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Participating in the Prosavin Gene Trial

Posted in Personal Perspective on 22nd Aug 2014

ja-personal-sheila-royI have lived with Parkinson’s for almost one third of my life. This life-affecting condition has challenged my ability to function in every possible way. I lost confidence, dignity and hope. For 18 years I experienced mobility problems, falls, constant pain, sleep deprivation, screaming nightmares, dyskinesia, ‘freezing’, and in my case, spontaneous closure of my vocal cords and being unable to breath.

I was spiraling downwards with little hope. The transition from extreme involuntary movements to completely frozen took four seconds, which meant that I was unable to get into a safe position. Often the freezing would last for up to two and half hours, and took some time to return to moving around again.

At this time I spent about 75% of each day OFF which meant that I spent long periods sitting and waiting until I came back ON again. Only 20% of my day was ON but this was blighted by involuntary movement, which made it hard to do anything, and led to a withdrawal from society to prevent me from hitting people, and because I was exhausted by the constant movement.

All of these symptoms changed me into a person that I no longer recognised. In 2010, when I was thinking that things could not get worse, they got worse. The house caught fire in the middle of the night, my husband was very ill and my horse and cat died. My PD got worse.

My medication regime at that time was Ropinerole XL 8mg, one tablet per day. Stalevo – 100mg levodopa, 25mg carbidopa, 200mg entacapone every 2 hours, Sinemet 62.5 as required, Amantidine 100mg, twice daily, Modafinil 200mg in the morning, Clonazepam 1/2mg at night and Rasagiline once daily. This medication was becoming less effective.

In February 2011 Dr Roger Barker referred me to Dr Philip Buttery, both at Addenbrooke’s Hospital, to consider my suitability for deep brain stimulation. During this consultation the Prosavin study was raised. This was the first time that I heard about ProSavin. Dr Buttery said that they were looking for three people to take part in assessing the safety, efficacy and dose evaluation of Prosavin in people with mid-stage Parkinson’s, who were experiencing reduced benefit on levodopa medication. The study evaluated three dose levels in a total of 15 patients with PD. Six people received the higher 5x dose, and I was one of these.

As soon as I heard about the study on ProSavin I knew it was for me. I felt very confident that, if possible, I should go for it. A lot of people tried to persuade me otherwise, but I felt that it was right for me. I cannot say that this has been an easy process. I have to watch my body for involuntary movement, and reduce my intake of Dopamine. This has been hard to do, and gets harder the more I reduce. It is not a gradual incline but like a step up in response to dyskinetic movements. It has taken me two years to reduce from ten Stalevo tabets a day, to five. I am not cured. I still have involuntary movement, and OFF/ON times but they are not as severe as they were, and I know when they are coming, and can function when OFF.

My mobility is much improved, but for me the most important thing is my ability to think, analyse and articulate. I could not hold a good conversation a year ago, and now I can. I had a lot of falls and now I rarely fall. I can write, which I love and I laugh a lot.

I now have a little factory in my brain that produces dopamine. I have a much better sleep pattern than I used to. I used to only get about 3 hours sleep in 24 hours – now I’m getting around 7 hours which has made a tremendous difference and it means that my body has more chance to heal, and you feel better if you get some sleep. I still get terrible nightmares and nothing seems to make that any better. I scream the house down and I warn visitors that not only do I wander around all night but I scream. We’re not the best people to stay with!

I have an increase in ON time – the time when I’m fully functional. I’ve gone from four hours to eleven hours a day – so most of my day is active and it makes such a difference. You just have more time to enjoy yourself and to do things and you’re not falling asleep all the time or doing things that stop you enjoying yourself.

I’ve got a much improved mood. I think I spent a lot of 2010-2011 crying. It’s an unbelievable feeling – you’re just so miserable all the time. But my mood has really picked up and I’m much more sociable. I’m much more confident than I was. I came to the point where I couldn’t go out into a crowd. I couldn’t function at all talking to people – I was completely unable to communicate and I just stayed at home. I just was going downhill fast, as everything wasn’t functioning anymore. So it’s a big change.

With Parkinson’s you tend to be going downwards not up. Since starting this study I’ve felt I have improved and I’m really encouraged by that. It means that that it is possible to turn this condition around. Let us hope so.

One question that you should be asking me is ‘would I do it again?’ – and I would, I’d do it again tomorrow. Because for me it’s made a big, big difference to my life.

ACNR 2014: V14;I3
Published online 22/8/14 

To cite:
Roy, S. ACNR 2014;14(3):15