Bad News for the Consultant

I had bad news for the Consultant, my private insurance provider had made it clear that my Parkinson’s was not going to be funded by them beyond diagnosis. So today was to be my second and last consultation with him.

Considering the excitement at my diagnosis, I was concerned about how he would respond.

After signing in at reception, I sat in the waiting room, with a nice coffee, waiting for the Consultant to appear.

This consultation had two purposes. Firstly to review the results of a brain scan that I’d had to eliminate the possibility of a tumour and secondly to talk about medication and answer my questions on Parkinson’s and what being diagnosed with it meant for my future.

For all those doubters out there, I do have a brain, and I have a scan to prove it.

However, before we got down to business I had to explain the situation on my funding. Suddenly It was as if a Dementor had entered the room. All warmth and hope was sucked out. The atmosphere was as glacial as the Consultant's smile. From that moment on I was an inconvenience, not income.

So instead of engagement, I got bored indifference, underlined by idle rifling through notes with no real attempt to read.

I was a man on a mission, however. Once it was confirmed that my scan was clear, I started asking questions about the medication, types and potential side effects. And to get a bit technical about it, I found out there were three main families: (With links to Parkinson's UK)

Levodopa (co-beneldopa and co-careldopa)

Dopamine agonists (pramipexole, ropinirole)

MAO-B inhibitors (rasagiline, selegiline, safinamide)

There are more, but these are the main ones and are enough to be going on with. I don’t want to get bogged down in too much detail. So what are they and what do they do?

Well as briefly as I can make it, Levodopa and the Dopamine agonists boost dopamine levels, although how they do it differs and the MOA-B inhibitors, slows down the loss of produced Dopamine. As the Consultant put it, they act like a tap slowing the flow of Dopamine,

What none of them do is slow down the progression of Parkinson’s, they simply mask the effects. And because of this, as the disease progresses, higher doses are required.

Which can cause some troubling side effects, the main one’s being:

Nausea.

Involuntary movements.

Worsening of constipation.

Low blood pressure.

Confusion and hallucinations, and (roll of drums!!):

Behavioural problems, such as feeling an uncontrollable need to gamble, hypersexuality, addiction to porn, punding (you can look that up in a dictionary) and horror of horrors, shopping. (Is there no pity in this cruel world?)

Knowing the readership, some of you will be having a good snigger over hyper-sexuality. Well, we'll come to that later.

I found the Consultants attitude to the behavioural problems' side effects, just a little odd and disconcerting;

“Ja, Ja, do not worry, this problem only affects 20% of those who take the medication, it is not a big issue”

20% Bloody Hell, that’s a huge percentage!

“Ja, Ja, you will have to be closely monitored, some patients have been known to gamble away their pension and house, their lives ruined and their family homeless, but as I said do not worry”

No house! No pension! The attitude seemed just a bit blasé to me.

What about the hyper-sexuality? This wasn't me being hopeful.

“Ja, Ja, the constant sexual demands can be problematic, sometimes leading to a break up of the marriage or relationship, of course, it isn't always a problem, sometimes both parties are happy with the new state of affairs”.

Fortuitously I had been put in touch with a couple who had this very problem, so I was later able to find out for myself, how the sufferers (if that’s the right word!) felt. The wife had a very definite view;

“It was fun at the start, quite enjoyable, but it's constant, never-ending. He demands sex all the time, and not always when it’s appropriate. He’s also started to cross-dress, frankly, I want it to stop, I’m sick of it. I need a rest”!

Interesting.

Anyway, following the Consultant's rather disturbing eye-openers, I decided that I'd had enough information to be going on with. I wasn't sure I wanted to hear more, what I now knew was unsettling enough.

Actually, I knew that I didn’t. I was finding this talk of endless, uncontrolled humping disconcerting, and the implied loss of personal autonomy alarming.

I left with my thoughts (and barely a goodbye, or best wishes for the future from the Consultant), phoned the wife and updated her on the types of meds available, along with their potential side effects. She was, understandably, particularly interested in behavioural problems and asked several questions. Still, I was feeling a bit confused during the drive home and concerned about the med choices I had to make.

Now the wife can move fast when she needs to, so I shouldn't have been greatly surprised by what happened when I got home. I walked through the door and before I knew what was happening, found myself being frog-marched upstairs.

What greeted me was a blank form, freshly downloaded from the internet, with the heading “Power of Attorney” and a box waiting for my signature. While digesting that, she informed me that she had also changed password access to all our various accounts.

I should have known, after all where money is concerned, she takes no chances.

Ok, I may have exaggerated here just a bit. The Power of Attorney was only a suggestion and even then not a serious one. However that does not mean that these concerns were not well-founded, too many lives have been ruined not to take the risk of these side effects seriously.

My access to the accounts was eventually restored.

So how has the medication affected me? Well, when I started, and every time I change the strength of the dosage that I have to take, I get a boost in the way I feel and can better operate my hands etc. For a while, my motor skills improve and I feel really good. But all too soon I start to feel things getting harder again. The movement of my right-hand gets more difficult, and I start to struggle to do basic things with it again, like stirring the sugar in my tea, or typing.


Fortunately what I'm not continuously trying to do is find ways of bankrupting the family finances by gambling, neither am I on first-name terms with any bookies. Also, I'm not permanently looking for sexual partners or borrowing my wife's clothes and dressing up in them.

Contrary to some slanderous rumours.

I do suffer from nausea when I first increase medication, and I notice certain symptoms never seem to really improve. Like my anxiety. But then these drugs are better for dealing with motor issues related to Parkinson's, less so non-motor problems like sleep deprivation, constipation, depression etc. A lot of work still needs to be done with regard to alleviating these problems.

All in all, however, things could be a lot worse.

Now then where is my Bet-Fred account number?