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!
Shaken Not Stirred 