** CAVEAT, ALTHOUGH THERE IS MUCH AMISS WITH THE CURRENT MALAISE I FIND MYSELF IN, STILL.. ON THE CUSP OF ENTERING YEAR 7 SINCE DIAGNOSIS, I FIND NO BLAME IN THE CURRENT TEAM OF NDIS DISABILITY SUPPORT WORKERS OR THE NDIS SUPPORT ORGANISER. THE FACT REMAINS I WILL ALWAYS PROVE TO BE .. “A CHALLENGE”
23/12/20 – very hard day as my lovely amazing NDIS team and management don’t know the basics of YOPD and I am severely restricted by time again running out faster than my well intentioned team, my own body and mental resilience and the long suffering patience of so many of my wonderfully supportive neighbours are likely to be able to absorb.. also i am not allowed to use common sense tried and tested means to fix this in a jiffy (which i could have done months ago).. in stead every single shift has to start with me explaining verbally one on one what events in my view have taken place since the last time each individual carer saw me, what my plans are and i often hear from them what they have been instructed to do, which sometimes leads to me having to rearrange my plans at the last moment without any heads up.
Again, this is no one’s fault and i still have trouble convincing lots of people, some old friends and family members as well, that i stopped playing the blame game years ago.
i fell on the cold tiles in my unit as i tried to get to the throne but got caught short and puked on the carpet. Dysphagia ( spoiler alert > this is how i will die LOL, combined with severe fatigue and anxiety and I am noticing horrendous diskenesia; a major new worry that I can’t share with anyone as.. i just don’t have the time to bring three or four people up to speed verbally one on one …
I have now fallen so many times tomorrow i am going nowhere at all, left elbow and hip are really sore – it had to the the left side! – and I will ask the carer tomorrow to not put do any laundry or at least don’t put it to air in the Richo-Reiki quiet reflection room, so when my remedial massage therapist rocks up at 1pm, she can set up right away as she must be flat out too in these dark mid-Winter days before the Light of the World is revealed to us all once more.
weight: 70.1kg (down i think, not sure) movement: Y movicol taken: N mood: anxious not able to unwind hs: manageable for now
SAT 5/12/2020 > Just a quick update for now, weight still dropping but no one seems to give a fcuk*, so i wil just try to keep monitoring as best i can.
W 70.6kg M: YES DsM: 7 : MEDS: OK MOOD/STRESS: 6 HYPER-S: 4
* the carers themselves can’t be blamed at all, siply bno ebough housrs availanr
Few glorious late summer days, yesterday 38 and sunny. Today also beautiful. Am finding the meds to be slowly starting to behave with usually around late arvo a big dip in mood and a rise in anxiety. I feel it’s now imperative to work on reducing stress even more and increasing rest and relaxation where I can.
The one thing I can’t quite grasp is how to restart the engine in the evening after I have slept for a couple or hours. The assumption always seems to be that everyone lives their lives being active from 6am til 11pm. My day sometimes starts at 4 or 4.30 or 5 or whatever, which means when it’s around 5 or 5.30pm I sort of fall asleep for a while.
So, as I’m taking the meds on the hour, every hour, this means when I wake up again which can be anywhere from 9pm or later, I have a) missed out on a few doses but I suppose sleep is a good substitute and b) I then need to take more meds than I want to (as I’m meant to be winding down for the night when one ideally wont’ need to use too much if anything) to fire up the mobility engine.
Tried twice to get some advice on this but they didn’t grasp what I was trying to stammer out at them. New neighbours seem very nice. Have sent Services NSW pleading letter requesting a review of the decision to suspend my license. It was a fair cop so can’t argue but it would be such a help and relief to be able to get around.
In the meantime, however i find myself once again going for early morning strolls to the old haunts, such as the local cafe, sometimes having a swim on the way back. This morning i carried on to Terrigal where it seemed still a pleasant enough late season feel.
You do pick up on the global uneasiness. But managed to get my groceries from the little IGA on the esplanade and Ubered my way back with Rodney.
Me: “Thanks so much, it’s over there, would you mind turning round as it’s on the other side of the road. Normally, I don’t mind but am getting a bit tired and my mobility gets a bit iffy.” Rodney: “No, of course not, mate. You’re alright, I remember dropping you off once before.”
Doing some tidying up. Am taking a lot of advice from Mike my physio. Advice that to me reaches across the spectrum of PD in term of how to handle this Beast mentally – not just the physical and mobility impairment. It’s so much more than just a mobility disorder which is confusing, frustrating and debilitating.
Dyskeneia really bad.
My sister’s birthday. Started a food diary for my nutritionist in order for her to get some kind of idea of how I’m doing on the weight-loss front. Beautiful warm day. Did get down to the beach but couldn’t walk very far as the deep sand is tough when I’m not 100% confident in my movements.
Also got a bit weary of people thinking ‘What the hell is that guy doing here? You can’t have a walking stick and be moving like grandpa Moses and then also lying down catching some sunshine in your speedos like a normal Aussie dude.’
Oh well. Managed a bit better with the meds throughout the day and didn’t feel that horrendous anxiety set in late afternoon. Tried to stay awake after dinner to see if i could in theory entertain the thought of some thoughtful entertaining again some evening.
Very slow start, getting ready for 10am home visit from speech therapist & nutritionist following God-awful night due to meds routine going slightly out of wack.
Negative: horrific lucid dreams involving menacing messages and fear and loathing loaded fragments which seemed to want to deal with the whole redundancy saga prior to the Telecom Times era.
Weird thing was that it didn’t seem like any kind of interaction and story line from the past, but rather the imminent future. Woke up feeling the exact same kind of fearful foreboding as I had just experienced during the dream phase.
Positives: gaining weight again & improving some DIY in-home mobility solutions as I’ve had to cut down drastically on carer’s hours during this pre-NDIS limbo. Still, counting blessings = which is my favourite time-honoured remedy against the ever-looming shadows of the Churchillian black dog.
As the morning meds seem to have punched in for their erratic, unpredictable shifts I wonder if I should try to go for a dip? The sun’s out. Will report later.
Yes, did go for a quick dip but as the life guards hadn’t yet started for the day, I didn’t linger in the surf, which seems to be sizable here most days. I suppose that makes it a fun fair dinkum surf dude and dudette beach. Need to be increasingly aware my Johnny Weismuller days are well and truly behind me and my bravado not withstanding, I have to admit my strength, awareness and Lord knows what else are steadily waning.
Good meeting with speech therapist and nutritionist.
Keeping things really simple and quiet, as far as that’s possible for me. The medications seem to be going quite well, apart from the odd seismic upheaval, and I am thankful for that.
Physio comes over. I am so thankful at least one professional medical person has been able to stoop far enough to actually tell me they have used my site, this very page, in fact to find our what’s been happening.
Had a great talk, a PD strategy refresher if you will.
Also had to inform my two local carers starting next week I will only be able to give each a total of4 hours per week while I wait for NDIS approval. Sad moment as they are both very good carers and a cut in their hours is the last thing they need.
Not looking forward to Tuesday, the day m six month drivers license suspension kicks off. Perhaps it’s the Style Guru or Cool Providence intervening. I did just get my disabled parking sticker – but at least I won’t have to start using it for another six months.
And in PD, six months is a hell of a long time ..
Truly horrific experience at PD Clinic this morning. Appalling in every way.
Am not going to elaborate but was treated – to my utter surprise – with an attitude which started off with feigned interest, slipped calmly into overt disinterest and topped it all of with a fair dollop of condescension and wilfully ignoring my one pressing question.
Left thinking what’s the fornicating point anyway?
Fearing my speech which had been on the mend, certainly better than yesterday – day one of yet another meds trial (trial no. 4) – would not be able to withstand the usual ‘Slow down so I can just cut you off and complete your sentences according to what I wrongfully and unhelpfully will presume you sort of wanted to say, which coincidentally is sort of what I needed you to say, how about that?’ approach [Caveat: this does not apply to my current specialist], I had painstakingly organised a clarifying email with all relevant details of said trial until now, including which times I had taken which meds, how I’d been sleeping, mood, getting up to pee, vivid dreams et cetera.
It never got a look-in. ‘So you’re now all set with the NDIS and you’ve got your carer?’ ‘Actually, no I have been obliged to hire private carers and I haven’t yet got the NDIS.’
‘But the DSP has recently been approved and now the NDIS will hopefully be the next step.’
– ‘Ok, so you’re doing the liquid medication regime?’
All the while I’m trying to tell the PD Nurse I have it all written down concisely in this email right herewhich I am pushing gently into her field of vision as by now I know I will be leaving in a minute..
‘No, I had to call it off again,’ says I, amazed no mention of this has made it into the notes she’s reading back to me.
Before I can start explaining what one might have assumed to be known already, the missing pieces of this pesky patient’s pattern are helpfully proffered: ‘Ah, I see you got fed up with having to mix up the bottles of liquid meds..’
Yes, I’d like to say .. how uncanny, are you telescopic or something? Yes, that’s right! I called it off ’cause I is bone-idle. Lazy, that’s me!
I waited till the thing – which I remembered from the first attempt to watch me like a hawk – had been fitted and buggered off saying, extremely clearly: “Thank you, S!’
More fresh stress of a non-medical nature awaited me upon returning home.
However, once again Mike my physiotherapist extraordinaire, demonstrated to me that I was onto something when I’d been asking all and sundry, including those exalted medical mandarins firmly established in their peer-reviewed firmament to every now and then stoop to cast a sideways glance at a single online page where someone like muggings, who does not have a vast social network or large circle of friends or family, can try at least to keep some kind of up-to-date record of the ever-changing answers to the multitude of earnest ‘So, how have you been?’ enquiries.
Mike sent me the following SMS:
Hi Richard, been having a read of your blog. Sounds like you have been having some ups and downs over the last couple of months. Would you like me to come out for a visit this week? Let me know. Thanks, Mike.
Off to the specialist today to get a PKG fitted. It’s a watch to monitor my movements throughout the day in a most accurate way, gathering stats to compare in due course.
Of course, with my wayward ways this too may end up off the usual scale.
But we’ll give it a fair whack.
The last time I wore one of these, however, would have produced some unexpected data as it was one of the two occasions when I was skint and had to walk home from the hospital, which is located in Gosford.
Onwards and upwards, though..
Quit the liquid kinson trial. Day one of doing the same hourly delivery regime of kinson, with tablets instead. it’s called continuous therapy and the idea is for dopes like me who just can’t get their lives together, or rather for those PD pilgrims who happen to respond much more strongly to any slight change in their meds, it may just offer me a more seamless method of control during the day.
Speech yesterday truly appalling. Made me feel so low, so sad. Last week it was a joy to be able to have chats in shops like a civilian, family and friends were actuallly able to understand what I was droning on about. And the take-away for me was that even on just Kinson, my speech became wonderfully strong and confident. Conversely, when things turned pear shaped, and the dreaded freezing once more stopped this meds trial – the most promising so far – in its tracks, perhaps it’s just a matter of getting the actual regularity and consistency of whichever poison floats one’s boat right. Forget about Madopar, Kinson, Sinemet? Perhaps it makes no difference, since after all it’s all just variations on the one single drug ever devised to dampen the worst symptoms?
During the night I’d always rely on taking just one slow release Sinemet, which has been unavailable for a while. Specialist gave me a prescription for a generic version. My excellent local chemist never heard of it.
On the plus side, my tiny team of carers are making a huge positive impact on the quality of life. Thankful..
Today was a good day in so far as I felt more rested and peaceful and my speech is getting better all the time. Good news, this particular webpage will henceforth be more sober in tone – aiming to curtail my seemingly unstoppable penchant for poetic license and verbal flourishes.
In short, it will once more become a medical record of my slide down the path of PD.
Will be talking to new Procto (is that how you refer to a proctologist as you would a physio?) about upcoming colonoscopy.
Just got back home after a few more days being delayed in Sydney than i had bargained for. Short story: my car broke down and tried to resuscitate but in the end had to administer last rites.
Loved that car but it was very old and very cheap so it served a purpose. Will be able to spend a little more time choosing this time. Although it means using hire cars again.
But at least I will be able to make use of my two Wamberal carers as well as NEWSFLASH my new mainly Sydney-focused carer Ingrid, who has kindly offered to be my carer for when I am in Sydney for appointments, business meetings et cetera which is still fairly frequently.
It is great news for me because i has already started to develop a fear of crowds, public transport. A few months ago i fell over in the middle of the street in the CBD near Wynyard station and it put the fear of Parkinson’s in me. To suddenly, as a 54 year old man to feel so helpless, feeble and decrepit was an infernal eye opener. And, I admit to some stress-relieving effing and blinding on my part as the office workers on their coffee breaks opted to nurse their respective cappuccino’s, flat whites, lattes and soy whatevers – rather than lift a finger to even just enquire if I was okay.
Of course, once again, it was a nice young Asian chap who was breezing past with a few of his friends who spotted me from the corner of his eye and was half reaching down to pick me up, saying, ‘Are you ok Sir?’ By that time, misplaced righteous indignation had already pumped up my adrenaline enough so I had forced myself to jump back up to my feet. (“That’ll show those caffeine clowns!”)
The last thing I want to happen is to end up a timid hermit locked away somewhere in the sticks. I also still have some ambitions and dreams that hopefully include some travel and of course so many of my family and friends live overseas, so I need to make sure I never start getting afraid to come back to my beautiful native emerald city for starters.
Am going to have to ease off on refreshing at least parts of the ROZ site while i figure out how (if such a thing is even possible) to address this Sifrol bee in my bonnet, which after all was the main driver for launching ROZ in the first place.
But all of that is very tricky and complicated and will take time. In the mean time, normal life goes on and I want to stay focused now so many good things are also happening. I think for someone like me FB can be a double edged sword as well as a distraction so may take a break from that too.
Also may need to see if my intrepid transcriptionist wants to come on board again, also considering some key people to delegate some stuff to as my disease deteriorates. At least having now been accepted on the DSP means I can put in place some elements of my life for the coming few years.
Until now, I have had to program my mind to believe that while I was surviving, treading water, from day to day, hour to hour at times, there might still be some kind of respite further down the track.
Trying to find out which kind of ascorbic acid i need to get. bit of a tough morning, took me 2 h ours to get dressed. Claudia (my personal carer) arrived at 10.00 and did another fabulous job. Learnt some more Spanish as well.
Acceptance is the name of the game. Today another first, using the shower chair while having my hair washed. So wonderful to emerge from shower feeling properly clean with properly clean hair. And all done in a beautifully respectful and professional manner.
But yes, another ‘Acceptance First’ for me. Told Claudia I had gratefully accepted the shower chair but politely declined the toilet seat lowering down thingey. Too much of a good thing is not good, including acceptance…
Tomorrow off to Newcastle for that second DSP job assessment interview. They are all of a sudden moving with lightning speed. I wonder why… (…)
Finally had a swim. Hadn’t been able to have (any kind of) swim at all for weeks and weeks.
Can’t wait for these disruptive meds experiments to be over.
Day 4 of liquid Kinson trial
Day 3 of liquid Kinson
Applied for NDIS with great help from social worker, met health person dealing with home adjustments etc , now have shower chair, politely declined toilet seat help support thingey for now.
she wil approach landlord re adjusting shower etc.
late afternoon, somehow managed to phone back CL re appointment next Tuesday in Newcastle for second assessment for my DSP claim. things moving very fast now.
Day 2 of liquid Kinson trial
phone assessment for DSP claim with psychologist
Day 1 of liquid Kinson trial
Yesterday late in the day two important messages hit my inbox. One from the real estate agent relaying the owner’s message to alert the police should there be any further issues re the gutless wonder upstairs. Then another asking my views on said tenant’s request to have five more days to clear out his stuff. I agree but ensure both emails from estate agent/owner are forwarded to my two best friends and new carer. It’s important to keep a record of this kind of thing, I have found out the hard way in the past.
Also receive word on Thursday I will have a phone assessment to establish my job suitability as part of my claim for disability support. I imagine the fact I don’t have to present in physical form is a good omen.
Awake at 5am, feeling more relaxed than I have in a long while. New carer started yesterday and it went really well.
Saw specialist and new plan for taking my meds hourly but in liquid form. This will entail me crushing up meds in a litre of water in the mornings, adding ascorbic acid and then just swigging through the day.
The idea being to maximise the benefits without these horrible rocky ups and downs.
Enjoyed introducing carer to some of my haunts and some of the locals ‘who have my back’ (hate that expression).
Slept a few hours of deep sleep, with some very odd menacing dreams. Let’s see what his day may bring..
Just got some good news from the real estate agent. Upstairs nimrod’s tenancy is being ended. Owner apologised for not letting me know himself as he’s in hospital with his dad who has been taken ill. Fortune favours the brave part II.
Decide to start looking for another unit. Another sleepless night due to upstairs morons. I had typed a long specific update but it didn’t save and i am getting too tired and too fucked off to try and produce it all again. Apart from my physio, no one in the medical profession reads this crap anyway, as far as i can tell.
So will just copy and paste some crap and then try to relax until goofy turns up again. i tell you, he’d better not. Got me celtic blood up right now. He wouldn’t stand a chance.
What a difference from how this day started out in a new church i found and liked.
Pain due to stress and no relief is horrible. Anxiety and dyskenisa following suit. Tried on the off chance to see if my good friend could fit me in but she was fully booked, and turns out I can’t stay out in public too long anyway. Drive back home (so happy with my super-fast car) and hope to relax but just getting aggravated thinking about living arrangements. If troubled and troublesome neighbours are not going to pull in their heads when the owner is actually staying on the premises, what improvements in terms of peace and quiet as well as personal safety can one expect over the next 5 to 6 weeks and once he’s back in QLD?
Decide to cut out Sinemet as dysenkisa was getting out of hand. Manage to achieve onanistic relief following 6 days of abstinence as was unsure re blood test. Got all clear earlier today. Must find some kind of solution for that Sifrolic impetus. Funny, they don’t warn you about it, once your life has been well and truly trashed, you get this lovely response, “Ah yes, that can happen yes.”
– “Thanks, where do we pay?”
Of course, while this phenomenon is no longer hurting any legal partner, spouse or other loved one, there is an equally deafening silence as to how to manage this? The last sex therapist said, ‘Why don’t you try some of the sugar daddy sites?’ I digress.
17 January Finalise agreements with private carer, I simply couldn’t keep going like that. C. starts on Monday and will accompany me to specialist’s appointment.
UPDATE – later that day somehow manage to get to GP to ask for blood test, anti-biotics as urinating now accompanied by slightly unsettling pain when first gushing forth. Am pretty sure just a urinary tract infection but something more visceral, not to mention venal needs to be ruled out as have been uncharacteristically cavalier in several recent trysts. Nice Chinese GP puts me on anti-biotics.
Make sure I’m as rested as possible as long day of travel ahead. Leave at 3am to drive in my car up to Newcastle to then leave it there while I drive hire car back to Sydney and cancel hire car membership.
Drop off hire car around 8am in North Sydney, getting a bit anxious now at thought of having to be exposed to stares and cares in long train ride.
Meds wear off before i get to station; shuffling, hopeless. Horrible, feeling life really not worth it, somehow get onto train to Hornsby. Make best use of the situation to do some Work (i.e. knowing people are fixated on looking at this weird guy, i try to do some subtle awareness raising. )
Get to Hornsby. Can’t see train to Gosford/Newcastle. Ask chap. Track work, replaced by buses to Wyong. Then change for Newcastle. Quick sinking feeling then thinking: no toilet on bus, and as am having to wear clothes today (cumbersome fiddly long trousers, belt that of course doesn’t work) consider I might actually have to prepare for pissing my pants if worst case scenario. Not entirely sure how far Wyong is from Hornsby but not feeling that perky anymore.
Lovely female coach driver safely drives like the clappers along M1 quite devoid of traffic. Am in need of brekkie but four sips of H20 left in bottle and Kinson will have to do.
Get to Newcastle around 1pm, find my way towards where I think street is where i left car. Stop at nice looking Sally’s cafe, decide to have lunch as find it a lovely atmosphere. A nice smile from a nice girl does help. She doesn’t know the area as she normally works in branch across town. However, after lunch in near empty cafe, turns out car is less than 5 minutes shuffling distance. Get in car, drive home. Collapse.
In the afternoon
Interviewed candidate for private carer position. Very impressed with her attitude.
In the morning
Marcus turns up to do domestic service, I wasn’t expecting him. Probably my fault, poor guy. Same thing last time. In the end he proves invaluable as his regular ‘garage guy’ is able to fit me and my ancient car in to sort out pink slip/green slip stuff if I’m quick.
When I get to garage (after having already physically rocked up at 3 or 4 local places before that morning with all of them too busy) Marcus’ guy Dave is swamped. Loads of ‘bigger’ tradies’ orders and so on.
My speech is telling me I’m getting tired. So, I hand Dave – I’m still not sure if he’s annoyed I turn up being Marcus’ connection or not – a ‘PD’ card. I am now getting a bit knackered. Dave says something, I can’t quite hear him. Some arcane RTA or car problem?
Turns out, looking at my card, Dave said, ever so softly, ‘My dad had it. Have you tried surgery?’ – ‘No, it’s something I may look into though. Did it help your dad?’
‘Yes, his tremor never returned.’
Once this kind of male connection is established in this bloody marvellous country where a Mate is a Mate is a Mate, you can take a breath and relax. Ten minutes later, having only had to pay Dave $49 for the paper work, I thank him, saying ‘See you soon’ as clearly the car while safe needs a lot of work, and go back to Michael at the RTA.
Spend amazing morning at Erina RTA where beautifully helpful US gentleman Michael steals the show with incredible lovely super helpful customer service attitude to everyone but also to me and my keen intent to get the car all sorted and legal and inured etc.
Because car’s rego runs out tomorrow. I remember him from a while ago when I first moved here and had him help me sort out my Uber stuff. I like to make use of the new more discrete ‘I’m not a weirdo on angel dust, I’ve just got PD’ cards and prepare to use it to let Michael know why my speech is so erratic. Says, ‘Sir, I noticed your card first thing. Not to worry about a thing, and besides my father had it as well as one of my best friends. The less said about it, the better Sir. Now, if you just follow me, we’ll soon have you out of this office and in out in the sunshine enjoying the rest of this fine day.’
Turned up at specialist’s rooms firmly convinced I had an appointment Doh! Next Monday, this is why I need a savvy carer quick-smart. Get home and need to rest for few hours. Bad: silly senior moment Good: first time driving myself to specialist/hospital
Considered just taking Sinemet. Feeling very poorly following huge stress.
Spent night in anticipation of 15-20 drunken rampaging morons to come down from upstairs unit to do some freelance PD-bashing. Have made audio recording in case need to provide to police. Despite the Dutch courage- filled idiots verbally terrorising and egging one another on to ‘Lets get him’ ‘Do it now, let’s go!’ I start to relax at 4am when the mayhem dies down.
Day or so later, I run into property’s owner. All good. ‘Fortune favours the brave..’
Upstairs neighbours funeral tomorrow. This, of course, leads troubled son to invite assorted commiserating alcoholic morons.
Anxiety up. Thought of finding sanctuary elsewhere again but then decided not to.
Paranoia is a bastard. I know my security/anxiety radar is too finely tuned right now but I also know that the troubled son is wont to talk about and laugh about me behind my back.
I am prepared to give him a pass since he’s grieving over his Mum. But this is not a new thing. Being the odd one out cetera.
Still, soon I’ll have new neighbours. Que sera, sera.. I suppose.
PS. Very pleased my outstanding physiotherapist actually provided some feedback to this very site, this update page in fact, when I referred him to it as he was enquiring per SMS how I had been travelling though the holidays.
The first person ever from the medical professional caste to actually respond to this central record, making me feel just a little less like an oddball, and more importantly demonstrating the practical use of it.
Much appreciated, truly.
Obliged to cancel appointment with neurologist. Too unwell and unsteady, coming off Madopar again.
Find out from real estate that lease of upstairs unit doesn’t end for another 2 months. Shocked, can’t deal with living under that moronic threat cloud. Stay in hotel as not feeling safe due to threatening atmosphere engendered by unhinged son of upstairs neighbour who passed away on New Year’s Day and his gang of alcoholic nimrods.
Have notified contact at real estate but made her promise to me not to contact the idiots just yet because of likely reprisals, even if she kicks them out or shortens tenancy. ( I think women really don’t understand how this works. Morons don’t have to live here to return at leisure and exact misguided revenge )
Late arvo & speech now so bad to the point of near-tearful embarrassment. ‘Can you tell me where I can find mens’ bathing suits, please?’ – ‘Sorry, I don’t understand?’ Following three more attempts on my part, each getting more anxious and desperate, I just had to leave.
‘Sorry, can’t help it, Parkinson’s. Where can I find bathing suits? For men?’ – ‘The registers? The registers are over there, Sir’ ‘Sorry, no I mean swimming trunks or bathing suits..’ ‘Cozzies?!’ – ‘The information desk? Sir? Is that what you mean?’
Poor thing, still trying to find a helpful solution for this odd wild man of the woods who seems to have crawled into the built-up section of this area wanting or needing something or other.
Had tried to escape funereal vibe re very ill upstairs neighbour . Went out to run a few semi-fun errands – checking out 2nd hand car, buying some new cozzies, get meds – but ran into too many stares & cares, including non-plussed haughty ones from Bateau Bay chemist & assistant.
Funny thing was, the arrogant looking-down-nose-pose struck by the Venerable Chemist remained securely fixed on his mug, even after he said ‘No sorry, there’s no Kinson left on your prescription.’
Being an annoyingly tenacious optimist I decided to take heart in the fact that he and his fragrant assistant had instantly taken against me and my Neanderthal level English gibberish for reasons that had nothing to do with my PD. Phew!
Silver lining for the hermit: some bright spark’s only gone and uploaded onto YouTube the TV adaptation of the ultimate (William Shirer’s) Schnitzler biography – hours of fun for the whole family ..
2 January 2020
Had to quit the Madopar Rapid saga. Although it was such a relief to speak loudly and clearly again without even trying, the incessant intermittent freezing is even more terrifying to me personally and it seems my choice is to either use
Madopar – I think it really lifts my mood. PRO – Hugely improved speech. Quick effective impact on dyskinesia. CON – Adverse impact on mobility, i.e. very frequent, though wholly unpredictable freezing.
or Kinson – I think it gets me down a bit more, perhaps unless the dosage/off periods are tweaked to perfection. PRO – Predictable positive impact on mobility. i.e. almost no freezing occurring. CON – Atrocious impact on speech, dyskinesia
Went back to Kinson, Encape, Azilect cocktail on 29th. Am trying to get to the point of using just 1 Kinson tablet every 2.5 to 3 hours. Results today 2/1/20 : speech poor, dyskinesia up, no freezing.
Forward looking plan; continue until advised as to how to ‘meld’ the positive elements of Kinson and Madopar without having to suffer the negative ones. Something tells me this is probably not going to be as smooth-sailing or straightforward as it sounds.
Also will focus on cutting out stress, getting more sleep, rest and exercise.
UPDATE II – As (very) good developments started cascading, I had to create a new Site page where in future, anything deemed important will be published, medical or otherwise. So FB will be used more and more for ‘a bit of a laugh’ while anything I think is truly important in terms of my remaining plans etc. will be found here or here first.
However, now is a time of great thankfulness.
UPDATE – Woke up with far too much dyskinesia, horrific. Hope I can get that Madopar Rapid somewhere today.
No email just yet but Peter said it could also be this morning. Of course, the fact that he’s ‘trying to find out what happened to my application’ is in itself cause for concern.
Tried to source the required strength of Madopar Rapid from two pharmacies before I started getting tired but no luck just yet.
Heavy, that’s for sure ..
First off: If you have anything left to cross, please join me in crossing fingers and what have you. Just phoned my bank’s Superannuation Department to see if I could get an update on my application to access part of my super early. Nice chap said he’s going to send me an email once he locates what happened to it.
Bit worried, due to extensive experience with endless series of spanners in all manner of sizes and shapes having been chucked into the works on so many occasions over the past few years. Of course, I hastened to tell Peter (my earlier contact Tina wasn’t in) that I have a PO tracking no. of the application which arrived at GPO in Sydney last Monday and was collected on Tuesday. Just to bring down the call centre stand-by mock resolution Fobbing Off scenario in his mind.
Later today, I will be picking up a new bottle of Madopar (to replace the Kinson) on recommendation of my specialist. He did take note of my misgivings, and thanked me for starting off his Monday morning with a nice classical reference when I described that horrorshow saga as ‘Dante-esk’ ..
He reassured me that those issues would have been due to incorrect handling of exact dosage and other factors I am now slowly getting my head around myself. He provided a comprehensive explanation of exactly what to do and what to do if any problems should arise.
I did tell him that when it worked, it worked a treat. So, having only last week experienced the first ever seamless transition from one dosage to the next with no ‘off period’ in-between, I am keen to get the best possible quality of life, which in my case unfortunately largely will have to be chemically determined.
Tomorrow morning first appointment with new GP and late morning appointment with allied health care coordinator, both important appointments which might also produce something I may need to want to include in my DSP claim.
Pfff .. breathe in … breathe out .. Will need my Heavy People still. But it works both ways. Am quite ‘Heavy’ myself in that sense.
Seeing a physiotherapist today for the first time in aeons, and yesterday was informed that due to my social worker’s pro-active stance, early next week a care coordinator will be visiting to gauge what kind of other services I might need.
As I understand it, this particular service is meant to help those people with health needs who for whatever reasons have not yet been able to access the NDIS.
My speech therapy homework is to try and make my impaired mind get used to the sound of my own voice slowing down. This as my loved-ones know, is a huge challenge for me but one that I’m determined to master.
I’ll come back to this soon. But for now, if you’re on the phone with me (talking now about those ‘in the circle of trust’ LOL, and you hear me speeding up to gobbledygook level, you can help me by reminding me to use the mindfulness tapping technique – also well known from approaches dealing with a range of other ailments such as anxiety.
Perhaps just go ‘Oi Rich, tap tap tap?!!’ And why not make it a fun experience by trying to say it in as sarcastic and condescending a voice as you can muster. After all, gotta have a laugh, right?
I know this particular log is usually brimming over with laments and tales of earnest teeth gnashing – almost worthy of including as a late addendum to the Book of Job – but i just want it recorded right here as well, that all these recent developments in terms of actual health treatments not just materialising but also being ‘delivered to my doorstep’ have been organised free of charge to me and also, not unimportantly, without any further stress or anguish required on my part. Kudos..
Onwards and upwards with the DSP claim ..
A bright and sunny day. Luckily just discovered I had a second bottle of Entacapone, the recent addition to the old Kinson, which is meant to stretch the working of the L-Dopa.
Sounds a bit like some Aztec war god, Entacapone …
Also need to forge ahead with my DSP claim. I just really want it to be ‘in the cyber post’ while I keep nervously waiting for the outcome of my application to access part of my superannuation. Just in case that turns out to be a non-starter, in which I will need to avail myself of another fata morgana to cling to.
Yesterday, enjoyed first session with the speech pathologist. It’s of course very helpful but also very interesting to learn more about how these processes really work.
Also managed to get registered with a new GP at long last.
Just keeping this update brief, it’s getting to a point where I’m just sick to death of the whole rigmarole. Yesterday, I had two key objectives; one was to get to a pharmacist who could witness me signing a statutory declaration as part of my application to access part of my super early, after which I would try to make my way to a post office to actually post off the hard copy form and supporting documents. My second goal for the day was to try and get a crisis payment from Centrelink.
In a way, both these goals were meant as a way for me to buy some time while I, God willing, prepare my final application for Disability Support Pension and then, hopefully, may be able to prove to the powers that be that my disease has now progresssed to the point that I can’t really be expected to ever earn a living wage again. Fingers crossed!
Long story short because it sickens me. It’s always the same, and I am starting to think people assume I make these things up or something. My fantastic social worker on Thursday had filled out the form to apply for a crisis payment and she also had helped me finalise my form to apply for the early release of part of my super.
Made my way to CL in a good mood, got told, ‘Sorry, it’s not a crisis unless you’re being thrown out of your home.’ I told the CL staff member, ‘I may have to steal something in that case, or perhaps I can try and sell my blood somewhere.’
I knew then that I’d be walking home again from Gosford.
Luckily, I’d seen a post office on the corner of the same street. A very kind and helpful man – I find almost all post office staff in Australia extremely helpful and polite – witnessed me sign the stat dec and helped me secure the big envelope with my last chance of reprieve, to be able to have a slither of my own money – my super, which really I need now, not in ten years time – and on his recommendation, I paid the extra $0,50 to make sure it arrives on Monday and not in a week’s time.
I also paid for tracking. The total was about $7,50, which was fine as it’s going to make or break me, the outcome of this request to use my own money when I need to.
He said, ‘Good luck Sir, I hope it all goes well.’
My budget for the day having been $10, I sent my social worker a quick SMS to let her know for the second time in a few weeks, I’d be walking back home from Gosford. Not that this was in any way her fault of course. But as I now think no one really takes note of this website – some weirdo’s mad ramblings or something – I just wanted her to know.
Very anxious and depressed. Mostly still related to my dire financial situation. Tomorrow, the social worker will be coming over to help me fill out some forms for DSP claim etc.
I just don’t know how I can last. There is so much fabulous help – very tangible help – coming my way, but how can I stretch the Newstart until I get – God willing – a favourable outcome on the DSP?
Still, we carry on living on vapors and of course always on a wing and a prayer. This afternoon, a speech therapist is coming over and hopefully she may be able to also supply a report that I can use for DSP, NDIS etc.
I don’t want people to think I’m always complaining. I find it amazing that all these health care people are coming over to my place for a start. And I can see the dim lit outline of some good things appearing in the not too distant future.
I just pray I can keep hanging on that long. I did today tell M. Edmonson the Parkinson’s NSW nurse, to never contact me again. She’s been sending me ‘helpful’ emails now. A few weeks ago, when I reached out to her repeatedly for help while in a state of mortal anguish, she chose to ignore me completely.
Feeling quite anxious, that kind of impending sense of doom feeling. I question my every move and thought and feel as though everything I do or say will inevitably be misunderstood, twisted or used in a way I never intended. Could be just a temporary increase of the old innate paranoia.
Dr Whyte did warn me that during this process of trying to balance my meds out once and for all, or rather for the first time done properly, my mood might dip unexpectedly.
Also, both PD nurses who are keeping an eye on my progress with the meds, remarked how incredibly sensitive to the PD meds I appear to me, with far greater fluctuations between on and off periods, freezing and dyskinesia et cetera.
But I am also noting some positives. The idea of the meds is to find the optimum way to avoid ever having off periods, something that is so tricky to get right, so to start taking the next dose before the current one has worn off completely. In theory, achieving this kind of equilibrium could provide some modicum of a quality of life that has so far eluded me altogether.
Yesterday, a far quieter day for me, I found that for the first time ever, I did indeed manage to slide from one dose to the next without any hiccup. I can see how this is worth working towards. It was a wonderfully calm and soothing experience.
A very good first visit with two members of the Allied Health Team here in Gosford / Central Coast. What a breath of fresh air. These health practitioners actually took the time to come visit me in my home and made me feel comfortable and relaxed, enabling me in turn to notice that by the end of the enjoyable first meeting, my voice and speech capabilities were once again calm, strong, confident and clear.
Now, at last, I know I can trust that after this shocking rollercoaster which kicked off in December 2016 and has seen my wife and me spiral into a horrific downwards vortex, a truly infernal whirlwind from which both she and I, now separated, are only now scrambling to find our way forward.
I know I’m not yet out of the woods by any means. And, interestingly, my downfall is often my innate optimism rather than any inclination towards doom and gloom. But after having knocked louder and louder on countless doors in as many offices belonging to a myriad of nice, sympathetic but ultimately helpless medical and Centrelink staff, today and ever since I rocked up a few weeks ago in the ED at Gosford Hospital, now I’m meeting nice, sympathetic support staff who actually understand and CAN and DO help.
That’s all I ever wanted. I know I’m no walk in the park and don’t fit any standard bureaucratic mould. Still .. today is a good day.
Quite a bad night with little sleep and a lot on my mind. Tweaking the meds further, if I can just get rid of that fear of freezing without losing ground on my speech which, Thank God, is improving.
It’s quite nice to see that people are actually hearing what I’m saying. Feel like writing but there’s so much to do and I must keep limiting my social media time.
I always feel like the things I’m sharing or perhaps the way in which I tend to do that, often make me feel like some kind of freak.
Sometimes it’s just more peaceful to be a stay-at-home freak.
Talking to an old friend a while ago, I remembered that, growing up, I could only envisage two occupations that might possibly suit me in later life; one was being a writer, the other career path was that of being a lighthouse keeper.
On the bright side, a first home visit by a physiotherapist is scheduled for today.
Following my last appointment at the PD clinic, where I flagged the fact that although the dyskinesia had all but vanished and also that i noted my speech improving significantly, the unpredictable freezing episodes remained a problem, I’ve been recommended to add another drug to the Kinson to try and stretch the effect of it.
Difficult weekend with the bloody freezing incidents catching me out. I find them terrifying.
So, am upping the Kinson slightly. I just don’t have the time to put up with the freezing – also since that excruciating fall in town last week.
Am seeing Dr Whyte again tomorrow. A physiotherapist is coming over on Thursday, so I’m happy to see some excellent treatment and support materialising at long last.
Am also hoping to fire off my DSP claim this week, and also to sign up with a new GP recommended by Dr Whyte.
Day 2 of Prof Scott Whyte’s suggested new Kinson trial – bit tougher than yesterday but had been warned of fluctuations. Also woken up at 4am by police shining torch light into bedroom, knocking on door and looking for apparently troubled son of upstairs neighbour who was taken to hospital earlier this week following a fall.
Managed to collect recent GACT reports from Wamberal surgery. Reports should help towards DSP claim. Had SMS from Julie from GACT asking if I wanted home visit tomorrow Sunday at 1.30. agreed.
So far a quiet enough Saturday.
Day 1 of Prof Scott Whyte’s suggested new Kinson trial. – am excited as I now understand reasoning behind this approach – also finding speech, mobility improving and dyskinesia abating – no sign yet of upstairs neighbour
Upstairs neighbour just taken to hospital in blood stained PJs. She had a fall – Bus late so missed appointment to arrange for free glasses.
Excellent first consultation with Prof Scott Whyte and his team following appointment being brought forward on Prof Whyte’s request following my despair at lack of support.
Agreed on new Kinson regime to combat dyskinesia and will present sans meds ingested on Monday at 10am. apprehensive about that but can now at least get uber instead of bus.
Following disappointing GP appointment and still no word from Margi Edmonson from Parkinson’s NSW, decided no longer to deal with either. Margi is the nurse – missing in action for a while now – who works at Parkinson’s NSW and who is meant to have the magic touch to get PD people onto NDIS etc. She has been sending me to specific assessments in order to collect the reports to file another claim for NDIS. haven’t heard from her in a while. the fact that more than a week ago I was ready to have myself committed obviously didn’t raise any alarm.
This to me, is the real problem. That luxury on the part of the experts to be able to adopt such a casual ‘Oh, really? ‘ approach. ‘Dr Mosely said 80,000 people in Australia were currently living with Parkinson’s disease.’
“These types of addictive behaviours affect one in six people with the condition, so it’s huge really,” Dr Mosely said.
Monday, 1 June 2019
Today’s consultation with neurologist no.6 was a prime example of why I always prefer to deal with female service providers. Talk about a frosty reception. Must have graduated from the Dr Mengele Charm School of Advanced Bedside Manner. ‘Want to make an appointment in a month’s time?’ – ‘Nah, think I’m washing my hair that day..’