Parkinson's. Business as usual.

How to talk to my doctor. Ten tips

ID card? Where’s my hospital ID card? And socks, am I wearing clean socks? What if I have to undergo an examination for one thing or another, on that paper-covered couch in my whiffy socks. And he’ll naturally assume (I have a he) that I’m not looking after myself properly anymore. You bet he’ll ask: are you having difficulties getting dressed?

So, I’ve just got to find two clean, matching socks from somewhere. What?! What time is that appointment again? Two thirty? Oh no, I thought it was three! Nightmare! And it’s always so difficult getting parked on a Tuesday. Right, let’s go, if necessary I’ll just take those socks off. Yesssss, I’m coming! I’m just cleaning my feet!

The doctor takes it all as it comes

The doctor doesn’t have this problem. No-one’s going to see his socks. He just sits there all day, occasionally walking between waiting room, consultation room and those special examination rooms, taking it all as it comes. All those patients who run, half galloping down the corridor, before plonking themselves down in a chair and pretending to calmly read a magazine.

Mrs Robijn…? Good afternoon, please come this way. You do exactly what he says. After all, you’d happily hop after him in those smelly socks if he told you to.

The doctor has 10 minutes

Okay, I’m exaggerating. Because the doctor would actually prefer it if his patients weren’t so obliging. He needs to elicit the true story. In just 10 minutes flat. So, imagine you’re in that waiting room and you can choose only one patient. You’ve got just 10 minutes of their time, not a second more. And in those 10 minutes you’ve got to determine 10 things: Who is she again, has she deteriorated, is she still able to work, is she mentally stable, is she experiencing unexpected side effects, is she still coping, is she taking her medication, is she still exercising, is she letting herself go, does she understand what I’m asking her and can she articulate a response? That’s already 11 different things and you haven’t even begun to assess whether or not she happens to have developed another condition that doesn’t fall under your particular realm of expertise.

If your random patient from the waiting room cannot find the right words, or expresses herself even slightly unclearly, then you’ll never get to the bottom of things in 10 minutes. Yet, you’ve still got to help her. You’ve still got to prescribe something, make a referral or whatever, based on whatever this patient tells you. And that patient will return home with the uneasy feeling that her doctor simply couldn’t understand her!

So, what should you do?

I know I’m not such a patient. I know that I can express myself  well. My husband and I always go together and prepare thoroughly before every visit. And we step through everything on the iPad. Occasionally I’m assigned a neurologist in training. I don’t really mind. I even do some tests for them – on my own initiative. They like that. And I try not to patronise them. Typically, I am the one explaining how this Parkinson’s business all works. Before the young doc can even formulate a question, I’m there with the answer. This might make me seem like a bit of a know-it-all, but it helps those young doctors. For they also need to learn how to glean all of the relevant information from a patient in a mere ten minutes.

The 10 tips for that talk with your doctor

  1. Make sure that you locate your patient ID card AND those clean socks AND check the time of your appointment, one day in advance.
  2. Make a list of those things that, from a disease perspective, you’re reasonably satisfied with and those that are troubling you.
  3. Be honest with yourself and include the things that worry you most, the things that you’d rather not know about and thus eat inexorably away at you.
  4. Recall how the previous appointment went. Perhaps you even made some notes you can refer to?
  5. Try to anticipate what the doctor might ask and check if you have an answer. Be honest.
  6. Rank your list – say from the Not So Serious to the Extremely Serious – and consider what the doctor’s answer might be. Again, be honest and don’t remove anything that you’re afraid of.
  7. Imagine what you would ask if you could only ask (or say) 1 thing. That’s likely your biggest concern.
  8. Practice asking your questions out loud, preferably in front of someone else.
  9. Bring your List of Questions for the Doctor with you, in that same bag or pocket containing your patient ID card.
  10. Shake the doctor’s hand and say: I have something to tell you, so please take a seat.

Of course, there are lists containing concrete questions. And concrete answers. But you’re no doubt familiar with those. Consider instead how difficult it is for your doctor to ascertain how you really are and remember, he only has 10 minutes in which to make sense of your story. Then think about how you can help him.

Your story or your life

Whilst most doctors have usually had some kind of communication training, the average patient has not. I have. In fact, the mastery of language and words is my profession. And yet even we still prepare for every visit as if we’re about to sit our finals. After all, if I want the neurologist to help me, he first needs to know what’s going on.

Okay, one more exaggeration: it’s your story or your life.