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Stronger Together: Parents with Parkinson's

Tuesday April 30, 2019

Stronger Together: Parents with Parkinson’s

Young onset Parkinson’s affects young to middle aged adults. This means that parents can be affected in the middle of raising their children. When a condition like Parkinson’s comes along, it can be hard for kids and teens to cope with watching their parent navigate that journey.

My father was diagnosed with young onset Parkinson’s when he was 45 years old. He told me the news about his diagnosis during the summer after my freshman year of highs school; I was fifteen.

Hearing that he was diagnosed truly broke my heart, as I had no idea why this had to happen to such an amazing man. Over the past three years, I have watched him get DBS surgery, get worse, and get better. I have seen his ups and his downs in the condition.To be honest, I still have not gotten completely used to seeing his symptoms show. Every time I see him struggle, a part of me hurts because I do not want him to have to go through it.

However, through him having Parkinson’s, I have learned so much more about who he is and about how to best deal with adversity in life.

I decided to sit down with my dad and ask him questions about his experience as a parent with Parkinson’s. My goal for this interview is to connect with parents with Parkinson’s and give them a resource to relate to.

 

1. What were your thoughts leading up to first telling me (your daughter) about your diagnosis?

My initial thoughts about telling you began long before my diagnosis. I was experiencing very subtle, yet noticeable early symptoms; then pursuing them through a series of doctor evaluations. Considering the depth, strength and authenticity of our relationship, coupled with your maturity; I thought long and hard about sharing that journey with you. Ultimately, I resisted sharing the news and waited until I had a firm diagnosis to avoid potentially creating worry and distraction for no reason. Once the diagnosis came, my next decision was when to tell you. I wanted that time to be when school was out and when we would be together a lot so that you could "see me" and "talk to me" as you were processing the news. That timing became right when summer break started and we left for a vacation the next day.

 

2. What were your biggest concerns regarding how I would react to the news?

My biggest concern about sharing the news was the high degree of empathy you have and how that would manifest. I knew that with your foundation that you would no doubt be sad, but would get through it. My specific concern was that I didn't want you to feel responsible for my care or happiness. I certainly didn't want you to sacrifice your dreams in any way for my care. To the contrary, I wanted you to know that I am fine and that you should continue your journey with no hesitation.

 

3. How do you think being a parent with Parkinson’s has affected your relationship with your family and friends?

When I first was diagnosed, I was focused on the goal of getting myself through [Parkinson's]. However, what I found was that I needed to help everyone around me cope with the news as well. One of my biggest learnings was that everyone responds to hearing about a diagnosis differently. Some people really want to talk to you about [Parkinson's], others would rather not. It is important to respect however they respond to it and honor the relationship in that way. One more thing that I have noticed is that it is very common for people to have ideas and opinions on how I should respond to [Parkinson's] and act on a day to day basis. From this, I have learned that I am the best judge on how I should respond to my symptoms and have become better at focusing on how I want to be.

 

4. What have you learned about the ability to continue life after diagnosis?

When I tell people about my diagnosis I typically say, "I caught a bad break and was diagnosed with Parkinson’s...but it could have been worse...".  I call Parkinson's the "silver lining" disease. While its chronic and has no cure, it’s not fatal. One quote that I find very relevant for managing a chronic disease like Parkinson's is from Darwin, "...it’s not the strongest that survive, it’s those who can best adapt to change.”

 

5. What are some tips that you would like to offer to other parents who are living with Parkinson’s?

I feels strongly that everyone should be afforded the opportunity to choose the path that best fits them. Some people are very private about their lives, others less so. Ultimately, it’s their story to tell, not anyone else's. We should not judge or criticize their choice.

That said, I would encourage every parent with Parkinson's to simply make choices that most benefit their children's ability to move forward successfully. Some important tips that I have gathered are to be open with your kids and have an honest dialogue with them (tailored for age of course), never ask them to keep a secret, and stay as strong as you can with them, but don’t be afraid to show your emotion.

 

- Sailor & Todd West, Stronger Together

 

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