Some entries from the diary I keep when I can be bothered :
28/07/12
Took a fancy to keep a diary, probably 'cause it's easier than tidying up or studying. Washing-machine sprung a leak - damn - but at least it cleaned the kitchen floor.
No "off" period in afternoon - whee ! Also, could walk when I got up - first time in a fortnight. Didn't go "off" till after midnight. Stayed up till 4am - why?
Sunday 27/07/12 - Three hours sleep - ugh ! Washing-machine much worse, oh good, repair bills ! But kitchen floor nice and clean as leak has washed off all the food my shaky hands drop.
Monday 30.07/12 Just passed a side-road with the delightful name of "Tumbling Bay" - there's no bay, tumbling or otherwise.....
Bought a new sleeve for my laptop, 14 inches, forgot mine was a 15 inch - oops!
Sat 4th August 2012 Whee! Off to Sidmouth Folk Festival (can't afford it but came anyway). Five hours' driving - stopped at "Little Chef" to use their loo and found I'd squashed a traffic cone - think there's still bits stuck to the undercarriage - left briskly before anyone started to yell.
Sunday 5/08/12 Sitting in Sidmouth listening to great ceilidh music and
I WANT TO DANCE
I WANT TO DANCE
I WANT TO DANCE
I WANT TO DANCE
I WANT TO DANCE
Fuck Parkinson's....
Tuesday 7/08/12 tried busking - one snicker, one sniff from stray dog, no money. Then bunch of Morris dancers started up a few yards away and drowned me out.
Saturday 11/08/12 End of holiday - more depressing due to police closing A30 (so they got home quicker \?) - had to take major detour to get home - 6 1.2 hours.
Monday 20/08/12 Woke up, found I could walk normally (yippee), so dashed down hall, drew living-room curtains, made coffee in kitchen, back to bedroom, into bathroom - and froze !
Thursday 23/08/12 My morning to volunteer at the IT centre in \Engelfield Green - very frustrated as morning pills just would not take effect - getting downstairs in stiff mode is exhausting as left leg has to be forced every inch.
September 2012 Passed a builder's yard offering "distressed railway sleepers" for sale. They didn't look upset to me, just a bit battered and worn. Strange term - wonder what it means ?
I bought a second-hand laptop on ebay for £56 to replace the one that lost an argument with a glass of water. A bargain, though no cd drive. Not the latest model of course, but so what, quite adequate.
Saturday, 31 May 2014
Monday, 14 April 2014
THE GOOD BITS --- PART TWO
Train ride at dawn
One summer’s morning at 6.30 am, I boarded the first train
of the day out of Scarborough station for York. A crisp, sunny morning but rather cold for
August and the whole world seemed to yawning and stretching. As we pulled out of the station, some of my
fellow passengers grumbled sleepily at each other, and rabbits foraging on the
line hopped crossly off the tracks at the last minute, seeming to curse the
train as they did so. Everything seemed to bursting with promises for the
future.
Pre-breakfast walk
in the snow.
A bitterly cold January morning in the mid-eighties. Snow on the ground, traffic sliding on icy
roads and pedestrians wearing so many clothes you just saw their eyeballs and
noses. My employers had sent me on a
residential management-training course at Theobalds Park, a training centre set
in parkland on the edge of London. With
the roads iced-up, and the course running into the evening, it was difficult to
get away for a break, and by the second day I was going stir-crazy. Not
normally an early-riser (four alarm clocks to get me up), I got
up an hour early, and at the first hesitant peek of a winter dawn, put on all the
jumpers I’d brought with me plus coat
and boots, and crunched out into a winter dawn for some fresh air.
It was more like frozen air; there were several inches of snow on the ground, my breath
steamed in front of me, and though I could hear the sound of cars on icy roads
a short way off, they weren’t visible through parkland. Where I walked was silent white wonderland as
I padded footprints through white sheets of snow.
After a few minutes, I almost bumped into a
rabbit, which blended in nicely in his
white winter fur – he obviously hadn’t expected a human and bolted despite my
attempt to explain that I wasn’t a threat.
For about half an hour it was like having a little pristine world all to
myself; I barely noticed the cold. Then I went back inside to breakfast and found my classmates had eaten all the bacon.
Sunday, 13 April 2014
THE GOOD BITS - PART ONE
--------------------------------------------
My brother's birth
I was just past three years old and a bit confused - I knew something unusual was happening but wasn't sure what (apparently I'd been told in detail but hadn't really understood). It was unsettling having Grandma get my breakfast when Mummy always did that - and Grandma wasn't doing things in the right way !
Also, there were strange people upstairs, Mummy was still in bed and I wasn't allowed to see her.
Then as I finished eating, Grandma said I could go up now. I ran into the bedroom and Mummy said
"There;s your new brother !" There was a box-like cot-bed by the window - I ran over to it and there was
a small leg waving in the air as a tiny person looked up at me, as fascinated as I was.
Wow ! Dolls never interested me again. Mum never did find out who taught him to kick all the water out of the baby-bath onto the carpet !
Having a baby gerbil sleep in my hand
In our teens, my brother brought a couple of gerbils home as pets. Owing to unreliable sex-determination by the pet shop, we ended up with a population explosion - did you know gerbils are sex maniacs ? At one point, something went wrong and one of the females started to eat her not-quite-weaned litter, so we had to separate the babies and hand-feed them with bits of pulped fruit. The babies, probably shocked by their sudden removal, stayed huddled together, so one afternoon I picked one up to feed it. Crouched in the palm of my hand, it was frightened at first, but nibbled bits of vegetable, then sniffing my fingers, peered between them, relaxed, curled up and fell fast asleep in the palm of my hand.
--------------------------------------------
My brother's birth
I was just past three years old and a bit confused - I knew something unusual was happening but wasn't sure what (apparently I'd been told in detail but hadn't really understood). It was unsettling having Grandma get my breakfast when Mummy always did that - and Grandma wasn't doing things in the right way !
Also, there were strange people upstairs, Mummy was still in bed and I wasn't allowed to see her.
Then as I finished eating, Grandma said I could go up now. I ran into the bedroom and Mummy said
"There;s your new brother !" There was a box-like cot-bed by the window - I ran over to it and there was
a small leg waving in the air as a tiny person looked up at me, as fascinated as I was.
Wow ! Dolls never interested me again. Mum never did find out who taught him to kick all the water out of the baby-bath onto the carpet !
Having a baby gerbil sleep in my hand
In our teens, my brother brought a couple of gerbils home as pets. Owing to unreliable sex-determination by the pet shop, we ended up with a population explosion - did you know gerbils are sex maniacs ? At one point, something went wrong and one of the females started to eat her not-quite-weaned litter, so we had to separate the babies and hand-feed them with bits of pulped fruit. The babies, probably shocked by their sudden removal, stayed huddled together, so one afternoon I picked one up to feed it. Crouched in the palm of my hand, it was frightened at first, but nibbled bits of vegetable, then sniffing my fingers, peered between them, relaxed, curled up and fell fast asleep in the palm of my hand.
Wednesday, 26 March 2014
Wednesday 26/03/14
I had a dachshund puppy up my trouser leg today !
Was riding my mobility scooter when I stopped to pat the friendly little dog. It sniffed me, licked my ankle, then shot up inside my trouser leg - I was wearing rather flared trousers. The owner grabbed it by the back legs just in time; I was laughing too much to help, it tickled !
I had a dachshund puppy up my trouser leg today !
Was riding my mobility scooter when I stopped to pat the friendly little dog. It sniffed me, licked my ankle, then shot up inside my trouser leg - I was wearing rather flared trousers. The owner grabbed it by the back legs just in time; I was laughing too much to help, it tickled !
Saturday, 22 March 2014
Me, cycling and Parkinson's
Me, cycling and Parkinsons
About a year ago, seeing the Internet discussions on the benefits of cycling for people with Parkinson's, I bought one of these tricycles after seeing it on eBay and thinking it looked like a cheap, fun introduction to cycling -
It's called a Cyco cycle, and in addition to no handlebars, has no brakes, which makes slopes interesting, though you can brake to some extent by pedalling slowly. I loved it so much the first one wore out in 4 months and /I had to buy another (they're made in the USA so the shipping was a bit dear.
I get stopped by tourists as a local attraction, and chased by small dogs. so much fun I'm afraid they'll make it illegal ! Just a pity the supermarket won't let me go round the aisles on it.
My brother, who often tries to persuade me to be more "grown up" (he works in senior management and I think he sometimes brings his professional manner home with him) is rather embarrassed by my choice of transport, which he calls a "psycho", and has been pressing me to get a "proper" tricycle - my balance isn't good enough for two wheels, tried that, fell off outside the pub and couldn't persuade onlookers I was sober.
Anyway, I saw this trike on ebay and bought it for £80 .
It's been in a barn in Dorking for a while (had something very rural stuck to to the pedals), is a bit worn as to the tyres, but goes OK and I can tie a zimmer frame to the back, which is useful for those wobbly moments.
What puzzles me is, how is it that when Parkinson's plays up and I can't walk, if I can reach a trike and get on, I can pedal just fine ?
The other day, I was out for a ride when I stopped for a break. Twenty minutes later I stood up and was so rigid neither leg would move a step. At the third try, I managed to lever myself onto the saddle - and promptly pedalled home without difficulty - though of course falling over as soon as dismounted. How's that tie in with dopamine levels ?
I'll be interested to see if the stories about cycling relieving Parkinson's symptoms are true; it's only been a couple of weeks since I got the big trike and before that wasn't spending enough time at it to make a difference. My afternoon "off" periods are sometimes shorter at the moment, but that could be a random change....... TBC
About a year ago, seeing the Internet discussions on the benefits of cycling for people with Parkinson's, I bought one of these tricycles after seeing it on eBay and thinking it looked like a cheap, fun introduction to cycling -
I get stopped by tourists as a local attraction, and chased by small dogs. so much fun I'm afraid they'll make it illegal ! Just a pity the supermarket won't let me go round the aisles on it.
My brother, who often tries to persuade me to be more "grown up" (he works in senior management and I think he sometimes brings his professional manner home with him) is rather embarrassed by my choice of transport, which he calls a "psycho", and has been pressing me to get a "proper" tricycle - my balance isn't good enough for two wheels, tried that, fell off outside the pub and couldn't persuade onlookers I was sober.
Anyway, I saw this trike on ebay and bought it for £80 .
What puzzles me is, how is it that when Parkinson's plays up and I can't walk, if I can reach a trike and get on, I can pedal just fine ?
The other day, I was out for a ride when I stopped for a break. Twenty minutes later I stood up and was so rigid neither leg would move a step. At the third try, I managed to lever myself onto the saddle - and promptly pedalled home without difficulty - though of course falling over as soon as dismounted. How's that tie in with dopamine levels ?
I'll be interested to see if the stories about cycling relieving Parkinson's symptoms are true; it's only been a couple of weeks since I got the big trike and before that wasn't spending enough time at it to make a difference. My afternoon "off" periods are sometimes shorter at the moment, but that could be a random change....... TBC
Sunday, 16 March 2014
Some things I've been wondering about :
1. What happens to the middles of holes ?
2. Why, when a group of people are walking on a cliff path, does one of them always remark on there
being a long drop on one side of the path ? It's a cliff, what else do they expect !
3. The newspaper photographs of convicted terrorists always show physically unattractive people - are the pictures taken by incompetent photographers or have the subjects become terrorists due to lack of social success ?
4. Why ask "how are you?" if you don't want to know ?
5. Why do people say "I'll ring you back" if they aren't going to bother ? "Goodbye" would do.
Tuesday, 11 March 2014
I WANT TO DANCE- FIGHTING PARKINSON'S
I was telling my neurologist about "freezing" episodes in public, and described the humiliation and embarrassment I felt. He responded by saying I had no reason to feel that way. It seems to me that despite being the local expert in Parkinson's Disease and being the son of a mother with the condition, he has little understanding of what it is like to have "young onset" Parkinson's. So I am writing this - to show what it is like, at least from my viewpoint.
I was 47 when Parkinson's hit me while I wasn't looking. (I'll call it parkie from now on as that's as dignified a name as it deserves.)
My introduction to Parkie was in the autumn of 2004. The day that changed my life completely (though I didn't realise that for some time) was such an ordinary, even boring day. I had one of those niggling headaches, the kind that doesn't really hurt but just makes you irritable.
I'd taken a couple of Ibuprofen and was at my desk at work testing some software changes (I was working as a computer programmer at the time.) Suddenly, the headache increased to a really sharp pain, then, before I'd had time to say "Ouch!" the headache disappeared. At the same time, my upper left arm began to twitch - it felt like a small engine pumping away. However, I'd been sitting still and leaning n that am for several hours, so thought it was jut a cramp and went for a coffee-break.
The twitch was still there next day, which surprised me, but it didn't hurt so I ignored it. Like most of my family I'd always had an essential tremor in my right hand so a bit of shaking was routine. Plus I was brought up in the belief that if you can stand up and think clearly then you took a pain-killer, got on with life and didn't bother a doctor.
Over the next year the shake got a bit worse and I got a bit better at ignoring it. My father was dead by then and mother elderly and a little vague, so with few close friends there was no-one to comment (I've always been a bit of a loner).
It was about a year after the shaking started that my boss called me into a side-room and said "You're shaking all over the office, have you seen a doctor?" "No". "Well - go and see one now" . Hadn't thought the shaking that obvious.)
I went to my GP and showed her. She said "I've never seen that before" (really ?) and referred me to St. Peter's hospital in Chertsey.
It took several months (and a lot of time in waiting-rooms) to complete the tests I needed. I still have nightmares about the ECG and those little clamps they put on the breasts ( couldn't they at least have drawn the cubicle curtains ?), but then I've always had a bit of a phobia about anyone touching that area.
Eventually I was summoned to the "Movement Disorder |Clinic, where everyone sat in the waiting room not moving. One of the neurologists was sitting at a desk holding a tatty folder containing mostly illegible notes.
A woman, who looked like a nurse and turned out to be one, was standing by the window. The neurologist got started with some fairly routine remarks and was obviously building up to something, before pausing and announcing the need to answer a phone call - a feeble excuse as we could both see through the open door two women busy monitoring the phones at the reception desk.
The nurse briskly followed her, so I did the obvious - walked over to the table and read the file. There it was, "Parkinson's Disease" as I'd feared.
Had I known just then how much it would change my life and character, I would probably have killed myself, so it's as well no-one told me what to expect, ignorance was definitely an advantage.
The neurologist came back into the room and confirmed it was Parkinsons, and there was some discussion of further treatment. I don't recall much of what was discussed (though I did say I'd rather not start any medication for a while) as I was trying to work out how to react - there didn't seem to be much point in getting emotional; it wouldn't make any difference and then I'd just have to calm down again. I do remember the nurse looking at me in a slightly puzzled way as though I'd missed some sort of correct response - what I wonder did she expect ?
I'd done some research and though hoping for a "trapped nerve" diagnosis, expected it to be Parkinsons, so there was no error of surprise and therefore no shock, or I might have reacted more, especially with the rather casual method used to break the news.
Another appointment was made for six months, then I left. My only close family was an elderly mother becoming too vague and forgetful to understand (luckily, in this case), and I've never been one for getting close to friends, so I drove t o some nearby woods (Virginia Water park) and after sitting a while walked into the woods for a good scream - trees don't complain. Then I went home and got on with things.
I did tell my mother (since died) but played it down and said "probably Parkinson's". I don't think it really registered with her, thank God, and she died two years later before my life was really disrupted by Parkie.
It being quite normal in my family to have shaky hands, that part didn't make much difference - I still find the walking difficulties much more trying than the shaking |(with a mouth the size of mine, some food usually gets in !)
About a year later, I woke up one morning and couldn't get out of bed. Living alone, there's no point in yelling for help, and being desperate for the loo I soon lost my temper, and forced myself up and moving. Though at the time time I didn't think much about it, I wonder now if that was a second stroke, as it was a few weeks later I noticed my left leg shaking a bit and bought my first walking stick.
TO BE CONTINUED
I was telling my neurologist about "freezing" episodes in public, and described the humiliation and embarrassment I felt. He responded by saying I had no reason to feel that way. It seems to me that despite being the local expert in Parkinson's Disease and being the son of a mother with the condition, he has little understanding of what it is like to have "young onset" Parkinson's. So I am writing this - to show what it is like, at least from my viewpoint.
I was 47 when Parkinson's hit me while I wasn't looking. (I'll call it parkie from now on as that's as dignified a name as it deserves.)
My introduction to Parkie was in the autumn of 2004. The day that changed my life completely (though I didn't realise that for some time) was such an ordinary, even boring day. I had one of those niggling headaches, the kind that doesn't really hurt but just makes you irritable.
I'd taken a couple of Ibuprofen and was at my desk at work testing some software changes (I was working as a computer programmer at the time.) Suddenly, the headache increased to a really sharp pain, then, before I'd had time to say "Ouch!" the headache disappeared. At the same time, my upper left arm began to twitch - it felt like a small engine pumping away. However, I'd been sitting still and leaning n that am for several hours, so thought it was jut a cramp and went for a coffee-break.
The twitch was still there next day, which surprised me, but it didn't hurt so I ignored it. Like most of my family I'd always had an essential tremor in my right hand so a bit of shaking was routine. Plus I was brought up in the belief that if you can stand up and think clearly then you took a pain-killer, got on with life and didn't bother a doctor.
Over the next year the shake got a bit worse and I got a bit better at ignoring it. My father was dead by then and mother elderly and a little vague, so with few close friends there was no-one to comment (I've always been a bit of a loner).
It was about a year after the shaking started that my boss called me into a side-room and said "You're shaking all over the office, have you seen a doctor?" "No". "Well - go and see one now" . Hadn't thought the shaking that obvious.)
I went to my GP and showed her. She said "I've never seen that before" (really ?) and referred me to St. Peter's hospital in Chertsey.
It took several months (and a lot of time in waiting-rooms) to complete the tests I needed. I still have nightmares about the ECG and those little clamps they put on the breasts ( couldn't they at least have drawn the cubicle curtains ?), but then I've always had a bit of a phobia about anyone touching that area.
Eventually I was summoned to the "Movement Disorder |Clinic, where everyone sat in the waiting room not moving. One of the neurologists was sitting at a desk holding a tatty folder containing mostly illegible notes.
A woman, who looked like a nurse and turned out to be one, was standing by the window. The neurologist got started with some fairly routine remarks and was obviously building up to something, before pausing and announcing the need to answer a phone call - a feeble excuse as we could both see through the open door two women busy monitoring the phones at the reception desk.
The nurse briskly followed her, so I did the obvious - walked over to the table and read the file. There it was, "Parkinson's Disease" as I'd feared.
Had I known just then how much it would change my life and character, I would probably have killed myself, so it's as well no-one told me what to expect, ignorance was definitely an advantage.
The neurologist came back into the room and confirmed it was Parkinsons, and there was some discussion of further treatment. I don't recall much of what was discussed (though I did say I'd rather not start any medication for a while) as I was trying to work out how to react - there didn't seem to be much point in getting emotional; it wouldn't make any difference and then I'd just have to calm down again. I do remember the nurse looking at me in a slightly puzzled way as though I'd missed some sort of correct response - what I wonder did she expect ?
I'd done some research and though hoping for a "trapped nerve" diagnosis, expected it to be Parkinsons, so there was no error of surprise and therefore no shock, or I might have reacted more, especially with the rather casual method used to break the news.
Another appointment was made for six months, then I left. My only close family was an elderly mother becoming too vague and forgetful to understand (luckily, in this case), and I've never been one for getting close to friends, so I drove t o some nearby woods (Virginia Water park) and after sitting a while walked into the woods for a good scream - trees don't complain. Then I went home and got on with things.
I did tell my mother (since died) but played it down and said "probably Parkinson's". I don't think it really registered with her, thank God, and she died two years later before my life was really disrupted by Parkie.
It being quite normal in my family to have shaky hands, that part didn't make much difference - I still find the walking difficulties much more trying than the shaking |(with a mouth the size of mine, some food usually gets in !)
About a year later, I woke up one morning and couldn't get out of bed. Living alone, there's no point in yelling for help, and being desperate for the loo I soon lost my temper, and forced myself up and moving. Though at the time time I didn't think much about it, I wonder now if that was a second stroke, as it was a few weeks later I noticed my left leg shaking a bit and bought my first walking stick.
TO BE CONTINUED
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