Robin’s Parkinson’s story part 4 – it’s all about the drugs baby…

There is some irony in the fact that I have never been good at sitting still, then I receive a diagnosis that will ensure sitting still will eventually seem like a distant memory to me.

I should probably mention while I had been thinking of possible scenarios, Multiple Sclerosis or Motor Neurones Disease for example, it was Nicola who had thought about Parkinson’s. Indeed, the neurologist she chose happened to be a Parkinson’s specialist. This was completely unknown to myself until after my first consultation. Huge thanks and love has to go to Nicola for her well considered choice.

Back to the journey...talking with my consultant, we discussed how we should tackle this diagnosis. I had spent a little time researching Parkinson’s and possible drug regimes on line. Two things quickly became apparent to me:

The fact that long term use of the drugs will cause complications from side affects.
Most of the drugs have a finite life and over time they all appear to lose their effectiveness for the treatment of the disease.

So I spent some time pondering… what’s the best thing about being diagnosed with YOPD? It starts with the word young.Remember it. Embrace it. This may be a lone positive in a time of potential despair.

Sorry I went off on one there, where were we? Oh yes, pondering.

I had decided a softly softly approach may be best as I was young and if I hit all the drugs fast what would be left for me later on in my journey?This is a hugely personal and difficult choice to make and it’s still one I question today.

Should you make the most of your life now, while you are most able?

Should you save something for a rainy day?

Do you continue working or not?

For fucks sake Robin – it’s not raining, you are in a deluge of a storm, it’s blowing gale force 9 and you still can’t decide what to do! Best wait it out. I am sure it will pass and the sun will come out tomorrow. Time I’m sure will help me choose my best course of action. Eventually. I hope.

So, chatting with my consultant we discussed the pro’s and con’s of starting on a slow, low–dose course of medication. My consultant is very much of the opinion that people with Parkinson’s fair better on meds than not. The practice of leaving meds until you desperately need them is considered somewhat ‘old school‘.

The consultant prescribed 1mg of Rasagiline once a day. This would be my last consultation privately and I was jumping ship once again, but this time returning to the slightly listing NHS for my health care. I would keep the same consultant, so what could possibly go wrong?

Word of warning to the ill-informed, if you ever need a prescription never, ever, get one privately. You may not realise it, I certainly didn’t, but if you take one to your pharmacy you won’t pay your normal prescription fee of £8.60. Oh no. I was going to be charged £120 for 28 tablets! The pharmacy did suggest my GP might prescribe them and save me some money. Did he? I’m afraid not. It would appear some doctors can get funny over prescriptions they haven’t made, probably some code of conduct at work here. So I paid heavily for my Rasagiline. Wow, at this price these pills must be good I thought. Lock the doors, this could get exciting…

I awoke the next day cold and naked in a field somewhere off the A303. OK, that’s not entirely true. Rasagiline is used as a building block drug in the treatment of Parkinson’s. It’s a MAO-B inhibitor and it fools the brain into thinking there’s more dopamine in the body by slowing the bodies natural destruction of dopamine. It was found to have positive results in the treatment of Parkinson’s and for a time was believed to slow or halt its progression. I am afraid this drug for me, and I believe many others, has little or no noticeable effect on the condition or the symptoms I presented with.

I carried on taking Rasagiline but at my next consultation suggested they didn’t appear to have any affect on me. My left leg and foot drag was getting worse and my left arm felt as if it had been stretched. The best way to describe this is to think back to how your arm feels after carrying a very heavy suitcase for a couple of hours around an airport. Unfortunately this feeling was there continuously day and night, in fact I still have it. It was suggested these symptoms would be best treated by Ropinirole. So this drug was added to the mix.

Ropinirole is a dopamine agonist and acts like dopamine to stimulate your nerve cells. Ropinirole is a fairly horrible drug. When you first start taking it you have a tendency to feel nauseous, it can affect your sleep and has many undesirable side effects including compulsive behaviour. I started on a low–dose, upping it after a week. Each time you up the dose you are likely to feel nauseous for a day or two. Again I waited for something to happen, preferably someimprovement. Over many months I was eventually upped to 12mg/day and at this point I noticed a slight improvement in walking. I could manage 5 minutes, sometimes more,at the start of a walk without dragging my foot.

It was at this time I noticed a new symptom. I could no longer tap out a beat with my left foot. I was completely hopeless now, to the point that if I could do three beats in time with music that was it. My days dreaming of owning a drum kit were over, my high hat inadequacy would be replaced by a drum machine. I am now on 14mg of Ropinirole a day and I don’t want to take any more. I still drag my foot. However, on the positive side it appears to have worked for my drumming skills. Once again I can tap out a beat. Dancing however becomes somewhat difficult, my left leg will work for a bit but eventually turns to concrete, which is extremely frustrating.

Other drugs that were added to the mix were 15mg Lansoprazole. This was to help with indigestion – a side effect from the Parkinson’s drugs – and Ibuprofen to help with aches and pains. I take anywhere between 400 – 1200mg/day

This was my drugs regime around 10 months after diagnosis.

1mg Rasagiline
14mg Ropinirole
15mg Lansoprazole
400mg – 1200mg Ibuprofen

It was around a year after diagnosis that Sinemet 12.5mg Carbidopa 50mg Levodopa was added three times a day. This – the super drug – would surely reap benefits.

Do I feel much better? Sorry folks, I would like to say yes but while I may be better than if I wasn’t taking them, the results are less noticeable to me. Everyone expects drugs to work and reverse, hault or fix the problem you present with but it would appear with some drug regimes ‘it ain’t necessarily so‘.

Next time – to mess or not mess with drugs? That is the question…