On changing meds

Parkinson's isn't a disease that stands still. It can't be accused of complacency. When it gets its hooks stuck into you, it doesn't stop there, merely being a nuisance is not enough. It works damn hard at ensuring that it takes over your life, and progressively makes your life harder for you and your family. So little by little more things start to become difficult and more symptoms start to emerge.

It's vicious and remorseless.

In the early days, the symptoms tend to be easily controllable by exercise and relatively light touch medication. I started on Resageline, which is meant to slow the daily loss of dopamine. It's a way of getting more bang for your dopamine buck.

Interestingly there is some evidence that 1mg Resageline can slow the progression of Parkinson's. The manufacturer isn't allowed to claim this however as when they increased the strength to 2 mg, no improvement could be found, so failed the trials.

No problems, I barely noticed, but then I barely noticed the Parkinsons. But as time went by, my body started demanding more support and I moved on to Pramipexole a dopamine agonist, 1 mg, then 2.1 mg, then 3.1 mg. The reason this was chosen was that one of the non-motor symptoms I was exhibiting, was relatively mild anxiety and the consultant advised that this drug can help with that.

But as time passes, more dopamine producers die off and your body needs additional support and additional symptoms come into play. 

And things start getting more complicated and judgements have to be made and risks balanced.

So as I have said in other posts dopamine agonists come with various risks, mainly they can trigger obsessive behaviour, gambling, hypersexuality, compulsive shopping and porn. In addition Dyskinesias, or the erratic and involuntary, writhing movements, which are a result of the medication and not a symptom of Parkinson's itself, becomes more likely.

And of course the stronger the medication the greater the risk of developing these problems.

Following a visit from my Parkinson's practitioner and the discussion I had with her about how things are progressing, the consultant decided to change my medication to Rotigotine Transdermal patches, similar in principle to nicotine patches, allowing medication to be supplied evenly into my system over 24 hours. The patch is put on in the morning and replaced the next day. You are however not allowed to place the patch on the same piece of skin within a 14-day window. 

The first I knew of this proposed change was when the practitioner phoned me up to ask how hairy I was! Which startled me somewhat. However, even on the hair-free parts of my body, taking the damn thing off smarts!

As I take two patches and they advise only applying to certain parts of the body, keeping up with where you have been and when is difficult.

I'm considering getting the numbers 1 to 14 tattooed on the right and left half of my body as an aid to where to place the next patch.

However, after the first day on the patches, everything imploded. My right hand and arm have almost ceased to function, except when it shakes, my anxiety has gone through the roof and day-to-day decisions and activities have become extremely stressful. I have also stiffened up and slowed down.

The wife isn't happy and has badgered the practitioner to increase the dosage. 

But here's the rub, it can take several weeks to get the dosage right and you achieve that by methodically increasing the dose, trying it for several weeks and then moving on to the next level until you get the results you need.

So in the meantime my meds are increasing from 10mg to 12mg. Hopefully this will give me some relief and I will start getting back my equilibrium. 

However the wife is concerned about the increasing risk of obsessive behaviour and is threatening to relieve me of my credit cards.

I won't have a choice. Either I give in, or I will have to be prepared to battle daily.

Life is too short.

I'm of to the pub. Now that's something I want to become obsessive with. 

Comment:

I should remind readers this blog is about my experience. And although my experience in changing meds is not unique, neither is it universal. Some people breeze through changing medication, others have it worse. 

I'm just grateful that there is effective medication and if occasionally things are difficult, 50 years ago things were a lot worse.