two possibilities before looking for other causes. At the time, my husband and I had only a vague idea what Parkinson’s was. Both my mother and Steve’s grandmother had been diagnosed with Parkinson’s many years before. But our knowledge of the disease was rudimentary, and vast strides in knowledge and treatment were taking place. Steve and I decided to read as much as we could. From the very start, this was a joint project.
The benign tremor medicine had no effect, but did have significant side effects. I then was given the levodopa test for Parkinson’s. That, too, had no discernable effect, ruling out Parkinson’s in the minds of the next several specialists I went to. I was given other tests to try to isolate the cause of the tremor, including a screening for heavy metal toxicity. As it turned out, my heavy metal levels were very high. I was referred to an “alternative medicine” physician who specialized in removing such heavy metals. I got no relief or noticeable improvement from the many medications and procedures I was prescribed. After years fruitlessly pursuing a heavy metal remedy with various specialists, in 2009 Steve and I went to the Mayo Clinic in Rochester, Minnesota. There a young doctor gave me an unconventional levodopa dose on a hunch and I finally responded to it.
Seven years after my first tremor I had a definitive answer. I began taking Sinemet and its positive affect on my symptoms was miraculous. At the end of 2009, Steve and I moved to Los Angeles and investigated the Parkinson’s resources available here. At the time, there was no central point for Parkinson’s information in the Los Angeles area, and everything about Los Angeles was new to us. With this experience, the concept of PCLA made immediate sense to us.
What was your reaction to the Parkinson’s diagnosis?
Barbara: By this time, Steve and I had done a great deal of reading about Parkinson’s, and I was determined to keep up my exercise regime which consisted of walking to the beach in Santa Monica every day (it is exactly 12 blocks and 1 mile each way) so a 2-mile trip. I also found out about the powered recumbent bicycle designed for Parkinson’s patients, which I still use almost every day.
That was quite a long road to diagnosis. What did you learn along the way?
Steve: One of the things we’ve learned – and particularly from the years-long heavy metal distraction – is that you need to know enough and have the conviction to ask probing questions. There is no substitute for self-education and in being able to report what your body is telling you. Most doctors invite this conversation. Barbara has benefited from treatment by some of the best movement disorder specialists we have. Los Angeles is exceptionally rich in Parkinson’s medical resources.
Barbara, you had DBS (deep brain stimulation) surgery in 2013. How has that been for you?
Barbara: That was an irreversible procedure that we studied and asked a lot of, as Steve says, probing questions. We had confidence in our doctor. DBS made sense, and it turned out to be the right decision for me. Because the surgery promised relief from Parkinson’s symptoms with less medication and less medication side effects it sounded like a godsend to us. It really smoothed everything out for me – no more medication dosing and consistency issues.
However, there has been a downside to this. We didn’t anticipate the effect the surgery would ultimately have on my speech and on toe cramping, a form of dystonia. Our medical team for the DBS surgery had said that speech changes can happen after DBS, but that the effect would likely happen within months of the procedure, and that it affected only about 8% of DBS patients. It turned out my speech was significantly impacted. I signed up for therapy with a Parkinson’s speech specialist and found out that I was fairly unique in my speech problems, but that they are connected to changes in my brain caused by DBS. Adjusting the DBS settings to lessen my speech symptoms causes a worsening of my toe cramping. My doctor has done her best to strike a balance but it is an ongoing challenge. My speech symptoms can be isolating. Sometimes strangers give me a quizzical look or turn away. My family has been unwavering, but I left my longstanding friends when we moved here and I feel that absence.
Have you found good sources of support for living with Parkinson’s?
Barbara: Yes. I attend a support group that has been beneficial. Discussing the disease with other people living with it is so helpful. Hearing about what works for other people, what solutions they have found to our common problems, has saved me so much time and trouble. As I mentioned, I suffer from severe toe cramping. Through my own trial and error, I discovered toe shoes and socks provide relief for me. I have shared this experience in support groups. I was surprised doctors did not know about the toe shoes and socks. They now have it as part of their recommendations for patients with a similar condition.
I also attend the P.L.L.U.S [“Parkinson’s Learning, Lifelong Useful Skills”] class at the Collins & Katz YMCA. It is an exercise class and support group in one, and it meets three times a week in West Los Angeles. My speech therapist has a support group for people with speech issues. This has been very beneficial, as well.
Steve: Through all of these groups and resources there has been an opportunity for connection and community for us. We have found people with PD and their caregivers are open to connection, and when you find a kindred spirit, it is a real gift. We would encourage everyone living with Parkinson’s to seek out this kind of connection. The PCLA website is a unique and constantly expanding source of information about opportunities for the Parkinson’s community in the greater Los Angeles area.
Speaking of community, we’re very excited for our first annual PCLA Community Walk in April in Santa Monica. Will you both be participating?
Barbara: Yes! We are forming a team of family and friends. Our sons and my brother’s family are committed and will join us at the event. We are spreading the word to our friends to get them involved, asking for a contribution from those who are too distant to join the walk. It is so heartwarming to be surrounded by people dear to me who “show up” at events such as PCLA’s inaugural Community Walk.
Thank you for sharing with us some of the lessons you’ve learned in living with Parkinson’s. We look forward to seeing you at the Community Walk!