sorry with knobs on. You don’t even get a chocolate hob nob for being a long standing reader of la blog. I don’t even tell you when I’ve had the operation. Well I have and here are the newspaper columns to elaborate on the goings on …
62. Diagnosis is like a concrete boulder being slung into a peaceful stream
Reassuringly, I could still wiggle my nose and was still 5’8″ tall the day after being diagnosed with Parkinson’s Disease (PD). My PD nurse was trying to be positive by saying that nothing changed when I was diagnosed. After months of medical appointments, with what seemed like unconnected symptoms, I no longer felt like a hypochondriac; this ‘thing’ had a name,
The impact of a Parkinson’s diagnosis is like a concrete boulder being slung into a peaceful stream. The Wise-ish man, in one of his Wise moments, said; ‘There is more than one victim’. The initial impact causing ripples affecting others; my children now had a mother with Parkinson’s, my parents a daughter with Parkinson’s, and my friends a friend with Parkinson’s.
Why do I write?
I am often asked why I write. It helps me to work things through, whether writing about a bad experience or attempting to turn a stressful situation into an amusing anecdote for the column. I hope it also raises awareness, understanding and empathy, so that others living with PD and their families feel less alone. If writing ever causes me stress, then I will stop.
Turning stress on its head
When PD is kicking off I often attempt to see the funny side of a difficult situation.
For example; I arrived for an MRI scan stressed. Walking was difficult and I was switching ‘off’. I was helped into the scanner by two nurses. About an hour later the nurses returned to help me. I was fairly confident I was now switched ‘on’ and I was feeling mischievous. The nurses braced themselves to help me, I hopped off of the table and strode towards the door announcing ‘Cured!’. I did go back and explain.
If the Aliens ever complete their report ‘The A to Zee of observations of Life on Planet Earth’, sandwiched between, Octagons (eight uses for eight sided shapes) and before Queen (bees and the band), there is every possibility you could find the following stereotypical definition. Parkinson’s Disease is a (currently) incurable degenerative neurological condition affecting older men with a tremor.
If you are shouting at the page ‘Parkinson’s Disease is not just a tremor and that Parkinality bird is not an OAP’, thank you, some awareness has reached you.
Exercise is important for everyone’s mental and physical health. It is also essential in the management of PD. Like most people I need motivation to exercise and, with the increasing cost of petrol and pancakes, gym membership is expensive.
Everyone Active is currently offering free membership to everyone living with PD, all you need is a letter confirming diagnosis. They are also offering free membership for a carer/friend to join you by being linked to your card. As an added incentive membership includes a discount in the cafe.
The support group now meets monthly at the Grange Paddocks cafe, where they also hold Nordic walking classes. Clock cricket, which at £3 for an hour session, is held weekly. It is played seated, is good fun and is accessible to all. Relaxed swimming and table tennis are also available. Email Claire Uwins for more information about all these activities firstname.lastname@example.org .
Parkinson’s UK Charity
Parkinson’s UK are a charity offering vital support through their helpline and website. They also campaign on behalf of those living with PD. For example for free prescription charges and the ‘get it on time’ campaign about medication – read more about them here.
The ripples from that diagnosis boulder have reached my daughter’s boyfriend. He is running the London marathon to fundraise for Parkinson’s UK. As he says in his just giving page, he has ‘been able to see first-hand the impact Parkinson’s can have on someone and those around them’.
Thank you to him for undertaking this huge challenge. Although I’d much rather PD was cured and he could use his training time to eat snickers. But it isn’t and he isn’t.Parkinson’s UK rely on fundraising to support their work. Here is the link to his Just Giving Page. Please, donate if you are able, and share the link to create your own ripples of awareness (other chocolate bars are available).
Published : June 2022
And now what you have all been waiting for … the BRAIN OPERATION
63. In and out of hospital for an eight hour brain op in 33 hours
I am always honest in my writing but I usually wrap honesty up in an analogy, it was time to cut to the chase.*
I was given a new date for my operation straight away. This time I didn’t tell many people. I had got myself so worked up in May attempting to prepare for every eventuality, that in June I was in denial. I couldn’t take the stress of being canceled again. So the realisation that the op was in two days time was a huge shock.
Emotions were seeping out of every orifice. I turned to those who I knew would be there in times of stress, who I knew would listen without judging and who would guide through my complex emotional roller-coasting maze. The Samaritan’s are always there 24/7 to guide you through difficult times. They didn’t tell me what to do they ‘just’ listened.
321, I was back in the room and people were shouting at me to wake up.
Prior to going into theatre the risks of undergoing brain surgery had been explained to me. This was major. It wasn’t fiddling round with an ingrowing toenail (apologises to any toenail fiddlers). It was eight hours of surgery on my brain. A lost foot would be inconvenient, a lost head a slightly more serious dilemma, On the other hand to me personally it was eight hours of unconsciousness, of nothingness. For all I knew they were carving an intricate representation of my foot in a cornfield. They certainly had time to.
So what had happened over those eight long hours? In my best Lloyd Grossman voice; ‘The clues were there’. I had had the longest shortest haircut. When I went into surgery I had a space cadet hair cut, when I came out, some eight hours later by the Gregorian calendar, I had a space shave. The surgeon had to shave my head in theatre to lower the risk of infection.
Those eight hours had disappeared from my known universe. I knew a frame had been clamped to my head because my scalp looked like an alien space ship had landed leaving red dots on my head. Then someone had neatly blanket stitched my head neck and chest. I didn’t feel or remember a thing.
In the recovery area the medical professional who was charged with looking after me; where ‘looking after’ meant laughing at my jokes. He must have wondered why he had gone through years of med school to be stuck with guarding a mad woman, In my words, ‘I was testing out my personality on him’, to make sure my brain worked and I hadn’t lost my sense of humour. Oh dear. It wasn’t great. To those (un)lucky enough to get a garbled message from me, sorry. To those I didn’t contact please be grateful, I was keen to note down some of my classic comedy lines, but fortunately for you I had difficulty operating my phone,
I was finally wheeled up to the ward after about four hours recovering in recovery. Alice was the lovely nurse who looked after me that first night, who was there when I cried and when I asked for the twentieth time the exact location of my stitches I was so frightened of knocking them.
Alice was also the lovely lady who showed me my head. I did consider drawing hares on my, I assumed square head, as at a distance they would look like rabbits, or even vice versa. But actually my head was, spherical and devoid of lapins. My selection of scarves and hats were hot and uncomfortable and so my head and scars have been mainly uncovered.
I’d like to apologise to all those I have scared with my alien head shave. I was released back into society the next day, so 33 hours after being admitted, 8 hours of which were in theatre. Unbelievable I know, but there are no pain receptors in the brain so the pain was on the outside of my bonce, a couple of paracetamols and I was fine. So tis done … and so what is the effect? Like all the best cliff hangers you must watch this space as I will be switched on in August 2022.
Watch this space
Published : July 2022
64. Preparing for the bit switch on with head fairy’s help
Scarves, to cover my post operative scars, turned out to be like an apple pie; hot and difficult to tie stylishly on my head. I hope that anyone who saw me remembered not to judge this book by its cover. Despite my scarred and shaved head, I can assure everyone that I’m not about to cause an affray.
Whilst asleep in surgery, the Head Fairy left two boxes of equipment and instructions in preparation for the switch on. People have asked what I mean by being ‘switched on’? It is literally that; I have a rechargeable handset which my consultant will connect by blue tooth to the battery pack under the skin on my chest, and I will be switched on. Once switched on and programmed I will be able to adjust the settings in order to control the electrodes in my brain.
As with everything Parkinson’s programming is not an exact science. There is no blood test to monitor how my body is responding. It will depend on me articulating to my consultant how my symptoms, hopefully, change and evolve when I adjust the machine and my medication. So programming is likely to take several visits.
I will be seeing my consultant in August to give my brain time to recover from the operation. I’d been told that the post operative swelling sometimes has a positive effect on symptoms prior to switch on, but that as the swelling goes down any affect is likely to reduce (I don’t know why either).
At time of writing, I’ve had a couple of weeks free from debilitating Dystonia (involuntary twisting and clenching of muscles). Dystonia is a disease in it’s own right which I happen to have as well. I’m not pernickety, if DBS wants to get rid of other ‘annoyances’, I can provide a list. Post op I also needed to reduce my medication very slightly. As with all positives there has to be a negative I seem to have developed an intermittent, but extraordinary, tremor in my left hand. Medication is now back to pre op levels and the Dystonia has returned. ‘Insert preferred expletive’. I must remember to remain positive.
To add complications to the insult which is PD, regular readers will be aware that I also live with Crohn’s Disease. The fortnightly injections which manage my Crohn’s by suppressing my immune system had to be paused prior to the brain surgery. My body needed every bit of immunity to fight any risk of infection from the operation. The Crohns, briefly released from the constraints of medication, had started to kick off. I am now back on the injections and reining back in the Crohns.
To be absolutely fair this column should alternate between being called Parkinality and Crohnsinality. However a record of the frequency and consistency of my poo does not have the same opportunities for humour as will she/won’t she be able to walk across the room – okay maybe it does.
On Saturday my head had another outing, this time sensibly covered by a hat to protect my scalp from the sun. It was the Stortford Heroes concert on Sworders field. Very well organised, we took advantage of the offer of extra assistance. They allowed us to drive into the field, where we were looked after by the brilliant volunteers. It was an opportunity for my youngest daughter and I to groove to The Hoosiers which we had watched in almost the same spot ten years ago at Cazfest.
The recent high temperatures played havoc with my Parkinson’s medication and my symptoms went haywire. It is important for everyone to stay out of the sun and hydrated. Here is a link to some information from Parkinson’s UK.
I have written before about there being more than one victim in a Parkinson’s diagnosis. There is also more than one victim in a DBS procedure.
Thank you in particular to my daughters who have been amazing supporting me through all the ups and downs of living with PD.
Thank you also to the wise ish man for his patience and wise moments, supporting me when I am a particularly Paranoid, soon to be, Android.
Published August 2022
65. Lifting the lid on the day Lavinia got some support
Lavinia was in a state of flux, She had been doing her best for 10 years attempting to manage deteriorating Parkinson’s Disease (PD); organising, sorting and dispensing medication as it arrived in the brain.
After years of the same old routine, where as PD deteriorated, medication was increased, 27 June 2022 was a date etched on her mind. This was the day of the brain surgery, when Lavinia’s ‘brain office’ was invaded, and her faux cheese plants replaced with electrodes. Six weeks after brain surgery the rods were switched on. As they glowed, a delivery of reduced medication dropped into Lavinia’s brain office. Lavinia was now flummoxed, she was working with less medication, in conjunction with rods controlled by an outside force. This was going to take some getting used to.
Anyone else imagine there are tiny people in their body working hard to keep you burping and breathing? Just me then. Allow me to introduce, Lavinia, my brain operative, who helps me make sense of the copious amounts of medication I take.
Ten years ago I had gone from not even thinking a paracetamol would work, to having to trust and rely on medication to help me brush my teeth and put on my coat. With long term medication use, the associated side effects and the medication’s unreliability with food absorption, PD was becoming increasingly difficult to manage with medication alone. Hence the introduction of Deep brain stimulation (DBS) implanting rods deep into my brain, creating an alternative method of managing PD.
If Lavinia is confusing you, and you prefer your information unencumbered by analogies, then here is my attempt at bullet points to describe what happened when I was switched on. I have been waiting for this moment for so long, I am (almost) lost for words.
Firstly allow me to clarify to everyone who has asked; it wasn’t a Z list soap star, it was an A grade neurologist who switched me on.
- I arrived at the appointment, virtually unmedicated, in a wheelchair.
- My consultant logged onto the device in my brain on his laptop.
- He waggled my left hand and asked me to wave with my right hand.
- He altered the settings of the electrodes on his laptop until my left hand waggled satisfactorily – not too floppy, not too firm.
- He then swapped to my right side, connecting his laptop to the rods in my brain.
- He adjusted the rods as he waggled my right hand and asked me to wave with my left hand.
- As he altered the machine my vision ‘went weird’ (not a medical term) and I felt nauseous.
- He changed the electrode settings until the hand waggling and hand waving was satisfactory (and I stopped feeling sick).
- I was able to walk on limited meds and the machine set to low levels of stimulation.
I was told to take one tablet and I returned after an hour to see how I was coping. On the advice of my neurologist my medication has now been reduced and the settings on my DBS machine set. I will return in a month to see how I am getting on.
It is not an exact science and it is only through trial and error, my Neurologist getting to know my brain and me articulating how I am feeling between appointments. After all over a month, I spend about half an hour with my neurologist, the other 743.5 hours I manage PD alone.
So what has happened? I do not have a big switch on my head nor flashing lights announcing I am switched on or off, so the unaware might not realise anything has changed. In the past if you have bumped into me by the bin store looking tip top ish, it is likely I have chosen to use my brief ‘on’ time to put the rubbish out. I hope that the introduction of DBS and the reduction of the medication will, not only, mean I can put the rubbish out whenever I wish, but I can then choose to skip into town to buy more bin liners.
Published August 2022
66. Spill free bar visit the aim with an order of positivity
It is now nine weeks since the DBS operation (Deep Brain Stimulation), when, during 8 hours of brain surgery, electrodes were implanted deep into my brain to help control my Parkinson’s (PD). I have now been switched on and had the initial programming. My positivity is being tested. I’d looked forward to this moment for years. I’d imagined that after having DBS surgery and being programmed, I would excitedly announce to the world, that the change in me was miraculous. I imagined proudly proclaiming that I was now able to, amongst many other things, immediately return to tennis, brush my teeth at the traditional times, and button and re button my cardi with the fiddly buttons, as many times as I wanted to.
However things are not perfect and I must remember that this is neither a cure nor a quick fix. The Wise-ish man had the surgery seven years ago and he is constantly reassuring me that it could take several visits to the Neurologist to programme the device to optimum levels. Despite this I am an impatient patient, but for my and the Wise-ish man’s sanity I must concentrate on the positives.
Morning races round the kitchen have been cancelled as I haven’t needed to use the wheelchair in the house since the machine was switched on. I have not had full blown dystonia (involuntary muscle spasms) nor dyskinesia since I was switched on. Much to the chagrin of folically challenged men, my hair is growing back quickly and thickly.
A major positive is that since switch on day, when the rods in my brain were set to low levels of stimulation by my Neurologist, and, under his advice, I reduced my medication by seven tablets, the move to becoming a hybrid human has been seamless. From a practical point of view I cannot ‘feel’ where the control is coming from, tablets via the stomach, or electrodes directly into the brain. Credit must go to Lavinia, my (imaginary) brain operative, who has coped well, so far, with the transition to managing my PD with medication and machine.
An imaginary brain operative, may seem silly to those with a sensible head on their shoulders. However, the combination of being diagnosed with a (currently) incurable degenerative neurological condition at the age of 44 and having to come to terms with relying on taking medication for life understandably proved difficult to come to terms with.
Over the years whenever a new type of medication was introduced, I would feel awful. I would take yet more medication in the form of anti sickness tablets for a couple of weeks, until my body got used to the new type of PD tablet. Imagining that Lavinia was running around my brain in a state of flux making me feel dizzy sick, whilst she worked out what to do with the new medication, helped me. Delegating the management of the condition to someone else, albeit an imaginary person, went a tiny way to relieving some of the stress. However, even an imaginary friend has her limitations. I am responsible for ensuring I have a supply of medication in the house, and that my handset and power pack are always charged up,
Negative points are briefly listed below, so that I don’t dwell on them:
I have been getting fascial dystonia when I am stressed.
I am still switching on and off with no warning.
I am still freezing.
I have developed a tremor in my left arm since the operation.
My hair is growing back grey and not a beautiful brunette.
I must listen to the Wise-ish man, relax and allow my body and brain time to recover from, what was a major operation. I go back in a couple of weeks to be programmed again, and I will report back. Hopefully then I will need to brush my hair and will be able to carry a pint of Guinness and a gin and water back from the bar without spilling a drop.
Published September 2022
So that’s the story (if only it were only a story, and not real life), so far.