The NHS is a marvellous thing, except when it isn't.
Having agreed with my consultant last November to start on medication to relieve the symptoms of my Parkinson’s, I was told to expect that a couple of weeks might pass before the instructions arrived with my GP to actually prescribe the tablets. In the end there was some epic miscommunication between the hospital, the GP, the pharmacy and myself resulting in a delay of about 9 weeks before I actually got my hands on the tablets.
The consultant had gone over the main points with me, including side effects. The leaflet inside the pack was lengthy and listed many more.
Highlights include:
Palpitations
Twitching/spasms
Inflammation of the veins (wtf, that’s a thing?)
Dizziness when standing up
UTIs
Discoloration of urine, sweat or saliva
Hair loss
Insomnia/excessive sleepiness during the day
Loss of appetite/increased appetite
Dream abnormalities, confusion, feeling agitated
Persistent abnormal erection of the penis (think I’m safe enough there)
Nausea
In fact nausea is expected so they throw a 2nd anti-nausea drug into the pills too as standard.
Drug therapy for Parkinson’s hasn’t really changed much since the 1970s. While it is disheartening that there haven’t been any significant advances, it does mean that the drugs are well understood, literally tried and tested on millions of people.
The usual process, which I followed, is to start on a low dose. One tablet per day for a week, then 2 per day the next week then up to the full dose of 3 tablets per day thereafter. It was a little daunting initially popping a pill that will alter my brain chemistry, however I told myself I was just replacing something that was missing and tried not to think about it too much.
Having been somewhat scared by the extensive side effects list I waited for something weird to happen. To be honest I didn't really feel any effects for the first couple of weeks as I ramped up the doses. As I reached full dose the only side effect I noticed was indeed some increase in dream activity. Ordinarily I rarely remember my dreams. But for a couple of weeks, almost every night, I was experiencing very detailed, realistic dreams with distinct narratives which I remembered clearly the next day. This seems to have lessened a bit now and I kinda miss the bizarre journeys that I went on in my sleep. However one strange symptom of Parkinson’s is physically acting out dreams, so I’m hoping to avoid that one.
Parkinson’s is caused by the brain failing to produce enough dopamine, so the meds are replacing that. However a tablet can never replicate natural levels. Because dopamine is linked to motivation-reward behaviour, there is a possibility that if levels aren’t quite right, people can exhibit impulsive behaviour or engage in risky activity such as gambling, spending beyond their means etc. In fact we are told to warn those around us to look out for signs of unusual behaviour. That was a fun conversation to have with my kids.
In terms of actual intended effects, these have also taken a while to become noticeable. Because my symptoms were always a bit on and off before and were very dependent on what I was doing, I sometimes wasn't aware that the medicine was working until I noticed that it wasn't. That is to say that I basically felt “normal” again for a while but only realized that I had when the symptoms started to come back. Now that it has been a few weeks, the pattern seems to be that I see the greatest effect in the morning, although this wears off quicker than I would like and quite some time before the next dose is due. This is something I will take up with the consultant next time I see him or perhaps sooner.
So far I haven't been tempted to start gambling or book a skydive although if/when medication is increased, watch this space….