Rising above it all .... - Jottings on serendipity and its evil cousin, adversity

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

Sections
Still waiting after EIGHT months for a cardiology outpatient appointment
I may never drive again – can I sue Jeremy Hunt?
Am I a Pollyanna, or just hopeful
Finding the positive …
See me as I am, not as you expect me to be
NHS stretched gossamer-thin – on purpose
Safe qualified nursing staffing levels are history
Economic cost to nation of delayed diagnosis and treatment
Why company/personal private health insurance won’t help in the long term…

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 state pension age, 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

#ourNHS – fragmentation of care with private providers

Backstory

I love the UK’s NHS and use #ourNHS as my hashtag of choice most days.

This is a personal narrative based on recent experience.

When a catheter becomes a necessity…

In November 2016, I wrenched my back and hip pretty badly, even for me, and after being advised by GP and physios to take myself to A&E, I did so in early December. After a couple of days in A&E/CDU my problems ranged further to include a significant worsening of my already wild post-Parkinson’s-drugs urination problems which now ranged from outright retention to the zero control of a newborn. An indwelling urinary catheter was installed, removed for a “TWOC” (no, not a taking-without-consent of a motor vehicle but a trial-without-catheter!) and re-installed and I was sent home with the advice that community nurses would contact me and be there to support me in managing this new experience.

As always, I focus on the positive and think about all that I have to learn about the world of catheters which is a mystery to me at this point!

I meet the Community Nurse(s)…

Three days later I was called by the community nurses, a service provided these days in my area by a private company, and an initial home visit was arranged for the following week. The nurse who attends me on this, my first ever interaction with community nurses, tells me she has had no dealings with urinary catheters since her initial training – her expertise is in wound care. I appreciate her honesty but feel somewhat concerned that she should have been sent to a new patient with their first indwelling urinary catheter. As I have been googling for some days to try and figure out how to manage my catheter and its tubes and bags, as I am determined to come to grips with this extra nightmare, I had actually been hoping for someone to review what I was doing and advise on anything that could be done better. I realise that this very pleasant individual is in no position to be of direct help to me, and wonder why she was sent and how much this non-visit is going to cost the local NHS budget.

…a scrap of paper…

We sit down (well, I loll on my bed / centre of operations and the nurse sits on my bedside chair) as she has brought some paperwork – a couple of forms, it would seem. I establish that the only information she has been given about me on a scrap of paper is my name and address and that I have a urinary catheter. She has no knowledge of my medical history at all and starts by asking a few ridiculously basic questions. I find this all very puzzling – this is 2017 and all this information is readily available at my GP practice and with the two hospitals I attend (which are part of the same #ourNHS Trust). Clearly there is no interconnection of records or even basic data and it dawns on me that while such a situation would be unacceptable in a 21st century public health and social care system, this nurse is, of course, working for a company that is no more part of #ourNHS than my mobile phone provider!

My visitor jots down my answers on one of the forms (apparently the wrong one for a new patient but it is the only one that was available that morning), is not interested in noting any information other than that relating to the catheter (date installed, make, model number etc) which is, presumably, the “billable task”. There is no inspection or check made of the catheter itself, but as I am now the catheter expert out of the two of us, that doesn’t really bother me too much.

… I am patient # x of a list to be seen that day…

A week later, my second Community Nurse contact is by way of a phone call from someone else to check that all is ok and then, a week after that a different nurse turns up at my door, without any advance notice. At this third visit, the nurse is clearly expert, tells me that the nurses choose when they work, as many also work in #ourNHS or private hospitals, and on any day are just given a list of who they are to visit by the company providing the community nursing service in the area. There seems to be no “team” as such – I don’t press for more details as I don’t wish to appear critical, but this is very different from the team of nurses that helped my mother in her last months 15yrs ago. This nurse is impressed with my “process” (there’s a lot of handwashing and bag-maintenance and leg-strap wearing associated with catheters, believe me!) and tells me that I won’t be visited at home again. If I need help with the catheter at any time, I am told to call the general number and someone will be able to help, or if something appears to be brewing as an emergency, then I should take myself to A&E. It is an odd feeling to realise that the nurses who did come to see me will probably have no memory of even meeting me, as I was merely #x on their list of people to see that shift. There is no sense of continuity. Each visit has been like a supermarket transaction, imbued with no more compassion or care than checking out one’s groceries.

…so far so good? …

At this point, however, my priority is trying to manage the catheter, so I am pleased that my muddling-through appears to have led me to do things correctly, but I remain concerned that it really has been up to me to get to this point as best I can. There is huge discomfort and abdominal pain, heaps of bypassing and I am feeling more actively unwell than I have for a while as, in addition to everything else, my back, pelvis, hips and knees are protesting because the discs I slipped in November (which didn’t need neurosurgery) are stuck half in/half out of place and attempts at exercise just make my joints yell.

…we expect everyone with a catheter to have an infection…

Weeks pass and I begin to be concerned about a possible UTI – I really feel rotten a lot of the time and dipsticks I have bought indicate lots of things are not normal, so I call the Community Nurses and after a few days of telephone tag get to explain the situation and am told that a nurse will visit to take a sample to be sent away. A week later another new-to-me nurse arrives and proceeds to do a dipstick test. I presume this must be a precursor to taking a fresh sample from the catheter port to send away and imagine the sample kit must be very small because she’s only wearing a coat and is not carrying a bag of any kind. The dipstick shows major changes in colour along the strip, as I suspected it would, but the nurse then tells me that this is all normal, that everyone with a long term catheter has a permanent infection and there is no need for sample taking, which is convenient as she hasn’t brought a sample kit with her. Unusually for me, I refrain from commenting (my excuse is I was feeling too rotten, OK!). But I really wanted to remind her that the purpose of her visit was to take a sample, to tell her I’m perfectly capable of reading dipsticks myself and that for me to go out of my way to seek help would suggest I must be feeling pretty unwell. I say none of this, but I do mention feeling more unwell and uncomfortable than usual and that I am concerned at how bypassing is causing BP spikes and transitory chest and arm aches (worrying to me because of my chest pain/ head-pressure emergency in September 2016) and that the chest ache occasionally needs GTN spray to resolve it. I am told, efficiently and positively, that all this is completely normal and I am not to worry.

But I do.

If my chest/arm pains, discomforts, spasms and BP spikes triggered by the bladder/catheter are all “normal”, then why aren’t they findable via Google? Everything else to do with urinary catheter stuff is there… but I tell myself not to worry. In extremis, I know my utterly brilliant GP will be there for me.

…the potential to be amazing is irrelevant…

Ultimately, of course, if I become horribly unwell and then a mere statistic, the Secretary of State for Health and his Government can rejoice that their shameful underfunding and fragmenting of #ourNHS has one less chronically unwell/disabled individual to deal with. I believe I still have the potential to be amazing as an individual and perhaps even may be able to improve my physical condition with the right support and investigations, but these factors and my well-being are entirely irrelevant to this current system.

…urodynamics … outpatient clinic urine test …

In January 2017 I have urodynamic tests which reveal severe neurogenic bladder dysfunction and some structural issues but … I get a bonus catheter change by an excellent urogynae nurse. This means I have until April before I need invite the community nurses to intervene, as urinary catheters are left in situ for 12 weeks in my part of the country.

Then in March 2017 I have an out-patient clinic appointment where I am asked to provide a leg-bag sample which is dipstick tested. I am told that the stick revealed anomalies so the sample will need to be sent away for analysis. I thank the nurse who tells me this, and she is surprised when I mention I had been concerned for weeks about my own dipstick results but told to ignore them. Even now, though, the sample being sent away is the one I gave from the leg bag, not a fresh sample from the catheter port itself, but as the hospital I am attending is one of London’s top teaching hospitals, I have to assume they do know best! The specialist I saw is adding me to the waiting list for a suprapubic catheter and prescribed some meds for “system maintenance” which I hope won’t have too many side effects, as my system is prone to react atypically to prescription drugs.

…I would prefer a robot to change my catheter…

Hopefully, I can learn to change my suprapubic catheter myself in future (the first change will be done in outpatients), although right now, the thought of removing/inserting a tube in my own abdomen is pretty freaky, but the knowledge that a completely disinterested stranger under time pressure may end up doing it, without any awareness of me and my medical issues, is likely to overcome my concerns here. I think I would almost prefer a robot to such a person!

…continuity of care is history when #ourNHS is privatised and fragmented …

It is actually frightening to realise that so long as #ourNHS continues to be broken up, there will be no continuity of care, no assured level of expertise in those dealing with my catheter and every other issue going forward, no knowledge of my overall medical situation, which is complex, and neither the time nor interest in me and my comorbidities as the individual on any given visit will have no expectation of seeing me again. The same is true for everyone in a similar position.

…Chinese whispers and a sea of discontinuity…

If I find myself incapable of looking after myself completely independently, I have no doubt that I will be adrift in a sea of discontinuity. Each visit will be a brand new encounter, with assumptions being made about me, without any full knowledge of my medical history (what records are shared appear inadequate at best and otherwise, downright inaccurate). Should I get to the point where I am truly unwell and become reliant on these strangers in a fragmented privatised one-issue-one-provider system with notes fractured and spread in a fashion akin to Chinese whispers across umpteen different organisations, what will that do to my quality of care.

What is it doing now to peoples’ quality of care who are already reliant upon it.

For anyone relying on consistent medical care in the community this must be terrifying, with the burden of these inadequacies adding to those of our wonderful GPs who each represents a bastion of reliability in the whirlpool of chaotic medical agencies.

…the UK deserves the compassion and care of a single, uniform health and social care system untainted by the need to profit-take…

This, among many other reasons, is why as a lifelong-until-now left wing Tory, I have become even more outspoken about keeping #ourNHS as a truly public and not privatised service for the people of this country. While fit, healthy and busy working, I had no clue about the world of the sick, injured, chronically unwell, and disabled. It could so easily become a very dark place indeed, without the compassion and care of a single, uniform health and social care system untainted by the need to profit-take and healing for love not profit.

Post scriptum

20 March – I am called late afternoon by my GP surgery and told I need to collect a urine sample kit as the hospital advised on 17 March that the clinic sample was contaminated. I ask about how to do this correctly as I am catheterised, but get an “oh, I don’t know about that” reply. No-one seems to know anything! So… I Google for what to do!

21 March – I call Community Nurses /local healthcare company as I don’t think my tremor will let me stick a needle (even if I had one) into the catheter port and ask if someone can come and do this. I am told that someone will be with me “sometime on Thursday”.

23 March – a person arrives late-morning. She used to be a nurse and is retraining, and seems v sweet and kind, BUT it transpires that she can’t change the catheter (it has been in situ for 8 weeks now) and she also doesn’t have a syringe with a needle or a syringe of a size suitable for the port of any of the three leg-bag types I have to offer (despite the fact that the bag I have deliberately chosen for this week is one of those originally ordered for me by these very same “Community Nurses” so they would know which syringe would be needed!). The nurse-in-retraining tells me that she has been told that if no syringe works, then her “boss” has said that the sample will have to be taken from the catheter itself. I am somewhat surprised at this as the rule is usually that there should be no air/germs accessing the catheter and bag-change should be effected as rapidly as possible. My leg bag is disconnected and my catheter left to hang in the wind (well dangle into the sample pot) in the forlorn hope that some dregs can be caught. My catheter is completely empty and I explain that my neurogenic bladder no longer acts as a reservoir and will vigorously expel/by-pass as little as 50ml, so waiting for something to trickle out of the catheter may take a while. This doesn’t seem to matter and my catheter is left open to the elements for about 20mins or so. Less than 2cm is captured and a new leg bag then attached. Oh, and a dipstick test was also done to verify that the test was needed, notwithstanding the fact that the regional hospital had told my GP to order the urine test AND I have been reporting an extreme range of dipstick results since February!!!

If I didn’t have an infection before, then I probably do now!

It is all so time consuming, inefficient, unhelpful, stressful and plain wrong and wouldn’t happen if we didn’t have a fragmented/privatised health system. All this ridiculous to-ing and fro-ing is just for one urine sample to be taken correctly from one catheter.

I think I am going to suggest that the healthcare company thinks about providing a nurses room at the local medical centre, where their Community Nurse team is based, so that, perhaps one day a week, folks can make appointments for urine testing and catheter changing and other simple procedures. Quite apart from the convenience of having an appointment time (or they could operate on a drop-in basis), instead of potentially waiting at home all day, I really don’t like watching nurses put on gloves that have been stuffed in pockets that, for all I know, contain used tissues or car keys, or taken out of a medical bag that has been to who knows what pest-ridden dwellings before it gets to me!

I am so fearing my catheter change on 14 April….

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

My Website

@joannekarma
#RCtheParrot

Sail a Tall Ship from bed or armchair!

How about racing a Tall Ship from your bed or armchair?

If your imagination has ever been captured by the sight of a Tall Ship in a film or documentary, or even when reading Patrick O’Brien’s Aubrey & Maturin series, you will have wanted to experience sailing one.

This summer an online virtual sailing navigation organisation, Sailonline, will be sailing four different tall ships against the Class A vessels, like Jubilee Sailing Trust ship, Lord Nelson in the 2016 Tall Ships Races organised by Sail Training International.

Here’s the info from Sailonline:

Why am telling you all this? Simply because I have been a volunteer OPS Admin with Sailonline since 2010 and finding Sailonline, shortly after my medical situation began requiring me to spend my time mostly at home, has been like a lifeline to me. Whether you have been unwell for a very long time, or like me now, mostly at home and on-bed, after previously being out/about, working, travelling overseas and generally active in the real world, to find a way to engage with that real world beyond one’s doorstep while accepting the curtailing of “normal life” can be very challenging. Sailonline gives everyone with an internet connection access to the real world of sailing.

Sailonline is a free to play wind navsim sail-racing game. It has quite an old-fashioned UI, but this disguises a sophisticated and very realistic platform. By racing here, you can easily learn the basics of sailing navigation and even how to use routing software, such as that used in great round-the-world races, like the Volvo Ocean Race or the Clipper RTW Race. Routing software speeds up the manual calculation of chosen routes and fine tunes it in a fraction of the time it would take if you were to use spreadsheets or a calculator, which is why it is an essential for all yachties planning on venturing further afield than their local waters.

Sailonline uses NOAA wind files (Gribs), updated 4x a day and winds are fed into each race at 10min intervals so you really are sailing in as close to real-time conditions as possible. Many SOLers around the globe are sailors in reality, racing or cruising a range of boat types, although not many have sailed a Tall Ship, and frequently say that their nav skills have improved from racing on Sailonline. By learning about yacht racing on Sailonline, I can now happily eavesdrop (via YouTube/Livestream) on conversations between yachties and know what they are talking about!

As you can tell I am very happy to be associated with Sailonline, as without it I am sure, over the past years of being mostly housebound and unable to socialise or get out/about in reality, I would have been far less mentally stimulated and would never have dreamed of being able to (sail) race the world and feel part of a wider sailing community as I do now.

The Tall Ship series on Sailonline is a brilliant way for sailors / SOLers to experience just what it was like to sail the oceans in the early days of sailing and seafaring. You can begin to comprehend why harbours were built where they were and why ships sailed specific routes, not just by reading but by doing. For anyone interested in the history of ships and marine architecture, these races really shouldn’t be missed.

So do come and check it out for yourself.

P.S. something else I’ve been teaching myself to do purely as a result of Sailonline is … basic graphics! Look at the Sailonline homepage and you can see a little of my “work”!!

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!!

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

My Website

@joannekarma
#RCtheParrot

Nails… adventures with gel polish

Just before my birthday last year, as my parkinson’s drug-withdrawal was reaching its middle-point and I was beginning to realise that NewNeuro was right and that almost none of my symptoms were improving and some things were worsening to reveal the true state of me, as he had predicted, I noticed my hands and how bare and uninteresting they were.

I am lucky to have two of them that both work pretty well but, like me, they have become older and larger. When I was working I took care of them and even got the occasional manicure. Having slim hands with long-fingers was, if I confess it now, one of my secret “likes” about my physical self… is it wrong to admit it?!

So… August 2015 and “long and slim”, well slim anyway, has been consigned to history, my nails are unadorned, the hands beginning to show their age and my thoughts turn to nail polish. Thanks to tremor I haven’t been able to do more than blob toe-nails for years, so I would have to consider going to a salon but first would need to update myself on the world of nails.

I browsed the internet and discovered that there is a remarkable nail polish that is virtually indestructible – it is called gel polish and it is cured/dried using UV light. That sounded exactly the sort of thing I needed as, having become clumsy and often bashing into things, normal polish would be wrecked in days. The range of colours looked fabulous and fun.

On my next sortie to collect a prescription I passed a local beauty salon and… I decided to find out if they “do” gel nails. Of course they do, so I made an appointment as a birthday treat-to-me and, not yet being overly courageous on this first nail adventure, I chose a classic bubble-pink colour, with ring fingers highlighted with some glitter. When I looked at the end result, I remember feeling incredibly daring, while inside giggling like a kid, and being simply thrilled with the whole process.

First gel nails - August 2015 — First gel nails – August 2015

Because the gel is instantly hardened in 30 seconds under a UV light, the nails are good-to-go immediately they are finished – although, like many familiar with traditional polish, it takes a few sessions to program this new freedom-from-nail-protecting into one’s brain!

To have such beautiful-looking nails made a huge difference to how I felt about myself, so I decided to continue to have them done regularly (about every two weeks as my nails grow quite quickly). I have deliberately gone out of my way not to repeat, twice in a row, the same colour. In fact, I have only twice repeated a colour at all! What is also brilliant is that before gel nails, my nails had begun to curl slightly, but the gel polish keeps them beautifully straight, so when I now look at my hands, my nails, if nothing else, are as they were when I was decades younger! It’s such a joy!

My sense of fun, which is usually not far from the surface, truly bubbles on nail days! The night before I browse the internet for the latest colours and, based on whimsy alone, decide which colour might be next in line. On the day, the salon may well have additional colours, so as I always book the same super-competent beauty therapist, who has come to realise that I am a bit of a nut, outward appearances notwithstanding, we agree my new colourscheme!

I don’t often go out these days, but when I do venture out during these cold(er) months, bundled up and far from glamorous, I have such fun taking people by surprise when I remove my gloves and my crazy nails are revealed!

SO…. I have resolved that I should keep at least a visual record of my nail adventures from now on, and here it is:

January 2016 - OPI colour Russian Navy — January 2016 – OPI colour Russian Navy

February 2016 – OPI colour Louvre me Louvre me not!

February 2016 - OPI colour My Gecko does tricks — February 2016 – OPI colour My Gecko does tricks

March 2016 - OPI Gel Colour Show Us Your Tips — March 2016 – OPI Gel Colour Show Us Your Tips

7 April 2016 - OPI Gel Color Starry-Eyed for Dear Daniel + nailwrap from Tampa FL — 7 April 2016 – OPI Gel Color Starry-Eyed for Dear Daniel + nailwrap from Tampa FL

April 2016 - new style from new "manicurist" — April 2016 – new style from new “manicurist”

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

My Website

@oannekarma
#RCtheParrot

Knitting…crochet….for charities… for yarnbombs

As you will already know, if you have either visited my website or read the #RCtheParrot section of this blog, I am a relative newbie to the world of knitting and crochet.

Early learning of basic skills saw me leap in to various projects over the years and leap back out again as soon as they were completed.

It’s a very odd thing to say, but I have a diagnosis of a chronic, incurable condition to thank for my returning to the world of playing with yarns! If I had never developed neuro symptoms after anaesthesia in 2006 and found myself unable to work due to mobility, cognitive and other problems, I doubt I would have ever thought about finding ways to exercise my hands/fingers with knitting/crochet!! But I did and I did 🙂

Thus it is that in the summer of 2015, I have a small and simple repertoire but I have been told that what I make is well done – starting with knitting 4-ply wool socks, I now can knit or crochet small cardigans/jumpers, crochet motifs and flowers, knit cotton breast-protheses and, from other blogs and videos online continue to learn new skills. Without the events of 2006, I doubt I would have ever known what entrelac, mitre, and frogging all mean!

Knitting or crocheting for charities or charity events is a brilliant way for those of us who are mostly at home to keep ourselves well engaged with the outside world. The rewards I have found from making items for a world record yarnbomb at a children’s hospice in 2014, for a Woollen Woods event in Derbyshire this year, for Knit for Peace, for KnittedKnockersUK are beyond anything anyone could have done for me. These small items, which I choose to make, put me back in control, just a bit, of my life and, as an added bonus, helps others… truly a win/win!

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

My Website

My Website’s Yarn page

@oannekarma
#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

July 2015 – how am I doing? Life after Parkinson’s

It is not often that after living with and being medicated for Parkinson’s Disease for 9 years that someone is told that their suspicions of not having PD are confirmed. I am extraordinarily lucky as this happened to me in the late Spring of 2015 – see my announcement here

I appear to be heading into summer 2015 still mostly housebound, and continuing to be involved as Volunteer Admin with Sailonline , knitting for charities, following aviation/space adventures via social media, watching sporting events and my favourite crime dramas on TV etc., but with no clue what the future holds. No plans of any kind are possible and life is a day-to-day affair.

Once I am weaned off all parkinson’s drugs we will see. For now, having dropped 3 of my 8 daily doses of Stalevo, I am trembling/shaking more than I have done in 9 years and I have to sleep with windows and curtains open as I have become majorly claustrophobic. I have been warned not to expect my motor/non-motor symptoms to change much or improve but.. such “a paperbag future” is not one I propose to accept.

New Neuro has now revised his weaning-off-Stalevo schedule down from -1 dose every 7-10 days to -1 dose every 5-6 weeks!! Perhaps he should have paid more attention to my reminding him of my well-known lifelong sensitivity to prescription drugs before setting me off on a fairly radical path.

Having come to terms with what had been called an “exotic form” of parkinson’s, and developing a relevant support infrastructure for that condition, it is now very isolating to have that all completely cut away. I remain physically no different from a few weeks ago, but am now having to dig deeper than ever into my resources of self-reliance as I no longer “belong” (thank goodness!!) in the world of Parkinson’s Disease

The adventure continues!

@oannekarma
#RCtheParrot

Life After Parkinson’s – Qs and As

QUESTIONS/ANSWERS via Social Media – May 2015

Question:

Great news!! I don’t understand the new diagnosis – does this mean that you had a small dopamine hiccup – and that the rest has been because of the meds for that hiccup??

My Answer:

Kinda sorta – and the continued drug “barrage” may have changed the brain function as a consequence ie altered what the brain considers normal. I’ll probably write about it more fully.. just wanted to get the removal of “inevitable dire consequences” out there!

Question:

I’m very happy for you, of course – but does this mean you were incorrectly diagnosed and given the wrong medication for all these years?

Answer:

Neurology is far from an exact science so the fair answer to your question is “no” 🙂 Everyone involved with my care has always done their best, I believe, and I am immensely lucky, unlike huge numbers of people with neurological conditions in the UK and overseas not only to have a Neuro who is prepared to say “let’s think again” but also to see a Neuro who is both a Movement Disorder Specialist and has Parkinson’s as his prime interest. Most people in the UK diagnosed with PD are diagnosed by their GPs and few ever have a brain scan. The folks at Parkinson’s UK, The Cure Parkinson’s Trust and on forums world wide will say the same. I am amazingly lucky. My symptoms may never go away, the pathway to what occurred in 2006 is also complex and I have other old injuries/issues adding to the current mix. I’ll maybe write it all up at some point. BUT today I just want to celebrate the news I got from my neuro late yesterday

Question:

Great news – now you’ll need your positive approach to go through all the withdrawals

Answer:

Thank you for your good wishes!! As a practical matter, the process of weaning off parkinson’s drugs might be “interesting” (i.e., blooming scary) as there are many potential problems in the process, not least of which is a diminishing of functionality as, right now, despite the dopamine system looking healthy (ie not diseased) no-one knows if/how/how well it will start producing its own dopamine as it could have become “lazy” or switched off as my system relied on dopamine arriving from the medication.

I am, as ever, super-optimistic that all will be fine and I will be doing my best to rise to the challenges – or at least muddle through in typisk fashion

Question:

Fabulous news!!! You now have the task of reprogramming the brain to be ‘NORMAL’. Just one point, when you say “drug exacerbated”, you may wish to qualify that point!

Answer:

Thank you! …what is meant by “drug exacerbated” is “worsened by the effects of prescription medications”.

@joannekarma
#RCtheParrot

Life after Parkinson’s Disease – the announcement

As you can imagine, this announcement has produced a wonderful stream of positive and warm comments from my chums around the world, but also provoked a couple of questions.

To the extent that the questions and my answers to them may begin to paint a picture of my journey into -through and now -out of the world of organic parkinsonism (PD) I will run a questions and answers post!

@joannekarma
#RCtheParrot