MARIE: Well, first of all: we got the letter confirming Jon's appointments for neuropsych - and are much relieved.

Even better, I am writing this from our holiday (though burglars beware: we have a very keen cat sitter). The 8+ hour flight really took it out of Jon and it's only now, 6 days in, that he's beginning to feel normal again. Or whatever passes for normal these days.

Once again we have made it all the way through customs with more drugs than anyone has any right to need for the length of time we're away. Although we came with everything in original packets carrying Jon's name, plus copies of prescriptions and a letter from the psychiatrist who prescribed the Ritalin (which apparently has reasonable street value), it's always an anxious time when you face the customs guys. I once got in trouble for carrying half an apple, so what couldn't happen with two gross of class B tablets?

Jon has decided to spend the holiday growing a beard. He had one before I met him, and has always claimed to have remained a man with a beard in spirit. Well, it's coming back, and I think I rather like it. It'll save him shaving, which may be the real reason he's growing it, and I must admit that the idea of cut-throat razors and PD is best avoided. Here's how far he got. V. cuddly.

(Un)Happiness

MARIE: I had a really bad start to the day yesterday. I needed to call the hospital to sort out a mess with Jon’s appointment with a neuropsychologist and his next neurology appointment. This is not the first time I call about this, mind you, as we’ve received a number of contradictory appointment letters – it all stems from an initial minor misunderstanding which has ballooned, as these things do. Last time I talked to them, they assured me that Jon is seeing a neuropsychologist on 13 October and his neurologist on 7 November. We have a letter for the latter appointment, and I wanted to also have a piece of paper from the hospital confirming the former appointment.

You’re only supposed to ring about appointments between 8 and 9 in the morning, but their phone was continually engaged, even though I redialed literally once a minute. Kind of frustrating, but I thought: never mind, I’m just after confirmation, and I can probably get that from the secretary who takes over the phone line after 9am. So I rang her and was told “no-o-o, I don’t see the neuropsych appointment on the system, and actually as far as I can tell all your neurology appointments have been cancelled”.

What? But the nurse had promised me…well, she had promised all sorts of things, but only over the phone. So could I get a direct number for the nurse since I hadn’t been able to get through earlier? “No, sorry, I can’t give that out.” Okay, how about the nurse calls me when she’s free? “No, sorry, they don’t like me to promise that.” Right then, how about an email address for the nurse? “No, sorry, I can’t give that out.” Would it then be possible to make a new appointment through the secretary? “No, sorry, only the nurses can make appointments.” BUT I CAN’T GET THROUGH to the nurses! “Sorry, you’ll just have to try again tomorrow.”

I was pretty close to tears by then. Because I didn’t need this extra complication, but more so because these appointments are meant to ascertain whether Jon has a touch of Lewy body dementia which is just about the worst thing I can imagine. The secretary was nice enough and seemed to want to help, only she was unable to.

So I hung up. And broke down. As in completely and utterly broke down. I stood there in the middle of my kitchen and roared out my frustration and fear and anger – not just at the hospital, but at Parkinson’s, and at life itself for doing this to Jon and to me. It’s just as well we live in the countryside with the neighbours at some distance, or I’m sure I’d have had the police round. The cat was certainly terrified. I roared like an animal, loudly and deeply and from the very bottom of my being and my lungs, and I went on for quite a while. I guess I only stopped because my throat hurt and I was out of breath – if I’d been in better shape, I might still have been at it now.

So I had a good cry, and then I pulled myself together, because what else was I going to do?

Later in the day I sat down to read the new issue of the British PD association’s magazine which turned out to have a cover picture of a loving couple, about our age, who had stopped during a bracing walk on a windswept beach to grin happily at the camera. Do you know, that just made me furious. What the hell are they thinking, portraying Parkinson’s as a disease of happy people? They can just f… off with their grinning and their outdoor gear and their offensive happy-clappy Parky jollity, because that is nothing like the Parkinson’s we’ve got in this house – and the more happy Parky pictures I see, the more aggrieved I (am made to) feel. Yes, by all means look at the bright side and stay positive, but do try to maintain some slight connection to reality, okay?

By the way, I got through to the nurse this morning. She said she thought the appointments were actually still okay as originally agreed, even though they were admittedly showing up a bit oddly on the system. She would investigate and get back to me. I’m still waiting.



Photo by Salim Fahdley.