What happens after you’re diagnosed with Parkinson’s?

sad girl on the windowsill looking out the window

I guarantee you that not one of us in the world who have been diagnosed with any disease ever thought it would happen to us. Whether you live a healthy lifestyle or otherwise nobody sits around thinking “someday I’m going to have Parkinson’s”.  For those of us who have heard those dreaded words from a movement disorder neurologist I am sure you will agree that it was a life changing moment.  Or as I once heard at a conference a catalytic moment in your life. Regardless of how you dealt with or continue to deal with your diagnosis, positive all the way, lock yourself in a room and feel sorry for yourself or a combination of both; there are things that will most likely happen to you, or you will do after your life changing, catalytic moment occurs.

You will throw a pity party
It may be right after your diagnosis when you’re in shock and scared about your future because you just don’t know enough about the disease yet.  It may be long after when you hit a point where you know you’ve progressed in the disease. Or it may just be a random party that happens here & there because your symptoms get the best of you. The reality of it is, even the most positive person is bound to have days where they feel sorry for themselves or are frustrated that this particular day is just way harder than the already hard days. Even the happiest of attitudes are going to have a moment where it’s just hard to find the silver lining or see the glass as half full.  And you know what? That’s ok!  The key is to not let it drag you down day in and day out, have your pitty party.  Kick, scream, throw a fit just don’t let it last for more than a couple days.

You will try and hide it
Even if you are an open book like myself and the world knows you have PD and you’re ok that they do, you will hide at some point.  You’ll try and ‘hide your symptoms’.  If everyone knows you have it this seems ridiculous; but even if you’re “out of the Parkie closet” you’re bound to have a time where you’re either just sick of your symptoms or embarrassed of them. Or worse yet, trying to save someone else from feeling uncomfortable.  You may put your tremoring hand in your pocket so nobody sees it, you may choose to stand rather than sit so they don’t notice you’re fidgeting as much.  Or perhaps you are the ‘Parkie in the closet’ and you’re trying to hide the entire diagnosis from your family, boss etc… Regardless each and everyone one of us will have a moment where to some degree you try and hide it.

You will lose
The sad reality of life is that any major catastrophe or big change in our lives tend to show us who is genuinely there for us. It could be divorce, moving away, having kids or having a diagnosis of a disease like Parkinson’s.  No matter what it’s for certain that you will lose somebody you love (or at the least have your relationship change in a way you don’t want it to) and it’s hard and it sucks.  After all when we are going through something as devastating as being diagnosed with PD that’s the time in life you need your friends and family the most. Sometimes you need to be patient because your diagnosis scares them and they don’t know how to react, however that doesn’t make it right or easier. Sometimes the hard truth is that they just weren’t as in love with you and your friendship/relationship as you were them.  But when you would run out in front of a bus to save your bestie, friend, spouse or family member and they run away like they are being chased by a lion when you get diagnosed it’s a hard pill to swallow.  You will most likely mourn the loss like a death and it will be hard. You will also most likely hope that someday they come back to you and perhaps they will, but you need to be ok with it if they don’t.

overcoming your problems, metaphor with wrecking ball destroying a wall of Problems

You will gain
On the flip side of ‘You will lose’, you will be shocked at the friends, love & support that you gain and are blessed with after your diagnosis. There will be people you never expected to be there for you who suddenly are!  People who will show you in more ways than one that you matter to them and they are there for you on your journey, good bad or otherwise. Not because they feel obligated but because they want to support you. It will warm your heart in ways you never expected, hold onto those people because they are authentic and will make your good days amazing and your bad days great just because they are there for you!

You will hurt
Not to be a Debbie Downer in this post, but refer to ‘You will throw a pity party’ I guess!  However it’s true, you will most likely hurt physically from stiffness or PD in general. Most people with PD experience pain in one way or another, but the hurt that you don’t expect is the emotional hurt.  Many people with PD have depression or anxiety as a symptom of the disease. Yes of course having the disease in itself can be reason enough to be depressed, but the reality is these mood changes and emotional hurts are a part of the disease itself.  And when you were always a positive person who didn’t possess any of these traits it can be difficult to understand how to cope with them. But know that it’s normal and you will be ok and do not be afraid to talk to your neurologist about it.

You will read too much or nothing at all
You’ll become one of two types, the researcher who thinks knowledge is power. Who will read every book there is about PD, read every article out there, every piece of information you can get your eyes on in an effort to stay informed and keep yourself as healthy as possible. OR, you will not want to know another thing about it and keep living your life as is, figuring it out for yourself along the way.

You will be blessed
I’m a true believer that everything happens for a reason, even the bad stuff. After all if not why would bad things happen to good people? Although having Parkinson’s wasn’t part of the plan and it’s certainly not something you would have chosen there are gifts to be had from it. The PD community is amazing, welcoming and full of care & support for each other. Reach out to them and you’ll see it was worth attending a support group meeting, or connecting online with other people who have it. They can give you advice, suggestions and simply be there for you knowing what you’re going through.  We all have a purpose in life and if the PD card was dealt to you (or any other bad card for that matter) look for the gifts that will come because of it. Some days it may be tough to find them but I assure you they are there if you’re open to finding the blessings.

Although some of these things seem negative there’s a positive in them all if you look hard enough. The reality is that in the bad things you will find what’s really important to you in your life. Your perspective will change for the better because the little things so many of us fret or stress about just won’t matter anymore. We will focus on what’s important moving forward and that could be a variety of things big or small.  You may have exercised in the past because you wanted to be a certain size or weight where as now that no longer matters to you and you are free of the numbers on a scale. Because you now exercise to keep your body working properly!  You may have been the social butterfly that attended every event/party there was because you wanted to be surrounded by a ton of friends always.  Where as now you prefer to keep your circle tight with genuine people that care about you and you love to be around, this is likely much more fulfilling!  So my point being rather than focusing on what you lost or the negative “thing” you’ll do or will happen to you look at it in more depth and see how the flip side of it can mean a blessing in disguise and a more enjoyable life experience.
The most important thing you “should” do after your diagnosis is find the Joy in your Journey, it’s there… I promise…

Natasha McCarthy.

Follow Natasha’s blog, A broken body’s journey    

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