I recently came across a website for Parkinson's disease and they were promoting an article of ways to cope when receiving a diagnosis of PD. I wanted to see if this article was going to be any more realistic than others I have read and to my disappointment, no – it wasn't.
They started out by stating that 'anyone who has had PD for a while will you tell you the best of coping techniques are getting involved and staying active with a support or activity group.'
Let's just start with that statement.
First of all, we are supposed to be addressing ways to cope with a diagnosis, not what to do after you have coped with the diagnosis. Does no one else see the difference? I mean, people, you have to be deal with the news before you can act upon it. So, for all of those newly diagnosed with PD, here are my ways to cope with a diagnosis:
- stare at you're doctor blankly for about fifteen minutes
- scream some more
- call your best friend and do all of the above
- if you don't have a best friend, call me. I need one. Plus, I'll understand.
Let's be real. We were not (okay, I wasn't anyhow) thinking about what support group we wanted to join or what song in Treble Clefs we were going to sing when we got a diagnosis. No, to be realistic, we stared blankly into our doctors eyes, or we grabbed the hand of the one beside us or we cried. (Or all of the above.)
If you have been recently diagnosed, all of those reactions are normal, sane, healthy, and expected. Yourdoctor should be concerned if you didn't react with at least one of the 'coping' mechanisms above. That would mean:
- you need hearing aides
- you weren't paying attention
- you're in denial
- all of the above
My guess would be 3. That is also normal at some stage in the game. So is anger. But, denial, if not dealt with, can be very unhealthy and to have PD and be unhealthy isn't healthy.
Is that an oxymoron? Being healthy with PD?
The article went on to state that “everyone in the PD support groups knew first hand at least some of what you're going through and they're more than happy to share their experiences…”
While I understand the point of what they were saying, as people who have been diagnosed with PD for a time now, we need to remember that newly diagnoses often need to be the ones to talk it out and not sit through the history of our experience. Listening will provide for us the tools needed to best help the other person. Do they need encouragement? Compassion? Advice? Just a shoulder to cry on? If we're busy yakking, we won't know.
“Don't face Parkinson's alone. Give us a call.” they said. I think this is amusing. Don't face it alone. Make a phone call. And, why not, “Come see us?” I know, I know. A phone call is less threatening, but it was kind of a funny play on words
Moving on, again…
They gave a recommendation for a coping mechanism: “…read, 'Here are the Tools You Need,' an About-dot-com article. It was a skim 'article' for promoting five other articles (by the same author as the first About-dot-com article on 'the tools') on the web. These mechanisms included: get religion, problem solve, seek support, reconstruct cognitively, and what not to do. Basically it came down to thinking positively and not focusing/getting stuck in the negative, get a support system around you, think of PD symptoms/challenges as a problem to solve in order to find the best coping mechanisms for you.
The advice was basic and could be applied to most any tough situation. The article ended with this gem: “…it is important that you remember that YOU have Parkinson’s – Parkinson’s does not have YOU.”
Now, I know what people are saying when they say, “I have PD – it doesn't have me.” Really, I do. I've even said it. But, to be honest – I loathe that saying because the fact is (to me), IT DOES HAVE ME but, the other fact is, I HAVE IT.
I found out it had me and now I am doing all I can to show it who's boss. Sometimes I can subdue it and sometimes it gets the upper hand and so I fight harder. I think a better way to say it is, PD may have a hold on me, but I've got a stronger hold on it. I don't want to be in denial and for me saying “I don't have PD”, made me feel like I wasn't facing this disease head on. (Picky, picky.)
Anyhow – how did I cope with my diagnosis? I cried. I stared at my doctor for fifteen seconds – not minutes. (I didn't want to give him a complex.) Then I went home and cried some more. Now, sometimes (yes, there are days I am still find myself coping with the diagnosis) I just groan, wishing I could just change it. But alas, I can't and so on those days when I realize there's not a thing I can do about having this little monster who incessantly follows me around wherever I go, I pick apart articles on how to cope. What constructive coping mechanisms to you have?
Keep smiling and stay positive -
We're on this crazy journey together.