The Dread of Diagnosis

Here’s a story you may relate to…

You have been feeling some minor shaking or a little bit of stiffness in your hand or in just a finger for a couple of months now. You initially write it off as stress, getting old, or maybe you pushed yourself too hard at yoga. However, it’s now more than just a mild nuisance; it affects your typing and your significant other has made a comment about it, adding, “maybe you should get it checked out.” You visit your doctor, and after a thorough check-up, your worst fears are confirmed: “we don’t know what it is, but it’s probably stress, or you’re getting old, or maybe you over-worked your hand in yoga. Take some ibuprofen and let’s check it again in six months.”

Sound familiar so far?

This is the experience for many of us with Parkinson’s. Parkinson’s is not a disease like Cancer or Diabetes. It cannot be definitively diagnosed with a scan or with a blood sample. Although there are clues in the blood and a scan can show some reduced activity in the areas that the disease affects, There is no magic bullet diagnosis tool (not even Parkinson’s-sniffing dogs or the so-called “Sinemet Challenge.”)

This leaves us, the soon-to-be-diagnosed person with Parkinson’s a lot of uncertainty, especially when stage one Parkinson’s mimics other illnesses that could be much worse (MS, ALS, Huntington’s). Our doctor finally sends you to a neurologist or a movement disorder specialist, and this person can usually give a likely diagnosis of Parkinson’s (or at least Parkinsonism – the symptoms themselves) within an hour. They have one job – to recognize and treat this disease.

You go home, you cry, you mourn the future you could have had and now you most certainly will not. You tell your family, you tell your friends, you do your best to hide it from people at work. But hey, you’re hip to the new therapies. People online say exercise and diet are critical… you can beat this thing! You sign up for yoga classes and boxing lessons. You adopt the Paleo diet and add fish oil and curcumin to your daily supplements. You think you’ve found something millions of others have missed. You’re going to beat Parkinson’s. You’re doing better already!

This is grief talking; denial, to be exact.

There is no cure for Parkinson’s. Even if you do everything recommended, you’ll still have good days and bad days, new symptoms that seemingly appear and disappear at will. You do not know how you will progress, and no… despite what you may have heard, there is no cure.

Sounds pretty grim, doesn’t it? Well, for most of us with this illness, this is how we started out. We all were scared. We all felt alone. We all mourned the future that would never be.

But something happens along the way…

You realize that Parkinson’s is not MS or ALS – you will not die from it. There are people who were diagnosed in their 60s who lived into their 80s and 90s. I know some of these people, at my support groups in person and online. Most of these people took some time to mourn, and then they picked themselves up and made an active decision to continue living life.

That’s the thing with Parkinson’s. You can continue living life. Travel, work, and be yourself. Yes, you will get tired more quickly, you may need voice dictation software for your computer, and you may need to slow down, but you can live a full and happy life, even with Parkinson’s. You may even find a new life purpose: advocating and raising awareness – sharing what you know with others. Many of us move on to this step in our grief cycle after we have arrived at acceptance.

Ultimately, just like Parkinson’s itself, everyone will experience those first few months of symptoms differently. But find solace in knowing that many have traversed this path before you. You are not alone. Be scared, but don’t let the fear derail your life. Allow yourself to open up to people who want to help you get past this initial jolt. One day, you will pay it forward for someone else.

If you’re in search of a group of very accepting people with Parkinson’s, join us on Facebook and come share your story.

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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.