Monday, 28 November 2011

The European Parkinson's Disease Standards of Care Consensus Statement

After months of careful planning and a great deal of hard work, the European Parkinson's Disease Standards of Care Consensus Statement was launched last Tuesday 22nd November 2011 at the European Parliament in Brussels. The day itself was delivered with military-like precision, under the watchful stewardship of the General Secretary of the EPDA Lizzie Graham. I believe that it is fair to state that without such careful planning the day would not have been so successful.

Even though the EPDA itself has been in existence for quite a few years now, I believe it was their very first foray in to the European political arena, so on the morning of the event itself everyone was on tenter-hooks with the ever present worry that not enough MEP's and Commissioners would attend to make the event a success. However, as the time drew near all the places at the tables were soon taken up and the presentations started, with John Bowis, a former MEP and EPDA patron, moderating. The event itself was hosted by MEP's Linda McAvan and Frieda Brepoels, together with two high-profile European Commission officials in public health and health innovation policy, Maria Iglesia-Gomez and Paul Timmers. 

For me personally, the message really hit home with the patient testimony of Branko Smid from Slovenia, when he made an appearance at the start without the aid of the continuous feed of levodopa in to his stomach - basically his lifeline which enables him to walk, talk and engage with the outside world. By doing so, he had demonstrated in the most shocking way possible the effects of Parkinson's in its rawest form without the control of drugs. In a very short space of time, Branko had become withdrawn, depressed and unable to control his body, in spite of the reassurances of his wife Tatijana. As Branko had lost the ability to talk, a prepared speech was read out on his behalf by Chui Mann from the EPDA. To do what Branko did requires a great deal of courage and trust, it is not something which I could ever contemplate, and he has earned my deepest respect.

Also taking part in the discussions were Professor Bastiaan Bloem from the Radboud University Nijmegan Medical Centre in the Netherlands, who discussed the treatment of Parkinson's Disease, which was followed by a short patient testimony from myself on the consequences of the treatment of Parkinson's on my career in Banking, and the impact the illness has had on family life.

The Consensus Statement draws attention to the economic and social costs of the impact of Parkinson's where the population is not only growing, but also living longer. Its aim is to set in motion what the European Policymakers need to do to deliver a standardisation of care across Europe for People living with Parkinson's and has been launched to coincide with the 2012 European Year for Active Ageing. It is for anyone who is involved in the world of Parkinson's, be they healthcare professionals, research organisations, drug companies, PwP's, family members and friends, as well as patient organisation's. Together with further information regarding the launch, the Consensus Statement can be downloaded at:

You can also find reference to it on Twitter from Paul Timmers (Director, ICT addressing Societal Challenges) at:

EIP twitter account @EIP_AHA

Sunday, 20 November 2011

The mystery of the missing clothes

Going off to Belgium for a few days, I asked my husband if he could retrieve younger daughters suitcase from the loft as its just the size I needed, and more importantly has fully functioning wheels unlike mine, which is huge and took a bit of a battering when in Stockholm last February. Since then the wheels have refused to work and has a big gouge down one side - but it is over 25 years old so can't expect miracles!

On opening up said suitcase, we discovered that it was already full - of Antonia's clothes, plus a load of sand. It seems the suitcase was never unpacked when we returned from our camping trip to Dorset back in August. Antonia was delighted and picked up her favourite dress which we had bought her in Stockholm saying "I was wondering where that had gone!" Just hoping she hasn't grown out of it........

We're now wondering whether Elise's suitcase also has some similar surprises in store for us. I think that's best left for another day when I'm feeling stronger ..........

Mystery solved!


Thursday, 17 November 2011


Aracnophobia - in literal terms a signficant dread of spiders, regardless of size, hairy legs or no hairy legs, harmless or poisonous.

I have never ever been afraid of spiders, until now that is. My teenage years were spent living in a quintessentially English thatched cottage about 2 miles from where Tim and I and our girls live now. Well, it would have been quintessentially English with roses growing round the front door and the garden lovingly nurtured had my father consented to a considerable sum of money to stop the inevitable slide to wrack and ruin - which quite literally is what happened one day when a significant chunk of thatch protecting us from the elements slid right off the roof and into a nice big patch of weeds and nettles down below. When I say "us", it was the portion of thatch which protected my sister and me from the wind and rain, or rather my sister as it was right above her bed, giving her a nice view of the stars and moon. At that point, my father conceeded to release some funds and the entire back half of the cottage was re-thatched before the rest followed suit. And that was it as far as lashing out any money on our homestead was concerned.

Anybody who has lived even a small part of their lives in a thatched cottage will know that you can get absolute whoppers crawling out at any moment of the day or night - spiders that is. If you suffer from arachnophobia and are seriously considering buying a thatch, forget it, unless you are prepared to get some treatment to cure you of your aversion to our 6-legged friends. Our cottage was long and narrow, with the result that my sister and I used to have to pick our way very carefully through my brothers bedroom to get to ours - a journey which was not to be undertaken lightly I can tell you. To be honest I think the jungles of Borneo would not have phased me as much. The twice daily sojurn into the wilderness that was Ant's room required taking into our lungs as much fresh air as we could muster, and holding on to it as we negotiated an ever changing and perilous pathway to our bedroom door on the other side of the room. The return journey the next morning would at times be equally as hazardous, as more often than not Sue and I would find the pathway blocked by all manner of things which any teenage boy in their prime of life would leave lying around. (Don't ask - too much information!) This was definitely not a journey for the faint hearted. My brother's bedroom? Or spiders? Gimme spiders any day!

It was during these years that Ant must have been going through rather a sadistic phase, as his room would be littered with upsidown glasses housing our 6-legged friends from the thatch and the occasional Daddy-long-legs, in varying degrees of slow death, or decomposition, whilst my brother observed and worked out how long they survived in captivity and once dead how long to decompose. It was around that time that some well-meaning person had given him a box full of glasses which he used to trap the unlucky spiders who didn't manage to escape in time. I'm glad to say Ant doesn't do such things these days! Or does he?

Hence why I am not afraid of spiders, unlike Tim and the girls. Even so, I have been known on odd occasions to balk at the really big ones with the fat hairy legs which seem to find themselves trapped in either the bath or the kitchen sink. But....... thanks to the Parkies, the past few weeks or so have been particularly bad sleep-wise, with the re-emergence of recurring nightmares every night, as soon as I shut my eyes. The last time I was unlucky enough to have recurring nighrmares was a couple of years ago, when for a short while, I agreed with my consultant to try beta-blockers to resolve the shakes, which it did do. I didn't stay on them for long as that was when the recurring nightmares started, night after night. When I made my consultant aware of this he immediately took me off the beta-blocker - apparantely this can be a side-effect. Much to my relief, the nightmares stopped pretty much straight away.

This was the state of affairs sleep-wise until about 3 or 4 weeks ago. The nightmares are now back, worse than ever before, and the content this time features my friends the spiders. They seem to tumble out of the cracks in the walls which exist only in my REM-phase, heading straight for me. The next few hours are then spent cowering under the duvet, whilst convincing myself it was all a figment of my over-active imagination, and not real at all. A couple of nights ago even saw me running screaming down the landing and in to Antonia's room, having first turned on the overhead light in our bedroom, followed by pulling the duvet off the bed without first warning my long-suffering husband. Last night, before I turned in, I decided to get the vacuum out and suck up any of our 6-legged friends malingering anywhere upstairs. This sort of obsessive behaviour is definitely not me. Having finished the spiders off once and for all, I was soon fast asleep secure in the knowledge that I had taken action and banished the fiends once and for all. Or so I thought! Having reached the REM stage, the dream came back, stronger than ever, and as usual slightly worse than the night before. Hence this blog - I'm fed up and don't want to play Parkies any more.

Having had the pleasure of meeting Branco Smid from Slovenia about 6 weeks ago, I had a bit of a father-daughter chat with him about my REM sleep disorder. Branco, now in his late 50's, was diagnosed in his mid-20's and is well known on the PD-European circuit as he has dedicated his life to raising awareness of this so far incurable illness. Branco's advice was well grounded and to the point, as he made it absolutely clear that I had to sort out my sleep hygiene as a matter of priority, before it finishes me off for good. Having discussed this with James, my support nurse, a letter from my consultant arrived this morning agreeing to James' suggestion that I try a dopamine agonist patch overnight to see if that will improve matters. I am worried about this solution to the night-time terrors and that this may bring back my love of money, or rather spending what I don't have. But desperate times call for desperate measures, and I'll try anything, even if it means that I surrender control of my purse and its contents to Tim. James seemed to think the risks of side-effects are minimal, as the effects of the DA patch stop the instant I remove it when I wake up.

Nightmare! Anyone for a game of roulette?