5:32 — Diagnosis
So I went back to the doctor. I saw two doctors, both of whom said, “You definitely don’t present as someone with Parkinson’s. You don’t have Parkinson’s.”
I’ve even got that written down in my medical notes, so it’s not just me making this up. I saw it: “The young lady definitely did not present with Parkinson’s.”
So I went privately to a private doctor. He had me do all the tests where you lie back on your back and cross your arms, and then you have to count backwards from a thousand in sevens or something awkward.
I was doing [the test], because I’m so competitive, of course, I was trying to go as fast as I could. I wasn’t thinking about my hands at all. I realized my hands were starting to shake, my arms.
He said, “I really do think you do have Parkinson’s, but I’ll tell you what, I’ll give [you] the DaTscan test just to be sure.”
Which they don’t often do. I don’t know why I’m so lucky, really. Anyway, he got that done for me on the NHS [National Health Service].
6:43 — Treatment Decisions
So he said, “You do have Parkinson’s.”
So [he] started talking about treatments, offered me dopamine agonists, but of course warned me about the obsessive-compulsive behavior [a possible medication side effect].
I was terrified of that, so I didn’t actually start taking any medication until that December.
I think a lot of people do that. It’s almost like you’re scared to start, because also, even with levodopa in particular, you hear these stories that you’ve got five years and then it doesn’t work anymore.
So should we start it later? This is what I think patients tend to feel. Maybe we should start it later, then we’ve got five years. Maybe I should hang on.
But in the end, the doctor talked a bit of sense into me.
I saw a very top doctor here. I was very lucky again, privately. She also worked for the NHS. I saw her first of all when I still had private insurance, when I first came to Oxfordshire.
Doctor Hu, her name is. She’s H-U, not W-H-O. Doctor Hu. Absolutely fantastic. She does research all around the world, everything.
And so she got me onto the levodopa/carbidopa [Parkinson’s medication]. So I didn’t ever take the agonists, to be honest.
But from that day onwards, I’ve been an insomniac who could not, until very recently, could not sleep at all night long, listening to the church bells ring every 15 minutes.
8:27 — Nighttime Symptoms and Medication
I get a lot of leg pain at night. That has sorted that more or less.
[I’m] taking a very small dose because now I’m also taking a teeny tiny dose, point 250 micrograms of clonazepam [a medication sometimes prescribed for sleep-related symptoms].
12:13 — Physical Symptoms and Everyday Challenges
I’ve just had problems with everything.
I haven’t been at death’s door with them, but the Health Service [NHS] always taken me seriously.
I don’t think they think I’m a hypochondriac, but you feel like a hypochondriac.
But other times, we go, “I’m not that old.”
Here I was feeling stiffer, stiffer. I think that’s what [I was] worrying about.
I’d see people my age when I was doing drama rehearsals, music rehearsals. They’d be kneeling on the floor, and then they’d stand up again.
I think, “I don’t think I could do that. I wouldn’t dare get down there because I’m not sure I could get up again.”
I would be embarrassed in front of all these people.
My knees, terrible knees. I had both knees done. I have had arthroscopies [minimally invasive joint procedures] on both knees.
I just had so many things.
Interviewer: As you described the constellation of symptoms, folks might have thought of arthritis of sorts, or some sort of inflammation. Did anyone ever—yeah, anyone have X-rays?
Isabelle: They always say you’ve got inflammation or arthritis. It’s probably arthritis.
