Chicken or Beef?

Ok, so it has been a while, I know, but life has gone on here at the International Headquarters of Shaking not Stirred nonetheless.

Apart from the trauma of the bathroom in the last blog, I also updated you with the latest about my hoped-for brain surgery. I use the term ‘hoped-for’ for a reason – I am still hoping to have it!

Let me say here and now, the delay is no one person’s fault, but rather a perfect storm of events.

I had my MRI scan as scheduled (see previous blog) and all went well. I went home and pretty much self isolated for a while to avoid Covid and any other nasties that may have delayed things. I was told that subject to the MRI result I should look at mid-May for the operation date. A few weeks after the scan I had an on-line call from my Consultant and the Neurosurgeon. They are two very nice, very intelligent and experienced ladies, and they take their time to explain things medical to me in terms that I can understand, i.e. in words of one syllable.

The results of the MRI were not quite as hoped for. Apparently, as I understand it, if you have a DBS then they can only perform a partial MRI on your brain because, if they turn the machine up to 10 like they would on a normal person, the ‘Magnetic’ bit in Magnetic Resonance Imaging would drag the metal parts of my brain implants out of my head and deposit them all over the scanner, which is not my first choice of therapy. I have to have a much reduced type of scan and in my case – wouldn’t you know it – the image of the implants is not too clear.

This has not helped the initial question that the MRI was designed to help, which is – after 11 years of sitting in my brain, will the implants come out cleanly? Or is the brain tissue so overgrown on the implants that to remove them would cause the tissue to tear and thus cause a bleed in my brain, which is commonly known as a stroke? I am not too sure how many people, worldwide, have had this replacement procedure done after so long. We discussed the pro’s and con’s of the operation. In an ideal world, the old DBS implants come out, and a new set of implants go into the same location. I originally thought that I was having a third lead into the GPI (see previous blog) but apparently, after a review of my symptoms, the team feel a new system will be more effective. This is because it is more than probable that my dystonia is caused by my current DBS, in which case the third lead would not improve things as well as it would if my dystonia were caused by my Parkinson’s itself, not the therapy.

With the new, all singing, all dancing DBS the team can (and I am seriously impressed by this next bit) direct the flow of the electricity into a beam which can be focused on any relevant part of the brain. At the moment (apparently) the signal just courses through the target area, which is causing the dystonia. With the new DBS, the signal can be directed to stop the tremor without causing the dystonia. That would be life changing for me. However, the surgery is not without its own built in risks, not least the aforementioned risk of a bleed. There is also the risk that it just won’t improve things, or it could even make things worse!

So, where are we now? Well, since the last call with the neuro team I have been asked to try two different medications for my dystonia. One I can’t take due to another underlying condition not connected to my Parkinson’s. The other medication I did take, but in a list of 10 possible side effects I managed to tick all 10 – tummy trouble, excess sweating, dizzy spells, confusion, insomnia – the list goes on but you get the picture. I tried it for two weeks at the minimum dose but I felt so poorly I stopped it, which was a shame because the dystonia actually improved very slightly, but feeling so poorly made it impossible to continue and I didn’t really notice the improvement until I stopped taking it, when the dystonia came back with a vengeance.

I have recently had a second call from the Consultant to check up on how the medication was working. As it is not doing me any favours we have agreed to stop it. This leaves me with two options:

1. Don’t have the surgery and live with the ever worsening dystonia and accompanying pain and social embarrassment,
2. Have the surgery and risk it either not improving the dystonia, making it worse, or suffering something catastrophic if it goes wrong.

When I asked if there are any other viable therapies for Parkinson’s related dystonia I got the one-word answer, “No”. You can’t argue with honesty!

As luck would have it for me, the surgeon is now not available until sometime next month, when we will have another on-line meeting and a final decision will be made. I am feeling that they may decide that it is too risky to try the procedure after so much time, and my quandary now is do I press them to do it and take the chance on it all going wrong, or do I say ‘no thank you’ and pass up the opportunity of life changing surgery?

Anyone who knows me knows that I am a decision maker. Right or wrong, I usually don’t hesitate and make my mind up. This is all very well when the choice is ‘chicken or beef’, but ‘possible freedom or possible wheelchair’? takes a bit more thought.

I will let you know when I do.

And, no – there are no amusing captions this time – this is serious stuff!

I do have a post script to this blog –

I was contacted by a charity in the USA and asked if I could direct you to a particular Parkinson’s related item about Paraquat and Parkinson’s, which I thought was very interesting. I provide the link below, without prejudice:

https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.drugwatch.com%2Fparaquat%2F&data=05%7C01%7C%7Cbb7bab59cc114985ab6208db7e14f0de%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638242400630267094%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=GBDvUI1Y4yBUx1bEKD8e%2FUf%2BUHNi3VEhAfqmXrrhIv4%3D&reserved=0

P.T.S.D. and all that…

Well, it is still pretty full-on, here at the International Headquarters of Shaking not Stirred. The big news is that I am definitely booked in for an MRI scan under a general anaesthetic on Tuesday (21st) at Southmead Hospital. This is good news because once the scan is completed the surgery team can then plan the route for the new implant, which then gives me about a 6 – 8 week wait for the surgery. The surgery can go one of two ways: If the scan shows that the right-sided lead that controls the left side of my brain is not optimally located then it could be the cause of my dystonia (unwanted writhing movement in my left shoulder, arm and leg) and it can be re-located. If it looks to be OK, then the third lead into the GPI is the option (See previous blog). I have had a video conference and a phone call with the surgeon, and I have every confidence that I will see some improvement. We will all have to wait and see.

This is the Globus Pallidus Internus in case you were wondering

In the mean time I have to prepare for the general anaesthetic. I don’t ‘do’ that very well, I have had a few problems with sickness and confusion (nothing new there then) afterwards, so I am always a bit stressed when ‘going down to theatre’. Added to this, I have to stop my CBD oil (for pain) for a week prior to the op, which is a bit tough, and for five days I have to wash my entire body with some rather clinical smelling body wash, to prevent infection. It is supposed to be an all-over body wash, but how do I do the middle of my back? I think that Nic might be needed there – I certainly hope so!

Anyway – I am preparing for part one of this three part procedure – planning scan, operation and then ‘turn on’ five weeks post operation, and to be honest I can’t wait to see if it helps. The surgeon warned that it can take anything up to two years to fine tune the third lead, and I am only too aware of how often I have had to have the original DBS fine tuned, so I am prepared for the long haul post-op. However, I am optimistic at this time.

I have told Parkinson’s UK that, very disappointingly, I won’t be undertaking the Lay Grant Reviews that I usually do in the spring, because although I love doing them – and learn lots about Parkinson’s and therapies in doing so, they are a big commitment. There are two types of grant applications that I review, one is for ‘normal’ research, i.e. pharmaceutical based or gene therapy type trials, and then there are the specific non-drug interventions, which do exactly what is says on the tin – research into helping people with Parkinson’s that does not involve drugs. Dance therapy and singing therapy spring to mind, but there is a lot more very innovate stuff out there, and I love reading about them.

Each application deserves the utmost attention, and some can be quite complex, so you cannot rush the review. I am concerned that if I am called in for my surgery during the review period I will not be 100% committed to it, or I run out of time to complete the process, or worse still, I rush the review. Best leave it to others with a more stable life this year. I don’t want to let anybody down and I am always humbled that so many very clever people dedicate their work to helping people like me. As I said, I am disappointed but one has to be pragmatic sometimes, I can’t end up wasting their time.

Professor Johnston, on being told that Mark is reviewing his life’s work.

Oh yes! – there is just one more thing to tell you about-

“The sample”.

So – last week I wrote about the arrival of my Bowel Cancer Screening Kit, and my concerns regarding collecting ‘The Sample’. Turns out, I was right! Those of you with a weak disposition – look away now…

Having discussed the topic at length with Nic, a plan of action was formed. A receptacle, in the form of a disused plastic Chinese take-away container (as suggested by I.C.) was lined with some toilet paper and placed at my convenience (see what I did there?). I must admit that after a couple of days of prevarication and procrastination, Monday was the day of action.

Now, as it turns out (another pun), all through my 60 years I have thought that I know exactly where my bum is. However, during this rather precarious and demanding exercise, I was proved wrong. Quite wrong in fact. Sitting on the loo, I held the container in what I thought was the optimal location and proceeded to ‘collect’ the sample. However, I missed the middle of the container and ended up with a sample that was precariously balanced on the front right corner of the container, with about 20% making a bid for freedom down the front edge. At this stage I can only describe the contents of the container as malevolent. So I am sat on the loo, container in my right hand, trousers around my ankles, with a sample that is determined to follow Newton’s laws of gravity and head for the bathroom floor. I should add that this is the bathroom that we upgraded and had future-proofed for me, at some expense last October, and of which we are very proud. I had no option, I was going to have to use my left hand to guide the errant part of the sample, which was slowly moving like a giant slug down the side of the container, back into captivity. Those of you who know me well will know that I have quite restricted movement in my left hand at the best of times, and under stress it becomes fairly rigid and useless. Thus it was that fateful evening. As carefully as a stressed man who has Parkinson’s and dystonia can, I prodded the offending article back into the pot with my rigid, stick-like fingers. Success – nothing spilt. Now I am still sitting on the loo with a sample in the container in my right hand, and a sample of the sample on my left hand first and second fingers. I have Parkinson’s – getting off the loo can be a challenge – especially, as previously stated, when I am stressed, so we have a rather nice, new, chrome grab handle by the loo for such times. However, one hand is very occupied, the other is not particularly hygienic. I certainly did not want to get the sample on our nice shiny grab handle. My trousers are around my ankles and the sink is a good ten feet away (we have a long, thin bathroom). With a monumental effort I got myself upright (look mum, no hands!) and bunny hopped across to the sink? Have you ever bunny-hopped across the bathroom with a Chinese food container full of poo in one hand and a lump of human faeces on the other? I have.

What will you think of next time you see one of these?

If only it had ended there…

After placing the container on the floor I managed to turn on the tap with my clean hand, and wash both hands, copiously and repeatedly with as hot a water as I could stand for a lot longer than I ever did during Covid. Cleansed and calming down from the panic that had beset me just minutes earlier, I went to pull up my trousers. That is when I first became aware that I was not yet out of the woods. In lifting the container out of the bowl, I had, unnoticed, scraped it – and the errant portion of the sample – up my right buttock. As I mentioned last week, because of my Parkinson’s I often need to use laxatives, and had done so the previous day, with the very unfortunate result that my ‘sample’ was soft and very sticky. Very very sticky. It turned out that it was more sticky than just toilet paper could deal with.

After my second (very long) shower of the day (with the bathroom window as wide open as it goes), actually obtaining the little bit of poo required for the testing was easy and uneventful, and Nic posted it for me the following day. I have already seen that the test was, thankfully, negative. I was really worried that it would come back as ‘inconclusive’ and requesting a further sample. At least it was worth it in the end. All I need now is six weeks of intensive counselling for my PTSD – Poo Tray Stress Disorder.

Next time – no poo will be mentioned…

The sample kit

Well, life continues along at its usual frantic pace, here at the International Headquarters of Shaking not Stirred, with hardly time to draw breath, such is the hurly-burly of life at the moment.

OK, so it is not the life of the Jet Set, I’m not globe trotting or meeting the great and the good, but genuinely, since the last blog, we (Nic and I) have been really busy.

In the last thrilling instalment, I said that I had the date for the pre-op for my impending DBS upgrade . That was a day taken up, what with the travel to Bristol and back, but it was time well spent. We met a really nice nurse in the form of David Lindsay, who spent a good 45 minutes or so going through health checks, blood samples and talking about the procedure involved. Apparently I need to have a mapping MRI scan done on my brain to plan the surgery. This will entail a general anaesthetic and a special MRI scan because if you have an ordinary MRI with a DBS in place, the enormous magnet in the scanner will drag the implants straight out of your head and chest. Once I have had the planning scan I will have to wait for a second date for the operation itself. I’m glad to say the the scan is a day patient appointment and if all goes well with the upgrade, then that is only one or two nights in hospital. Thanks for your time and help, Dave.

I just love this image. I stand in awe of the Brain Surgery team at Southmead Hospital, how do you learn to do this?

I also received a phone call from the neurology consultant, Dr Boca, with a rather interesting thought: what if the dystonia I suffer from is not a side effect of the DBS, but is caused by current ‘leaking’ from the contacts in my brain and causing a disturbance in a different part of my brain? Hmmm, that has made me think a bit! I need to talk to the Movement Disorder nurse and see if we can work that out before too long. If that is the case then life might be a bit more simple, with the current leads being re-positioned, rather than a third lead going into a different part of the brain (Google ‘Global Pallidus Internal’ if you want to know more).

As well as teaching Brain Surgeons their job, I have been busy with the poor, long-suffering medical students at Plymouth University. It was so nice to be back to face-to-face presenting again after almost three years of ‘Zoom’. You can’t beat the roar of the crowd to get you going. This particular group are looking at the effect of grief in a patients life. I work with three ladies as co-presenters, all of whom have lost something in life that has really impacted on them. We are not talking about loss through death, in my case I talk about the loss of my health, my career, my potential to earn money, the loss of my middle years, my identity, my personality and my self worth, and more besides- all because I have developed this condition. Bereavement and loss of a loved one can, in time, diminish. Sometimes we find an inner strength to deal with such loss. When you have an incurable condition like Parkinson’s you don’t have the luxury of time healing the wounds because there is no healing to be done. That being the case you then have to develop your own coping strategies. Mine include volunteering, my work as an Expert Patient, and, sometimes, writing this blog. That, and as one of my co-presenters likes to say – “Sheer bloody-mindedness that it won’t beat me”. The other presenters have similar events in their life and the lesson plan is to make the students realise that when the patient steps into their doctor’s office, it is not just the obvious symptoms that effect their health. There may well be a back story that is impacting their well being as badly as the primary illness.

This all sounds a bit heavy, but all four of us presenters share a sense of humour and can bring a bit of laughter to a fairly serious topic. The only down side for me is that the sessions are two hours long and last week at the end of the session you could have poured me into an armchair. I have arranged a slightly different timetable for tomorrow…

Mark likes to keep upbeat even on the heavy subjects.

On the domestic level things have got quite interesting as well:

I know that in the last blog I said that I would not mention my birthday again, but this is relevant.

Having attained – more by luck than judgement – the almost respectable age of 60, certain things happen in a chap’s life that have not occurred before. One of the new and novel things arrived in the post in the shape of my Bowel Cancer Screening Kit. For those who don’t know, it is to test a sample of what the instructions in the kit refer to as “your poo” for signs of bowel cancer. The kit is in fact a plastic tube with a stick built into the lid, and an envelope. The idea is that you use the stick to obtain a small sample of your poo, put the stick in the plastic tube and post the whole thing off to someone who did not understand the job description when they went for interview, to inspect for any sinister signs. Poor devils.

They won’t be looking that positive when my sample arrives…

So, I am gearing up to take a sample. But! as I may have mentioned before, I have Parkinson’s, and as I may have mentioned before, one of the classic symptoms of ‘P’ is constipation. To combat this, we use amounts of laxative. The laxative frees things up and keeps it all flowing. Sometimes it can be a little too effective. You can see where I am going with this…

I have a little tray in the bathroom on which to deposit the subject matter, but what worries me is not being able to predict the flow rate. I am either going to be taking a sample from a rabbit pellet or a pebble-dashed wall, neither of which gives me much confidence. I did consider looking on YouTube to see if there were any videos, but abandoned that thought as soon as it formed – for very obvious reasons.

Well, there you have it – an update on my brain, bereavement and my bowels. Don’t say that I don’t give you a bit of variety.

Time to visit the smallest room – wish me good luck.

The ten day weekend

I know, I know, it has been nearly five weeks since the last one, but I have been a busy boy, and updates have had to go on the back burner, here at the International headquarters of Shaking not Stirred.

It seems that the health care teaching profession is in full throttle mode this term, with the SSU’s (I have spoken often about this – use the ‘search’ function if you want to know more) now steaming ahead, and my services – such as they are – being required by both the University Medical School with this year’s Year 2 students, plus the Year 1 Radiography students also getting the benefits of life according to Mark Hoar. I have already spoken to the Radiography students – ‘Living with Parkinson’s as a long term condition’ and over the next three weeks I am taking part in four separate presentations to the Year 2 medical students with my Expert Patient colleagues – who are quickly becoming my Expert Patient friends – Heather, Sue and Davina, under the watchful eye of Sam R de B. – as she is known in the trade. We will be talking about grief and bereavement. I feel a loss for the life that I might have had without Parkinson’s and a sense of bereavement for the person that I might have been. The others share their experiences as well. It can be hard to do, but without this input how else will our future doctors learn to be empathetic to their patients – especially the high maintenance ones?

Mark was keen to get feedback from the students

Earlier this month I took part in four Zoom sessions (Why do I find Zoom harder than face-to-face?) with the Year 3 Special Studies Unit’s in Plymouth and in Taunton. I am delighted to say that once again I have been massively helped out again by volunteers Bob, Colin, Miriam and ‘newbie’ Jo. Their contribution to the students in understanding Parkinson’s is invaluable and has been proven now for the last three years in the quality of the outcomes of the SSU. I am very grateful to all four of them. I know that there will be more dates in the diary very soon, in both the University and at other locations.

Things are definitely looking up on the personal medical front as well…

I have received a date for my pre-op assessment for my third Deep Brain Stimulator lead, to help with my dystonia, and things must be moving quickly somewhere in the NHS because the appointment is for this Thursday at 12:30. Once again we (Nic and I) have to trek to Bristol just for the pre-op, but I guess it is a small price to pay for the hopefully successful procedure. In the same week I received an appointment to see my orthopaedic surgeon to finalise getting the plate taken out of my left wrist. To be honest, the plate has become more painful than the original pain it was put in to reduce, and if I am lucky enough for the third lead op. to work, I should be in less pain in my left arm and should not need the plate anyway. Let us see what the surgeon says, but I have been in the queue for this appointment since October 2021, so it cannot come quickly enough for me.

I didn’t have to use this horrible x-ray here, but I did anyway…

Nic and I have also spent a great deal of our time lately helping out a relative with a house clearance. Never an easy or pleasant task, but we are happy to help out when and where we can, given my limited capacity for anything too manual, and Nic’s need to look after me…

Which brings me rather neatly to the title of this particular update.

I did mention, briefly, that I had a significant Birthday coming up (60) and I did know that Nic was planning something, I just had no idea what, and how much she had planned.

Before I go any further I would like it understood that in regaling the story of my birthday I do not intend to boast, but rather give a demonstration that even after 20 years of Parkinson’s it is possible, with a lot of thought, planning and love, to have a great time.

My Birthday was not until Tuesday 14th, but no-one appeared to care about such trivia as the correct date, and I had already received a lovely book from my oldest friend by then, so on Friday (10th) morning we (Nic and I) left home at about 11:00 with two suitcases and Nic refusing to say where we were going. I was wise enough not to venture a guess, lest it be mistaken for a preference that was not about to be fulfilled, and give offence by doing so. That, Ladies and Gentlemen, is called the voice of experience.

So, by 1pm we were in Falmouth, looking for a pub called ‘The Working Boat’, but between us and said pub there were (of course) several council workers resurfacing the entire roadway about 200 yards from said pub. Eventually we found our way to it, and managed to grab the last parking space. On walking in I was surprised, quite literally (they jumped out at me) by our friends S. and A. and I. and J. The six of us were to spend the weekend together in an Air B&B right on the estuary in Falmouth. I won’t bore you with details but the weekend involved lots of alcohol, banter, eating, walking, alcohol, banter, eating, rugby watching, alcohol, banter, eating and games. You get the picture. I was genuinely moved that anyone would want to give up their weekend to spend it with me on my birthday. I was treated like royalty (probably better than some current royals) and felt thoroughly spoilt by their kindness, generosity and understanding of my problems all weekend. You know who you are – thank you again!

I’m willing to bet that I got more family birthday cards than some this year.

But! – it didn’t stop there…

After Sunday lunch with our friends (More alcohol, banter, eating etc) and an unfortunate incident with a nail in a tyre on I. and J.’s car, we went our separate ways, friends back home, us on to a nice posh hotel just outside Newquay for three nights, including my birthday. Highlights included the view from our room, walking on Fistral beach in brilliant sunshine and a tiring but rewarding trip to The Eden Project. On that note, when we return to the Eden Project to finish the tour, we now know the short-cuts for accessibility, which should make the trip a lot easier…

We came home on Wednesday afternoon, and were joined by various members of the family, whom we invoked to help us eat the industrial amount of fabulous gluten free brownie birthday cake, cooked by my sister-in-law Sarah (trading as ‘Young Baristas’, book them now for your summer event). We spent Thursday in recovery mode, repeating such phrases as “Never again”, “I weigh how much??” and “My liver has gone on strike”. On Friday I had a Zoom call (of course I did) at lunchtime so Nic arranged to meet a friend for lunch. Nic does not enjoy my Zoom calls as much as I do, so I suspected nothing was amiss. After an hour on Zoom the front door bell rang. Barney went even more mad than he usually does at the door, and as I walked towards it to open it I could see through the frosted glass panel the shapes of two people dressed in grey. Normally I am a religiously open-minded and non-judgemental person, you can believe whatever you wish. I have no religious beliefs, but I will defend your right to have your own. However, the Jehovah’s Witnesses had annoyed me this time and I was about to point out that I won’t intrude on their day if they don’t intrude on mine as bluntly as possible with using strong language (Me? Swearing?? Never!!!). As I drew in breath to start my monologue I realised that they were not Jehovah’s Witnesses, and on closer examination they were found to be my two youngest children (who reliably inform me that they are not Jehovah’s Witnesses). Another surprise for me organised by Nic!

Mark was not sure that this would be enough to save his soul

So, this weekend has been taken up with having all three children at home, involving slightly less alcohol, banter and eating than the last, because I could not keep that up for too long, and again being thoroughly spoilt again.

Sadly, we saw the two youngest back off to London yesterday (Sunday) lunchtime, and had our last birthday treat, lunch at The Mill on the Exe in Exeter, who provide industrial size roast lunches. When we finally got home we had our very last birthday treat, the last of the champagne that I had been given for the big day. We settled down in front of the telly with our very, very last birthday treat, the last of the brownie birthday cake, with cream and ice-cream. I really do think that is the last of the birthday treats. Until the flying experience. And the tribute band concert. And the National Marine Aquarium visit. And the use of my Ticketmaster voucher. And spending the cash I was given. And anything else that I have missed/forgotten that I was so kindly given.

So, all in all, everything taken into consideration, at the end of the day, when all is said and done, I might be 60 years old, I might have lived for 20 years with an incurable, degenerative, fluctuating neurological condition, but with a positive mind-set and the love and understanding of family and friends it is still possible to have

THE BEST BIRTHDAY EVER!

I cannot overstate my gratitude and love for my wife Nic, who has spent goodness only knows how many hours conspiring with family and friends to provide me with such a fabulous birthday. Thank you, Nic! And thank you to those with whom she conspired, and to everyone who gave me presents, cards and birthday good wishes. Apparently there were more than a few ‘near misses’ with the planning stages, but it all turned out brilliantly in the end.

Next Time: Nothing about my birthday.

Christmas post, post Christmas

Well, there has been a bit of a break, here at the International Headquarters of Shaking not Stirred, but with good reason I might say.

You know how it is – you co-ordinate, you conspire, you even coerce if you have to, but sooner or later it is going to happen. You plan, you prepare, you even procrastinate if you have to, but sooner or later it is going to happen. And it happened to me in the first week in December. It all started, as these things often do, in all innocence. For me it was sore throat on Saturday night, by Sunday evening I felt a bit rough, and on Monday morning, after two and a half years of avoidance, I tested positive for Covid – as did Nic.

To be honest, I thought it was going to be a lot worse than it was. After the radiotherapy in 2013, I seem to always have a cough all winter so I was always afraid that Covid would make my chest really bad. By a stroke of good luck/genetic mutation I only ended up with a heavy cold (not man flu – a heavy cold) and a cough. Mind you, it was quite a good cough. None of your polite ‘Ahem’ type cough, but a full blooded, 100%, ‘HOOSH’ type cough, the type that starts at your toes and builds its way up to your throat. Think Brian Blessed doing an advert for a cold cure. However, I am pleased to say that over the last week it has started to ease. Mind you, I think that it has taken its toll on me. I am so easily fatigued and a bit apathetic at the moment (‘What’s new?’ they all cried) and I am wondering if it might be a little bit of long Covid hanging over me. I certainly don’t feel as well as I did before I got it. Time will tell.

Of course, the Covid arrived just in time for Christmas, and the return of the prodigal son and daughter to join myself, Nic and Adam for the festive season. As ever, it was brilliant for us all to be together (for part of the holiday) despite the fact that we no longer have quite the capacity of our old house. I really enjoyed this Christmas, even if I was not at my very best. I hope that you had a good time as well. It is a good job that the Government are doing such a good job of running the country, with everyone working in the public sector feeling well paid, appreciated, content in their work at not worried about the cost of living, interest rates, job security or food shortages. After all, they are third-world problems, caused by incompetent, self-entitled, narcissistic, greedy, corrupt people running the country, not like Britain at all.

How was your Christmas? Have you finished the quality street yet? I still have half a box of Celebrations (other chocolates are available) to finish, but due to a left-over childhood hang-up, I don’t eat more than two at a time or four a day. And only one more mince pie to g

I am getting back into the routine of my volunteering with Parkinson’s UK – it will be the grant review season soon, which I really love. I am also due for another round of face-to-face sessions with the Special Studies Unit for medical students at Plymouth Uni soon, one of my favourite activities. On top of that I have a couple of requests pending from the Allied Healthcare School, the first one being for Paramedic students.

So it is looking like the spring will be filled with plenty to keep me occupied. Which I am looking forward to but I need to pace myself because, shock horror, I am 60 next month. 60? 60?? Where did that go ??? I was only 25 five years ago…that means that I will have lived a third of my life with Parkinson’s. Sometimes it does seem that I was well in a different lifetime. I have no concept of what a cure might feel like, but as there is absolutely nothing on the horizon for years to come, I don’t need to worry about that.

Mind you, with age comes wisdom – who knows? – this blog might actually get better now!

Just as a matter of interest, recently Nic did some research on what is available for people like me, long term unfit to work and on a fixed income. It turns out that amongst other things I get a bus pass which is handy for trips to Hospital and the like. It saves on fuel and the hassle of parking, plus I can get a bus from the end of the next road to our home, so why not? I also have a CEA card, which gives discount to people with a disability who are accompanied by a carer at the cinema. We are going to try it out tomorrow, I will let you know how it goes.

Finally, and I am keeping this one short, my thanks to the local charity who contacted me this week to offer £3,000 to Parkinson’s UK. This will be match-funded by some philanthropic businesses to the tune of four pounds for every one pound raised. This means that PUK will receive a total of £15,000 which will be ‘ringfenced’ for use here in the Southwest of England. I will name the charity when they are ready to make a public announcement later this year, but it is nice to know that they are being so generous.

No captions at the moment, my laptop’s internet connection is playing up and life is too short.

Maybe next time?

The new UPDRS

This last week has been a lot more pedestrian, here at the International Headquarters of Shaking not Stirred, and I am not at all unhappy about that. No more zooming, either on my laptop or the M5, so I am feeling a lot calmer this week, and I think that Nic is probably feeling that way as well. I do take advantage of her good nature sometimes, but I am eternally grateful to her, driving me around the Southwest and going with me to London as she does. Maybe I will do a little bit less in 2023? We will see.

Last time I made a rather cryptic comment about underpants and Parkinson’s – let me explain…

Parkinson’s is a unique condition, with virtually no two people having exactly the same symptoms at exactly the same time. 146,000 people with ‘P’ in the UK means 146,000 different presentations of the condition. Accordingly, it is the devil’s own job to find a way of assessing the progression of the condition in individuals, because there is no one ‘standard’ to assess people by.

There are a couple of methods that exist to try to at least categorise the stages of the condition. One is the Hoehn and Yahr scale (I keep thinking of it as the Hoehn and Yarg scale, but Yarg is a Cornish cheese…) which, in a nutshell, puts people into one of five very broad bands of progression, from Stage 1 ‘Mild symptoms’ up to Stage 5 ‘Bedridden’. There is an awful lot of Parkinson’s between these two markers, but it is at least a start, and it is universally recognised.

I don’t think that they use this…

Another, and probably more commonly used metric for ‘P’ is the MDS-UPDRS – that is The Movement Disorder Society – Unified Parkinson’s Disease Rating Scale. This is described as “A comprehensive 50 question assessment of both motor and non-motor symptoms associated with Parkinson’s” (Parkinson’s UK website). There are four basic parts to the assessment – Part 1 is for non-motor experiences of daily living; Part 2 is for motor experiences of daily living; Part 3 is a motor examination and Part 4 is for motor complications. Part’s 1 and 2 are usually done via questionnaires, the most common being PDQ 8 and PDQ 39, which ask about mood and depression (PDQ 8) and the challenges of daily living (PDQ 39). The Part 3 has caught my imagination this week. I have done this test quite a few times now. I don’t want to bore you with meaningless detail, but it involves completing a number of physical tasks such as stamping your feet or blinking your eyes (both common issues in ‘P’) whilst being assessed by a Movement Disorder Specialist, who then scores you according to your fluency in completing the tasks. The scoring system appears to me to be rather complicated.

Did I mention that it is rather complicated?

This is all very well, but it really does not take into consideration what sort of Parkinson’s day you are having (we all have good and bad ‘P’ days), where you are in the day (I am much better in the mornings than the afternoons), and the general day to day and person to person variability of this wretched condition. It also has to be said, and this is an observation, not a criticism, that the scoring is done by human observation, and there must surely be a degree of subjectivity here, one person’s pull test (they stand behind you and gently pull you backwards by the shoulders to test your balance) cannot be identical with everybody else’s pull test. So how do you achieve parity with the scores? I don’t know.

However, I do have a suggestion:

It is a universal, indisputable fact that as one’s ‘P’ progresses, such tasks as getting dressed become more and more of a challenge. Not only do buttons and zips become difficult, but the very act of dressing, especially underwear, becomes a daily frustrating chore and test of one’s patience and ability.

So, lets combine the two tests into one. My idea for this innovative medical procedure is simple. Every patient is given a pair of large white men’s ‘Y fronts’ underpants. The nurse/doctor conducting the examination then watches the patient put on these underpants, and rates them according to the following simple scale:

1. Nice and easy.
2. Both legs in but a bit of a wobble.
3. Needs to sit on bed to put them on.
4. Needs someone else to help.
5. Does not recognise underpants.

Observations should be made on the amount of cursing required to complete the task as an indicator of current patient mood status. Because everyone uses the same type of pants, the variables are significantly reduced.

Well done , Grandpa!

Note: in order to preserve dignity and modesty, participants should be wearing trousers whilst undertaking the test. This is not the place for rah-rah skirts or kilts. No-one wants to see that, thank you!

Once the underpants have been deployed, our health care team can then make an informed decision as to the way forward with the patients’ healthcare according to the comprehensive scale above, 1 being still OK, 5 being test for Alzheimer’s.

I have called it the UPDRS – the UnderPants Deployment Rating Scale and I think that it is a winner. Let me know what you think.

8 Days a week

Well, it has been a lot longer than the regular, weekly editions that I previously promised, but it has been a pretty full-on few weeks for all the staff, here at the International Headquarters of Shaking not Stirred, which has somewhat precluded my blogging. Just think of it as an election promise.

The last week in October saw appointments with both the Doctor and the Dentist, plus an on-line meeting with Parkinson’s UK. It doesn’t sound much, but it eats into the spare time in your day quite quickly if you are not careful – and anyway, I had only just updated you last month.

November came in at full throttle and I stayed in the fast lane most of the month. In the first week I had my dry mouth acupuncture on the Monday, we went to London for a PUK annual meeting on the Tuesday. Wednesday was the day of the meeting (more about that in a minute), Thursday we travelled home, and Friday was a recovery day from the previous three.

The following week saw Nic and I going to Taunton for the day for me to talk to some medical students, and Thursday saw me doing the same in Plymouth.

The following week Nic and I went to Bristol to see the Movement Disorder Team at Southmead Hospital on the Monday, I had a home visit from the local Speech and Language Therapy team on Tuesday morning, and a visit to the local surgery for a ‘Well-being check-up’ in the afternoon. On the Thursday I had the dental hygienist (all ‘1’s except one ‘2’) and on Friday we both had a very welcome haircut from Deb.

So far this week I have had an acupuncture session for my ‘P’ – it really does help – and we took Barney to Buckfastleigh to be groomed yesterday – we have to go there as he is “a bit touchy” about being groomed and the lady there is brilliant with him. She says that he is “no problem at all”, which knowing Barney I find hard to believe.

Don’t be fooled by the cute look, he really does not like being at the groomers!

So today finds me with time to “Find we a time for frighted peace and breath short-winded accents of new broils” to quote the only Shakespeare that I read at school.

OK, so this blog is about living with Parkinson’s, let’s look at a few of those events in detail:

The meeting in London was for my main passion, the PUK Reasearch Support Network, Patient and Public Involvement, Involvement Steering Group (hereinafter referred to as the ISG), together with our parallel running steering groups from Engagement and Diversity and Inclusion. The aim was to get all three groups to work in greater collaboration with each other. It was a very good, full day meeting and I personally think that it has laid the groundwork for some good work to come out of it in the future. I am really looking forward to the next on-line ISG meeting now.

Of course, it was never going to be simple for me (or Nic) to simply jump on a train and go to London. No, we had to negotiate the is-it-on? or is-it-off? of the National Rail Strike and Nic had to order on-line tickets three times just to get us there and back. It put me in mind of our trip to Lelant. But the plus side of all the travelling is that we got to see Simon and Lou for dinner on the Tuesday evening, Nic was with them all day Wednesday and we all had dinner again that night, and we finally visited Lou again on the Thursday morning in her new flat in Clapham. When I was in London in the 1980’s Clapham was ‘a bit rough’ to put it politely, now it is ‘quite nice’. Who knew?

Oi, Lynch! – I want a word with you…

The trips to Taunton and Plymouth to talk to the medical students were a real pleasure, if not a bit tiring (a bit???). The idea (and I have often mentioned this) is for the students to think about the person that the patient really is, not just the symptoms, and they are expected to provide a degree of advocacy for their patients. I talk about my experience of diagnosis, the impact and on-going problems of a life with an incurable, degenerative, neurological condition and get them to think about Mark the patient, not Mark the person with Parkinson’s. It can be tough sometimes, but I am honest and open and hope that I make a small difference in their future dealings with patients. There was an additional bonus this year in that this was face-to-face, rather than on ‘Zoom’, and I actually got to meet the group facilitator, Jeff, in person for the first time, which was really good.

Mark’s talk kept the students on the edge of their seats

The trip to Bristol was really good. We had a mid-afternoon appointment which meant we could make a daytrip out of it, rather than having to stay overnight for a morning appointment. I was due to see my usual consultant, but she was away, so I got to see the very nice and extremely talented Dr Alan Whone, who is, the internet tells me, ‘Consultant Senior Lecturer in Movement Disorders Neurology at the University of Bristol and Honorary Consultant Neurologist at North Bristol NHS trust’. This man knows a lot about Parkinson’s, and it was a real pleasure to finally meet him in clinic. We talked a lot about my dystonia (involuntary twisting movements) and there is now a possibility of me having a second Deep Brain Stimulator fitted to control it. I will let you know how that goes.

The Speech and Language Therapist visited me at home to help with some ideas over my (obviously) involuntary choking whilst eating. This is a classic ‘P’ symptom where the bit of the brain that co-ordinates swallowing does not work correctly, with predictable and embarrassing consequences – especially if you are eating somewhere in public. Nothing says, “look at me” more than being given the Heimlich manoeuvre over your apple crumble in your local “Spoons”. They gave me some really helpful advice, which I am not going to put here because that is not what this blog is about.

I have to visit the dental hygienist four times a year (of course you do, Mark!) after the radiotherapy for my throat cancer in 2013. The radiotherapy and its side effects can cause real dental problems as you get older, and it is vital to keep all my teeth as healthy as possible, hence the four annual visits when ‘normal people’ only have two a year. It is not cheap, but it is better than the alternative!

Remember this? It still makes my blood run cold at the thought of it

Well, I think that brings you up to date with my somewhat frantic last month, I hope that you don’t mind that it has been so long since my last one.

Next time, we will be looking at the impact of underpants for People with Parkinson’s. You can’t afford to miss that!

Battery is included.

Well, it has been a challenging couple of weeks, here at the International Headquarters of Shaking not Stirred, but the refurbishment of the bathroom is all over bar the shouting, which puts it pretty much in line with the current government.

Before I go any further, I would like to say how sorry I was when I heard that someone I know has passed away with their Parkinson’s. Dave was a real warrior who had lived with the condition for much longer than me, but I don’t think that he ever let it define him, he was definitely “Dave” and not “Someone with Parkinson’s” – which is just how it should be! I would like to extend my heartfelt condolences to his family, especially to Val. Val was both tremendously supportive and positively inspirational for me when I first started volunteering for Parkinson’s UK back in 2015. She took me under her wing, mentored me through the first stages of ‘learning the ropes’ and continued to provide help and support right up until the time that Covid 19 stood the world on its head, and everything changed in volunteering. I have not seen as much of Val as I would have liked over the last couple of years, but I want to say how very sorry I was to hear about Dave. At least he will finally be at rest now.

Last time I promised to talk a bit about my new Deep Brain Stimulator (DBS), and I like to keep my word, which is what separates me from current members (at the time of writing) of H.M. Government.

Back in May I had a new DBS fitted. The ‘old’ style DBS had a battery with a working life of about five years, depending on how hard it had to work. Once the battery ran low a new one had to be fitted under general anaesthetic, which is obviously a bit of a faff, what with having to go to hospital and all that that entails. For me, the nearest hospital that undertakes DBS surgery is Southmead in Bristol, a mere 125 miles and 2.5 hours’ drive away. So, when I was offered a ‘new’, rechargeable DBS, I went for it without hesitation.

Now, don’t get me wrong here. I am extremely grateful to the NHS for providing me with my DBS, and I am in awe of both the people who invented it and the people who implant it. But no-one told me quite how complex owning and maintaining a rechargeable DBS was going to be. If you can remember the kids toy ‘Tamagotchi’ from back in the 1990’s and what that took to maintain, you are on the right track.

It all comes in a handy carry case.

The bits that go in your chest (and your brain) are no problem at all. They just sit there and do what they are programmed to do – in my case, stop my tremor. The tricky bit is in the maintenance equipment and routine.

There is a recharger unit that hangs around your neck on a yoke, with a counterweight to keep it balanced. To recharge you switch it on and simply hang it around your neck. It emits a (fairly annoying) beeping noise whilst the charger remotely “finds” the DBS via Bluetooth, and once it is located it makes a more subtle chirping noise and, by what appears to me to be witchcraft, recharges the DBS.

The yoke with charger and counterweight.

However, that is the easy bit. You have to know when you need to ‘recharge’. Apparently, if you let the little battery in the DBS unit in your chest go completely flat, it is a hospital visit to get it going again. And heaven knows what Matron would have to say about that. In order to monitor the battery, and to enable you to change various aspects of the programme, the recharger comes with a mobile phone loaded with apps (but no SIM card so you can’t make phone calls). Once the phone is switched on, you then need to hold a second device called a communicator over your DBS and activate the app on the phone that connects the phone to the communicator. Once the phone has acquired the communicator it is possible to get a read-out on the battery life left (ranging from 100% to 25%) or, by using various apps on the phone you can set or change some, but not all, of the therapy settings on the DBS itself.

Clockwise from top left: Recharger, docking station for re-charger, phone with apps, communicator.

There are four separate instruction books that come with the DBS, each one is about 50 or so pages of information. Suffice it to say, rue to my mantra of “If it ain’t broke, don’t fix it”, I have read and remembered enough to check the battery and turn the stimulator up or down dependent on my tremor. As far as I am concerned, that is all I need to know.

The main issues I have are that it can take up to two hours to recharge (each week) and whilst doing so you have to sit quite still. If you move too much the recharger loses its contact with the DBS and it can be really tricky to get it back in exactly the right spot, which can be frustrating.

Also, each of the components – phone, communicator and recharger need to be kept fully charged, which means plugging all three in once a week – and remembering to do so!

Finally, the whole package comes in a zip shut box, about the size of a 5lb bag of potatoes – but in a nice sturdy, blue solid suitcase type box. Which is all very nice, but everything within the box is held in place by elastic bands or Velcro straps. It is all a bit fiddly to use, especially if you have Parkinson’s.

It makes me wonder if the good people at “Medtronic” actually consulted with anyone who has Parkinson’s over the whole design process. The mobile phone needs to be held with my right hand whilst the communicator is held over my chest with the left – so which hand then selects the apps and changes required? I have to lay the phone on a table and poke at the buttons with one finger because I am not dexterous enough with my thumbs – because I have Parkinson’s. It could be better.

It is the same with the carry case, the phone is in the top half, the communicator stored in the bottom half, so you have to undo both sides to access the gadgets, rather than one side for phone and communicator, and one side for the recharger and it’s docking station. And the yoke does not fit in the carry case at all. Who thought of that???

It probably looks like I am having a moan. I am not. I am simply saying that such a brilliant invention (the DBS) seems to be badly let down by a lack of thought in the design and delivery of its associated gadgetry. Life with Parkinson’s is tricky enough, thank you. I don’t need the therapy to make it even trickier.

But I am grateful beyond words for such a brilliant device, supplied and fitted for free.

Thank you (not for the first time) for the NHS!

Stay focussed

Yes, I know that it is Tuesday today and I normally write on a Thursday, and I know that I missed last Thursday after just one week after the resurrection, but it has been a busy old week, here at the International Headquarters of Shaking not Stirred. In a nutshell, it is that doom-laden expression “We’ve got the builders in” – a phrase guaranteed to prompt knowing looks of sympathy from all and sundry. This time we are having the bathroom converted into a shower room because, quite simply, I can no longer get in and out of the bath. In fact, this has been the case for several years now, but it is only recently that we have been able to do anything about it.

Back in 2019 – before the pandemic (I think that the pandemic will become a major milestone in history, rather like WWII – there will be a time pre-pandemic and a time post-pandemic) – I had a home visit from an Occupational Therapist to our (then) new home. When the O/T learned that I could not access the bath they suggested converting it to a wet room type facility, for which I may be eligible for something called a Disabled Facility Grant (DFG) to help with the cost of the conversion. I applied in November 2019, just in time for the pandemic to get in the way. To cut a very long story short, almost twelve months later I received a grant towards the cost of the work (it is means tested) and a company was suggested by the local authority (who make the grant) for the work. Covid being what it was (should that be “Still is”?) it took months for the company to send a rep, and when they did finally arrive, the plan that we received post site visit was nothing like what we wanted. After looking around we found someone more local who did understand what we wanted and last Monday, a mere thirty-four months after my initial application was submitted, work has started.

So now the bungalow once again resembles a building site, the garage is packed to the rafters with timber, bags of plaster and shower trays and poor old Barney is having to listen to sawing, hammering and wonderful Radio 1 all day. He is not sure what to make of it all and to be honest, it is not doing me much good either. Still, it will all be worth it in the end. I hope.

When I said “I want to improve access to the bathroom”…

And, because we are who we are, we are having some remedial work done in the kitchen and utility room at the same time, so the kitchen flooring is up, and the utility room is full of fridges, dishwashers and vegetable racks. Hopefully, peace will be restored by the middle of next week.

Last Monday I went into Derriford Hospital for my regular acupuncture appointment for my dry mouth. Recently I have noticed that my already dodgy eyesight is getting worse (I am long sighted, anything less than arm’s length away is a blur) so I am now wearing my varifocal glasses a lot more than I used to do. Because the acupuncturist puts three needles in each ear (Yes, I know, but it works!) I took my glasses off and placed them in my coat pocket for safe keeping. After the therapy session I made my way back to the car and prepared to leave. As I approached the car-park barrier I realised that I would need my glasses to read the leaving instructions. When I put them on, I thought that the lighting in the carpark was a bit low because I had trouble reading the instructions on the little screen thingy by the barrier. However, I got out OK (I guessed that the green button was the one that I wanted) and carried on home. After about half a mile I started to think “That acupuncture has affected my eyesight, I can’t really focus properly” but I dismissed that immediately as it has never happened before.

Maybe I had got some dust or pollen in one eye? Yes, that would be it. I gave my eyes a good rub when I stopped at the traffic lights and things seemed to improve. This went on for about another five minutes, rubbing my eyes, losing a bit of focus, things improving and then dropping off again. Eventually I stopped at some temporary traffic lights. I closed one eye, then the other, and looked at the car instrument panel. I found that my right eye was still in focus, but my left eye was way off. Then I realised the problem. Obvious really. My glasses were dirty and the left eye needed cleaning. Still waiting at the traffic lights, I took off my glasses to clean them in a soft cloth we keep in the car door skip. And that is when I discovered that whilst in my coat pocket in the hospital, the left lens had fallen out of the frame. In the dimly lit car park, I had not noticed the missing frame and just plonked them on my head, as usual. When the penny dropped, I roared with laughter so much that the chap operating the digger at the roadworks gave me a very strange look. I was laughing so much I almost missed the next phase of the traffic lights, but the sound of the horn on the white van behind me brought me to my senses.

Maybe taking the left lens out would help

To think, all that happened because I am long sighted. If I were short sighted, I could be in Liz Truss’ cabinet.

Next time, meet my new Deep Brain Stimulator.

Look who’s back in Town…

Well, I think it would be fair to say that it has been a little while since the last update from us here at the International Headquarters of Shaking not Stirred. Your reaction is either going to be “I wonder why?” or “Thank heavens for that!” – it is up to you.

So, I suppose that an explanation is required here really – so here goes:

To be honest, looking back at last winter I think that with the benefit of hindsight I was a lot more depressed than I thought that I was. I am not talking about ‘thinking about ending it all’ type depression, more like an ‘You know, I just can’t be bothered’ type depression, and I think that it has taken me several months to realise that I was so low. I seem to recall that at about this time last year I wrote about getting low mood in winter, and it was ever thus. I must try a bit harder this year, and one of those things to try to help will be the self-discipline required to knock out 800+ words once a week to unburden me and burden you. I think that I just fell out of love (got bored) of writing for a while, but hopefully the fire has been re-ignited.

Mark felt that something about his blog needed freshening up

It has been quite a busy summer really, and all the better for the wonderful sunshine that we had for weeks on end. Not ideal for everyone I know, and in the long-term it is worrying that global warming seems to be very real now, but who doesn’t want wall-to-wall sun for the summer? We spent quite a bit of time at the caravan (sorry – holiday home) in Cornwall, to the extent that Nic has bought herself a wet suit. For someone who has not previously really enjoyed sea swimming that really is significant.

In April the Plymouth University School of Health Professionals resurrected its Service User and Carer Group, and this was my first face-to-face volunteer meeting since Covid and it felt like a real step forward after the last, disastrous, two years. We have had a second meeting since then and I think that this group is just finding a new potential. I will keep you updated.

In May I went back to Southmead Hospital in Bristol and had my five-year-old Deep Brain Stimulator (DBS) replaced because the battery was about to run out. I had neglected my regular checks on battery level on the old device and when I saw Caroline, the Movement Disorder Nurse, she was less than amused to find that the battery was almost flat, and I had to be squeezed into the surgical list at very short (2 weeks) noticed before the whole thing conked out on me.

This is what Deep Brain Stimulation looks like.

The night before the operation I had to stop taking my medication and turn my DBS off. It was a real shock to see just how bad my tremor has become and how reliant I am now on the technology just to cope with day-to-day living. I have been fitted with the very latest all singing, all dancing, re-chargeable battery DBS. It requires re-charging once a week, which requires me to sit still for about an hour with the re-charger over my chest. It can be a bit of a faff, but it is better than having an operation on the same site in my chest every five years.

Also in May, my two groups of third year medical students presented their Special Studies Unit (SSU) work for marking. I have written about this before, so suffice to say that they were both excellent and all eighteen of them got a good grade. I am already working on my first presentation to this year’s year three students, and with the reduction in Covid restrictions this will be the first SSU that I have done in person. I am really looking forward to it and working with the same facilitator again, Jeff.

In June I started to have some Parkinson’s symptoms related acupuncture. Some of you might (but I’m not holding my breath here) recall that I already have acupuncture for my dry mouth problems at Derriford Hospital, after radiotherapy on my throat in 2013, but this is a whole new level of treatment at a private practice here in Tavistock. To keep it slightly less boring than it could be, we (the acupuncturist and I) have identified that I am lopsided to the right, I have chronic shoulder pain, some depression and some anxiety that all need treating.

I don’t have a clue how or why sticking tiny little needles in various parts of my anatomy help with physical and mental health problems, but all I can say is – “It works for me”. I am in considerably less pain than I was with my shoulder, I feel more upright in my stance and my mood has improved. Of course, I am still barking mad, but even three thousand years of Chinese medicine won’t cure that problem.

Made to make your mouth water (ask your grandparents).

I also had my PIP (Personal Independence Payment) benefit review in May. It is a long, complicated and detailed process to get this, what Liz Trust regards as a “handout”, to help with the additional costs of being disabled, but if you do have Parkinson’s, or any other disability and you are not claiming, perhaps you should consider doing so. Mind you, I would strongly advise getting some professional help, probably an Occupational Therapist, to help you fill out the initial application. My application was for a renewal, and if you include the one-to-one phone call with the DWP assessor, I reckon that I spent at least eight hours on the application. Plus having to get Nic to write it all out for me because I have that classic Parkinson’s symptom, micrographism (tiny, illegible handwriting) and the DWP, being a government department, don’t seem to have the ability to provide the application in an on-line format. Still, it is only 2022, why the hurry for this new-fangled Interweb stuff?

In July I found out, to my great dismay, that my G.P. is retiring in October. I will have to try to find someone else to listen to me drone on about how ill I am and how much I need to drain the NHS and to make sure that it is all about me, me,me.

August was nice, but other than enjoying the sun, I don’t seem to have done very much!

The highlight of this month has to be the three-day weekend we spent with friends in our caravan (sorry, holiday home). I think it is like the Summer of Love – if you can remember it, you were not there. They are indeed brilliant friends – who else would be happy to go out for a walk on a sunny Saturday afternoon to make sure that I could have a sleep before going out on Saturday night? Most people would think that sloping off to bed in the middle of the day would be anti-social, but they were quite happy – probably because they got a break from me for a while!

Mark prepares for another Saturday night on the town.

Well, that was a quick re-cap of the last six months or so, but if I put everything, I want to say in one blog then it would be far too long and boring – so, more next week!

And if you wonder just why you read this, go back and read the last blog “To the workhouse” in February.

Just call me “Nostradamus”. Or not…

Just saying!