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Stronger Together: Daughters of People With Parkinson’s

Friday March 08, 2019

      

Sailor                                                  Debbie

 

As a child of someone living with Parkinson’s, I have not been able to relate my experiences with many other people my age. I believe that this interview could be the start of creating a new resource for teens and young adults that have parents or other relatives living with Parkinson’s and a way to give them security in knowing that they are not alone.

I met Debbie in August of 2018 when I started working at a makeup and skincare pop up store in University Village. I was immediately drawn to her amazing style, independence, and overall coolness. She quickly became one of my role models. One time, in one of our mid shift chats, she shared with me that her mother was getting DBS surgery that week and that she was very nervous about it. I had never met anyone else around my age who had a parent with Parkinson’s, let alone a parent who was about to go through the same surgery my dad had the past winter. From then on out, I had a girl that I looked up to who was going through the same stuff with her mom that I was going through with my dad.

 

Do you work? Live alone?

I work at a couple skincare stores and take classes a few times a week. I currently live alone in the University District but I do go up to Edmonds to spend the weekends with my parents!

 

How would you describe your upbringing and background?

My upbringing was fairly normal. My family and I immigrated from Thailand when I was 4 years old and for many years we struggled financially. I believe that this has shaped me as a person. My parents were absolutely wonderful. They made sure I was always fed and got whatever I wanted even if that meant that money would be a little tighter that week. Once I got a little older, my parents bought their first restaurant and this is where I learned to work for what I wanted. At the time, this clearly sucked. Being a fifth grader and having to spend my time after school working instead of playing with other kids? Whack. But looking back, it provided me with the strong work ethic that I carry to this day. My parents have taught me everything that I need to be successful in this world.

 

How would you describe your relationship with your family?

I’m an only child so I’ve very close to my parents. Perhaps too close. I will say that during my teenage years aka the years where you’re just mean to your parents for no reason, we drifted apart. Luckily, that was just a phase. I feel like the older I’ve gotten, the closer we have grown and for that, I’m entirely grateful! I can tell my parents just about anything.

 

What was it like when you first heard that your mom was diagnosed with Parkinson’s?

I didn’t entirely know what it meant when my mom was first diagnosed with Parkinson’s. I knew that my Grandpa had it and I had only met him a couple times before he had died but the way everyone spoke about how his health and quality of life deteriorated over the years and that really freaked me out. I also must’ve been around 12 years old when I found out that my mom was diagnosed and at 12, one of my first thoughts was: “Is my mom going to die?”. I mean, I didn’t know what it meant or what it’d do to my mom so that terrified me. It was also so difficult seeing her in such a depressive state. She cried often and asked “why me” and I didn’t have an answer for her which absolutely gutted me. I didn’t want to stress her out even more by letting her see that I was crying so I’d limit my crying to when I whenever I was had a moment to myself or at night so that I could be her rock when she needed me the most.

 

Could you describe your experience in growing up while having a parent with Parkinson’s?

Growing up with a parent with Parkinson’s has been a difficult thing to witness. I think it has forced me to grow up earlier than others. I did research about Parkinson’s, trying to learn everything that I could and hoping to find a cure for my mom. I felt hopeless and helpless. But some days are worse that others. She has the bad days and good days. It’s so disheartening to see her on her bad days and not knowing how to help her. We’ve come to realize that Parkinson’s is just now a part of our lives and not our whole lives.

 

How do you think the Parkinson’s community could better their support for kids and young adults who are living with a parent who has Parkinson’s?

I haven’t ever really thought about that. This is a very interesting thing to think about. I think that perhaps the recommendation of support groups for kids and young adults who are living with a parent who has Parkinson’s could definitely make a huge impact within our community. I’ve always heard of support groups for those with Parkinson’s but never for their kids or family members. Then again, I never really sought that out. I think that, if I had had someone to talk to about everything I was and still am feeling about all of this, I’d be able to process everything in a better manner. Especially amongst a group that consisted of young adults who understand what it’s like to go through the same thing.

 

What do you think the value is in having the ability to talk to other people your age who also have a parent or relative with Parkinson’s?

Besides Sailor, I had never met any young person who has a parent with Parkinson’s. So, you can imagine my surprise when it turned out that her dad and my mom had the same surgeon. It’s really nice to be able to share the same worries for our parents and all the little triumphs that we can celebrate. Sailor has been a great support system for me that I never knew that I was missing from my life! I have only met middle aged adults who have parents with Parkinson’s because, typically, those with Parkinson’s are diagnosed later in life. Connecting with an adult about this sort of thing can be difficult. Even though they are most likely going through the same emotional and mental process as us, I feel like it’s a little more difficult to relate to them due to the age difference.

-

I am incredibly appreciative to have the opportunity to share Debbie’s experience with the NW Parkinson’s community. NW Parkinson's provides support and resources for the whole family; if there is anyone who wants to discuss these topics with a member of our team or wants to join in starting to build new resources for teens and young adults, please contact Sarah: Sarah@NWPF.org

Here is a link to Debbie’s blog! www.debbiekongz.com

 

-Sailor West, NW Parkinson's Community Member & Volunteer

 

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