Train don’t stop Lelant, Mondays…

Well, it has been another couple of busy old weeks, here at the International Headquarters of Shaking not Stirred, so please forgive me for last week’s lapse. Top of the highlights was our Pearl (30 years) Wedding Anniversary, on Monday 16th September. It does not seem like thirty years, more like five, but I suppose that is the sign of a healthy marriage. Nic and I would like to say thank you to everyone for the cards, flowers and gifts. We were very touched by the kind words and congratulations we received. We have now had Parkinson’s as the third party in our marriage for more years than not, and I just don’t have the words to thank Nic, Adam, Simon and Louise enough for all the support and unconditional love that they have given me, especially in 2013 when things looked decidedly dodgy. And that goes for our friends and family, too!

So, to celebrate the matrimonial occasion, we (Nic and I) decided that a few nights away in a posh hotel was required. The necessary establishment was duly identified as The Lewinnick Lodge Hotel, Pentire, Newquay (other hotels in Cornwall are available). We were due to commence our stay on Monday, but we could not book in to the hotel until after lunch. That being the case, Nic decided to treat me to a day trip to St Ives, because I have never been there, and then we would go on to the hotel for the evening. On advice from Nic’s brother and sister-in-law, we decided to avoid trying to park in St Ives because apparently you can’t, and instead treat ourselves to the beautiful scenic train journey from St Erth, via Lelant Saltings, Lelant and Carbis Bay to St Ives. For those of you not from Southwest England, I promise that I am not making up the place names. It’s Cornwall. On further advice from my Brother-in-law, we decided not to go to St Erth to get the train, it is busy there because it is (unbelievably) on the mainline to London. Instead, we went to one of the ‘Halts’ on the line, which rejoices under the name “Lelant Saltings”. To get to Lelant Saltings you drive through a residential housing estate, down an unmade track to a park and ride car park. At the far end of the car park is the path that winds through the undergrowth up to the platform of Lelant Saltings. Standing on the platform I could see where the name “Saltings” came from, the view was of the top end of an estuary, with mud/salt flats all around, it obviously being low tide.

A picture is worth a thousand words. Note the wording on the sign.

So we arrived in plenty of time for the 12:18 train from Lelant Saltings to St Ives. Whilst I was standing on the platform admiring the mud I remembered that I had left my sunglasses in the car, and went back to get them. As I walked back towards the car a man walking his dog appeared, apparently from nowhere. From his mode of dress he was clearly a local, you don’t get trousers like that ‘up country’. “Are you waiting for a train?” he asked.

I think that it may have been this chap’s brother walking the dog.

I was very tempted to say “What do you think, Einstein?” but there was obviously a reason for his enquiry, so I paused before responding. And as I did so I was immediately reminded of the Cornish comedian “Jethro”, who was very popular (well, in this part of the world anyway) in the 1980’s and ’90’s. For those not familiar with Jethro, his style was to tell  long “shaggy dog” stories, with lots of Cornish references, that usually ended up with a great punch line. One of his best is about “[The] train don’t stop Camborne, Wednesdays”. If you want to learn more, search YouTube for ‘Jethro Camborne’.

Cautious that the dog walker may well be a ‘Jethro’ fan lying in wait for unsuspecting tourists, waiting to trot out the well used punchline re: trains and Camborne – “Err, yes, why?” was my moderated response.

“Because trains haven’t stopped here for months” he explained, as if to a dull child, and pointed at a broken, dislodged sign by the overgrown bushes and brambles alongside the path to the platform, stating “Station closed”. Whoever painted that sign was an eternal optimist, the ‘Station’ was a ramshackle boarded up hut in the undergrowth that I had assumed was a disused changing pavillion for the nearby football pitch. Kings Cross it was not.

Lelant Saltings “Station” in better times.

The dog walker was very helpful – “If you hurry you might catch the train where it starts, at St Erth” he volunteered. I thanked him and returned to the platform to try to explain the vagaries of Cornish train timetables to Nic . As I did so I heard him call reassuringly “You are not the first, and you won’t be the last”.

So we did hurry to get the train from St Erth station, and it was very busy there, and we did have to use the overflow car-park, and we did miss the 12:16 (Lelant Saltings being 2 minutes down the line). The next train was due in thirty minutes.

We sought help from the GWR (Great Western Railway – sometimes referred to as God’s Wonderful Railway)  staff at St Erth. We explained that we had bought on-line tickets from ‘The Train Line’ for the journey from Lelant Saltings to St Ives. The GWR employee we engaged with (who was clearly a Jethro fan) said “But the train don’t stop Lelant Saltings – why did you buy those tickets?” With tremendous patience we explained that we did not know that the train don’t stop Lelant Saltings when we were sold the tickets by The Train Line. He said “The Train Line? – what did you expect? – train don’t stop Lelant Saltings!”

Having now thoroughly established that the ‘train don’t stop Lelant Saltings’, we enquired if we could still use our tickets – that we had bought in good faith, from this station. He said he did not know, but to ask in the ticket office.

We went to the ticket office. It was closed.

Nic and I would like to extend our eternal thanks to a lady called Angela Prescott, who probably saved our sanity. She certainly saved the day. Angela is the Head of Safety for GWR. Obviously an important and intelligent lady. She was on the platform waiting for the mainline train (which does stop St Erth, Mondays) and overheard us discussing what to do next. She asked what our problem was, identified herself, gave us her business card, told us to go to St Ives anyway and stated “Any problems, get them to ring me”. We needed no second bidding.

We caught the next train, it didn’t stop at Lelant Saltings, we had no problem with the tickets and we had a lovely lunch in St Ives, in the sunshine.

On the return journey we saw two people stood on the platform at Lelant Saltings. I didn’t have enough time to open the window and explain…we just zoomed past, with their confused and angry faces disappearing down the line, like a modern day version of ‘The Railway Children’.

 

Just remember this – if you want to get to St Ives by train, go to St Erth to catch it, because train don’t stop Lelant Saltings, Monday – or any other day for that matter!

All together now…”Train don’t stop Lelant Saltings”…

Our three days in Cornwall? Wall to wall sunshine, fabulous hotel, great food, and two days spent on the beach in mid-September. It does not get any better than that. Well, not in Cornwall anyway.

See you next week  – when I might even mention Parkinson’s.

A complete nightmare

Well, it has been an ultra busy few weeks here at the International Headquarters of Shaking not Stirred, which is why I have not had the time to be scribbling away here. We have had a combination of ‘the garden man’ in to put in a second patio for us (thank you Matt from MLC Garden Services), Adam came home for a few days for his birthday, and Lou has packed her bags and gone off to Reading Uni to study for her Masters. So you can see that finding the time to gather material and write a blog has been a bit tricky. Still, it is better than being bored.

The big news of the week is that I have injured myself again. No, not a trip, or a fall. Not losing my balance. Not hurting my shoulder or damaging my wrist, but kicking a wall with my right big toe.

Let me explain…

It is a well established fact that nightmares are one of the non-motor symptoms of Parkinson’s. As the condition progresses so the nightmares become more vivid – and in my case, more violent. I tend to act out the nightmare so my arms and legs tend to go everywhere, flailing about just like in the dream. I am scared that I will end up hurting Nic by accident one night.

Enough to make anyone wake up screaming and kicking.

To combat this symptom I am prescribed medication in the form of a drug called Clonazepam. Those of you ‘in the know’ will recognise the fact that by the ending of the name of the drug in “-Azepam” it is a benzodiazepine. For those of you who are not qualified Pharmacists, this family of drugs is used for things like epilepsy and panic attacks, because it has the effect of ‘calming’ the brain down. So it makes sense to take something like this at bed-time to calm the active bit of the brain that causes the nightmares.

On Saturday we took Louise up to Reading, and it being a four hour drive (including a coffee stop), and with helping her to unload, we decided it would be nice to stay over in a local hotel (when I say ‘hotel’ I mean Premier Inn) (other cheap hotels are available) and go out for a nice meal in the evening, rather than spend almost nine hours of the day in the car doing the return trip as well. The only problem was, due to a mis-understanding (well, my mis-understanding anyway) I did not have my Clonazepam tablets with me on Saturday night. The net result of that cock-up was me having a nightmare where I was being attacked by a very large man wealding a very large sword. In my nightmare I kicked out at him, with the resultant effect that I kicked out, very hard, with my right leg. Being as how we were in a Premier Inn at the time, my leg was very close to the wall. So I ended up kicking the wall of the hotel as hard as I could.

Someone stupid enough to actually demonstrate what I did.

Let’s just say that it hurt. A lot. And because I was asleep at the time it caused me to be surprised. A lot. So there is no reason to re-visit the bad language used. Which was a lot.

At the time, and for the rest of Sunday I was convinced that I had broken my right big toe. I could not bend it, and to pitch on my right foot was really very painful. I made a very pitiful sight, hobbling around and pulling faces with the pain. We elected not to go to hospital with the injury because A) experience tells me that they will not actually do anything for a broken toe, and B) Derriford Hospital A and E department is a by-word for missed waiting times, and I have better things to do with five hours of my time on a Sunday evening than wait for an X-ray. Plus the fact that all the people in A and E with headaches, sore throats and three week old rashes, who should have gone to their GP because they are clearly neither an accident or an emergency but are just clogging up the system, really wind me up.

A new delivery of throat lozenges has arrived at A and E.

I am pleased to report that yesterday my toe was less painful, so I guess that it was not broken after all, and today it is just about bearable for walking. Mind you, I have had two co-codamol with all my ‘P’ medication this morning, so it could be just that I am as high as a kite. You probably guessed that if you have read this far anyway.

On the Parkinson’s front, the news is mainly good. My recent pain in the toe has caused my dystonia to become worse, and the muscles in the back of my left shoulder are giving me hell, but this pain is offset by the information that after having our en-suite ripped out and re-fitted to be Parkinson’s friendly, the council have agreed that this qualifies us for a reduction of one band in Council Tax. It’s not a massive amount, but now that I cannot work, any reduction is more than welcome. If you have had to make adjustments to your home, then it is worth asking your local council if you also qualify. It costs nothing to ask and you lose nothing if they say no. In the distant future we will have to have our main bathroom ripped out and made wheelchair friendly (you have to face some unpleasant facts sometimes) and for this apparently we can apply for a Disabled Facilities Grant. I don’t know much about this grant, but again, if you are going to need renovations in the future, it is worth looking into. These grants are not given retrospectively – so make sure you ask before you start knocking walls down.

 

Check that you are eligible for a grant before you start renovating.

I have been busy with Parkinson’s UK (PUK) recently, too. After some personnel changes we are looking for two or three new researchers to join the Involvement Steering Group, and because I am sad and have nothing better to do, I have been assisting in recruiting new members. It seems a bit much – me interviewing people with PhD’s, but PUK want a ‘lay’ perspective in the process – they certainly get that with me! We (the Steering Group) have also nearly concluded the review of the effectiveness of Plain English Reviews on grant applications. I have mentioned the Plain English Reviews on numerous occasions, but it seems to me that the review proves that Abraham Lincoln was quite right when he said that there are “Lies, damn lies and statistics”. I am sure that it will all make sense to me in the end. If only I had worked harder in school.

Finally this week, as promised some information on DBS (Deep Brain Stimulation) – an operation whereby a device not dissimilar to a heart pacemaker is fitted into the brain of people with ‘P’ to help control their tremor. Not all people with ‘P’ have a tremor, but most people who do, and have had a DBS fitted, say it is a godsend. I certainly do. It appears that there is growing anecdotal evidence, especially on social media, that DBS is being linked to Obsessive and Compulsive Behaviour (OCB) – sometimes known as OCD (Obsessive and Compulsive Disorder). This is quite worrying, because the three most common obsessive behaviours linked to ‘P’ are gambling, shopping and hyper-sexuality. Obviously the first two can prove to be ruinously expensive, and all three put a massive strain on relationships. I know of someone who took on three jobs to pay off their partners gambling debts, and I know of someone else who realised that they had a shopping obsession when they bought themselves an opera cape!

I had a DBS fitted seven years ago, and apart from this blog I don’t think I show any other OCB’s.

Mind you – perhaps you should ask my family what they think!