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6 Realizations I've Had Since My Young-Onset Parkinson’s Disease Diagnosis

6 Realizations I've Had Since My Young-Onset Parkinson’s Disease Diagnosis

Natasha McCarthy lives and blogs in Prince Edward Island. Since her Young-onset Parkinson's disease diagnosis in September, at age 37, she's been a stay-at-home mom to her two daughters. She blogs at A Broken Body's Journey.

"In fact, Parkinson's has made me a better person, a better husband, father & overall human being." - Michael J Fox

When I read that quote, I wonder where in his process he came to this realization. I do believe that this diagnosis has its purpose which is yet to be determined but I wonder at what point in my life might I hit a stage where I will whole-heartedly believe in such a statement? Already though, I’ve come to a few realizations of my own.

1.    There’s a lot I can’t control, but some that I can.

I think the most difficult part of processing all this is the realization that although I do have some control over slowing progression with exercise, I have no control over getting better. I am much better than I was before starting on Levodopa, and I'm extremely grateful for the fact that I can time exercise around my dose, or do a craft with my kids.  After all, four months ago those things were almost impossible all of the time. Now I have a window of opportunity and I have joy in those windows albeit brief. However, it was a blow finding out that I should find joy in those approximate two hour periods, continue to time things appropriately and manage the "off times" as best as possible for an indefinite amount of time.

2.    My future is going to look pretty different.

Not being able to work is depressing. It feels like a loss in identity. I understand I have bigger fish to fry right now, being a good mother to my girls and taking care of myself so I can continue to be that for many years is more important, but that doesn't necessarily make the loss easier. It doesn't ease the sense that I am yet again mourning another loss that Parkinson's disease has taken. But, the reality of it is I need to change my way of thinking. Who knows what options the future holds? 

3.    It’s important to focus on the present.

One strange realization in the last week for our family has been to change our pre-programed way of thinking of the future to focusing on the present. We spend a lot of time planning our futures. Suddenly those thoughts aren't dream-worthy anymore -- in fact, they can be scary. The mindset must change to being grateful for what blessings we have today and not thinking too far ahead.  

4. I have a great support system, but people don’t always know what to say.

It's incredible what a simple cluster of words can do during a struggle. I've also been asked a lot of questions.  One piece of advice I'd like to give is to never assume anything about anyone's situation whether it be health related or otherwise. Don't get me wrong, educating yourself on such conditions is appreciated by those affected it's a simple process of asking a question instead of coming across like you know what they are going through. Ask questions, it makes people feel as though you are engaged, that you are a support system. 

5. I’m going to get a lot of questions.

I’ve been asked a lot, what is the difference between Parkinson's and YOPD? Well, nothing. It's still Parkinson's. As for Young versus not, it simply means diagnosed young. That is all. Only about 10 percent of PD diagnoses are under the age of 50. I always did need to be unique, go figure!

6. I don’t feel like I need to hide.

I don't feel the need to hide or alter the truth. This way there is no need for assumptions because I am simply telling it the way it is.  I have good days and bad days. I have days where some simple things that should be easy enough for a child to do will make me cry with fear and frustration. I have days where I'm extra stubborn compared to usual where my only attitude is 'I'm fine, screw you Parkinson's'. I have days where I feel like crap and I'm angry because of it. But more importantly I have a lot of days where I think my attitude is upbeat and I feel determined enough to face the challenges and I find the joy in the little things.  

And through all this sometimes sad but often joyous roller coaster ride I hope that a day will come where I can say that Parkinson's has in fact made me a better person, a better wife, a better mother and a better human being. Until that day I will just keep swimming!

Read Natasha's full post.

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