Robins Parkinson’s story part 5 – to mess with drugs or not?

To mess with drugs or not, that is the question. Or Robin does a remix of mess a round by Ray Charles.

Now I know you will all be wondering from the title which drugs I have added to the mix. Is this blog going to look at the affects of taking marijuana, ecstasy or other non prescribed drugs on the condition? While this would be interesting, I’m afraid that’s not for today. What I am actually talking about is whether to mess around with the drugs you have been prescribed.

Some may call me, cynical, inquisitive, questioning, a doubter, a non-believer, and possibly argumentative to name a few. I prefer thoughtful, caring, considerate thinker, who likes to challenge theories always on the quest for proof and facts.

Have you ever taken the time to read that small, folded piece of paperwork that comes with your prescription drugs? They make interesting reading, especially potential side effects. Now I am not suggesting you get all or any of the side effects, but most of the drugs used for treating Parkinson’s appear to have side effects that sound just like the symptoms of Parkinson’s itself. Here’s a few from my drugs regime:

General feeling of being unwell
Musculoskeletal pain, including neck pain, joint pain and stiff muscles
Numbness and muscle weakness
Depression and confusion
Dizziness and falls
Tremor
Dyskinesia
Cramps

So, I have been prescribed an arsenal of drugs to help fight Parkinson’s which have potential side effects common to the symptoms of the disease you are trying to treat. Which leads to the big question.

Am I better with or without medication?

If you ever want to see that look of concern on your Parkinson’s nurse face, suggest you are going to try altering or stopping your drugs. You are likely to get the response “You can’t stop the medication your on!”

It would be irresponsible of me to suggest to stop is a good idea. There are research projects where they stop your drugs regime, but they will want to keep you in hospital during that period for close scrutiny. This is not for the faint-hearted and requires great commitment. The inquisitive me would like to do this one day as it’s the only way to see the real effects of taking the drugs. It would also show me what I am like without any medication. Maybe in a couple of years.

OK, while I wasn’t suggesting a full speed to zero approach, I felt the only way for me to truly know if the drugs were having a positive effect was to try reducing them in a controlled way over a few weeks. The drug I wanted to reduce was Ropinirole. I think that I was on 16mg at this point and I reduced at a rate of 2mg until I was down to 10mg. Stupidly, I chose to do this at a time when I was busy with end of year student demands and when I was moving my workshop to a new building. To say this was a stressful time would be somewhat of an understatement. Without the help of my friends and colleagues I may not have made it.

To give you an accurate report on the effect of reducing my drugs is, I’m afraid, difficult. This period has become a little fuzzy, nothing major happened, I may have come the closest to having a nervous breakdown but who is to say that wasn’t just external stress? What I can report back on is that family, friends and work colleagues were in agreement. I was better before the reduction, so I slowly increased drugs back up to 14mg and have left it there. Sorry it’s not more interesting.

This leaves two drugs related things I should mention before the next blog.

I don’t think I was advised early enough about Prescription Prepayment Certificates (£110 for a year). This is a huge saving for your prescription charges for the year over the individual prescription costs. Of course it would be NICE (no pun intended) if the powers that be would make Parkinson’s drugs Free Of Charge, but for now that may be wishful thinking.

The second thing I should report on is my intake of Ibuprofen. This has been a good mask of general aches and pains, however I have been taking a lot for the last couple of years and recently felt uncomfortable, knotted in the stomach area which made sitting for any time difficult. I stopped for a couple of weeks and now try to get by with the bare minimum. This at times is, wait for it, a bit of a pain. However I do feel better in general for the reduction.

I think we will leave it there. Next blog should be interesting, cryptic clue ‘Here we come’…