We are up reasonably early (7.15) to grab some breakfast and a cuppa before my wife and I go back into London for my hospital appointment. We help my daughter pack her belongings into her little VW Golf, and then drive to Stevenage railway station to catch a train to King’s Cross.
We arrive at the hospital half an hour early – this makes a change, because we are usually rushing to get there on time. So much for being early… We are kept waiting for over an hour and a half to see the DBS nurse who is going to perform my adjustments. When she does make an appearance, she makes an excellent job of it – listening to what I am telling her about my issues with the current settings, and being very thorough in her questioning of me. She spends a little while making adjustments – at one point she turns my DBS off completely, and it’s a stark reminder of how bad things would be if I hadn’t had my surgery. My voice is stronger and deeper almost immediately – I’m so grateful for that! My walking is also improved (a little) although I am still aware of a certain “wooden” quality. Mentally, I feel my spirits are lifted slightly, and my wife says that I have regained some facial expression. Tremor on the right side is well controlled, but there is still a tendency for it to break through a little on my left side – it’s a bit of a compromise, but then most things in life are! I’ll let the settings bed in for a day or two, and see how things are then.
We are off to Stevenage today to visit my daughter. She its spending her final night in her rented house there before travelling back to York to do the final year of her biochemistry degree. My son and his girlfriend are also going to be there, and were are all going to travel into London on the train and spend the evening in the Blues Bar.
We have a good clear run to Stevenage, dropping the dog off at my wife’s youngest son’s house in Hevingham on the way. A quick train journey sees us in the Blues Bar before 5pm for their weekly blues jam, where all manner of highly talented musicians turn up and play some amazing improvised and unrehearsed blues. Today is a really good day (it’s usually very enjoyable, but a lot depends on who turns up to play – top quality musicians here today!).
We drink plenty of Adnams Southwold Bitter, whereupon my speech becomes very slurred and people are giving me funny looks (although I’m definitely not drunk). I can’t wait until my DBS tune-up tomorrow – I’m really hoping they can do something about my voice!
We catch a late train back to Stevenage, grab a taxi from the station, and we are all in bed shortly after midnight
It’s a sunny day in Southrepps and my wife and I are determined to spend some time working on our allotment today. My wife wants to cut the grass and do some weeding, and I want to re-felt the shed roof – it got badly damaged by storm Doris a while back, and I have been meaning to effect repairs ever since. So, we sort out an old roll of mineral felt that has been gathering dust, some roofing nails, screwdrivers, hammer, Stanley knife and step ladder, and head off to the allotment.
My wife makes everywhere look neater and tidier while I effect a passable repair to the shed roof – I’m not going to go into detail, but I’m just glad that nobody was watching me do it! My feet are dragging as we make our way back home, and I know I’ve overdone things (again).
A hot bath revitalises me enough to go grocery shopping at Lidl in North Walsham with my wife, and we have a quick dash around the aisles to stock up for the next few days.
Back home, I slouch on the sofa (recovering) while my wife (wonderful girl that she is) prepares our evening meal. Good food is followed by a beer or two and a little bit of cannabis to calm the left-sided tremor that is breaking through.
My wife is looking after our eldest granddaughter today, and she is bringing her to our house in Southrepps for a while. My wife’s mother is also coming over, so making my weekly vlog is going to be trickier than usual.
I make a start on the script while my wife goes over to Hevingham to collect our granddaughter. I take an enforced break when they arrive back at our cottage, which is really no hardship – she is almost 2 years old now, and as cute as a button. She is coming out with more and more new words every day, and interacting with us and the dog – most entertaining!
I finish off my script while my wife and her mother take our granddaughter to the local playground for a while. At lunchtime they return to Hevingham for the afternoon, leaving me in peace to film and edit my vlog, which I accomplish (with a few re-takes, due to my voice, which is disappearing and strangling my words). I upload the video to my YouTube channel, publish it, post links to it on social media, and…. relax!
Another day of inaction, I’m afraid. I feel tethered to the sofa at the moment, just sitting. If it wasn’t for researching for my weekly vlog, then I really would be sat here doing nothing. I am working on a vlog about innovative products for people with Parkinson’s, and I have selected a few products to talk about – I really need to use some product pictures to bring things to life, so I email the companies concerned to request permission to use their images. I get two replies within the hour (granting me permission) but its now after 6pm and I’m still waiting for responses from the other companies that I contacted. Since I can’t guarantee a response before tomorrow, I decide that this vlog is going to be for next week, and choose another subject for this week’s.
I stumble around the village hall field with the dog, and then resume (and finish) the preparation of my misshapen carrots that I failed to complete yesterday. Finally, I chase up ParcelForce about a consignment that I booked online last Thursday – their website crashed while I was booking the service online, so I had to start all over again and they charged me twice! They had promised to resolve the issue and call me back, but it’s now a week later, they haven’t called and they’ve still got my money (and I’m not very happy). I receive a further assurance that it will be sorted out and that I will receive a phone call tomorrow. We shall see!
I had another good sleep last night, and I’m still feeling washed out this morning, although my arms aren’t aching so badly as they have been and my tremor is still fairly well contained (apart from in my left leg). I intended doing a little work down on the allotment today, but I just don’t feel like I have enough energy.
I take the dog for her morning walk, and then feel that I have to sit down for a while to recover – pathetic, really…
I spend the morning finding out about how to sell stuff on the Amazon website, because my wife wants to start selling curtain poles and such-like on the internet through her soft furnishings business.
This afternoon is spent trying to prepare a large bowl of very misshapen carrots (that I harvested from our allotment a couple of days ago). I say “trying”, because I can only manage to stand at the sink for 10 minutes at a time, and then have to sit down and have a rest for 20 minutes. By the time my wife turns home from work, I have only done about two thirds of them – I’ll finish them off tomorrow!
Dinner, beer (Bishop’s Finger) and another early night.
I slept soundly last night, but I’m still feeling tired and my arms are aching so I won’t be doing anything physical today – I had in mind mowing the grass at the allotment or washing my car, but those tasks can wait for another day.
The most physical thing that I do today is to move the new Calor gas bottles (that were delivered a couple of weeks ago) into the storage area in the back garden, and that’s quite enough to be going on with!
I script a few questions for my interview with Norman Lamb next month, and respond to an email from Martha Orbach, the London based artist who watched my Deep Brain Stimulation operation last April and who is currently working on a project about Parkinson’s Disease and DBS – she wants to meet up to discuss her project the next time I visit London.
I spend the afternoon editing my neighbour’s safari holiday video – there surely can’t be much more of this? Tremor is in my left leg again, but it’s not too severe and it’s not impeding my progress. The only symptom that is bothering me is my voice, which is very weak and husky today, so I keep my mouth shut and get on with the editing.
While my wife goes out for a run this evening, I prepare my ratatouille type dish using one of our marrow-sized courgettes and an onion from our allotment, along with some tomatoes and half a bulb of garlic. My knife skills are much improved now that my tremor is under some sort of control, and I manage to chop all of the ingredients without cutting myself, but I struggle with muscular pain in my back from standing after about 10 minutes.
After dinner I crack open a bottle of Bishop’s Finger and self-medicate with a little cannabis.
I’m taking it easy (again) today. I had a mildly disturbed night’s sleep last night, and I’m aching a little following my exertions at the allotment yesterday.
I receive an email from the office of Norman Lamb this morning, suggesting a couple of dates for myself and the production company who are making the documentary “The God Plant” to interview him regarding his views on the legalisation of cannabis, so I liaise with the production company and we agree to film him on the 8th September. Since the production company have expressed a wish for me to interview Norman, I’d better get my head together and script some questions to ask him, so I spend some time on the Liberal Democrats website familiarising myself with their 2017 General Election manifesto.
My tremor is much improved today, to my surprise. My symptoms are generally worse when I’m fatigued, so it’s a mystery to me… My voice is stronger as well. My muscular weakness and stiffness is more of an issue, but then that is not unexpected. Dystonia is unchanged. Dyskinesia is worse. Overall, I’m not complaining.
We are having a lazy day today. I have booked a table for Sunday lunch at The Vernon Arms – we won a three-course Sunday lunch for two in the local Open Studios draw this year. It’s actually a little embarrassing, because we won the prize in last year’s draw as well. Having said that, it’s not embarrassing enough to prevent us from accepting it!
Before we go over to the pub, my wife and I go to our allotment and spend an hour weeding, returning home with freshly harvested carrots (some very misshapen ones!), courgettes (before they have time to become marrows), beetroot and spinach.
We enjoy a leisurely lunch in the pub, along with several pints of Abbott Ale, and remain there long after we have finished our meals, listening to some mellow blues from Stone Pony, a local duo who are playing in the bar this afternoon.
We return home somewhat the worse for wear, and have an early night.
I have a bit of a disturbed night last night – not sure why, but I was awake around 4am, then 5am, 6am and 7am. I decide, since it’s Saturday, to remain in bed, and manage to snooze until almost 10am, which kind of makes up for the earlier awakenings.
Today we are going to my wife’s youngest son’s (and his fiancee’s) house to try to help them out a bit. They recently had an addition to the family (our 2nd granddaughter) and they are both feeling the strain. So, while they are out doing a little shopping in Norwich, my wife is grouting the wall tiles in their bathroom while I am fitting a blackout roller blind in the nursery. My tremor is bugging me (still – I’m looking forward to my programming session at the NHNN on the 21st), and muscular weakness and stiffness is pretty uncomfortable in my upper arms but I do manage to fit the blind unassisted.
Mission accomplished, we return home via Lidl in North Walsham for essential supplies (which include beer and ice cream, in case you were wondering).
My wife disappears off for a run, while I slam a couple of ready meals in the oven (red Thai curry), and make a start on the essential supplies (beer). I also self medicate with a little cannabis to try to ease my muscular tension, which it does.
I had a great night’s sleep, but still I’m feeling extremely tired after my busy day yesterday. My muscles are aching, my tremor is breaking through (mainly on my left side), my voice is a bit on the weak side, and I don’t feel like doing very much today.
I have a vlog to do, though, so I decide upon a topic (current advances, exciting research and the search for a cure for Parkinson’s Disease) and set about researching it. It becomes apparent (fairly quickly) that the subject is too big to cover in a 5 or 6 minute vlog, so I decide to select one area of research (stem cell treatment) and cover that this week. 3 hours later, I’ve done some research and come up with a script that I feel fairly happy with. Filming myself is a bit of an effort because my voice is breaking up, but I eventually (after several re-takes) manage to shoot something that I’m reasonably happy with. I load the footage onto my MacBook and get it edited before I take the dog for her afternoon walk.
By the time my wife gets home from work, I’ve uploaded it to my YouTube channel, published it and posted links to Facebook, Twitter and Instagram as well as to as number of Parkinson’s Disease forums that I am subscribed to.
Time for dinner, a beer, some cannabis and an early night!
I’m expecting a film crew in the house today, so I have several hours of cleaning and tidying to do before they arrive this afternoon.
First things first – a cup of tea, Nutriblast, dog walk and pay a couple of bills online before I forget. Then I set about dusting and vacuuming the lounge, kitchen/diner, hallway, stairs, landing and bathroom. I wash the tiled floors in the kitchen/diner and the bathroom and then give the basin, toilet and bath the once over. I feel that the house is now in an acceptable state, which is more than can be said for me! I’m hot and sweaty and knackered. I have a bath, get changed into clean clothes and retire to the sofa to await the arrival of the film crew.
I receive a phone call to say they are running a couple of hours behind schedule, so take a leisurely stroll with the dog around the field by the village hall.
I’m feeling a little less knackered by the time they arrive at 5.30pm, which is just as well. They fill the downstairs of our little cottage with camera, tripod, audio and lighting equipment, and then their presenter, Morland Sanders, interviews me about my use of cannabis to treat my Parkinson’s Disease symptoms. My tremor is breaking through quite strongly on both sides – the stressful situation of being interviewed is definitely making itself known. They do a number of takes from different angles (even the dog gets in on the act) and then its all over. Equipment packed away and film crew gone by 7.30pm.
I think I should sleep well tonight!
It’s a grey, wet day in Southrepps today, and I’m planning on spending the day indoors. I take the dog for her morning walk when the rain appears to have slacked off a little, but it’s still wet enough for me to make it a fairly brief outing.
I book a courier online to send a parcel on behalf of my wife’s soft furnishings business, and encounter a web server error when confirming the order. This means I have to submit the order again, and I notice that they have taken payment from the business account twice! Grrrr! By the time I’ve managed to get through to the courier company’s customer service department (which involves navigating one of those infuriating automated call handling systems), explain the problem to the customer service representative, and receive assurances that the problem will be resolved, I’m both irritated and stressed – not a good start to the day!
I spend a little time researching holiday destinations online. My mother gave me £1,000 for my birthday this year, to put towards a holiday for my wife and I. I also told my wife (last April, when I was in hospital for my DBS operation) that I would take her away somewhere special if I survived the operation, so I really need to make good on that promise. I look at various options, but I’m still no closer to deciding where to go – more work required, must try harder!
I receive a phone call from the television production company that is making the health program for Channel 4 (for which they are filming me) – they want to come and film me tomorrow rather than in a week’s time, would that be okay? It’s fine with me, so tomorrow afternoon it is! I think my wife will have a nervous breakdown when I tell her – she’ll spend the next 24 hours trying to turn our partially renovated little cottage into something out of “Homes & Gardens“, so I decide not to tell her immediately, and do a little tidying/de-cluttering before she returns home this evening.
I wake up with tremor in my left leg once more. I’m fairly sure that it is due to fatigue (I’m feeling shattered in spite of a good night of sleep), but I reach for my device controller to increase stimulation on my left side. Unfortunately I find that I’m already receiving the maximum voltage allowed, so that puts an end to that thought!
I take things very easy today, sitting on the sofa in our lounge with my iPad, replying to a few social media messages and sending replies to a couple of emails that have been lurking in my inbox since the end of last week.
The weather has definitely taken a turn for the worse, and the afternoon brings dark clouds, thunder and lightning and a torrential downpour.
I take the dog for her afternoon walk when the rain abates a little, and combine this with a visit to our allotment. I harvest three courgettes that are trying to be marrows, and set off back home. Its at this point that I realise how absolutely knackered I truly am. Its only about 200 metres from the allotment to our house, but I am staggering like a drunkard before I’m halfway there, and I’m on the verge of collapse by the time I’m through the front door. I put the courgettes/marrows in the conservatory, dry the dog off and retire to the sofa (again). I think I’m going to be aching tomorrow!
Bright sunshine at 7am gives way to cloud by 9am. The weather forecast is for cloud and rain, so we have some breakfast and a cup of tea/coffee and head off back up the River Ant to our mooring at Wayford Bridge. We moor the boat on the river bank and transfer all of our paraphernalia to my wife’s car.
Before we go home we pay a visit to my mother (who has advanced Parkinson’s) in Stalham. She’s having a good day, and I can almost hear what she’s saying to me (from time to time). It’s while we are attempting to hold a conversation that I realise that my voice is much stronger than it has been for a long time, and it’s not so much of an effort to get words out. Perhaps it’s down to the fact that I changed my device settings yesterday? I always associate an increase in stimulation with a decrease in tremor and dystonia, but with deterioration of my other symptoms, so I had been expecting my voice to get worse, if anything. I make a mental note to discuss this with the DBS programmer when I go to the NHNN on the 21st.
We return to Southrepps via Lidl in North Walsham for urgently needed supplies (milk and beer).
We awaken to a beautiful sunny morning – a good day for cleaning the outside of the boat.
My brother arrives at Barton Turf in his boat and decides to help me and my wife clean our boat – a very welcome gesture! I empty out the gas locker, which is in one hell of a state, throwing away much of the contents and cleaning the remainder. My wife scrubs at the decks and cleans the windows, and my brother cleans the hull. A couple of hours later the boat is scarcely recognisable. She’s still looking a bit on the tatty side, but I knew that she needed a lick of paint. At least she’s now clean and tatty…
We take a rest and have a beer. My tremor is still strong in my left side, so I increase the voltage on the left side of my neurostimulator by 0.1 volts (now 2.8 volts on the left and 2.4 volts on the right). My tremor is instantly under control and doesn’t bother me again for the rest of the day.
We decide to stay on the boat again tonight, and end up drinking cider with my brother and reminiscing about our misspent childhoods until far too late.
I’m awake at 3.45am. And 5am. And 6.30am. I manage to get back to sleep each time, until eventually I get up at around 8.30am.
My wife makes the tea/coffee, feeds the dog and takes her for a walk around the boatyard, while I try to find out why the engine isn’t charging the batteries. After much grubbing around an oily engine, we discover that the alternator isn’t up to the job of charging 3 batteries, as well as running the fridge – I turn the fridge off for the time being, and normal battery charging service is resumed.
We head off downstream at a very leisurely pace, crossing Barton Broad and ending up at Gay’s Staithe (no, it’s not a Norfolk cruising location – well, actually I suppose it is, just not that kind) where we moor up for a couple of hours while I attempt to repair one of the bedroom drawers and my wife gets on with the task of cleaning a year’s worth of neglect from the outside of the boat. We then motor back across Barton Broad to Barton Turf where we meet up with my wife’s youngest son, his fiancee and our youngest grandchild.
My symptoms should be at their least bothersome while we are out on the boat – away from the stress of everyday life. My tremor is really getting to be a problem on my left side, so if it’s no better tomorrow then I shall risk increased dyskinesia and turn the stimulation on my device up by a couple of notches. Other than that, my voice is still weak, but a little stronger today than it has been of late, my balance is a little wonky and my walking is on the wooden side, muscular stiffness and weakness are not troubling me, and neither is fatigue. Mood and motivation are reasonably okay.
When our visitors have departed, we cook a ready meal and settle down to listen to an audio book whilst I try replacing (successfully) an ancient fluorescent light fitting in the main cabin with a modern LED fitting.
We are spending a few days on the boat, starting today, so I publish my vlog first thing this morning, and post links to Facebook, Twitter and Instagram, as well as a number of Parkinson’s Disease forums.
We have a visit from my wife’s youngest son’s fiancee and our youngest granddaughter, which is very nice.
The weather isn’t quite as good as was forecast, but we decide to go to the boat in any case – it’ll be a change of scene if nothing else.
My tremor is really quite strong on my left side today, so I bite the bullet and email the DBS team at the NHNN for an appointment for a tune-up – so, I’m off to hospital on the 21st for a little adjustment.
We get to the boat before dusk (via Lidl in North Walsham, for a couple of ready meals and some bottles of beer) make up the bed (well, my wife does), crack open a couple of bottles of Bishop’s Finger and just chill out for the evening
I’m definitely going to research, write a script and then film and edit my weekly vlog today. Yesterday was a failed attempt due to excessive consumption of a rather potent CBD oil. Today I will put up with the tremor and muscular pain, and concentrate on projecting my voice and trying to enunciate clearly.
My wife is working from home again today, trying to bring the accounts up to date for her soft furnishings business, which is a major distraction for me – I’m used to there being just me (and the dog) at home during the week.
I choose a cannabis related subject for my vlog, and spend several hours doing my research. I have a script that I’m (reasonably) happy with by mid-afternoon, so I set about converting the lounge into a studio – setting up the camera and tripod, the stand for my iPad (with the teleprompter app on it), moving some stuff out of camera shot, getting the lighting right. I take the dog for her afternoon walk before I start filming – she’ll only get restless otherwise – and then send my wife out for a run so that the dog and I can have the house to ourselves.
By the time my wife returns (red in the face and very sweaty) I have finished the filming (without too many retakes) and am loading the raw footage onto my MacBook for editing.
I edit the video pretty quickly, given that tremor is not helping, and by the time dinner is on the table, I’m uploading it to my YouTube channel.
Time for a beer (perhaps two), and the final episode of Episodes on Netflix.
My wife is babysitting our eldest granddaughter in Hevingham today, and I’m staying in Southrepps for the day to progress with this week’s vlog. We want to spend a few days on our boat, and (currently) the weather forecast for Friday (my usual day for writing/filming/editing my vlog) isn’t looking too bad.
I had a Twitter message from another television production company this morning, wanting to know if I would be interested in taking part in a program that they are making for Channel 4 about health, to talk about my medicinal use of cannabis. So, it looks like the downstairs of our little cottage is going to be invaded by a camera crew for the second time this year.
I received a package in the post this morning. It was a box containing five 5ml syringes filled with CBD oil. I was emailed few days ago by a company called British Cancer Vaccines – they are a UK charity performing a trial of CBD oil (0.3% THC,12% CBD, full plant extract) on a group of cancer patients. The chap that emailed me wanted to know if it would be any good for Parkinson’s (because his mother has PD) and offered to send me some free samples to evaluate. While I was examining one of the syringes, I managed to dispense some of the oil by mistake. Rather than waste it, I took a dose of the oil. The dosage that they are giving the cancer patients is 2 grams per day, but I somehow managed to take 3 grams. Let’s just say that I was in an extremely relaxed state for the rest of the day, and I didn’t make any progress with my vlog. Apparently they wanted me to start off with taking 0.5 gram and increase dosage to 1 gram if required – I shall certainly be a little more conservative with my measures next time!
Today my wife and I are going to Stalham so that she can measure up for replacement seat covers on a boat, so that she can provide a quotation. While we are over that way we are going to take the new marine battery (that I purchased last week) to our boat at Wayford Bridge, and also pop in to see my mum – three birds, one stone!
My wife busies herself with a tape measure while I sit and chat to the boat owner. 20 minutes later we are finished – tape measure and fabric samples back in the car, and we are on our way to Wayford Bridge. I carry the new battery onto our boat and connect it up, then I leave my wife cleaning and tidying (she has a nasty Summer cold that she doesn’t want to pass on) while I drive the couple of miles back to Stalham to visit my mum and younger brother. Mum has advanced Parkinson’s and recently had a short spell in hospital for reasons not yet determined (so officially logged as a “Parkinson’s related incident”). She is looking quite well today, but we have the usual communication problems – her voice is scarcely more than a whisper, and I’m a little hard of hearing, so there are cries of “pardon?” and “say that again” from me, and looks of exasperation from my mother. I feel that my voice is weak and husky, but my brother thinks I sound fine, so perhaps it is just my perception that my voice is weak… I must say that it sounds quite indistinct to me at times, and I do find it an effort to speak at a volume that people can hear. Hopefully that will be changed when I have my next DBS tune-up at the NHNN. Other than my voice, my symptoms seem well controlled today – all of them still present and correct, but nothing that is unbearable!
I’m not as tired as I thought I would be, following our late night last night. My mood is reasonably good as well, and I feel able to do stuff today.
My wife is working from home again today, bringing the accounts for her soft furnishings business up to date, so I spend the day helping the effort, and by the end of the day we have completed the figures for last year, and have made a start on this year.
My tremor is fairly well under control today, which is always a bonus when I’m working on the computer. My voice is still a bit pants, though. Dystonia and dyskinesia seem to have crawled back under their respective stones, and aren’t bothering me too much.
I take the dog for her afternoon walk (my wife took her this morning), and then we call it a day, work-wise.
Dinner (fish – easy for me to chew, and I only bite the inside of my mouth a few times) and then a couple of episodes of Episodes on Netflix before catching a (relatively) early night.