Author: Ian

The day is spent cleaning and tidying the house in preparation for a visit from my wife’s younger brother and his new girlfriend tomorrow.   I’m still feeling very low on energy, so my contribution is fairly limited.  My wife is almost a blur as she races around trying to do everything at once – I sit on the sofa in the lounge, trying to summon up the energy to get off my backside and help.  Eventually, I empty the woodburner (which is still full of ash from when it was last used), clean the windows in the doors and wash the outside of the stove, then I wash the hearth and seal it with a little WD40 – it looks pretty good, if I say so myself!

We do a bit of weeding in the back garden, and then take a drive out to Mundesley to meet up with my wife’s youngest son, his wife and our youngest granddaughter, who are going there to have one of the locally famous Mundesley burgers.

By the time we return home I’m flagging – my speech is awfully slurred at the moment, and my legs feel weak and inadequate for their intended purpose.  I feel that Parkinson’s has taken another step forward and progressed – perhaps as a result of my latest DBS adjustments (then again, perhaps not – perhaps Parkinson’s has just decided to give me another kick in the teeth…).

The last couple of days have caught up with me and I’m feeling tired, aching and unmotivated.  My wife has a busy day ahead of her (babysitting/working/having her hair done/shopping) so she leaves the house soon after we get up, leaving me vegetating on the sofa in the lounge.

I post some links to my latest vlog on Twitter and Instagram, and then respond to some comments and emails that have been waiting for me for several days. The dog gets her morning walk (albeit a little later than usual) and then I empty the dishwasher and tidy up the kitchen.

My wife returns in time to join me for the afternoon dog walk, and then we pay a visit to the allotment, where the weeds are growing like…. weeds!  We need to spend an hour or two sorting things out down there – tomorrow, if the weather holds out.

I’m not particularly keen to get out of bed this morning – I’m feeling tired from a long day yesterday.  We didn’t get back home until just after 11.30pm, and it was after midnight by the time we got to bed.  You’d have thought that getting off to sleep after such a busy day would have been a piece of cake, but my mind won’t shut up and I seem to be laying awake for ages.  I get up at 8.15am, just as my wife departs for work – it’s Friday, so it’s vlog day and that means that I have loads to do.

My wife is picking the dog up from her parents and bringing her home with her this evening, so I am excused dog walking duties today.  I have an appointment with the nurse at my doctor’s surgery this morning (to review the results of my recent lung function tests).  My lungs are working just fine, so I don’t have asthma – but I’m still wheezing on occasion and they don’t have any explanation for it, other than that it could be Parkinson’s related…

I notice that I have given myself a couple of nasty bites to the inside of my mouth since my neurologist adjusted my neurostimulator yesterday – I seemed to have been doing this much less, recently, so I do hope that the adjustment hasn’t started it off again.  My neurologist made the adjustments to the group “A” settings on my device, so the current settings (pun intended) are: 2.90 volts on the left side, and 2.45 volts on the right side.  She has also increased the window, which means that I can adjust the voltage upwards or downwards, should I find it necessary to do so.

I have an easy vlog to do this week – it’s about my trip to London yesterday – so scripting it is a breeze, and I get it filmed, edited, uploaded to my YouTube channel and published before my wife returns home from work.

I’m travelling to the NHNN in Queen Square, London today to see my neurologist.  I’m not completely clear on the purpose of the appointment, but I believe that they like to check on the progression of your Parkinson’s Disease, and review how your DBS is performing every 12 months – it’s a little over 2 years since I had my operation, so it’s about time, really.  I also want to talk to her about exenatide (a type-2 diabetes drug that was shown to halt the progression of Parkinson’s Disease in a recent clinical trial) and try to persuade her to write to my doctor, authorising him to prescribe it for me.

I take the dog over to my wife’s parent’s house while my wife disappears off to her workshop in Hevingham for a couple of hours (she has an order that is meant to be delivered on Friday, and she’s a little behind schedule with it), and then we toddle off to Gunton station to begin our train journey to London.

We arrive in plenty of time for my appointment, and are kept waiting for almost 45 minutes.  I kind of expected this appointment to be a thorough evaluation of my condition – expected my DBS to be switched off to expose my PD symptoms without the benefit of stimulation, expected my neurologist to assess my balance and gait, expected a discussion of current medication, expected some sort of testing of cognitive function.  Instead, I was treated to a very brief consultation (no more than 15 minutes) during which she adjusted my neurostimulator to eliminate some left sided tremor, and was about to wave me off with the promise of a further appointment in 6 months time, when I broached the subject of exenatide.   Her reaction was very positive, and she was more than happy to write to my doctor to suggest prescribing it to me, so all of the worrying about her possible reaction to my request (and all of the arguments that I had prepared in my head) had been completely unnecessary.  If it hadn’t been for this, I would have been extremely miffed about a round-trip of almost 8 hours for a 15 minute audience, but as it is, I’m over the moon.

I try to make an appointment for 6 months time, but the receptionist informs me that the closest appointment is in 9 months time…   I smile, and we laugh and joke about it – what else can you do?

We pay a quick visit to the Blues Bar in Soho (it’d be rude not to) where we guzzle a couple of beers before heading back to Liverpool Street Station to catch our train home.

I’m feeling the effects of all the activity yesterday, so it’s hardly surprising that I don’t achieve so much today – although I achieve significantly more than what has become the norm.  My day starts much like yesterday did – without a great deal of motivation.

My morning is pure routine until PopMaster finishes at a shade before 10.45am.  This is the time at which I start giving myself a hard time for not getting anything done.  So, I pay my water bill online and decide to check my phone and broadband account, and find they have added a late payment charge because I was late in paying my bill last month.  I’m a bit miffed about this because they didn’t actually send me a bill, and I was only aware that it was overdue because they sent me an email saying that my payment was overdue.  I spend the next hour trying to get through to customer services through the most frustrating voice recognition automated phone line, which basically could not understand a word that I said!  Eventually I get through to a human being and get the late payment charge removed before my blood pressure goes through the roof.

I receive a delivery of Calor gas, which should last us through until the summer is over, and then take the dog for her afternoon walk.  I persuade myself to wander down to the allotment again (2 days in a row – woohoo!) and harvest some spinach (for our daily nutriblast).  I cover over the newly planted spinach seeds to stop the birds from nicking it as soon as it sprouts, and water the broad bean plants, which are looking good.

I’m knackered when I get back home, and I have a long day tomorrow (I have an appointment with my neurologist at the NHNN), so I have a quick tidy up in the kitchen before my wife gets home, and then sit on the sofa to get my breath back.

I start the day slowly, not feeling particularly motivated, but manage to surprise myself (and my wife) by achieving loads this afternoon.

The morning is spent in a very leisurely fashion – tea, nutriblast, dog walk, PopMaster, The Metro online…  I’m actually feeling frustrated with my lack of “get up and go”, so I start thinking about jobs that need to be done.  The big water stain on the front of our cottage has faded considerably following the application of some brick acid a month or so ago, but another application is required, so I lever myself off the sofa, manage to find where my wife has hidden the brick acid, go outside and apply it to what remains of the stain.

I walk the dog for the second time today, and then wander down to the allotment, which is in need of some attention.  I mow the grass paths, hoe and weed a couple of the beds and then harvest some rhubarb to take back home with me for stewing.

Finally, I vacuum downstairs before my wife gets home from work.  I’m feeling quite pleased with myself, even though I’m aching all over and I know that I’ve overdone it.

I’m feeling exhausted (again) following a late night last night (I didn’t get to sleep until after 2am).  I’m determined to do more than I did last week, though, so I consult my “To Do” list (which seems to get longer by the day, with very few items crossed off it last week).   After drinking my tea and nutriblast, walking the dog and listening to PopMaster, I tackle some of the easier clerical-type tasks.

I research Velux window blinds for one of my wife’s customers – I fail to find the information required, so email Velux customer services to see if they can assist me.

I order some more Calor gas (we are using our last cylinder at the moment).

I reschedule an appointment with my physiotherapist – I was due to see her tomorrow, but she called this morning to cancel my appointment due to illness.

I email my speech therapist to update her on my eating problems, and to ask her to add me to their LSVT trial.

I email the holiday company that we are going to Barbados with later this year, to request transfers between the airport and the hotel, and also to request special assistance at the airport.

I email the hotel in Barbados to request a certain room that I know my wife will particularly like (I have stayed there before, almost 10 years ago – my wife hasn’t).

Items are crossed off my “To Do” list with a vengeance!

The dog gets another walk, and then I vacuum downstairs before my wife arrives home from work.

We have had a very busy Sunday.  Our eldest granddaughter stayed with us last night, and treated us to a lie-in this morning, not waking up until almost 9.30am!  After some breakfast we take the dog for her morning walk, and my wife takes our granddaughter into the children’s playground by the village hall for 10 or 15 minutes – something that’s repeated when her parents come to collect her at lunchtime.

When the miniature whirlwind has departed, we have a quick tidy up to restore some semblance of order, and brace ourselves for our next visitors.  My wife’s youngest brother, wife, daughter and dog drop in, bringing my birthday card and present (more beer!) and some rather nice carrot cake.  We enjoy a good old chinwag, a communal dog walk and another visit to the children’s playground (for the benefit of my wife’s niece).

Our next visitors arrive late in the afternoon (my wife’s mum and dad), also bringing my birthday card and gift (you guessed it – more beer!).

This evening we go to Cromer Community Centre to see Wreckless Eric.   It is a bit of a mixed bag of a gig – some great new material, one or two oldies, and quite a lot of screaming guitar and feedback, which I didn’t particularly enjoy (I must be getting old!).

I’m awake early at 5.45am, and don’t really get back to sleep – my wife has had a restless night and is going to work (for an hour or so) this morning, so there didn’t seem to be much point.

I drink tea and nutriblast while my wife is at work, and them we take the dog for a walk together, and also wander down to the allotment to check up on things – everything is growing like crazy, especially the weeds and the grass paths.  We really need to spend a couple of hours down there to keep on top of things, but we are having our eldest granddaughter over to spend the night tonight, so we don’t have the time to spare today – tomorrow, perhaps…

We clean, tidy and childproof the house (as much as is practical) and then drive over to Hevingham to collect our granddaughter. On our return to Southrepps, we all walk down (dog included) to the children’s playground by the village hall to expend some of our granddaughter’s seemingly boundless energy.  My wife runs around after her while I stay with the dog, but by the time we return to the house it’s me that is exhausted.

My wife manages to get our granddaughter off to sleep early, so we don’t watch any telly this evening for fear of disturbing her – we have an early night as well.

I manage to achieve much more on a Friday than any other day of the week.  I think it is due to the fact that I have publicly committed to publishing my weekly vlog every Friday, and because I have said that that’s what I will do, then that’s what I do!  I think I need to find a few more things to commit to on a daily basis to motivate me the rest of the week (although I do have a commitment to walk the dog twice a day, and I never miss that – unless my wife beats me to it).

I spend a large portion of today researching GDNF because one of my YouTube channel followers requested it as a topic for my weekly vlog – it seemed like an interesting subject, so I chose it.

I’m not happy with my voice (yet again) and I struggle so much with filming some of the script that I break it down into smaller segments.  In spite of these problems, I have filmed, edited and uploaded my video to my YouTube channel before my wife arrives home from work.  Result!

It’s groundhog day, at least it feels that way at the moment.  I come to write my daily blog, and I could (almost) cut and paste yesterday’s entry, or the day before.  I feel that I’m stuck in a rut and can’t see any way out of it at the moment – I need to give myself an almighty kick up the backside, but I really can’t be bothered (and therein lies the problem).

Mugs of tea.  Nutriblast.  Dog walk.  PopMaster.  Regular readers of my blog must be bored to tears with my daily routine.  Imagine how I feel?!

I eventually lever myself off the sofa, set up some lighting and camera tripod and start filming a review of the grounding mat that my wife bought me for my birthday.  Much more work is needed, but at least a start has been made.

I’m still feeling extremely tired at the moment, and find myself fighting sleep (again) this afternoon.  Ironically, the closer it gets to bedtime, the more awake I become.

I do very little today, sitting on the sofa in the lounge and reading the news on Twitter and The Metro online.  The dog provides my only incentive to exercise, and I take her for her two walks around the field by the village hall.

My wife bought me a grounding (or earthing) mat for my birthday (following on from my recent vlog about the health benefits of grounding) and it arrived in the post today – I’ll set it up tomorrow, and may even do a review video for my YouTube channel.

We have leftover chilli con carne for dinner this evening, followed by leftover birthday cake, followed by an early night!

It’s my 57th birthday today, and my wife’s youngest son, his wife and our two granddaughters have arranged to meet me at Stompers in North Walsham to have coffee and a cake whilst being entertained by the children scrambling around the soft play area.  So, I take the dog for an early walk and them drive over to North Walsham to meet them.  Coffee, cake and entertainment are provided in equal measures, and an hour or so is passed very enjoyably.

My wife arrives home early to prepare the house for guests this evening – she has prepared a chilli con carne and a vegetarian lasagne for dinner, and we are expecting my wife’s two sons, their partners, our two granddaughters, my wife’s ex-husband and his partner, and my wife’s younger brother to help us to eat it all.   We have a chaotic, crowded evening, and many of my birthday presents are bottles of beer, so it seems that everyone knows what I like!

Everyone departs by 10pm and my wife clears up the devastation while I sit and drink (another) birthday beer.

I slept well last night, so why am I still feeling so washed out?  I have no energy whatsoever, so I’m taking it easy (again) today, but I’m swiftly getting bored of sitting around doing nothing – I feel that I have no purpose.

I walk the dog a couple of times, make some kefir to put in my green smoothie (nutriblast), and run the vacuum around downstairs – that’s the full extent of my activity today…

I am fighting off sleep (again) this afternoon, so another early night is on the cards.

Two very busy days, coupled with not getting as much sleep as I would have liked, means that I’m even more knackered today than I was yesterday (and that’s saying something).  Apart from accompanying my wife on a shopping trip to Lidl (and Sainsbury’s) in North Walsham, vacuuming the lounge and walking the dog this afternoon, I have done nothing of any value.   My wife has been busy cleaning and tidying the house whilst I have been sat on my backside on the sofa in the lounge, trying to remain awake.

I’m determined to have an early night, but the later in the day it gets, the more awake I become – typical!  We sit and watch a bit of telly after our evening meal, and then we have a relatively early night.

I’m absolutely shattered today.  We didn’t get to bed last night until after 1am, and I’m awake before 7am.

It is our youngest granddaughter’s first birthday party today, so my wife spends the morning wrapping birthday presents while I post links to my latest vlog on Facebook, Twitter and Instagram.   We take the dog for her morning walk, and wander down to the allotment to pick some spinach (for us) and rhubarb (to give to others), and then we pack the car with presents (and the dog) and head over to Hevingham for the party.

The weather isn’t great barbecue weather, but the company is good, and we have a very pleasant afternoon and evening with family and friends, although I’m flagging and fighting to stay awake by the time we make a move back to Southrepps.

I have a long and tiring day today – I’m travelling to Hither Green (just outside London) to attend the funeral of an old friend of mine.  I’m travelling alone (for once) because it is our youngest granddaughter’s first birthday, and my wife simply can’t bear to miss out on it.

I leave the house just before 8.30am to catch the train into Norwich from Gunton, eventually arriving at the house of some friends in Hither Green a shade before 1pm.  I cadge a lift to the crematorium, and the sad business of saying goodbye begins.  The service goes smoothly, is well attended, and over within half an hour.  We adjourn to a local pub to raise a glass or two to our departed friend, and then a few of us go for a curry at a restaurant close to the railway station, finishing our meal just in time for me to catch my train back into London for my connection to Norwich.  I finally stumble through the front door of our cottage at 11.45pm – it’s going to take me a couple of days to recover, so I’ll be taking it even easier than usual this weekend.

I am doing my weekly vlog today (rather than tomorrow) because I am travelling to Hither Green to attend the funeral of an old friend of mine tomorrow.  I have already selected a topic (Does Parkinson’s Start In The Gut?) and failed to start researching it yesterday, so I have my work cut out this morning.  I drink my tea and nutriblast, walk the dog and listen to PopMaster before getting stuck in.  Its not a difficult subject to research (there’s loads of information available on the internet) and I’ve got a script that I’m happy with by about 2pm.  I film myself (with quite a number of retakes – my sore throat and cough have compounded the usual weak voice problem), have finished editing the video and am uploading it to my YouTube channel by the time my wife arrives home from work, so I’m reasonably pleased with myself.

My sciatic pain seems to be receding today, and I’m feeling a lot more comfortable – I just need to get rid of the sore throat and chesty cough and I’ll be right as rain!  As it is, I’m feeling like death warmed up, so I’m not going to be doing very much (again).

My eldest nephew calls round to see me this afternoon, and drags me (kicking and screaming) over to The Vernon Arms for a pint and a chat, which actually lifts my spirits and makes me feel much better.

I intended to do some research on my weekly vlog thus afternoon, to save me getting stressed tomorrow (I’m travelling to London for a friend’s funeral on Friday, so filming my vlog a day early), but I simply don’t get around to it – I guess I’ll be having a busy Thursday…

I’m really not in much of a better place (pain and mood-wise) than I was yesterday.  I still have a lot of sciatic pain in my hips and legs, and it’s getting me down.  My sore throat and bronchial cough are not responding to the medicinal dose of cherry schnapps that I administered just before bedtime last night, so that isn’t exactly cheering me up, either!

I tend to a few minor administrative tasks that are on my “To Do” list, and get them crossed off.  I then spend an hour or so replying to a number of messages that I have received on social media over the long weekend.

I prise myself out of my seat to take the dog for her exercise, but without a shred of enthusiasm.

It’s my wife’s youngest brother’s birthday today, so this evening we drive over to Spixworth to take him his present and card.  We return to Southrepps in time for me to self-medicate with cannabis, Hobgoblin beer and Dalwhinnie single malt before heading to bed.

It’s a Bank Holiday Monday, and a beautiful, warm, sunny day.  The two do not occur together very often in the UK.  Unfortunately, I’m not in any state to really appreciate it – I’m in a significant amount of pain today, as well as feeling exhausted from my allotment mowing of yesterday.  I also have a nasty bronchial cough, which doesn’t help.  I seem to have provoked my sciatica (probably by crouching down a fair bit when I was working on the allotment) and I have pain in my lower back, my hips, buttocks, and down the backs of my legs to the top of my feet – suffice to say that I’m not feeling like doing anything at all today.  My wife wants to get on with cleaning the outside of the conservatory, and getting the back garden sorted out, so she’s beavering away outside while I’m sitting on the sofa inside, feeling extremely guilty for leaving her to do all the work.

I force myself to take the dog for her two walks, and muster the energy to vacuum downstairs, but that’s about it!

Another fabulous day in Southrepps – blazing sunshine, clear blue skies and a temperature in the mid-20s Celsius.  Our babysitting duties passed without incident – our youngest granddaughter is an absolute angel, and we hardly knew that we had her.  We take her back to her parents in Hevingham a little before lunchtime, and return to Southrepps for an afternoon at the allotment.

My wife prepares the ground for planting out onion sets and courgette (zucchini) seedlings while I get the mower running and mow the grass pathways that are getting very overgrown.  The mowing exhausts me, so I sit on the ground and try to clear grass and weeds from the strawberry and raspberry plants that are struggling to be seen at the moment.  I leave my wife to it, while I return home for a rest and to take the dog for a walk (which really finishes me off).

I’m still feeling out of sorts, and have had a mild headache for most of the day – not severe enough to warrant the use of painkillers, but enough to make me want to crawl into a quiet corner somewhere.

We have a visitor coming -we are having our youngest granddaughter to stay tonight, so this morning my wife spends time cleaning, tidying and “child proofing” our cottage – I do help out (a little) by vacuuming downstairs and constructing the fireguard (not that we have any intention of lighting the fire, but it will prevent our granddaughter from falling onto the slate hearth and doing herself a mischief).

We drive over to Hevingham just after lunchtime to collect her (and all of the accompanying paraphernalia), and then return to Southrepps (via North Walsham for shopping purposes).

I’m feeling fatigued and out of sorts, as if I’m coming down with something – I woke up with such a splitting headache that I took some paracetamol before I’d even had a cup of tea, so I must be feeling rough!  It’s just as well that our youngest granddaughter is a very laid-back and contented child – I don’t think I could cope with one that screams and cries just at the moment.

I have an appointment at my doctor’s surgery this morning, to have some “lung function” tests – I have been wheezing (on occasion) since my deep brain stimulation operation 2 years ago.  Its not something that I am unduly concerned about, but I know that my wife worries about it.  The nurse has me breathe and blow into a machine a dozen times or so, expresses surprise at my readings (which are almost off the scale) and tells me that my “lung age” is 39, which is pretty impressive for an old geezer like me (57 years old this month).  My wife is suitably relieved!  I’m still wheezing, though, and we don’t know why – they have given me a “peak flow meter” to take home and use for the next three weeks to see if there is any pattern to my wheezing episodes.

I return to Southrepps, and get cracking on my other commitment for the day – my weekly vlog.  I pick up where left off yesterday and finish researching and scripting my chosen subject (MRI-guided focused ultrasound for Parkinson’s Disease).  I have a few problems filming myself – my voice is weak and slurred in spite of my device being set to use group “A” settings, the ones that I usually use when filming because my voice is less affected.  On the plus side, my eating problems (biting the inside of my mouth when chewing) seem to have improved since I switched over from group “B” settings, so perhaps the settings of my DBS are a factor…  I’ll certainly mention it to the DBS nurse when I go to the NHNN for a tune-up later this month.

I’m feeling a bit on the low side this morning.  I didn’t sleep very well, but I don’t think that that’s the reason.  I plan to research and script my weekly vlog today (I have an appointment at the doctor’s tomorrow morning, which is when I would normally do it), but firstly I need to select a subject – and I’m having difficulty deciding.  I finally choose a subject and spend a couple of hours researching it, and then I change my mind and select a different subject, but my heart’s not really in it.  By the time my wife arrives home (wanting to go grocery shopping) I have written about 30 seconds worth of script, and I like my videos to be about 5 minutes long – I’m going to have my work cut out tomorrow!

My wife and I drive to Lidl in North Walsham, do the necessary grocery shopping and return to Southrepps for our dinner (yes, you guessed it! Soup and soggy croutons).  My wife thinks that I’m being quiet, and I can’t help but agree.  Hopefully, tomorrow will be a better day.

I’m feeling very tired this morning, in spite of having had a good night’s sleep, and I feel very unenthusiastic about getting up off my backside and doing anything.  I sit on the sofa with my iPad, responding to a couple of emails and several social media messages while I drink my tea and nutriblast, and then take the dog for her morning walk before PopMaster starts.

My new next door neighbour disturbs my sloth by knocking at the front door to ask me if I know anything about television aerials because he can’t get his telly to work.  I grab my tools and wander around to next door to take a look, seriously doubting that I would be able to sort it out for him, but prepared to take a quick look nonetheless.   It turns out that he has recently had all of the sockets, switches and television points replaced by an electrician – an electrician who didn’t know how to wire up a television point!  I correct the wiring for him, and leave him happily watching daytime TV.

I return to being a couch potato, and catch up on what’s happening in the world by reading The Metro online.  I manage to stir myself and take the dog for another walk (in between heavy rain showers) and then tidy the kitchen, load the dishwasher and vacuum downstairs before my wife gets home from work.

I concentrate on authoring a wedding DVD for my wife’s youngest son and his wife – their wedding was almost 6 months ago now, and I really want to finish the task and get it crossed off my list of things to do.  I actually manage to finish it mid-afternoon, and take a leisurely stroll down to the allotment with the dog, who waits patiently while I hoe between the rows of seedlings that my wife planted out a couple of weeks ago, and cover them to protect them from the birds.  It only takes me about 15 minutes, but it tires me out, and my feet are starting to drag as we return home.

My wife and I go over to Hevingham this evening so that we can deliver the completed DVD – the happy couple are delighted with the result, and I feel pleased at a job well done.

Yet another day of lousy weather – it’s cold, wet and windy out there today, and even the dog doesn’t want to spend much time on her walks.

I book train tickets for my visit to the NHNN at the end of May, and also to Hither Green in a couple of weeks time for the funeral of a good friend of mine who passed away recently.  The rest of the day is spent working on my wife’s youngest son’s wedding video, which I’m determined to finish in time to present it to him and his wife when we all get together to celebrate the first birthday of our youngest granddaughter on the 12th of May.  I manage to finish all of the editing which just leaves me the authoring of a DVD, which (hopefully) I can do tomorrow.  I’m feeling quite pleased with myself, especially since I’m still having some difficulty using a trackpad due to tremor (a consequence of a recent change to my device settings).   My voice, although still far from perfect, is definitely better on these revised settings, also.

I spend the day finishing off my task of yesterday – sorting through boxes of my junk, shredding and burning paperwork that I have kept and which is no longer relevant, throwing away items that are no longer used, trying to reduce the clutter.  I still struggle with throwing away things that are no longer required, but are still perfectly usable – it just seems wrong (but I’m getting there).

Any plans to go to the allotment are ditched – it has been raining steadily all day and gives no sign of letting up.

It’s cold and wet here in Norfolk today, so we decide to go to Longwater to buy ingredients for a birthday cake and also to buy birthday presents for our youngest granddaughter, who will be 1 year old on the 11th of May.

The only problem with going shopping on a wet Saturday is that everyone else is doing the same thing – the shops are crowded and claustrophobic, and it isn’t very long before we’ve both had enough.  Luckily we only reached that point after we had bought what we needed to buy!

We return to Southrepps, where my wife decides that we need to sort out some boxes of my junk that have been sitting on the landing upstairs for far too long.  Our lounge is transformed from being relatively tidy into a mess (of my making), which I still haven’t sorted out by the time we call it a day and go to bed.

I’m struggling a bit today.  Tremor is breaking through on both sides because I have changed my device settings to try to moderate my problem with biting the inside of my mouth when chewing.  Its not that the tremor is breaking through in a big way, because it’s not, but it’s breaking through enough to make it difficult for me to make the small, precise movements demanded when I’m editing my weekly vlog.  The editing takes me significantly longer than it usually does (although, on the upside, my voice is a little better on these settings and I don’t need to have quite so many retakes when I’m filming myself) and I only just complete the task by the time my wife arrives home.

I upload the video to my YouTube channel and post links to it on social media while my wife prepares dinner.

I’m still managing to bite myself when I chew my food, although I don’t feel it is quite bad as before I changed my device settings – difficult to assess at the moment, because once you have a sore or swollen area in the mouth it is much more likely that your teeth will catch it again…

Another day spent editing, but this time I’m having a little more difficulty.  I decided to change my device over to use group “A” settings because I have recently increased the voltage on my group “B” settings, and since I did that I have noticed that my tendency to bite the inside of my mouth has become much worse so I’m going to see if different settings will make a difference – the only issue with the group “A” settings is that they allow more tremor to break through, and this makes using a mouse or trackpad much more difficult.

I take a little break from the computer around lunchtime, and assist my new neighbour to cut some fence posts down to size with my chainsaw – variety is the spice of life!

I’m unsure if I’m experiencing the placebo effect, but I seem to be biting myself a little less frequently, although it is difficult to gauge – once your mouth is lacerated and swollen, you tend to catch it with your teeth time and time again, so I’ll stick with group “A” settings for the time being and see how things pan out.

I am determined to make some progress with my wife’s youngest son’s wedding video that I have been editing, so as soon as I’ve taken the dog for a walk and listened to PopMaster I set my MacBook up on the dining table and spend the rest of the day working on it.  By the time my wife arrives home from work I have completed the ceremony part, just the reception party to do now!

I have been having trouble eating for quite some time now – I keep biting the inside of my mouth when chewing, leaving me with an extremely sore mouth.  I initially suspected some dodgy dental work, but my dentist checked my bite and couldn’t find any reason for it.  My next thought was that it was due to Parkinson’s Disease and my muscles just not working the way they used to, so I got a referral to a speech therapist to see if they could help me.  The therapist gave me some exercises to do to try to strengthen the muscles in my mouth and lips, but just lately the problem is getting worse – it occurs to me that it has been getting worse since I turned the voltage up on my neurostimulator, so maybe it’s a DBS problem…

A promising day (weather-wise) ends up being miserable, grey and extremely wet.   The sun is trying to break through when I take the dog for a walk this morning, and the day feels bright and Spring-like.  By lunchtime it’s raining heavily, and it continues all afternoon and into the evening – the dog and I are both saturated when we return home after a (brief) walk this afternoon.

I promised to email our local Parkinson’s UK adviser (following our telephone conversation yesterday afternoon) with details of the equipment and services for people with Parkinson’s that had talked about, so I spend most of the day detailing and costing and composing the email, making sure that there’s all of the relevant information so that she won’t be coming back to me to ask questions.  Eventually I’m ready to send it, and I copy in the Parkinson’s nurse – I did quote her in the email, so it seemed only right to do so.  It would be great if they agreed to fund anything that we had discussed, but I’m not holding my breath!

I try to progress with editing my wife’s youngest son’s wedding video, and I do make some progress, but not as much as I would have liked.

Voice is still pretty bad, but everything else is tolerable.  My wife got me to switch off my DBS to see if it really was the cause of my weak voice, and the difference was immediately apparent to both of us, so at least it should be something that can (perhaps) be improved upon when I go back to the hospital for an adjustment at the end of next month.

I have an appointment with the Parkinson’s nurse this morning, so I head over to the cottage hospital in North Walsham after walking the dog and listening to PopMaster.  I don’t really have anything that I need to see the nurse about, but I feel it’s useful to maintain a link.  We chat about my recent referrals for speech therapy and physiotherapy, and I remark on the unavailability of services and equipment for people with Parkinson’s.  The nurse recommends that I contact the local office of Parkinson’s UK to ask about a grant, telling me that they are always saying that they have plenty of money available, and asking her for guidance on what they should spend it on. Well, I have a few ideas that would lighten their bank account by more than a few thousand pounds, so I agree to contact them this afternoon and see what they have to say.  I phone the local representative for Parkinson’s UK this afternoon, and she seemed very guarded in her response to my questions, and a whole lot less certain about the availability of grants for the provision of equipment and services than the Parkinson’s nurse, but she did say that she’d “look into it” if I sent her some information by email, so that’s exactly what I’ll do.  It’ll be interesting to see what the UK’s largest Parkinson’s charity can actually offer to people with Parkinson’s – I’m prepared to be disappointed because (in my view) it is run more as a lucrative business with a board of very well paid directors than as a charity whose sole purpose should be improving the lives of the people after whom it is named.  I’m more than happy to be proved wrong, though.

I’m paying the price for yesterday – I’m aching all over and don’t have a great deal of energy.  While my wife carries on with the gardening, I sit and post links to my weekly vlog on social media and then check out what’s happening in the world on Twitter (President Trump’s Twitter Feed is always good for a laugh).

My wife and I go to North Walsham to buy some flower seeds, get some bread, buy a new doormat for the front doorstep and take a couple of sacks of garden rubbish to the municipal tip – it’s while we are out and about that I am overcome with fatigue, and I find it so frustrating!

We return to Southrepps where my wife continues working in the garden, and I continue recuperating on the sofa in the lounge (although I do take the dog for her afternoon walk).

I’m in quite a lot of discomfort with my sore arm muscles, so I have a little bit of cannabis to take my mind off it (successfully).  Other than that, my voice is my only other troublesome symptom.

My wife has succeeded in motivating me today (in conjunction with our new next door neighbour)!  She got out of bed this morning, full of the joys of Spring, announcing that she wanted to “get stuff done”.  Our new next door neighbour then called round to say that he would clean out our gutters (we have grass growing out of our gutters) if I would hold the ladder for him – offers like that are few and far between so, of course, I agreed.

While my wife gets cracking with organising our front path and garden, I have a go at removing the limescale stain which adorns the front wall of our cottage – I tried to remove it last year using a pressure washer, but only succeeded in fading it slightly; this time I try using some brick acid, and this removes it completely, so I’m well pleased.  I put up a new house name and number sign that my wife purchased recently, then I help our next door neighbour cut his fence posts down to size (he’s erecting a new fence between our back gardens), by which time I’m absolutely knackered.

My wife and I drive to Lidl in North Walsham to purchase some bags of bark chippings for the front garden, and then the day is done.

Symptom check: tremor, dystonia, dyskinesia – under control;  muscular pain – ouch; voice – rubbish; balance and walking – not great; mood and motivation – feeling good.

I have an appointment with the speech therapist at 10am this morning, so I’m out of bed, tea drunk, dog walked and in my car driving to Norwich by 8.50am.  No real progress was made with my eating problem (I keep biting the inside of my mouth when eating) but I am to continue with the lip and face stretching exercises that she emailed to me following my last appointment. She did mention putting me on the waiting list for an LSVT course, to which I agreed – the waiting list is about 12 months long, so I figured that if I’m not desperate for it right now, in 12 months time it’s quite possible that I will be!

I fill my car with fuel and return home to Southrepps.

I didn’t make a huge amount of progress researching and scripting my weekly vlog yesterday, so I get stuck straight in.  I have a fair amount of trouble filming myself because of my voice, even though I change my neurostimulator settings over to group “A” (poorer tremor control, but it doesn’t affect my voice so much) – one particular paragraph of script took 9 attempts before I was satisfied.   I manage to get the video edited, uploaded to my YouTube channel and published before my wife arrives home from work, which I consider to be an achievement.

We wander down to the allotment following dinner (soup again…) and my wife digs while I hoe until darkness is falling (and I’m knackered).

Beer, cannabis, a film on Netflix and a (reasonably) early night.

It’s the hottest day of the year (so far) and the thermometer in our cottage tells me that it’s 22 degrees Celsius – it feels like a Summer’s day, which is a welcome change after the freezing winds and snow of just a few weeks ago.

I started a couple of tasks on my “To Do” list yesterday which involved me researching prices for some mailing bags and also a travel insurance policy for our holiday later this year.  Finding the most competitive price for the mailing bags is relatively easy, so I buy them on eBay and cross the task off my list.  A travel insurance policy is a bit more involved because I have to declare my medical condition and then check through all of the fine print to ensure that the policy is actually worth having – I’m a bit of a sceptic where insurance is concerned, and I think that (by and large) it’s a scam, and the insurance companies have so many “get out” clauses to avoid having to pay out on claims…  Eventually, I settle on a policy, purchase it online and cross another task off my list.   I intended to make some more progress with editing my wife’s youngest son’s wedding video, but I have a doctor’s appointment this afternoon and a speech therapy appointment in Norwich tomorrow morning, so I decide to choose a subject for my weekly vlog and start researching and scripting it – if I leave it all until I return from Norwich tomorrow, I’ll be struggling to get it finished.

Another positive day – I don’t actually complete any of the tasks on my “To Do” list, but I do start editing my wife’s youngest son’s wedding video, which I’m feeling pretty good about – especially considering that I had to clear about 25Gb of video from my MacBook before I could make a start.  I also make a start on two other list items, so I should be able to cross both of them off tomorrow.

I deliver the safari holiday DVDs to my neighbour this morning, and he’s absolutely delighted with them, and I’m pleased that he’s happy – particularly when I find out that it’s his birthday today.   I manage to find a birthday card and a bottle of red wine to take over to him this evening, and he’s happy once more!  I sit and have a glass with them, but my voice is terrible and conversation is difficult so I cut it short and return home for my dinner.

I’m feeling a little less tired today – I had a decent night’s sleep last night, and I didn’t make the mistake of going back to sleep again once I woke, just before my wife’s alarm went off at 7.30am.

I read The Metro online while I drink my mugs of tea and my nutriblast, then take the dog for her morning walk, returning just in time for PopMaster.

I actually make some progress today – I study an online tutorial on using iDVD and manage to author two DVDs containing the videos of my neighbour’s safari holiday that I seem to have spent the best part of the last year editing, so that can be crossed off my list and I can deliver them tomorrow morning.

I attend a webinar on the use of medicinal cannabis to treat Parkinson’s Disease.  I had hoped to (perhaps) learn something new, or at least get confirmation of stuff that I already knew, but it was the usual mish-mash of anecdotal, unconfirmed testimony erring on the side of “no medicinal benefit” because of the lack of any serious double blind, placebo controlled studies – I was most disappointed!

I felt rested and motivated when I woke around 6am.  My mistake (I think) was going back to sleep and not getting up until almost 8.15am, at which time I felt fatigued and robbed of any inclination to start crossing items off my “To Do” list.

I’m ashamed to say that I spend the majority of the day sitting on my backside responding to several messages on social media and reading the news on The Metro online and Twitter – although I do manage (as usual) to take the dog for her walks this morning and this afternoon, and I also have a go on my motorised cycle.

My voice is shocking at the moment – slurred and indistinct – it’s just as well I don’t actually have to talk to anyone.  Tremor seems well under control, dystonia and dyskinesia are no worse (but no better) than usual.  Muscular stiffness and weakness aren’t troubling me.  My mood ain’t great, but I put that down to being irritated by my own inactivity.

We had a late night last night – we are babysitting for our youngest granddaughter, and she kept us up until almost 1.30am, so I don’t get out of bed until about 10am (my wife got up at 7.30am, when our granddaughter woke up for her breakfast).  My wife’s youngest son and his wife return home after lunchtime, and then my wife and I load our bags (and the dog) into the car and return to Southrepps.

I take the dog for a walk around the field by the village hall, and then we pay a visit to the allotment to see what’s been growing.  The spinach is looking healthy, as are the broad beans, rhubarb, blackberries and raspberries.  I hoe one of the beds (just to keep the weeds down) and then return home, leaving my wife to carry on with the real work.  I vacuum downstairs (to assuage my feelings of guilt) and then have a go on my motorised cycle (even though I’m not feeling very energetic).

My wife’s youngest son and his wife are going away for the night, so my wife and I are relocating to their house to be on babysitting duty for 24 hours.  We pack an overnight bag (I say “we”, but it’s actually my wife that does the packing) and load it, along with some bedding, a bag of food and the dog, into my car, and then head over to Hevingham.

We spend the afternoon entertaining (and being entertained by) both of our grandchildren, taking them down to the local playground to expend some energy – I’m fairly sure that our grandchildren expended some, too!

I decide upon a subject (postural instability in Parkinson’s Disease) for my weekly vlog, and set about researching it and writing a script as soon as I return from taking the dog for her morning walk.

I change my neurostimulator over to use group “A” settings (for a clearer voice) and then start filming myself.  I managed to knock over a scented oil air freshener while trying to film myself using the Nintendo Wii, and spend the best part of an hour cleaning it up – both the house and I smell absolutely delightful, but the air has been fairly blue!

I change my device back to use group “B” settings as soon as I’ve finished filming – group “B” offers better tremor control, which makes the task of editing the video less frustrating.

Editing is finished and I have uploaded my vlog to my YouTube channel and published it by the time my wife gets home from work.  We go to Lidl in North Walsham to do our weekly grocery shopping, before having dinner and sitting down in front of the telly for the evening.

I start the day with the thought of selecting a subject for this week’s vlog, doing some research and making a start on a script – just to take some of the pressure off for tomorrow, trying to make things a little easier for myself.   The day is now drawing to a close and I still haven’t decided on the subject – hey ho!

So what exactly have I been doing all day?  The answer to that question is “not a great deal”.  I drink my mugs of tea and my nutriblast while I read The Metro online, walk the dog, listen to PopMaster and then dig out the forms that I need to complete so that I can proceed with winding up my mother’s estate.   I fill them out as far as I am able, but now I need to make an appointment with a solicitor to have my signature witnessed, and my younger brother also needs to sign two of the forms – I guess I’ll have to take them over to his house in Stalham at some stage (next week, perhaps?).

I need to create a spreadsheet for my wife’s soft furnishings business to assist her in the production of estimates for potential customers – it is currently taking up far too much of her valuable time.  I spend the afternoon looking at websites that have curtain and blind estimators built in, and try to gain some sort of understanding of the process – I’m fairly sure I can write some code to calculate quantities and costs, I’m less sure about the actual estimating process.   I make copious notes and intend to go through the steps involved with my wife this evening.

Once more, my voice is the main symptom that is really bothering me – I sound like a drunkard when I’m talking to my neighbour (who I bump into when taking the dog for her second walk of the day).  My balance is distinctly “off” since I increased the left side voltage on my neurostimulator last week, and I feel as though I am staggering around and bouncing off the walls indoors – I’m continually catching myself to prevent a fall, which isn’t great (but at least I haven’t actually fallen!).  Outdoors, I’m just staggering around, which adds to the drunkard effect.  Hopefully the DBS nurse will be able to do something about voice and balance when I go back to the NHNN for an adjustment at the end of May.

There’s a glimmer (a faint glimmer, but a glimmer nonetheless) of motivation in the air today – I go through the stack of paperwork on the table next to me, and locate the outstanding paperwork that I need to complete in order to wind up my mother’s estate.  Now all I have to do is to complete filling in the forms and get them posted off.  Unfortunately the glimmer of motivation doesn’t quite stretch to form filling, but at least it’s a start.

It’s World Parkinson’s Day, so I spend time reading posts about it on Facebook and Twitter and watch a number of videos on YouTube – I can’t make up my mind whether to be inspired or depressed about it all…

I have some more messages and emails awaiting my response, so I rattle off a couple of quick replies, because I’m feeling guilty that I haven’t replied yet.

I get a couple of ready meals out of the freezer for our dinner tonight (chilli con carne, so not too difficult for me to eat), walk the dog (twice), and that’s about as motivated as I get – hopefully a better day tomorrow!

Another day of minimal achievement.  I’m still struggling to motivate myself, so it’s a relief to get a knock on the door from my new neighbour who is looking for some help and advice on wiring in his new cooker hob in his kitchen and plumbing in his new sink.  I go next door, armed with a few tools, wire in his cooker hob and advise him on the plumbing bits he needs to buy to connect up his sink.

I adda couple of tasks to my “To Do” list (things that I need to do to sort out mum’s estate), respond to a couple of social media messages and (at long last) compose (and send) an email to Martha Orbach.  I also vacuum downstairs, cook myself half a dozen scotch pancakes for lunch, and light the woodburner (just as my wife arrives home from work).

Once more, my voice is my worst symptom today, and I find myself really struggling in conversation with my new neighbour and his son – I try turning down the left hand voltage on my neurostimulator which does improve clarity of speech, but also allows tremor to become a nuisance, so I turn it back up again.

Dinner (soup and soggy croutons) followed by beer, cannabis and an early night.

I’m totally without motivation today.  I thought that making myself a new “To Do” list yesterday would help me get started on the things that I really need to do, but I was wrong.  I respond to a load of social media messages that have been waiting several days for me to acknowledge, but I also needed to respond to an email that I received over the weekend (from Martha Orbach, the artist who watched my DBS operation) and I can’t get myself to do so.  I decided to finish making a DVD of my neighbour’s safari holiday (for my neighbours), so I set my MacBook up on the dining table ready to get to work on it… and then I didn’t do it.

On a more positive note, I have walked the dog twice today, and made myself some scotch pancakes as an afternoon snack (don’t ask me why, it’s just something that went through my head and I acted on it).  I also decided that it was chilly enough to warrant having a fire, so I split the last few remaining logs, grabbed a handful of kindling from the garden shed and light the woodburner.

My elder brother (who lives in Nova Scotia) put me under some pressure (unintentionally) when he messaged me to ask how I was doing with sorting out our mother’s estate – the short answer to that is that I’m not – I even neglected to put it on my “To Do” list (I’ll rectify that later).

Symptoms are all pretty much under control aside from my voice, which has been badly affected by my latest voltage change – communication is now officially a challenge!

I’m completely without focus or drive, and aching from doing 10 minutes of digging at our allotment yesterday.  My wife is champing at the bit this morning, eager to get back to the allotment and get some seeds planted, but it’s raining steadily.

I spend my time responding to a few emails that I have received, and making a new “To Do” list that (hopefully) I will be able to work my way through over the coming couple of weeks.

It stops raining just after lunchtime, and my wife is down at the allotment like a shot.  I feel guilty for leaving it all up to her, but I can’t do anything about it at the moment.  I take the dog for her afternoon walk, and drop in at the allotment to see how she’s getting on.

The only symptom that is really bothering me today is my voice, which keeps on disappearing.  Muscular aches and pains I have attributed to my exertions of yesterday, although that may not be strictly accurate.   Tremor, dystonia and dyskinesia are all fairly well under control.

I spend the morning posting links to my latest vlog on Facebook, Twitter and Instagram, and them my wife and I go to Lidl in North Walsham to do our weekly grocery shop.

This afternoon we go to the allotment – my wife spends all afternoon digging, but after I have been working for about 30 minutes I’m knackered and have to return home for a sit down.  I walk the dog and vacuum downstairs instead.

My voice is almost non-existent today, and I have a fair bit of muscular pain in my right arm.  Tremor is in my left leg, on and off.  A smidgen of cannabis helps.

My daughter is departing for York this morning, so I prepare a cooked breakfast of sausages and fried eggs, and then assist her in packing her things into her car and checking the engine oil before she leaves Southrepps just after 10am.

I walk the dog and listen to PopMaster before getting stuck into writing a script for this week’s vlog (about Parkinson’s Disease misdiagnosis).  My voice is very weak today, so I do the usual trick of switching my neurostimulator over to group “A” settings for the duration of the filming – I’m still unhappy with the way that I sound, but it’ll have to do.   I switch back to group “B” settings, but I’m still getting some tremor breaking through in my left leg, in spite of increasing the voltage yesterday – I think the increased voltage has also had a detrimental effect on my voice…

My daughter is staying with us for a day or two, so we plan on going out today.  First, though, I have to drive to Aylsham for a dental checkup, and then my daughter does some work on her dissertation (which she is due to submit in the next couple of weeks) while I respond to a few messages that I have received on social media.

After taking the dog for her morning walk, my daughter and I drive to Hevingham to pay a visit to my wife’s sons and our youngest granddaughter.

I am still being bothered by tremor in my left leg, so decide to increase the left side voltage on my neurostimulator (now at 2.6 volts on the left, 2.75 volts on the right).  Instantly the tremor is under control, but I am now at the maximum setting for the left side – I have an appointment at the NHNN next month, so I expect my device will be reprogrammed then.   My voice remains weak and husky – I hope that the increased voltage doesn’t cause any further deterioration.  Balance is a bit off, and my walking is fairly stilted at the moment.  Muscular pain is less of an issue than it has been of late.

We return to Southrepps for a very late lunch (sausage and onion sandwiches) and watch a movie on Netflix before my wife arrives home from work.

We are expecting a visit from my daughter, who is dropping in to see us for a day or two on her way back to York from Dorset (via Stevenage), so I try to get my routine tasks out of the way before she arrives.  Tea and Nutriblast drinking, dog walking and PopMaster listening are all accomplished by the time she knocks on the front door at about 10.45am.

At lunch time I take her over to The Vernon Arms for a drink and a bite to eat, and then we both take the dog for her afternoon stroll around the field by the village hall.

I’m still not feeling very energetic or motivated, so I decline when my daughter asks me if I’d like to join her in going for a run around the village – even if I felt motivated to do so, I sincerely doubt my ability to make it as far as the end of the road!  I opt to spend a little while using my mini motorised cycle instead – better than not doing anything at all!  I also vacuum downstairs while she’s out running.

I’m very conscious of the fact that I have a fair bit of tremor breaking through in my left leg, and my speech is slurred and indistinct when my daughter and I are chatting but she doesn’t mention it, so it can’t be all that bad – just my perception.

My wife arrives home at a reasonable hour (for a change) and we select a movie to watch on Netflix after we have eaten dinner.

I am feeling very tired and completely lacking in energy of late – I just don’t seem to be able to motivate myself to accomplish anything.  I have some more paperwork to fill out so that my brothers and I can finish distributing our mother’s estate, but I keep putting it off.  I seem to be in firefighting mode – only doing stuff when it becomes absolutely critical that I do so.

I drink my tea and Nutriblast, walk the dog, listen to PopMaster and then pay my credit card bill online (payment is due today, so this is a critical task, which causes me a large amount of stress when I forget my online banking details and manage to lock myself out of my account!).  I respond to some messages and comments on social media, and catch up on what’s happening in the world by reading The Metro online.

I have a go on my mini motorised cycle, but I definitely need to mount it on a board of some sort because it tends to move around while you are using it, which is a bit of a nuisance.

Tremor is starting to break through in my left arm as well as my left leg, and I’m considering making an adjustment to my neurostimulator if it doesn’t improve in the next day or so.  Muscular pain in my arms and shoulders is back with a vengeance this evening – a little bit of cannabis helps ease the discomfort.  My voice is weak and husky and strangling my sentences.

It’s typical bank holiday weather here in Norfolk – it was raining heavily when we woke up, and it has scarcely let up the whole day, which has put a stop to my wife’s plans to go for a run and then spend some time down at the allotment.

We decide to drive over to Worstead (via Lidl in North Walsham to get a couple of bottles of beer for this evening) to see my wife’s parents, and spend a couple of hours or so chatting to them and drinking tea.

When we get back home, my wife takes the dog for a quick walk (it’s still raining and the dog doesn’t really want to go) while I split a few logs, carry them inside and light the woodburner.

Left leg tremor is driving me nuts, so I self-medicate with a little cannabis.  Voice isn’t too bad today.  Balance and gait are not great, but I’m managing.  Muscular pain isn’t causing me any trouble.

We have an early dinner (soup and soggy croutons again!) and then settle down in front of the telly to watch a film before having an early night.

We have a houseful this evening – my wife is cooking a roast dinner for 10 people, who are due to descend upon us around 4.30pm, so today my wife is cooking and cleaning and generally preparing to entertain her sons, their partners, our grandchildren, and her ex-husband and his girlfriend.  I do a little vacuuming downstairs, move a few of my bits and pieces out of the way, construct the fire guard, eat chocolate (well, it is Easter Sunday), and try to keep out of the way.

We have a fabulous meal (all of it cooked to perfection by my wife), and are all greatly entertained by our granddaughters, who are becoming a right pair of little monkeys.

My tremor is being a bit of a nuisance (left leg) and my voice sounds very soft and high pitched this evening and I’m having trouble making myself understood.  Muscular pain isn’t too bad, and balance and gait are acceptable. By the time everybody leaves us in peace I’m feeling exhausted, and I really haven’t done very much at all!

I don’t actually do very much today – I’m feeling lazy!  I spend the morning replying to some messages and posting links to my weekly vlog on Facebook, Twitter and Instagram, and then my wife and I drive to North Walsham to buy some more groceries for dinner tomorrow (my wife’s two sons, their partners, our grandchildren plus my wife’s ex-husband and his girlfriend  are coming to dinner tomorrow evening – it’s going to be very crowded round at our house!).

I vacuum downstairs and then split a few logs (when the rain almost stops for a few minutes), fill the log basket and light the fire while my wife is busy in the kitchen making desserts for tomorrow.

I should have completed work on my weekly vlog yesterday, but didn’t…

 Today is spent editing – it’s much more complicated than my usual vlogs which are normally very straightforward, and it takes me almost the whole day to finish.

My wife leaves me to it and disappears off to Hevingham to do a little babysitting for our youngest granddaughter, then to Lidl in North Walsham to buy some ingredients for a sticky toffee pudding that she wants to make, and finally to the allotment to do some more digging.  By the time she turns home (muddy and wet, because it has started raining again) I’m uploading my video to my YouTube channel.

I publish my vlog, light the fire, take some cannabis (to calm my tremor and ease my muscular pain) and we settle down in front of the telly for the evening.

It’s Easter weekend starting tomorrow, so I am doing my weekly vlog today because my wife will be at home tomorrow.   I have decided to vlog about three Parkinson’s Regeneration Training workshop that I attended on Monday, so I start by downloading all of the video that I shot that day onto my MacBook.  There’s quite a lot of it, and it takes almost an hour and a half to copy it over from my video camera.  Much of the afternoon is taken up with reviewing the video to see which bits are worth using, and then writing a script around them.  I change my device settings to group “A” (for a clearer voice) and film myself (with many re-takes – I’m not sure if my voice is getting worse, or if I’m becoming more fussy!).   By the time my wife gets home from work I have only just started editing, so it looks like I’ll be working on this tomorrow in any case…

My muscles are aching this morning – probably as a result of a combination of the Parkinson’s Regeneration Training workshop and being cooped up in the car on Sunday afternoon and Monday evening for the journey to and from Kent.  It’s also raining here in Southrepps today, so the combination of aches and pains and the wet weather don’t exactly fire me with enthusiasm when the dog asks to go for a walk.  Nonetheless, we go for a walk – albeit a fairly brief one.

My new next door neighbour asks me for some help and advice – he’s renovating the house and wants to remove some wall lights from one of the bedrooms, and an electric heater and cast iron bath from the bathroom.  I take my electrical and plumbing tools with me, remove the wall lights and electric heater, help him to drain down his water system and tell him how to remove the bath (with a sledgehammer).

The dog and I have another (fairly brief) walk in the rain, and then I vacuum downstairs.  I don’t bother splitting logs today because the weather is fairly mild (if wet) and we are fast running out of firewood – the forecast is for snow at the weekend, so we will be grateful for a fire if the temperature plummets!

My wife lent her car to her eldest son’s fiancee for a couple of days while we were away, so this morning I drive her over to Hevingham so that she can go to work.  I’m feeling the effects of two busy days – I’m fatigued, my tremor is breaking through (left leg) quite strongly and dystonia in my right foot is most uncomfortable.  I’m not going to be doing a great deal today!

I read The Metro online when I get back to Southrepps, and then research courier prices for my wife (she needs to send a roll of fabric for her soft furnishings business).

Aside from that, I walk the dog, split a few logs and carry them indoors for this evening’s fire and have a quick go on my new mini motorised cycle, which seems to move around a little when you’re using it, so I think I need to construct something to keep it still (but definitely not today).

We are up, checked out of our hotel and on the way to Chatham (about 16 miles away) by about 8am.  We stop off at a local Asda supermarket to have some breakfast, and then arrive at the venue for the Parkinson’s Regeneration Training workshop in Chatham’s historic dockyard at about 9.50am.  It’s a full house of about 40 delegates (people with Parkinson’s and personal trainers wishing to learn how to help people with Parkinson’s) and Karl Sterling leads the workshop, educating the personal trainers and giving people with Parkinson’s some tools for dealing with the challenges of this condition and helping to improve quality of life.

The workshop ends at a little after 4pm, and my wife and I have a farewell drink in the bar with Karl, before heading back to Southrepps (collecting the dog on the way).

My wife and I are off to Kent this afternoon.  I am attending a Parkinson’s Regeneration Training workshop in Chatham tomorrow.  The workshop starts at 10am, so we decided to stay overnight in a nearby Travelodge so that were don’t have to get up too early to be there.  We take the dog over to Hevingham to stay with my wife’s youngest son and his wife, and then have a leisurely drive to the hotel.

Our friend Karl Sterling is over from America to run tomorrow’s workshop, and so we have arranged to meet at his hotel and have a bit of a chin wag and a few beers this evening.

I’ve had a busy day!  We have a new next door neighbour, and he is replacing the fence between our back gardens, so today he ripped out all of the rotten posts and panels -and, in doing so, made me feel motivated to get some stuff done, too.

My wife and I went out to North Walsham to get some basic groceries from Lidl and some vegetable seeds for our allotment from the local garden centre.  When we return to Southrepps my wife decides to clean her car, so while she’s doing that I break up some of the old fence panels in the back garden to use for kindling, fill the kindling basket that sits on the hearth next to the woodburner, split half a dozen logs for this evening and vacuum downstairs.

Our new neighbour has given us a composting bin that he found in his garden, so I balance it on top of my wife’s pink wheelbarrow and we head off to the allotment with it.   I dig and hoe a couple of beds while my wife plans out what we are going to plant in which bed.  Hopefully we will be able to keep a little more on top of things this year – last year was a bit of a disaster and we had extremely low yields (we spent more on seeds than it would have cost to buy the vegetables, several times over) and it was so disheartening to see the weeds taking over the beds.

By the time we return home, I’m exhausted and any thoughts I had been harbouring of having a go on my new motorised exercise cycle have now gone out of the window.  I light the fire and my wife prepares the soup…

It’s Friday, it’s vlog day and I’m having difficulty in choosing a subject.  I start researching Parkinson’s Disease sub-types, but soon realise that I’m going to need more than just a morning to research it.  I come across an article about a new diagnostic test for PD and so decide to talk about diagnosis of Parkinson’s Disease.

I drink my tea and nutriblast, walk the dog, listen to PopMaster and then get stuck into researching and scripting my video.  I switch my neurostimulator over to group “A” settings while I film myself (for a clearer voice) but still am unhappy with how I sound – I have a lot of retakes (again) today.

I really want to spend an hour trying out my new electric exercise cycle (and another hour putting some wax on my nice clean car), but the day passes in a blur and before I know it my wife has arrived home (just as I’m uploading my weekly vlog to my YouTube channel).

My wife prepares our dinner (soup and soggy croutons again – I’m still having problems with chewing) while I quickly split a couple of logs and light the fire.

I have an appointment with the Parkinson’s nurse at North Walsham Cottage Hospital at 9am, so I hurriedly slosh down my mugs of tea (my nutriblast will have to wait until I return) and leave the house to drive to the hospital at 8.40am.  I arrive two minutes ahead of my appointment and am getting a little annoyed when I’m still sitting in the waiting room ten minutes later.  It turns out that the Parkinson’s nurse has made a couple of errors – she had booked my appointment at a different hospital at a different time, so I wasted my time this morning.  I cancel the appointment – I’ll send her a snotty email about it at some point.

A modicum of motivation appears to have surfaced, and I decide to wash the car (it’s absolutely covered in mud from driving down country lanes).   I wash and dry the car – it really needs a wax, but I don’t want to overdo things so I’ll hopefully do that over the next day or two.

My mini motorised cycle has arrived today, and I decide to do a product review video on it, so I set up the camera and tripod and film myself unpacking and assembling it.  I’ll film myself actually using the device once I’ve had time to familiarise myself with it.

I split a few logs, fill the log basket, vacuum downstairs and light the fire – I’m feeling much better about myself today!

One of my neighbours is having a fund raiser for the local church, so I feel obliged to go (even though I can think of far more deserving causes).  Doors open at 12pm for bowls of homemade soup, so I turn up at 12.30pm – there’s nothing worse than being the first to arrive!  It’s a very well attended event, and there are about 40 people crammed into my neighbour’s house – I end up sitting at a table with several familiar faces (people who’s faces I know from seeing them down at the allotments), and get chatting to a young couple with a 6 month old baby from a neighbouring village.  All in all, a very pleasant couple of hours was spent, and I got to know some new faces and put names to several others that I was familiar with but whose names I didn’t know.  I did notice that my tremor was breaking through significantly on both sides whilst I was there, probably because I felt a little uncomfortable being amongst so many people that I didn’t know.  Dyskinesia was very noticeable (to me) and I was terrified that I was going to flick a spoonful of soup over the tablecloth en-route to my mouth – luckily I managed to keep control and it didn’t happen.  My voice was reasonably good, though, so I didn’t have to keep repeating myself.

The dog is very pleased to see me when I return home – she’s used to me being there and really doesn’t like me to go out and leave her alone.  I take her for her afternoon stroll, and then light the fire (the first day for a long time that I haven’t had to split any logs – we didn’t burn them all last night) and vacuum downstairs before my wife returns from work.

I’m distinctly lacking motivation at the moment.  I have paperwork that needs to be sorted out, some of which will be of financial benefit to me, but I can’t seem to make myself sort it out.  I know there’s a problem when I can’t get myself to do things that I’d actually like to do – I know that sounds a little odd, but it’s the only way I can think of to describe the feeling.  At the end of another day when I haven’t achieved anything, I feel guilt and anger with myself , and this stresses me out and makes me anxious.   It isn’t that I actually do nothing (I still manage to walk the dog twice a day, split some logs for the fire and carry them indoors, vacuum downstairs and light the fire), I just can’t seem to achieve anything over and above these routine tasks.

I have a few online tasks lined up for today, which is just as well, really – although the sun is shining brightly this morning, it’s still damned cold out there!  I promised the physiotherapist that I would email her some links to information about forced exercise, so I spend a little time digging around on the internet, and then send her three or four of the best.  I need to buy a new blade unit for our nutribullet because the current one is as blunt as a very blunt thing, so I locate the best possible deal, and place an order online.  I email a couple of online vendors over sub-standard goods (some dog poop bags with holes in, and an engraved slate house sign that wasn’t correctly finished) and receive satisfactory responses from both.  I shop around for a travel insurance policy for when my wife and I go away later this year – such an unbelievable variation in prices and cover for one simple holiday; more evaluation required before I part with any cash!

I brave the cold weather for the usual dog walks and log splitting tasks, vacuum downstairs, clean out the woodburner and light the fire.

My voice is slightly better than it has been, but it’s still a bit of a struggle to make myself heard and understood.  Tremor is breaking through in my left leg, but it’s tolerable.  Muscular pain in my right arm has me reaching for the cannabis this evening.

We had a disturbed night last night – our youngest granddaughter (who stayed with us overnight) had a bit of an upset tummy last night, and is also full of cold. I have to say that my wife’s sleep was more disturbed than mine, because she dealt with the fallout!

My wife’s daughter-in-law came over to Southrepps and collected her daughter this afternoon, and my wife and I decide to go over to The Vernon Arms for a little while – there is live music in the bar this afternoon, and Sunday afternoons are usually pretty quiet in the pub.  Today it is absolutely packed with nowhere to sit – we have one quick drink and return home.

We sit in front of the fire, watch some telly and then get an early night (remembering to have a little cannabis before retiring).

After the higher temperatures of the last few days, it’s a bit of a shock to wake up to a dusting of snow, and it continues snowing (on and off) all day. There’s a strong, bitterly cold wind blowing as well, making the dog walks a little more brief than usual.  I stay in the house as much as possible, but make an exception when I split a few logs and fill the log basket for the fire.  We are babysitting our youngest granddaughter overnight tonight, so I light the fire a little earlier than usual, construct the fireguard and install the stairgate while my wife drives over to Hevingham to collect her.

My voice is still weak and strangling my sentences, but at least it doesn’t keep packing up on me like it was yesterday evening.  Tremor is breaking through quite strongly in my left leg, and dystonia in my right foot is a bit of a nuisance, too.  My balance is a little out of kilter as well – I’m catching myself from falling quite a lot today.  My walking is definitely stilted.

Another day of writing scripts, this time it’s for my weekly vlog.  I have decided to talk about forced exercise for Parkinson’s, since that is a subject that is in the front of my mind at the moment.   I manage to find lots of information about it online, but most of it is in quite technical language and I like to make my videos to be informative yet accessible.  I spend a lot of time extracting the essence of the studies, and trying to put them into my own words (which isn’t always as easy as it sounds).

I change my neurostimulator over to group “A” settings because I feel that my voice is slightly better on those settings, but I still sound hoarse and indistinct (to my ears) and I have loads of re-takes when I’m trying to video myself.  I feel that if it weren’t for the fact that I put subtitles on all of my videos, then I would struggle to understand what I’m saying (or perhaps that’s because my hearing is also not what it once was?).

By the time my wife arrives home from work, I’m ready to upload the completed video to my YouTube channel, and my voice has deteriorated even further – to the point where I am trying to talk to my wife, and nothing comes out.  I try changing my device back to group “B” settings, but I think that fatigue is the culprit today (I didn’t sleep well last night).  I didn’t have any cannabis yesterday, and that’s the price I paid…

I am being interviewed for the Doctor Frank website this afternoon. I received a message on Twitter a few days ago asking me if I would be prepared to do it, and I agreed (subject to the provision of the interview questions in advance).  I received a list of questions yesterday afternoon, so today I spend virtually the complete day scripting my responses to these questions – I have to script my responses these days because mild cognitive impairment means that my flow of words stops when I’m under pressure, and being interviewed definitely puts me under pressure.

I takes a few short breaks to walk the dog (twice) and to split some logs and carry them indoors, but the rest of the time is spent scripting on my iPad.  Before I know it, it’s 5.30pm and Doctor Frank’s video producer is calling me on Skype. The interview goes well with only three interruptions – one phone call from person unknown (they rang off before I could get to answer it), one dog demanding to be let in from the back garden, and one phone call from my wife to ask how the interview went…

I make the lounge look like a lounge again by removing the lighting gear and tripods, vacuum downstairs, light the fire and put the dinner on (soup and soggy croutons again).

I have an appointment with the physiotherapist today, and I’m hopeful that they will be able to help me address the muscular weakness in my legs, which had been giving me much caused for concern in recent months.  I had read about forced exercise (using a powered cycle) as therapy to strengthen leg muscles, and when I mentioned this to my Parkinson’s nurse she told me that the physiotherapy department had the necessary equipment, and that she would refer me for a course of treatment.  I arrived at the North Walsham Cottage Hospital in plenty of time, was greeted by one of the physiotherapists and shown into an office, where she questioned me about my Parkinson’s symptoms and made me demonstrate various muscle movements.  After she had finished making notes, I mentioned forced exercise.  She looked at me blankly and told me she wasn’t sure what I meant, so I explained about powered cycles and how they were being utilised (to great benefit) to build leg muscle and improve motor symptoms in people with Parkinson’s.   She told me that they did have some powered cycles, but she wasn’t sure that they would be suitable for the application that I had described, so I promised to email her some links to more information on the internet so that she could read some more on the subject – I find it slightly disturbing that a physiotherapist (and a Parkinson’s nurse) are completely unaware of this treatment, given that they are dealing with people with Parkinson’s all the time (particularly the Parkinson’s nurse).

I’m still feeling a little below par, and still not really doing very much.  I need to return the blood pressure monitor to my doctor’s surgery today – my readings over the last 7 days have all been consistently abnormally high, but not officially classified as high, so it’ll be interesting to hear what my doctor has to say on the matter.  I drive over to Aldborough as soon as the essentials are out of the way (mugs of tea, nutriblast, dog walk and PopMaster) and drop the little machine off – I expect they will be in contact if they need to be…

I split a few logs (enough to top up the log basket) for this evening, vacuum downstairs and then light the fire.  Muscular pain in my right arm has me reaching for my vaporiser to administer a little cannabis.  Tremor is a little better than yesterday, as is dystonia.  Balance is okay, but my walking isn’t going to win me any prizes for elegance.

I’m feeling a little “down in the dumps” today – don’t know why, but maybe it’s to do with the sadness I felt yesterday about not having a mum to spoil on Mothering Sunday.

I really can’t be bothered to do anything apart from the usual chores, so I occupy myself by walking the dog, splitting a few logs and filling the log basket for this evening, preparing an invoice for one of my wife’s customers, and walking the dog again.

I receive a phone call from the production company that filmed me last year for a Channel 4 health programme (about medicinal cannabis), just letting me know that the programme will probably be aired in May now.  To tell you the truth, it’s been so long since the film crew visited that I’d pretty much forgotten about it.  Still, hopefully it will come at a convenient time, publicity-wise, because Paul Flynn’s Elizabeth Brice Bill will (hopefully) get a second reading in the House of Commons just a few weeks afterwards.

I’m getting quite a lot of tremor breaking through on my left side (mainly my leg), so I decide to switch my neurostimulator over to group “A” settings to see if that will help.  It is an improvement, so I stick with those settings until evening, when my wife mentions that I don’t seem myself.  I switch back to group “B” settings even though I’m not convinced that this is the reason for me not seeming to be myself.

Mothering Sunday, and it’s the first time in my 56 years that I don’t have my mum.  It feels strange not to be giving her a card, some flowers, chocolates…   After lunch we drive over to Worstead (via Lidl in North Walsham for some flowers, general groceries and a couple of beers) to wish my wife’s mother a happy mother’s day, and then we go to Hevingham so that my wife can see her sons (and partners, and grandchildren) so that they can wish her a happy mother’s day, too.  We are both treated to a superb roast dinner, and don’t get back home until after 9pm.

Tremor persists in my left leg, and I’m still uncomfortable with muscular tension in my arms and across my shoulders, so I have some cannabis and a beer before going to bed – much better!

My wife is off to Hevingham this morning – she has to return our eldest granddaughter to her parents, and then she is going to go to work.  I’m going to be lounging around at home, as usual.  I remove the fireguard from around the woodburner and dismantle the stairgate at the bottom of the stairs – hastily installed yesterday evening when my wife called to say that our eldest granddaughter was coming to stay for the night.   After walking the dog, I take a break and sit down on the sofa to post some links to my latest vlog on Facebook, Twitter and Instagram, and read The Metro online.  Then I clean the kitchen, load the dishwasher, tidy the lounge, split a few logs, fill the log basket and vacuum downstairs.

I turned my neurostimulator off this afternoon.  I wanted to see what it would be like without my DBS; see how much my Parkinson’s has progressed since I last turned it off – I think the last time I turned it off was when I made my second tremor control video in April 2017.  It didn’t stay off for very long today (maybe a minute) – my tremor is much stronger than I remember it, much stronger in my head and neck, and I was very glad to switch the power back on again.  It seems churlish, after that, to complain about (or even mention) the tremor that is breaking through in my left leg – it’s tolerable!  Muscular tension in my arms and across my shoulders is pretty uncomfortable, as is dystonia in my right foot, so I self-medicate with some cannabis, which makes it less of an issue.

I have a 10am appointment with the speech therapist in Norwich this morning, so I’m out of bed at 7.30 and take the dog for an early walk. I slosh down a couple of mugs of tea and leave the house at just before 8.45 to drive to Norwich.

I have been waiting for this appointment with great anticipation, hoping that they will be able to suggest ways of overcoming my eating problems (the muscles in my face and mouth are becoming less effective at doing their jobs, and I keep biting the inside of my mouth and my tongue – very painful!), so I’m very disappointed when the therapist tells me that she doesn’t have any answers.  She says that she will email me the instructions for some exercises that I can try, but its possible that these exercises will cause my problems to worsen – terrific!

I return to Southrepps for a frustrating afternoon of filming myself for my vlog – my voice is weak today, and I keep getting the cadence and rhythm of sentences wrong; twice as many re-takes as usual!

I finish editing my video, upload it to my YouTube channel and publish it by the time my wife arrives home from work with our eldest granddaughter in tow – she is staying with us tonight because her mummy isn’t feeling very well this evening!

I’m feeling fairly unmotivated at the moment, so another grey and wet day doesn’t do much for my state of mind.  At least it isn’t raining when I take the dog for her morning walk.

I need to research and script my weekly vlog today, because I have a speech therapy appointment in Norwich tomorrow morning, so that will be half the day written off.  I’m not really motivated to do that, either, and so I spend most of the day doing other “stuff” – splitting logs and filling the log basket, cleaning the windows of the woodburner, reading The Metro online, walking the dog (again) and lighting the fire.

I eventually start research and scripting at around 2pm, and I have just about finished the script at 8.15pm when my wife phones to let me know she’s on her way home from work.  I prepare our meal (soup and soggy croutons again) – she’s not had a great day, and it’s the least I can do…

It’s another grey and wet day in Southrepps, which is the perfect excuse for staying indoors and doing very little – not that I need an excuse…  I do have some admin tasks to get out of the way, so I make a start on filling out some forms connected with my mother’s estate (that I was supposed to have done yesterday).  I get bogged down with the complexity of the forms, and I really need to involve my two brothers, so I file the partially completed forms away for another day (possibly tomorrow).

I receive a phone call from the speech therapist that the Parkinson’s nurse referred me to – she has an appointment for me this Friday morning at 10am in Norwich, which will mean an early start (and also interferes with my weekly vlog; not complaining, just saying!).  I’m relieved that I have an appointment at last, and hope they can help me with my eating problems – I do enjoy soup, but I’d like to get back to eating “normal” food without also biting my cheek, or lip, or tongue.

It stops raining long enough for the dog to take me for an afternoon walk, and then I light the fire and scan some documents in to my MacBook that my wife wanted me to scan in.  A quick vacuuming of downstairs, and then I can relax with a little cannabis (to calm my left leg tremor, which is breaking through quite strongly, and lessen the muscular pain in my right arm).

I receive a phone call from Aldborough Surgery telling me that they have a blood pressure monitor for me to collect -my blood pressure was slightly high when they took it recently, and they want me to take readings at home, twice a day for the next week.  So, after walking the dog I drive over to Aldborough and collect the machine.  I note that (on my first attempt) my blood pressure is higher than it should be, but not officially classified as abnormally high – hopefully I can log some more “normal” readings over the coming week, otherwise (no doubt) they will want to prescribe something to tackle it.

My wife is expecting a representative from one of the companies that she orders fabric from (for her soft furnishings business) to visit us late this afternoon, so I make sure that the house is clean and tidy, dog walked, wellies and dog walking paraphernalia stashed out of sight, etc.  The representative arrives just before 5pm, and it’s after 7pm by the time she departs.

Symptom check – balance and walking are reasonably okay; voice is weak and strangling my sentences; tremor in my left leg is intermittent, but not too much of a problem; muscular weakness in my legs is still causing me to struggle standing up; muscular weakness and stiffness in my right arm is definitely improved (pain-wise) by a little cannabis.

Dinner, beer, a little (more) cannabis and an early night.

I receive more paperwork to fill out for my mother’s estate in the post this morning – I have a read through it to see what I need to do, have a telephone conversation with my younger brother (in which I promise to deal with it by the end of tomorrow) and file it away until tomorrow.

At least the weather is clear and dry today, and the temperature is positively spring-like (10 degrees Celsius) – a very pleasant change from the last week or so.  I take the dog for a quick walk after I’ve finished my tea and nutriblast, and before PopMaster, and then catch up on the latest news by reading The Metro online. I split a few logs and bring them in for a fire later on, although it’s really not cold enough to justify it – I just like having the fire lit!

I’m starting to get quite concerned about muscular weakness in my legs – I squatted down to clean up after the dog this morning, and had a hell of a struggle to stand up again, and this afternoon I’m struggling to stand up from a sitting position on the sofa.  This was precisely the reason that I asked the Parkinson’s nurse to refer me for some physiotherapy, which I still haven’t heard about – I’ll have to start giving her a hard time about it if I haven’t heard anything by the time of my next appointment (in a couple of weeks time).  I have also been suffering with Restless Legs Syndrome for the last couple of weeks when I go to bed.  Only in my left leg, but it is very annoying and, I feel, further evidence of disease progression that is going on behind the scenes.

I haven’t had any cannabis during the day today, and muscular pain in my right arm is definitely more of an issue – I decide to self-medicate this evening when I’m also having a beer.

Another lazy day (for me), another day at work (for my wife).  It’s much warmer in Southrepps today – the snow has now mostly melted, leaving great puddles of melt water.  It started to rain (quite heavily) just after lunchtime, and has been raining steadily all afternoon, so I’m glad that I got the logs in for tonight’s fire before it started.   Apart from walking the dog, that’s about all that I have done today – I feel guilty that I haven’t achieved anything at all.  I had intended to burn my neighbour’s safari holiday videos to DVD, but I haven’t finished reading up on how to use the iDVD software yet, so I didn’t make any progress with that.

I lit the fire mid-afternoon, and sat in front of it with my iPad while I surfed around various Parkinson’s websites and groups, filling time.

Another dusting of snow overnight, but it is just a dusting!  It’s certainly not going to stop my wife from going to work today, so we’re out of bed early (for a Saturday) and she has left for Hevingham by 9am.  I don’t feel like doing very much or going very far, even though the high winds are gone and it doesn’t feel so bitterly cold outside – it is still cold and horrible out there.  I drink my mugs of tea and my nutriblast while I check social media and reply to a couple of messages that I have received, and then the dog and I go for a little stumble (in the snow, ice and slush) around the field by the village hall.  While I’m still dressed for the cold, I fill the log basket with sufficient firewood to keep us warm this evening.  I then clean the windows of the woodburner, run the vacuum cleaner around downstairs, and light the fire.

My voice is stronger this morning, and I don’t sound like I’m half-cut (not to my ears, anyway).   Annoying (but tolerable) tremor is in my left leg.   I self-medicated with some cannabis this morning, and I feel that that has helped with the pain of muscular stiffness and weakness.  My balance is only slightly off and my walking isn’t quite so stilted as it has been.   Perhaps I have been under-medicated – I’ll monitor these symptoms in relation to my cannabis use…

It’s still below freezing and fairly windy in Southrepps, but at least there hasn’t been any further snowfall.  My wife decides to go to work, hoping that the main roads will have been cleared by now.

I brave the bitter cold to take the dog for a short walk, and to bring in some logs from the back garden for this evening’s fire.

It’s time for my weekly vlog, so I select a subject and start researching and scripting.  My voice is playing me up again today, and I have many, many re-takes during filming before I’m satisfied (and I still think my voice is slurred and indistinct).  I upload my video to YouTube, and post links to Facebook, Twitter and Instagram, as will as to a number of online forums, before my wife arrives home (late) just before 8.30pm.

No additional snow last night, but freezing temperatures and high winds mean that the local roads are extremely hazardous – icy and covered in drifting snow.  My wife leaves the house to drive to her workshop in Hevingham, but 10 minutes later she has returned – apparently the main road is closed at Aylsham.  She spends the day cleaning and tidying instead of making the curtains that she really wants to be doing.

I really don’t like this weather, so my aim is to stay in the house as much as possible, preferably close to the fire.  I do venture out a couple of times to walk the dog (with my wife), and again to fetch a basketful of logs from the back garden.  I light the fire at 11.30am – the earliest that I have lit it this winter, but then this is the coldest that it has been this winter.

I read The Metro online, and then spend the afternoon researching subjects for this week’s vlog.

My voice is still much stronger than it has been for weeks, although it gets progressively weaker as the day wears on.  Tremor isn’t bothering me at all.  Muscular weakness and stiffness in my right arm is most uncomfortable.  My walking and balance are both pants today, although they have both been fairly rubbish for quite a while.

More snow overnight, and this time it’s a serious quantity – about 4 inches of the white stuff is cloaking my car.  My wife is insistent that she is going to drive to Hevingham to go to work, so I go outside and scrape the snow and ice from her car’s windows.   My car is looking quite vulnerable outside our house – the roads here haven’t been gritted so they are extremely slippery, it wouldn’t take much for someone turning into our street to slide straight into my car.  I scrape my car’s windows as well, and move my car to the safety of the village hall car park.

I take the dog (who is very excited about the snow) for her morning walk, collecting our neighbour’s dog along the way – our neighbour had a shoulder operation yesterday and really needs to take it easy for a few days.

I catch up on the news by reading The Metro online whilst I drink my tea and nutriblast, and then get a few logs in from the back garden and light the fire (I’m feeling the cold – it’s -5 degrees Celsius today, and us Brits aren’t used to it!).

I vacuum downstairs and then take our dog (and our neighbour’s dog) for another walk.  My wife arrives home early (for a change) because the weather is worsening and it its snowing heavily again.  I prepare dinner (for a change) while she busies herself with some pending admin tasks for her soft furnishings business.

My tremor remains at a tolerable level, my voice is stronger and more distinct.  The muscular pain in my right arm, which has been with me for long enough now to be considered a Parkinson’s symptom rather than a strained muscle (which is what I hoped it was, initially), is quite debilitating, and I have to concentrate hard when picking up things (especially food or drink) so that I don’t drop them.

Another fall of snow overnight has blanketed Southrepps.  Very pretty, but also very cold.  I’m glad that I managed to stack almost all of yesterday‘s log delivery (before it got dark) and get it covered.  What I didn’t stack yesterday is still in the wheelbarrow with a sack over it to keep it dry.  I bring a basketful into the house for this evening’s fire, when I get back from the morning dog walk.

I post off some more documents concerning my mother’s estate, and then start work on putting my neighbour’s safari holiday video onto a DVD for him – copying the completed video files from my network storage drive to my MacBook, and then scouring YouTube for a decent tutorial video to show me how to use the iDVD software that I have.   I don’t make a huge amount of progress, but at least I have made a start on the task.

I pop into my neighbour’s house for a cup of tea and a chinwag after I have taken the dog for her afternoon walk, and then light the fire as darkness falls (because the temperature is also falling).

My aching jaw is almost completely better now, only giving me discomfort when I’m eating, so that’s a major improvement.  Left leg tremor is very variable at the moment – varying from being almost totally under control, to being a flipping nuisance!  Voice is still weak and husky and strangling my sentences.

I feel as if I have achieved a great deal today. I walked the dog (after I drank my tea and nutriblast) and then went over to Stalham to see my younger brother.  I collected the necessary documents to enable me to progress with administering our mother’s estate, emailed identification documents to a solicitor who has been waiting for them for quite some time, sent forms to my mother’s Building Society so that they will release her savings, arranged for some shares to be transferred so that they can be administered as part of her estate, paid my Calor Gas bill and water bill online, cleaned out the woodburner, vacuumed downstairs, took the dog for her afternoon walk, received a delivery of logs (which I wheelbarrowed from the road into our rear garden, stacked against the rear wall and covered over with a tarpaulin), lit the fire and prepared dinner.  And now I’m knackered!

I had a call from the speech therapist that my Parkinson’s nurse referred me to – I think she wanted to assess the urgency of the referral, given that I got my Parkinson’s nurse to request it as a matter of urgency rather than as “routine”.  The therapist asked me few questions, agreed that I urgently require some help, and promised to call me back with an appointment within the next week.  Result!

My wife is off to work again this morning, so I text my brother to see if he is back home yet (I need to complete some paperwork with him concerning our mother’s estate).  He’s still away, so I guess I’ll try to get over to see him tomorrow morning instead.

It’s freezing cold outside, so I don’t hang around for long when I take the dog for her morning walk.  As soon as I finish my mugs of tea and my nutriblast I sit myself down at the dining table with my MacBook and get on with editing my neighbour’s safari holiday video.  I seem to have been editing the damned thing forever, so I’m really pleased that I have finished it today!  Now all I need to do is create a DVD with the edited videos, and that’s the job done – one day next week, perhaps.

I take the dog for her afternoon walk and then light the fire just before my wife returns from work.  Snow is falling as we make our way to bed tonight, so no doubt the county will be at a standstill tomorrow – we’re not used to snow in these parts!

My wife has decided to go to work today because she has got a lot of work on at the moment, so I plan to go over to Stalham to see my younger brother and fill out some forms concerning our mother’s estate.

I have couple of mugs of tea, drink my nutriblast and walk the dog before texting my brother to check that he is at home.  He isn’t, and won’t be there at all today, so that puts an end to my plans!

I get the last of the logs in from the back garden – we are babysitting in Hevingham this evening so we won’t bother to have a fire tonight, and there’s just enough firewood to enable us to have a fire on Sunday night.  We are due to have a delivery of logs on Monday afternoon and  we are forecast to have an even colder few days next week, so fingers crossed that they are delivered as promised.

I read The Metro online to catch up on the news, post some links to my latest vlog on Facebook, Twitter and Instagram, and then watch a documentary online about cannabis and the endocannabinoid system.

Left leg tremor has increased again, and my voice is weak and husky. If I increase the voltage on my neurostimulator to calm my tremor, then I stand a good chance of making my voice even worse, so I don’t make any changes and hope that things will improve tomorrow.

My wife arrives home from work, we have a very quick dinner (soup and soggy croutons, because my mouth is still sore) and then go over to Hevingham to look after our eldest granddaughter for the evening.

It’s the Patients At Parliament protest outside the House of Commons today, in support of Paul Flynn‘s Elizabeth Brice bill for legal access to medicinal cannabis, so that is what this week’s vlog is all about.  I would really like to be there with all of the other protesters, but my wife can’t afford to take the time off work (she’s incredibly busy at the moment) and we really can’t afford to spend almost £100 on train tickets to enable us to travel to Westminster from Norfolk.

I have almost finished editing the video, when I hear that the bill wasn’t given a second reading due to filibustering by a Labour MP.  I feel very disappointed, but I’m sure that disappointment is felt much more keenly by everybody attending the protest, let alone Labour MP Paul Flynn, who expressed his disgust at the time-wasting tactics of a member of his own party.   I really cannot understand why MPs are so afraid of cannabis.  Alcohol and tobacco are far more dangerous than cannabis will ever be.

I publish my vlog with a heavy heart.  The next attempt to have a second reading of the Elizabeth Brice bill is now July – fingers crossed that it doesn’t fall victim to similar tactics then!

My wife’s accountant pays me a visit this afternoon, to provided me with a formal statement of identification that I require to administer my mother’s estate.  I should gave arranged this months ago, but I have been dragging my feet.  Hopefully I can get together with my brother tomorrow and we can fill out the necessary paperwork and get it posted off.

I’ve been agonising over the subject of this week’s vlog.  I have three subjects in mind, but they are all quite complex and I don’t think I’ll be able to do them justice in a 5 or 6 minute video.  I have spent most of the day researching them online and still haven’t made a decision.

I have to go to Aldborough surgery again this afternoon.  When I saw the doctor on Tuesday he took my blood pressure, which was a little on the high side, so he wanted me to see the nurse today to have it taken again to see if it was just a one-off.  Although it wasn’t as high as it was on Tuesday, it was higher than they would like – they are going to provide me with a machine to take home with me so that I can take my own blood pressure at home (twice daily, for a week) to see if it is more normal when I’m in my own home.

I try to make some more progress with my neighbour’s safari holiday video, but my heart isn’t in it and I just end up feeling irritated by it – so I give it up for the moment.

Tremor is still in my left leg, but it’s not as bad as it was yesterday so I won’t make any DBS adjustments just now.  The ache in my jaw is also less painful than yesterday, which is good!

I spend much of today sitting on my backside surfing the ‘net, educating myself as much as possible about the clinical trials for exenatide, the type 2 diabetes drug that showed promise in arresting the progression of Parkinson’s Disease symptoms.  I want to know all of the pros and cons before I talk to my consultant about it and, hopefully, persuade her to tell my doctor that it could be “worth a try” (my doctor told me yesterday that he would be happy to prescribe it to me if my consultant were to write those words to him).

Of course the usual time was taken to take the dog for her two walks,  I caught up with the news by reading The Metro online while I drank my morning cuppas, and the world stops for PopMaster at 10.30am…  I also made time to split a few logs, fill the log basket and light the fire before my wife arrived home from work.

We go over to my wife’s parents house in Worstead this evening – it’s my wife’s mother’s birthday today, so we take her her card and present.

My jaw is still aching away, but today (for no particular reason that I can think of) the tremor in my left leg has been competing for attention.  Hopefully it will calm down again by tomorrow, otherwise I’ll be considering an adjustment to my neurostimulator.

I need to find a supplier of logs fairly urgently – we are going to run out of firewood by the weekend, sooner if the weather gets any colder.  We won’t freeze, of course, because we have central heating, but somehow having a fire lit makes you feel warmer just by looking at it.  I find an advert on Gumtree, send the bloke a message, and we will have a delivery of logs next Monday, which I’m very relieved about.  I split a few logs and bring them into the house for this evening’s blaze.

I have an appointment with my new doctor this afternoon.  I finally got around to filling out the application form to transfer from Mundesley surgery to Aldborough surgery, and todays appointment is just an opportunity for my doctor and I to introduce ourselves.  He seems genuinely interested in hearing about my experiences with Parkinson’s and deep brain stimulation, and doesn’t bat an eyelid when I tell him that the only medication I take for Parkinson’s is cannabis.  I also talk to him about the exenatide drug trial carried out recently, and asked him about prescribing it for me in light of my current rapid symptom progression.  He said that if I could get a letter from my consultant stating that “it might be worth a try” then he would be happy to prescribe it for me “off label“, which sounds a lot more promising than I had dared to hope for.  My next step, therefore, will be to approach my neurologist at the National Hospital for Neurology and Neurosurgery to see if she would be willing to write to my doctor…

I have an appointment with the Parkinson’s nurse at 9am this morning, so we are up, tea/coffee drunk and out of the house by 8.40am.  We arrive at North Walsham Hospital bang on time, and have a reasonably productive meeting with the nurse.  My wife and I convince her that my referral to speech and language therapists is more urgent than its current priority of “routine”, and she emails the department while we are there.  She also chases up the physiotherapy department (because she also referred me to them, and they haven’t been in touch yet).  We have yet another discussion about medicinal cannabis, and she does (to be fair) want to know more about it, in spite of spouting a bit of nonsense about how addictive it is.  I provide her with some comparisons with the legal recreational drugs that are available (alcohol and tobacco) and promise to email her some links to more information about medicinal cannabis.

We return to Southrepps.  My wife departs for work and I begin preparing an email or two to send to the Parkinson’s nurse, listing many of my vlogs and informational videos well as a couple of well known documentaries on YouTube.

I split a couple of logs for tonight’s fire, and try to order some more logs online.  I say “try”, because everyone seems to be ruining out of supplies of nice dry, seasoned wood.   My usual suppliers have no more wood, so I’ll have to locate another supplier or, failing that, start burning coal (which I really don’t want to do).

My jaw pain is still distracting me from my Parkinson’s symptoms, but the pain has receded to a dull ache now (rather like toothache).   I’m thinking about taking some painkillers, but I’ve managed without them so far, so it seems a bit silly to do so when it appears to be healing.  Beer and cannabis instead?  Absolutely!

We have a bit of a lie-in this morning (it is supposed to be a day of rest, after all) and don’t get up until almost 10am.

We take a trip into North Walsham to get a few bits and pieces (soup, vegetable seeds, beer, bread) and then spend a couple of hours down at the allotment, weeding the vegetable beds and getting them ready for growing some produce this year.  I manage about an hour’s worth of weeding, and then I’m pretty much exhausted.  I return home for a sit down while my wife plants out some broad bean seeds.

When I have recovered a little, I clean the windows in the wood burner, fill the log basket, light the fire and vacuum downstairs.

My wife is working today, so it’s just me and the dog again.  I take the dog for her morning walk and then sit on the sofa in the lounge with a nice hot mug of tea and my nutriblast to read The Metro online and catch up with the week’s news.

I manage to get off my backside this afternoon and give the bathroom a good clean, wash the quarry tiles in the hall, clean the hearth, split a few logs and fill the log basket, vacuum downstairs and (finally) light the fire.

My mouth is still sore from my tooth extraction and is still taking my mind off my Parkinson’s symptoms – I am eating on the other side of my mouth at the moment, and managing to catch the inside of my lower lip with my teeth on a very regular basis, so I’m not enjoying eating my food at all at the moment, in fact I may well stick to having soup for the next few days…