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New Diagnoses, New Posses

Thursday April 19, 2018

 

New Diagnoses, New Posses

 

A new community can be affirming—and alienating. Especially when it revolves around a neurodegenerative disease. 

Brian Harris is familiar with community engagement. He’s still getting to know Parkinson’s. Diagnosed with Young Onset at age 48, he recognized a distinct need for the connection and support that don’t come home with you from the doctor’s office. Brian recently formed the Seattle Young Onset support group (SEAYOPD).

On March 26th, Brian shared with me his experience of Parkinson’s, and of belonging to a whole new community.

 

Brian Harris: BH

 

On his diagnosis:

 

BH: For two years I tried to ignore everything: ‘I know something’s wrong but I’m just going to wait and see.’

In the six months after diagnosis, if I picked up something [about Parkinson’s] to read, I would get depressed and not touch it for weeks. Until I saw my grandmother, who’s 95. She said, ‘Well, what are you going to do about it now? You’ve got to do something.’

So I told myself, ‘Okay, she’s right. I’ve gotta start dealing with it.’

Then I began reaching out. I went to a few support groups—I realized there was a hole in the community support for newly diagnosed people. Because [most] groups...they’re terrifying to us new people. It’s not the type of information you need, just yet.

 

On starting SEAYOPD:

 

BH: I have a coworker whose husband has Parkinson’s. We got coffee, we talked about it, and about other stuff too. I realized that this is what I need: someone to talk to or do things with, who can relate [to Parkinson’s], but it’s not the focus of why you’re there.

I’ve been involved with community-based organizations throughout my life. I am an organizer, I take charge when I need to. I told myself, ‘I can do this. I know the logistics.’ Really, I started SEAYOPD for selfish reasons: I needed somebody else.

That’s how I presented it to the group: make this your own. If there’s something you want to do, let us know—the only way this group is going to function is if we all take ownership of it.

The group is made up of people from all over the metropolitan area. The first gathering was at my house. Then we did a snow-shoe and a cross-country skiing day trips, up to Snoqualmie.

Most members are under 60, often working. But that number is flexible. I see it more as newly diagnosed, and family and caregivers are always welcome. I want the group to be inclusive of our [loved ones] so that they can experience it too.

 

On branching out:

 

BH: One member is a professional organist; he gave us tours of cathedrals and played for us. That was really cool. I don’t go to church very often, but when I have, the organ is usually in the background. As a sax player, it was great to be in the space where the organ is, up close, able to ask questions.

The group has expressed interest in doing all kinds of things, from obstacle courses to bike riding and kayaking. If there’s something you’re passionate about, then let me know and I’ll help organize an event.

It’d be great for the group to be a focal point, but if you connect with someone, don’t wait for the next meeting—have coffee with them. The meaning of the group is to build friendships with other people affected by Parkinson’s, that have the same concerns as you.

 

On advice for newly diagnosed people with Parkinson’s, or for those in a period of depression:

 

BH: You’re not alone. There are other people like you. When you’re ready, there are other people out there, but you need to make that effort, ‘cause it’s not gonna get any better pouting at your house (laughs).

If you don’t do it for yourself, do it for others, so that you’re there and cognizant for longer. When you stop thinking about yourself, you realize it affects other people, too. That can really motivate you.

It's also important to stop comparing yourself to others. I still do it. But it’s never right. You have control over how the disease progresses. You can ignore it, and it’s gonna land on you like a ton of bricks; or you can get up and mitigate it.

In one of the cathedrals we just [toured], I spoke with a woman who was diagnosed around the same time and experiences similar symptoms as me. She said she would have never seen these cathedrals like this if she didn’t have PD. And I said, ‘Just think how lucky we are.’

Sure, Parkinson’s sucks. But you’ve been able to do things you never would have otherwise. There are good things that come into your life because of Parkinson’s.

There is a silver lining to everything in life. You just have to find it. It may not always be shiny and bright—but it’s silver.

 

---

 

For more information about SEAYOPD, contact Brian Harris at:

SEAYOPD@gmail.com

 

Bette Jane Camp
NWPF Blogger

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