It’s Monday, 7 August and I’ve been thinking about the UK’s #NHS…and me…

 

As most of you, who have read some of my previous blogs, will realise, the past 11 years have been something of a journey into the world of ill health and disability.  While the labels for what ails me evolve as new symptoms emerge/collide with what already is, making the process one-step-forward, two-steps backwards most of the time, the reality of my situation remains barely changed but, somehow, I continue optimistic that I will, at some stage, emerge out of the occasionally horrendously dark tunnel into a life where all that is wrong is identified, fixes have been found for what can be fixed and, as with my new totally neurogenic bladder and continuing-to-fail digestive system, what can’t be fixed can be managed symptomatically (albeit with gadgets as well as drugs!) and new or changing symptoms aren’t just dumped into a bucket of comorbidities.

Still waiting after EIGHT months for a cardiology outpatient appointment

Since my hypertensive/haemodynamic collapse in September 2016 I have had two tests, an EKG – revealing minor damage to the apical heart muscle (vs an EKG in January 2016 when “nothing was wrong”) a small PFO (presumably present since birth) and LVH (signals one side of the heart has been working too much for quite a while) – and a cardio-angiogram which revealed the four main cardiac arteries not currently needing stenting.  I have, however, had my driving licence suspended since that collapse and I am still waiting for a cardiology outpatient appointment despite referrals from two neurologists (1) my fabulous chap who determined my neuro symptoms weren’t Parkinson’s disease in 2015 (see previous blogs) who has gone to be an academic in Canada (2) his successor who sees no identifiable neuro disease process to treat, but agreed to chase her predecessor’s cardio referral and will see me next year.  My wonderful GP has been chasing too, and was initially told there was no referral, then that there was a referral but nothing had been done about it and, three months ago, that an appointment would be made as soon as possible. Still nothing has happened so the GP is chasing again.

I continue to have spontaneous hypertensive crises, both with exertion and without, where my BP ramps up and keeps ramping up to mega levels, requiring me to zap it with GTN as much as I can, while thinking all the calming, mindful thoughts at my disposal, and praying that things will calm down again.  There are no obvious triggers for the non-exertional rampings, except, it seems to me, heightened brain activity!  Take my BP before I start knitting (see my Knitting Page) and then after about half an hour I suddenly realise there is pressure building and, voila… BP is on the hike.  The same is true when I am typing, drafting a letter, designing/making graphics for @Sailonline or even just watching TV.  Exertional crises I can understand and with GTN and my raft of cardio/BP meds, I pace myself – my walking remains horribly slow due to neuro stuff and newly-worsening arthritis, and I do my best not to get excited or over-enthusiastic – and this seems to work.

I may never drive again – can I sue Jeremy Hunt?

It is nearly a year that my beloved ancient Saab has been standing in her garage… I may never drive again as, by the time “the system” (horribly underfunded and overstretched crisis-management-only NHS) gets around to me I will probably be unfit to drive.  Can I sue Jeremy Hunt?  He has deep personal pockets that are, allegedly, benefiting quite nicely from how our country is being/has been privatised.

Am I a Pollyanna, or just hopeful

BUT in spite of how things are, still mostly housebound, some weird almost Pollyanna-like spark of hope remains …

If it didn’t sound too gloomy, though, I would probably call this post-Parkinson’s Disease (I still have parkinsonism!) era of my life the “Black Knight”.. not in any way meaning to sound dark or gloomy but in the Monty Python and the Holy Grail way!  Do you remember the scene?  Arthur and his servant are coconut-clip-clopping into some woods and a huge black knight stands before them blocking their way.  He challenges them to fight him and, piece by piece his body is reduced to just a mostly-dismembered torso and talking head.. .but as they clip-clop away he still shouts a challenge.  As everything that I was disappears and my “system malfunction” continues to erode my quality of life (or heads into sudden crisis) I am still shouting a challenge!  I am still me… really, I am … most of the time… well I try to be!

Finding the positive …

When my “journey” started I was lucky to be pretty OK with who I was and how I was living my life – nothing particularly remarkable but it was good.  Since 2006, however, pretty much everything that I considered the real me has been eroded, changed, modified beyond belief and I am left with what drives me.

I am pretty adaptable and occasionally even surprise myself at how I adapt to what is occurring, when I competently switch my suprapubic catheter tube from one side to the other and admire my self-made anti-skin-erosion device –  but there are times when I really do miss being the person and having the life that was mine until 2006, and I do occasionally ponder on what might have happened without the fateful anaesthetic, before returning to living this journey.

See me as I am, not as you expect me to be

Just as those living with a cancer diagnosis are hoping that folks will stop using the word “battling” in relation to their life-altering experience as it implies if you die then you lost a battle, so I am just wanting everyone I come into contact with, especially medical professionals, to stop trying to box me into being something I am not, and rather to work with me to find the best possible solution(s) for my situation.  I don’t want to be told I have “complex comorbidities” as if that justifies doing nothing – don’t you think I already know that?  I need to be accepted as I am but… that is a luxury that our wilfully underfunded, understaffed, overstretched NHS just cannot do.  The best one can hope for is that a rough sense of my bowel, bladder, neuro, haemodynamic “stuff” is on board – but it rarely is.

NHS stretched gossamer-thin – on purpose

My recent 12 days in hospital has completely opened my eyes.  Doctors on wards are spread thinly and in this era of going-by-the-numbers there is no time for them to learn or practise the art of medicine.  Gone are the days when something puzzling, but clearly happening, is considered in a wider context.  It either is a readily identifiable “thing” or it isn’t and what dictates the outcome is often a single test result taken randomly rather than optimally.  If it isn’t a “thing” then it is as if your symptom doesn’t exist, a page is turned and it is back to you and your GP (if you are lucky enough, like me, to have a good’un!) to start again.

Safe qualified nursing staffing levels are history

Wards have too few qualified nurses.  HCAs are sweet people but it is more than scary when you are having a ramping hypertensive crisis and need help, someone saying “oh I’ll tell a nurse” while cancelling the call bell it has taken every ounce of effort to reach and press, and then waft away to leave you in increasing chest pain/discomfort overusing GTN spray in a desperate attempt to avoid either cardiac arrest or stroke (the only cardiac diagnosis made last September was unstable angina).  It is actually terrifying to know that had my hypertensive crisis that day led to cardiac arrest I would now be a statistic – not because the medical staff don’t care, far from it, they are all working absolutely flat out just to manage major priorities.   I had two such crises during my 12 days in hospital, each time there were too few nurses and it took several hours for the on-call doctor to be able to prioritise me, and requested tests were just never done.  The subtle effects of one of these episodes (worst searing head pain ever, loss of right eye vision and inability to use right arm) has symptoms easing but continuing with an almost constant sleepiness, a tendency-to-droop right eye and dribbling out of the right corner of my mouth .. BUT I SURVIVED!!!  I wonder how many people actually don’t?  On a ward of 20 acute medical patients there were two BP monitors… on the night I had my first hypertensive crisis I was hooked up to one of them, for about an hour, then, because the second machine had gone u/s and I was still capable of talking, albeit with effort, it was disconnected and taken to someone deemed worse off than me.  As I lay propped up with my eyes shut, unable to move  – chest, arms and head felt leaden-weighted as if I were pulling too many G –  I began to see the smiling faces of dead relatives, dead friends and even my beloved gone-to-the-Rainbow-Bridge dog, MrK… it was a nice feeling, very calming, they were very inviting and asking me to join them.  Semi-regretfully I declined their invitation and instead, inside my head, asked them for help to recover.  I was alone, with a call bell tucked into my hand “in case it gets worse” for the duration of this episode.  At this moment, fortuitously, the many-hours-previously paged lone on-call-for-the-entire-hospital junior doctor arrived and I was given loading doses of all sorts of things and… lived.  Serendipitously, he had been in A&E in September 2016 when I was blue-lighted to the hospital from my GP’s surgery with my first hypertensive/cardio collapse – I think something/someones were looking after me that night.

Economic cost  to nation of delayed diagnosis and treatment

Delaying patient diagnosis and treatment must be costing the country a fortune – I am not currently able to work and I am still a few years from retirement, but I had a super-full healthy working life for decades.  If I were a young person now, with family commitments, how wrong is a system that expects me to find work, hold down a job, or support my family while coping with the strain of having to wait weeks and months for safe and reliable treatment, such as that only provided by the NHS (or by private hospitals affordable by the super-rich) – make no mistake, private health insurance companies are in the fast turn-round grab-your-money bank-the-profit and forget about comorbidities business.

Recent governments have, as most should realise by now, been wilfully dismantling the structure of a publicly funded, publicly provided National Health Service so that they, their cronies and those who influence them may grab profitable “health business contracts” and, essentially, steal public money – or is it defrauding the British public?  Either way, the nation is not benefiting and, it seems, successive governments are completely indifferent to the destruction and havoc they cause.  The sooner a new medical/health issue is diagnosed and treated and someone given support to return to full fitness/health, the better it is for a nation.  Having people wait weeks and months for appointments and tests and then test results and even then finding that their local area doesn’t support a particular treatment OR, worse, the alleged treatment turns out to be another private company providing another utterly shabby and unfit for purpose service (in the name of the NHS of course) is NOT a public health service.  (NOTE:  my target for this comment is a private physio provider that completely missed a majorly torn vastus lateralis last November despite my stating plainly that the explosions of pain on injury were in three places – lower back, groin and front of thigh.  This has resulted in my severely arthritic knee, caused by years of walking/riding etc etc, now becoming unstable and my formerly go-to stronger right leg becoming completely unreliable!  I am now referred again to them but… I cannot be seen until September.  Hopeless.  Thank goodness for Google and my discovery of kinesiology tape that I use prior to trying to go for a walk!).

We are being ill served and I am very angry about it – I want a properly funded and managed public health service – SERVICE… not business … a service ensuring the health and well-being of the UK as a whole.

Why company/personal private health insurance won’t help in the long term…

I am also angry about those currently in work and in relatively good health who benefit from private health insurance – why?  Because they fail to engage in the reality that is the dismantling and fragmenting of the NHS … but at the same time complain about it if they can’t get a GP appointment precisely when it suits them.  What is worse, these same individuals appear not to realise that the small print of their private health insurance policies may well exclude them from private treatments in the future if, as happened to me, even with a fully underwritten policy, conditions are deemed chronic and/or pre-existing in some way.  The benefits of a corporate private insurance policy can only continue as-is if you transfer the policy to an underwritten personal one with the same provider, otherwise a new employer/new corporate policy may exclude aspects of previous cover under special conditions.

The only people who may never need the NHS are the super-rich.

Finally I will leave you with this image – just as a reminder of what good government is meant to do:

 

 

If you haven’t yet visited my website, please do so.

My Website

@joannekarma
#RCtheParrot

1st Anniversary of My Life After Parkinson’s

Headline

What a difference a year makes…… or does it?   This first anniversary of My Life After Parkinson’s finds me still here (hurray!) but alas, my situation is mostly unchanged (boo!).

Bullet points

 What is still keeping me mostly housebound?

A combination of Neuro and Gastro issues with added skeletal damage and decay.

What am I doing to change the current status?

Everything I can think of to manage symptoms day to day and to work with my doctors to try and find long-term strategies that will work!

What are my goals?

To find a way to overcome gastro and neuro issues so that I can once again try socialising in reality – even for just a few hours – without requiring days of on-bed recovery thereafter.  Longer term? to figure how to get away from home for more than a few hours, of course!

Can it be done?

I’ll be giving it my best shot, as always.

Narrative

I am very thankful that I appear to have inherited my late mother’s innate resilience in the face of adversity and, even more importantly, her sense of humour when all appears to be heading to worminess.

I also feel blessed that I not only have access to social media and the internet, but that there are folks I know there, as well as in reality, who choose to stay in touch with me and let me share in their adventures.   No longer being eligible for the support of Parkinson’s charities did leave me feeling quite alone, so without social media, I have no doubt that my mental health and overall well-being over this past year would have been seriously in jeopardy.

Twelve months ago I was writing the joyful news that my neuro diagnosis was no longer one of Parkinson’s Disease.  I remain more than joyful, of course, with that diagnosis-reversal, but part of me is feeling somewhat thwarted that NewNeuro’s predictions with respect to neuro issues are coming true.  He did warn me not to expect improvements and so it is that most neuro “stuff” is unchanged, a few new issues cropped up during and following the parkinsons-drug withdrawal in the summer and autumn of 2015, and some symptoms have deteriorated.

Only in 2015 did I learn that that parkinson’s drugs are only for the motor symptoms of Parkinson’s Disease.  Since the 2006 diagnosis I had been wrongly attributing my entire battery of motor/non-motor symptoms to “parkinsonism” and expecting the medication to improve things.  When I was diligently reporting all symptoms I considered neuro ones to OldNeuro each visit,  I suppose I expected to be told precisely which were/were not associated with the diagnosis.

It is clear that I expect(ed) too much!

NewNeuro seemed quite shocked at this state of affairs – for all my knowledge about parkinsonism and the actual management of my neuro situation, I just hadn’t grasped two fundamentals (1) if Parkinson’s drugs don’t improve mobility they should be withdrawn (they aren’t toxic but they have many adverse side effects), (2) if, within 10yrs of symptoms showing and a diagnosis being reached, there is no significant (wheel-chair needing) disability developing then the diagnosis is unlikely to be Parkinson’s Disease.

I hadn’t known this.

I suppose because my life was so taken up with just getting through each day with so much happening, so many aspects of me appearing to go through some kind of system failure – from vision to hearing to digestion to movement to tremor etc., I just wasn’t capable or equipped to step outside the situation and (re)appraise it.  The seemingly endless personal admin involved with disability and finances, and even just trying to cope day to day (not washing and not having clean clothes is not an option, oddly enough!) was, and remains, very tiring – mentally and physically!   To cap it all, I used to sleep in 2hr stints as my body was so stiff it didn’t turn over while I slept overnight, so would wake me to turn over … sleep deprivation is a form of torture so… bad bad me for not cottoning on that there was a bunch more going on than neuro-dysfunction/parkinsonism.

To be fair, though, when I met with others living with a Parkinson’s Disease diagnosis, we all had the same issues and went about things the same way, even recognising what we were doing and why, so maybe I shouldn’t be so hard on myself and expect me to have figured out that the diagnosis was in error.   Deep down, of course,  I had always been praying that I didn’t have Parkinson’s Disease and referring to it as “my form of parkinsonism” and, maybe if I’d never accepted the specialist’s recommendation to start medication early, I might now be in a very different situation altogether.  No point in “what-iff-ing”, though – it is what it is.

These days I am happy to say that I am sleeping a lot better (at least 4hr stints) and my mind is continuing to clear and sharpen up since my last dose of Stalevo on 25 October 2015.  The Neuros said that the drugs would have been eliminated within a few weeks of this date but it seems to me that my clarity of thought took a lot longer (maybe due to my predisposition to only slowly metabolise drugs).  Who knows.

How I am now is what has to be managed!  I continue optimistic that against all odds I shall find a way to reverse neuro-plastic changes resulting from nearly a decade of unnecessary parkinson’s medication – at this point, we have no clue how I would have been without them (something pretty wrong clearly did happen to my brain function during the March 2006 anaesthesia), and we have no way of knowing how I will progress!

Identifying “Not Parkinson’s”

Having been warned by NewNeuro at the November 2015 appointment that my neuro situation might well be unchanged or worse after the parkinson’s drugs withdrawal, I have spent the intervening months since then trying to rule out alternative causes for my “not parkinson’s” motor and non-motor symptoms (chiefly in the hope of finding a “fix” for them!).   It turns out that multi-joint arthritis and sacral nerve damage from previous back injuries may well be causing the bulk of my walking and joint problems, compounded, of course, by neuro dysfunction (proprioceptive issues etc).  This is where my continuing gentle rebounding, theraband stretches, light weights, balance ball sitting and occasional MagnEtrainer pedalling comes in to play.  Tinnitus, auditory processing disorder and mild hearing loss are not due to neuroma and, together with other non-motor symptoms without an organic explanation are evidence of brain dysfunction/neuro-plastic changes.

A Life After Parkinson’s does not mean a life with no neuro- /parkinson-like symptoms!

At the November appointment NewNeuro said he would refer me to a different physio/multi-disciplinary team at another London hospital that specialises in neuro dysfunction.  The referral went through and I recently got a date for my first appointment  at the end of June.  I will see New Neuro after that and see where we go from there.

Gastro Status

Gastro problems are more wide-ranging than previously thought – yet again recent test results have supported my reported symptoms but there is no quick fix.    My Gastro Dude is, however, once again writing to the Prof at Bart’s (who ran the original battery of lab tests in 2013) to see if research and academia has anything else that might help me.  If it doesn’t, then how my life has been for the past three years since the pseudoobstructions first rocked on up is, as Gastro Dude has said, likely to be the best it can ever be.  Apparently, so long as (1) I have gastro output (or should it be throughput?!!) as a result of drugs and dietary therapies, (2) problems (organic and functional) have been identified and are being managed and monitored and (3) nothing sinister appears to be emerging, then Gastroenterology has achieved its purpose!  GastroDude told me that he has already put at my disposal the best chemical “weapons” to be used as/when I require them and, luckily for me, my GP is able to prescribe them (SEGUE: with our newly restructured/semi-privatised #NHS following the 2012 Health and Social Care Act, CCGs across the country lay down different commercially-based rules for what GPs can and can’t do and prescribe – it is no longer about the best care/treatment for the individual)

Conclusion

As those of you who keep in contact with me via Facebook and Twitter already know, on this first anniversary of my Life After Parkinson’s, I remain very involved with the day-to-day running of @Sailonline, following the exploits of @SolarImpulse and keeping tabs on the worlds of the Shiba Inu and Tiger!  I knit and crochet for charity (see my Knitting webpage)and occasionally inflict homemade items on chums.  Thanks to the TV and internet I keep up to date with  all the mainstream cooking competitions (Masterchef, Bakeoff), follow avidly “my” crime dramas, keep tabs on environmental issues and what is happening with the UK’s #NHS.  My Kindle remains my constant companion for all those occasions when reading becomes a possibility!  I also maintain myself and my wee hovel (one day I vow it will be civilised again!) albeit it only a little every day.  I am doing OK.

I shall conclude by asking you all to bear with me if I indulge occasionally in grumpiness .. normal service will always be resumed!

Happy 1st Anniversary of My Life After Parkinson’s!!

JC_Jul15_crop

 

 

 

 

 

If you haven’t yet visited my website, please do so.

My Website

@joannekarma
#RCtheParrot

78 days… and counting…Life after Parkinson’s

It is now 78 days since I announced my Life After Parkinson’s.

For me, right now, as I sit here on my bed, contemplating my day (which will include Sailonline admin-ing and racing, as well as getting to the post office with another knitted cotton prosthesis for KnittedKnockersUK), I am sharply reminded of one of the major differences between life as a relatively healthy person, and life for someone coping with the uncertainties of disease/disability. This is the ability to make plans, to set deadlines.. make commitments.

My life with parkinsonism was consigned into my history 78 days ago, when my spirits were released from the psychological cage of that diagnosis.  Along with undoubted joy in the sense of once more having a “future” is the need to be able to make plans, to agree to meet people or have them visit me, to be able to engage in conversation/socialise, physically sit in a cinema to watch a movie, to get on with living outside of virtuality!

Most of the motor and non-motor symptoms that I have lived with for the past 9 years are continuing, as NewNeuro said they would.  As I reduce the parkinson’s medication, though, logic dictates that those symptoms listed as side-effects should diminish but, nine years of chemically altering my brain’s functionality and the “soup” it is bathed in, means that no-one can be sure of the outcome.

To be told to expect no improvement and possible worsening of current neuro symptoms and the arrival of new ones is definitely challenging, so, typically, I do not wish to accept it while already re-strategising how I will cope.

***CURRENT GOALS***

My aim in the short(er) term is to find a way to manage those symptoms that prevent me getting out/about and physically engaging in the world, as well as those that prevent me from reorganising/managing my wee hovel.

In the longer term I wish to be able to make plans again!  Realistic ones that I know I can keep to, without my having to suspend eating/medication and risk bowel obstruction.  Plans that can happen without my having to ensure a “safe” destination.  Things I can do for more than half an hour or so, before I begin to feel unwell.

Meanwhile….there is some good news!

I think my senses of smell and taste are returning!

Why do I think this?  Well… the other day I smelled accurately for the first time in about 7 years!  It sounds peculiar, maybe, but when you know how something should smell and have spent recent years not smelling anything or smelling something foul instead, to smell a genuine, recalled aroma is a real joy!!    I actually did smell the coffee (after I had made it!).  AND a couple of days ago I could also taste lemons in some lemon curd!  I know these are only random aromas/tastes but it must be a sign of some kind of awakening!

At best it will be another 12 weeks or so before I am completely weaned off Stalevo.  At that point, there will be a better sense of how I am going to be and, hopefully, I should be able to develop strategies to get back into the real world more frequently.

So…. watch this space!

@oannekarma
#RCtheParrot