Young Onset Parkinson's Has It's Own Set of Problems

by Stephanie Cary, Staff Writer
Posted: 07/07/2011 01:00:00

Mauricio2

Tonya Dapson, center, talks about the hardships she has endured at the Young Onset Parkinson's
support group at Torrance Memorial Medical Center. (Robert Casillas/Staff Photographer)


Mauricio Sanchez was never a gambler. When he and his wife would go to Las Vegas, he'd choose dancing over the slots.

Then, suddenly, he found himself frequenting casinos at least twice a week, eventually going bankrupt and on the verge of divorce.

The change in behavior, he later determined, was caused by the medication Mirapex -- a drug used to treat the dopamine imbalance in the brain that is characteristic of Parkinson's disease.

Though the drugmaker, Boehringer Ingelheim Pharmaceuticals, now warns of the possible side effect of compulsive behavior -- including excessive gambling, buying and eating -- most people probably would have a difficult time relating to Sanchez's experience.

But there's at least on place people can.

MauricioIn June, Sanchez hosted his first young-onset Parkinson's disease support group at Torrance Memorial Medical Center, where he will hold the meetings every third Saturday of the month. "We didn't have a young-onset support group here in Torrance," said the 40-year-old Harbor City resident. "We travel every month to (a meeting at) Cedars-Sinai Medical Center, which is a great hospital as well. So I thought we could do the same thing over here in Torrance. There's quite a few of us here

Mauricio Sanchez has started a Young Onset Parkinson's support group in Torrance Memorial Medical Center. Sanchez, right, talks with members of the group during recent meeting. (Robert Casillas/Staff Photographer).


in the South Bay and I'm sure there are other people out there our age."

Parkinson's disease is a neurological disorder that causes tremors and loss of function and coordination. It is a progressive disease for which there is no cure so far.

It most often occurs in adults over age 50; when it occurs in those who are younger, it is considered young-onset Parkinson's disease.

Sanchez was diagnosed with the condition at age 33 and began attending support group meetings at Cedars-Sinai. It was there he and his wife discovered the root of his gambling problem after hearing other people, such as Torrance resident Tonya Dapson, share similar experiences.

"I got divorced probably because of it, bankruptcy," Dapson said. "I was making a good salary. I was the breadwinner, basically, in the family, but I had to go on disability and we lost everything and now I'm living with my mom and working a part-time job and trying to raise three kids as a single parent. It's tough. And I'm 40. I've had it for eight years."

It's these issues that create the need for a young-onset support group, separate from a general Parkinson's disease support group, says Sanchez.

He says members of the two groups are in different stages of life and those with young-onset Parkinson's often are still raising children, having major financial issues and trying to manage a career.

His mission with the group in Torrance is to help young people with Parkinson's learn how to be open with their issues.

But Dapson, who is friends with Sanchez and will be attending his new group, also wants to make the public more aware that young people can, in fact, be diagnosed with Parkinson's.

"It's hard to convince people that it's serious because you're not shaking or physically having tremors or moving funny or whatever. It's masked very easily by the medication you take," Dapson said.

"So you appear to be normal most of the time, but you don't feel that way. And so it's nice to be able to come into a group like this and they are all nodding their heads and saying, `Yeah, I totally get what you're saying' or `I had the same problem' or `I had that problem and this is what I did to fix it.' It just helps."

Lou Modica leads the San Fernando Valley Young-Onset Parkinson's Disease Support Group, which has been meeting the third Wednesday of every month for a year at the Neu Wellness Institute in Woodland Hills.

Like Sanchez, he started the group after realizing that though he was 61, he was in a different place in life than the other attendees in the regular support groups.

"I started going to meetings and I didn't like what I saw because it was a lot of really elderly people that weren't active, so I started looking for an active group because I'm very active," Modica said.

After not finding anything that met his needs, he started his own group with a mission to promote fitness and lifestyle changes. He encourages people with Parkinson's to exercise daily in as many forms as they can.

About eight to 12 people come to his meetings every month, ranging in age from 35 to 85.

The group has given Modica a place to air his feelings and emotions, and he says it's good therapy for others who attend as well.

"Most people don't want to adapt to the lifestyle changes of being disabled. It's a reality that has to be taken into consideration," Modica said.

"We will get together and discuss the topic of dignity -- you know, how do you keep your dignity when you have Parkinson's disease? How do you keep your self-esteem? How do you view yourself? That's why support groups are so good for everybody. They find there's other people shaking, other people having similar problems."

Modica often has speakers attend the meetings, which is something Sanchez plans to do as well.

At the first Torrance meeting, Sanchez brought in a neurologist from UCLA to discuss the symptoms of Parkinson's, treatments, side effects of drugs, and coping mechanisms.

The next meeting will be a share session, during which attendees can discuss their experiences and feelings. Family members are welcome to attend.

Mauricio and Dapson encourage those who are diagnosed with young-onset Parkinson's, or those who have a family member with the disease, to seek a support group because they shouldn't have to go through it alone.

"There's a great deal of therapy in speaking to other people or listening and learning from other people who are going through the same thing," Dapson said. "It's free and it's a great group of people. Everyone is here for the same reason."

Young-onset Parkinson's disease support groups

When: 6:30 p.m. to 8:30 p.m. the third Wednesday of the month.
Where: Neu Wellness Institute, 19730 Ventura Blvd., Suite 104, Woodland Hills.
Information: Lou Modica, 818-903-5607 or email lou_modica@yahoo.com.
Please contact the group leader prior to attending a group for the first time to RSVP.
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When: 7:30 to 9 p.m. the fourth Wednesday of the month
Where: Cedars-Sinai Medical Center, Thalians Mental Health Bldg. - Group Rm A, 8730 Alden Dr.
Information: Linda O'Connor, 310-423-7933.
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When: 2 p.m. to 4 p.m. the third Saturday of the month
Where: Torrance Memorial Medical Center, West Tower, Room B, 3330 Lomita Blvd.
Information: Mauricio Sanchez, 310-325-9110, Ext. 7847.
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SOURCE: Original article published by the Daily Breeze, part of the Los Angeles Newspaper Group, July 7, 2011. 

Other local support groups (updated monthly) can be found at: www.neurocommunity.org - see link at bottom of page under Support Groups.

To find a young onset support group near you or for help getting a group started, contact us.

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