Thursday 26 September 2019
I saw The Professor last week for my six-monthly check up. It turned out Rachel, who has been researching my case, was on holiday so I had the privilege of catching up with the main man again.
He was in a good mood. Upbeat and welcoming, presumably he had been on an enjoyable summer break himself.
“You look well,” he started. “How have you been?”
“Well I might look well but I don’t feel great. I have a couple of new symptoms since last saw you. Orthostatic hypotension: I felt like I was pretty close to fainting in the office a few times. And problems with my speech. I trip over my tongue sometimes and occasionally even lose my voice. But the biggest problem continues to be fatigue. I have very disturbed sleep most nights meaning I’m tired much of the time. I have no problem getting to sleep. Staying asleep is the problem. Though I think sleep problems are par for the course with Parkinson’s.”
I was on a roll and decided to continue my brain dump so that he had the full picture.
“But I must say the Madopar is very effective. I like the flexibility of being able to take the tablets when I need them. On balance, I don’t think there’s any need to change my prescription.”
He did his routine movement tests and then we discussed each of my new symptoms in turn.
The orthostatic hypotension - low blood pressure causing fainting - is often associated with the hot weather and dehydration, he told me. This seemed on the money... I had experienced several bouts during the summer hot spell, but nothing recently.
He told me my speech sounded fine, though suggested a visit to a speech therapist nevertheless. I fumbled my words a little (perhaps accidentally on purpose) as I acknowledged the idea.
And as for the sleep disturbances, as I suspected, he could offer no remedy. As I told him, the fatigue is part of the package and there’s nothing much anyone can do about it.
My condition had undoubtedly developed since my last appointment, but only slightly. Thankfully my progression is slow. He concurred with my view of leaving my medication unchanged for another six months.
Medical research is painfully slow too.
There was no further news on my genetic analysis, only confirmation that it was in progress, along with a vague prediction that targeted drug treatments are just a few years away. Much as his words were well intentioned and no doubt well informed, I can’t help feeling that the identification of a genetic factor in my family history of Parkinson’s is still a way off.
As for the holy grail of a cure, that feels to me a bit like the promise of nuclear fusion (the process that powers the sun, as opposed to nuclear fission which Is very different). Back in the fifties, nuclear fusion was about thirty years away from solving the world’s energy problems once and for all. Sixty years and billions of research dollars later, it’s still a promising technology - and still about thirty years away from being a reality.
So the theme of the day was slow progression: slow progression of my condition, slow progression of my genetic analysis, and slow progression of the search for a cure.
On the last point, I related to The Professor my ideas following my visit to Kyoto. That, once I retire in a few years’ time, I could offer my data analysis experience to research on a voluntary basis.
“That’s very interesting,” he mused. “A lot of our research involves bioinformatics. Crunching through large volumes of data. And something we find is that it’s hard to retain good people. They all get lured into jobs in The City or with software start ups.”
“You wouldn’t have that problem with me. I’d work for free for say three days a week. I would just need any expenses to be covered. I might also need to be restricted access to some data like my own results. Anyway, I just wanted to sow the seed in case you had any bright ideas about how I could be useful.”
Later that day I sent him my CV. He acknowledged receipt with a thank you and a request to talk again when the time is right.
I don’t know if I can really be helpful in the search for better treatments. But I’d like to try. And perhaps the most useful thing I can contribute is the one thing that was lacking in my visit today.
A sense of urgency.
