The Parkinson's Nurse

Friday 8 September 2017

Rosa says I am addicted to Candy Crush.

She is right. After all, I am nearly on level 1,000 - not really something to be proud about. She keeps threatening to remove the App from Dad's iPhone so I make sure she doesn't know my password.

As well as playing an important role in motor function, dopamine plays a role in the pleasure and reward systems of the brain. Parkinson's is caused by a lack of dopamine in the nigrostriatal pathway, controlling movement. But the are other dopamine pathways, notably the mesolimbic pathway which, although not fully understood, is known to regulate motivation and desire.

So when you take a daily dose of something that simulates dopamine to plug one gap, as I do, it can have the side-effect of over-stimulating other areas. Dopamine agonists are dangerous drugs that can lead to strong addictions relating to gambling, sex or shopping. There are certainly horror stories of wrecked marriages and worse on some of the Parkinson's forums.

When I met the Parkinson's nurse assigned to me for the first time this week, one of the things we talked about was the side effects of my medication.

You may recall that I had received a mystery appointment with a Professor J some time a go.  Well it turned out that the appointment was in fact with one of Professor J's clinical team, a very helpful Parkinson's nurse called Debbie.

Like the Admiral nurses that support people with Alzheimer's, the idea of a Parkinson's nurse is to provide more practical advice, to complement the medical expertise of the consultant.

Debbie was warm and welcoming and made me feel instantly at ease.  We covered some background about my early symptoms, diagnosis and medication. She was interested in my emotional experience; I told her I write a blog, partly as a record of my feelings, which she thought was a very good idea...

She gave me a few tips on how to sleep better, most of which I am already doing, but there were some good additional suggestions like keeping a sleep diary. 

We talked about work, about the pressures on Clara (who continues to deal with her mother in the advanced stages of Alzheimer's) and a little about my own mother. 

On the Candy Crush addiction, she didn't seem overly concerned. After all, there are much worse things. However, as I will inevitably need to further increase my medication over the next few years, it's something to keep a close eye on.

The session was relaxed and open, and didn't feel rushed. Overall she thought I had responded very well to the medication and that I should have a good quality of life for a few years to come.

Before leaving I thanked her and told that I thought the service provided by the NHS had been fantastic, despite the long time it took to get appointments. 

Indeed, when I went to the front desk to book my next visit, I was told the first available slot was not until the end of July 2018.

That should be just about enough time to get to level 2,000 on Candy Crush...

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