Category: RCtheParrot

Answer – first posted on HealthUnlocked – Parkinson’s Movement Community

 

Not long after my parkinsonism was triggered by anaesthesia in 2006, I started feeling a sense of internal “shivering” or tremor. Initially, it only seemed to occur when I was getting ready to go to sleep at night, I’d be happily lying in bed reading a book, my dog at the foot of the bed, and I’d feel a vibration or tremor through the bed. My dog, a rescue, had been with me many years but originally came to me with many fears/phobias so at first I thought this was him quaking and fear-trembling about something, so when I felt this vibration, I would comfort him a bit (without my specs I couldn’t actually see if he was tremoring… just figured that out of the two bodies on the bed his must be the one shivering!), carry on reading and… as was his habit… when I felt myself falling asleep and turned out my light, he’d jump off the bed and go to his bed.

After a while, I realised that it wasn’t my dog shivering but me – this actually first dawned on me as I was lolling in a bath reading a book and noticed that the surface of the water was vibrating. At this time, you can tell, the sensation didn’t dominate or, as came later, make me feel nauseous.

I mentioned this symptom to my neuro dude but he didn’t seem particularly interested in it so as I was becoming increasingly bothered as my family has a history of cardiac issues, I went to my GP (a family physician) here in the UK and he sent me for heart tests. I wore a 24hr Holter monitor and had an EKG and while there were no heart abnormalities found, I was found to be experiencing ectopic “storms” precisely at the moments I noted in the Holter diary that I was feeling the internal tremor/vibrations. The cardio-triage nurse who I saw at the first appointment and who arranged the tests had already prescribed 1mg bisoprolol on the basis of my symptoms, so when I finally saw the cardiologist she was happy for me to continue on the medication as it had made a marvellous difference not only to the internal but also the external parkinson’s tremor, .

I have been taking Stalevo as my main parkinson’s drug for several years now and this plus the 1mg bisoprolol really have kept internal and external tremor at bay. I should add that ttremor is not my main symptom (or maybe it isn’t because of my drug regime .. bit of a Catch 22 there!) but like most people, as soon as my body perceives some kind of stress, external tremor rapidly increases from minor to maximum windmill effect.

My neuro dude was interested to learn of the beneficial effect of bisoprolol and pointed out that the individual presentation of parkinsonism is so different that I should just count myself lucky that I’d found something else to help with my range of symptoms.

Recently my internal tremor has started breaking through again… nothing ever stays the same with parkinsonism as y’all know … so to counter this, as soon as I start to feel that the internal tremor is about to break free (and it’s too soon for another dose of Stalevo), I pick up some light free weights and exercise my arms with them and walk on the spot for a few moments, moving in the style of LSVT-BIG then things seem to get a bit more under control again.

It’s curious that neurologists (and others without parkinsonism) don’t appear to pay more than lip service to this symptom – perhaps we should invite our favourite charities to task some of their researchers into investigating this aspect of the disease.

Perhaps it is up to us, who are living with a wide variety of symptoms, including this horrid internal tremor, and who know how life-interfering/attention-grabbing they are, to direct charities and researchers into directions that will not only help us live with the condition now but also, who knows, help find a cure or prevention in the future!

@joannekarma
#RCtheParrot

Answer – first posted on HealthUnlocked – Parkinson’s Movement Community

Hi XXX

At the start I found it useful to read everything I could get my hands on, just to begin to understand the condition. There are a huge range of motor/non-motor symptoms but we don’t all get all or even most of them… its a curious disease in that respect. So from “Parkinson’s for Dummies” to Michael Fox’s first book through a wide range of books in between, topped up with internet browsing, I got stuck in to enlightening myself!

I would suggest that, unless you are already battling with severe symptoms, right now just continue on with your life as if you hadn’t been given any disease label BUT at the same time, read, enlighten yourself and become your own expert – don’t be down-hearted if you discover that most medical people know little more than the basics about parkinsonism/PD, it is one among so many complex conditions they see. Make sure your neurologist is a parkinson’s expert, if possible, but even if they aren’t, make sure you can work with whoever you see.

Your job, as I see it, is to keep yourself as fit, as energetic, as rested, as entertained as possible and as symptoms encroach, adapt and modify how you do things and, if medication is prescribed, then take it and monitor how it helps. These days, thanks to amazing advances in medication and the understanding of the condition, with the right drugs, physio, speech therapy and your own motivation, life expectancy is pretty much as it would have been without the diagnosis. Obviously there are some odd variants of the condition and the disease does progress differently in each of us, but you are still the “you” that you were before the neuro pronounced the diagnosis… what’s changed? If he’d said “we’re not sure and would like to see you again in 3m” how would you be living differently.

I just think it is important to regard parkinsonism as just one of those things that can/may interfere with how we live our lives but it isn’t our life! Unfortunately, at the beginning it really does seem as if everyone casts a long shadow over you and it really is only as you reach the annual milestones that you look back and realise that such gloom was a load of hogwash! If the diagnosis is correct, then yes you will see changes in the way you are but that’s true with just living and getting older anyway.

It is also important NOT to let that sector of society who seem to delight in other’s illnesses to bug you – you know the people I mean, the head-tilting “how ARE you” fake sympathy voiced ones, and those who can’t wait to tell you about their aunt or grandfather or whoever who just “died of parkinson’s”. In the early days of my diagnosis I still had a dog and walked regularly in a local park – one particular dog-walker fell into this category (her dog happened to like mine a lot and always made a beeline for him) and after about the third chapter of dire consequences, I simply asked her why she thought that I, with a recent diagnosis, would want to hear of the demise(s) of her relatives. She hadn’t been a friend, as such, so when she reacted crossly and stopped talking to me (her dog still loved mine, though!) it was no great loss. My point with this is, I suppose, don’t let other folks bring you down. If you find among your group of friends/acquaintances those who are, for whatever motive, making you feel fed-up … just gently spend less time with them. Surround yourself by all that is positive, upbeat and energetic and good for you.

The Cure Parkinson’s Trust is a great charity with its research focus but I would also recommend joining Parkinson’s UK (or visiting their website at least) as they focus on day to day living and have downloadable leaflets and really useful information for daily living if/as/when things begin to change for you. The two charities, in my life, complement each other in a synergistic way, it seems.

Does any of this that help or make sense?

@joannekarma
#RCtheParrot

DEADLINE 5 August 2013

The United Kingdom has a range of benefits available to those with disability. These benefits are all granted on the basis of specific tests. In my first ever blog about disability benefits in the UK I spoke of “fair assessment” – the UK Government constantly repeats that it is seeking to create a “fair Society” – so let me outline a major unfairness that may soon be perpetrated on many of those currently eligible for the mobility component of a benefit called Disability Living Allowance (DLA).

At the moment, the mobility component of Disability Living Allowance assesses those virtually unable to walk by looking at how far they can walk outdoors and how quickly they can walk, including rests and stops, until pain or discomfort (breathlessness, fatigue, dizziness etc) starts. There is no fixed qualifying distance in this DLA assessment, but someone is less likely to qualify if they can walk more than 50 metres without severe discomfort. There are exceptions to this for those who are only able to walk very slowly or need to stop and rest for long periods or have poor balance and are likely to have falls.

50 meters is roughly the distance from a carpark to a supermarket… its two lengths of a regular swimming pool … half the length of a football field.

Can you imagine being only able to walk 50 metres without discomfort?

DLA, and other benefits, are being succeeded by a new benefit, called the Personal Independence Payment (PIP)

BUT

the present Government thinks that anyone who can walk 50 metres but no further without discomfort etc., has no need of financial support with their mobility needs and under the new draft PIP assessment, the walking component has a very specific distance test, known as the “20 metre rule”.

What is this 20 metre rule? The Disability Benefits Consortium (DBC) briefing provides an excellent explanation, including:

“The PIP criteria state that only those who, ‘Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided’ will qualify for the enhanced rate of the mobility component…Individuals must be able to complete the distance safely, to an acceptable standard, repeatedly and in a reasonable time period, but can use aids such as walking sticks, crutches and prostheses.”

20 metres… less than one length of a regular swimming pool, less than the distance to a supermarket from a disabled parking bay, the distance someone walking at normal pace will cover in 12 seconds or so. It is no distance at all.

The reduction of the mobility walking test distance from 50 metres to 20 metres is a swingeing change and will make a very big difference to a lot of people’s lives – the loss of supporting income for those who are genuinely entitled to it will directly curtail the ability of many to get out and about, to participate in society, to contribute to their communities. Being housebound is horrible – being deprived of the company of others leads to isolation and unnecessary feelings of worthlessness, vulnerability and self-doubt.

has all the info you need to take action.

 

 

Please please take time to read the DBC Briefing

And then consider sending an email to the Department of Work and Pensions at this email address:  pip.assessment@dwp.gsi.gov.uk

This is the template drafted by Parkinson’s UK for you to use and/or tailor to fit your own concerns:

QUOTE
Dear Department of Work and Pensions

Many thousands of people with Parkinson’s rely on high rate mobility payments for getting around as their mobility gets worse.

If the Government restricts enhanced PIP mobility payments to only those who can walk 20 metres and no further, it is clear that many people with Parkinson’s will lose out.

By the Department’s own admission 50 metres is considered to be the distance that an individual is required to be able to walk to achieve a basic level of independence, such as the ability to get from a car park to a supermarket.

The Government should be helping people with Parkinson’s maintain their independence rather than confining them to their homes.

I would like the Department to introduce fairer criteria that enables someone with difficulties walking up to 50 metres to get the enhanced rate of mobility PIP.
UNQUOTE

Thank you for reading!

“Campaigning for Fair Disability Assessment”

My post usually arrives around lunchtime so I was happily eating some soup when I heard the sound of letterbox rattle and envelopes falling on the doormat.  I wasn’t expecting anything particularly interesting so finished my lunch.

Going to the front door I espied a brown envelope.   These days, for me at any rate, brown envelopes are always a sign that officialdom has something to tell me and… its rarely anything uplifting or good for me.  Along with the brown one was a white window A5 size envelope with “Important Information – This is not a circular” and “Private & Confidential” in large bold font on the front.  Loudly shouting envelopes are usually nothing at all important, are circulars and have nothing private or confidential among their contents.

BUT

turning it over I see it is from Atos Healthcare.  Stifling a snort of derision at the word “healthcare” (despite my being reasonably impressed with the assessment information provided to me, the overriding volume of negative experiences of this company still overshadows my impression of them) I open the envelope and can’t believe what I am reading.  OK it has my address, my National Insurance Number.. dated 17 Mav and starting with “Dear Mr Binns”.  It then continues:

I am sending you this cancellation letter regarding the appointment that was made for you at the Croydon Medical Centre on 29 May 2012 11:30.

Our Medical Adviser has reviewed your case again and provided an opinion on your medical condition based on the information contained in your file and on receipt of further medical evidence from your GP.

On this occasion it is not necessary for you to have a medical assessment.  Your appointment at Medical Centre has therefore been cancelled.

 

An extraordinary sense of relief rushes over me…and I actually have to sit down I am so taken aback!! (No, it wasn’t an attack of the vapours – sadly I am far removed in physique from a Southern Belle or a character from Bronte!!).

I read the letter again and spot that I am being addressed as Mr Binns.  Call me paranoid but I then suspect that the letter is intended for someone else, so get on the phone immediately – thanks to the (positivie) stress generated by the contents of this letter, the handset rattles against my glasses but, do I care? Nopes.  I speak to a very pleasant person called Emma who confirms that it is indeed my appointment that has been cancelled and she apologises for the “typo” in the letter.  She is a little surprised when I ask for her name as in the UK, at least, it has not been my experience that government employees give their names, unlike commercial Customer Service agents. but I imagine all calls are recorded so at least I have some recourse if it all turns out to be a mistake!!

I then email the Parkinson’s Support Worker with the extraordinary news and realise that, in a very curious way, I am a little disappointed that I won’t be able to check out this most notorious of Assessment Centres… only a very little though!

The rollercoaster of emotion and stress that I have been through since the Atos form first arrived in December (when I thought it was a relatively routine, but still anxious-making process) makes me realise that despite the process having changed, correctly, for me, there is still a need for guidelines for people with Parkinson’s who have to attend an ESA Work Capability Assessment and and, more importantly, for ensuring the process becomes less of a “one size fits all”.

LINKS:

Parkinson’s UK Disability Benefits Campaign

 

I am glad that I started this particular blog – it is serving  to not only highlight the general unfairness of the one-size-fits-all assessment process but also to balance my experience of  the ESA Work Capability Assessment. against all the  inequalities/unfairness described in what I found on the internet.

Once I have my own experiences of this issue I will be better able to see how to help the Parkinson’s UK Campaign(s) to ensure a fairer assessment process.  Yes… I am hanging my hat on their peg – I am “just me” but if I can help to spread the word about a central and well organised campaign(s) it has to be the most effective way to go about things.  That’s what I think at the moment anyway!!

Today’s post arrived a little while ago and one envelope was from ATOS confirming my appointment on 29 May.  I am pleasantly surprised at the contents of the envelope:

• A proforma letter with details of the appointment that has been arranged on one side and on its reverse the name/address/phone number of the assessment centre, along with a brief map, travel directions for rail/car/bus, and an important note about use of the lifts:
• a suggested Journey Plan
• a Notes sheet from Job Centre Plus called “About your medical assessment”
• a sheet asking in several languages if I need an interpreter

As I am hoping to have someone with me, either a Parkinson’s UK Support Worker or a friend (several have volunteered for this and I thank you all, even if it turns out I don’t need to accept your offers of help!) I don’t think I need to call the centre.

I have also been in contact with the Parkinson’s UK Campaigns team and in addition to hooking into what has been happening centrally (and getting permission to use the official logo/weblink on my website www.joanneclements.com) I have offered to help as/how I can!  During the course of the conversation I was, for the first time, somewhat reassured as apparently there is a reasonably high percentage of folks with disabling Parkinson’s symptoms who are categorised quickly and efficiently by the ATOS process.  I hadn’t heard this before.

One of the major pieces of advice I got from the benefits advisor is to prepare a brief statement of my condition and how it affects daily life and to send a copy of it by post to the centre I will be attending, to the ATOS Head Office and then take two copies of it with me  –  one to be handed in person to my assessor and one for my reference during the assessment.  Then as/when/if I am asked questions that touch on my (dis) abilities I can refer them to my statement.  This will be particularly helpful if the stress of the situation is, as I suspect it might, turning me into a rather incoherent and trembly incompetent.

So… now I have to face up to the list of things I can’t do.

I am sure it is true for anyone with a chronic, progressive condition that is slowly “ticking down”, but I absolutely hate listing all that I can’t do or can’t do as well as I used to!   We all have battles to fight and one of mine, that I have yet to win, is accepting my disability.  I know it is there… it is pretty blooming obvious … but I keep hoping that one day I will wake up as the “me” I fancy I would be without this disease.

Can you tell I am dilly-dallying?  putting off the inevitable… yeps… in fact I could probably segue this into a discussion of colloquialisms or something.. but I won’t…I must get at least a first draft of the Statement done!

 

…to be continued…

I am getting a real bee in my bonnet (or bug up my butt as our American chums would say) about the complete unfairness of the current disability assessment process and it doesn’t help that the media in general has been carefully orchestrating the notion that all people on “benefits” are scroungers and cheats – the only programme I have ever seen on TV that sort-of showed the counterpoint was Dominic Littlewood’s “Saints and Scroungers”, but as I recall, even this show spent more time on the scroungers than on those not receiving benefits they are entitled to and the disabled didn’t feature as a separate category at all

While I was working, and I worked part-time while at school/university and then full-time until my parkinson’s rocked on up, I have to confess that I didn’t pay any attention to the benefits system.  At the time I earned reasonable money, could afford new clothes, didn’t need to stop and think about the cost of eating out or going to the cinema. Lucky me!

As a fit and active able-bodied individual I paid taxes on my earnings and if I came across a headline of “Benefits cheats” the most I might have done would be briefly mutter under my breath about shirkers.  Nothing more.  Benefits and specifically the system of disability benefits didn’t affect me and my life one iota.

I don’t believe I was alone in thinking this way.   We pay taxes, we work hard, the system is there to support us if/as/when we need it to.

If someone had asked me to describe how I thought the disability benefits system would work for me, if I needed them, I would probably have said that I would expect to be able to readily find out what benefits in total I am entitled to, what the eligibility criteria were for the individual benefits, what specific supporting evidence(s) would be needed, and any individual assessment I would be subjected to would be appropriate for whatever condition affected me and be conducted by medical professionals.

That’s all quite reasonable and fair, isn’t it?

But that is not what happens.  I am not going get sidetracked into what disability benefits are available or even what other benefits a disabled person may be entitled to.  My focus is on the fairness or otherwise of the way in which disabled individuals are being assessed for benefits administered by the Department of Work and Pensions.

Here is the current assessment that is being applied to everyone seeking the ESA (Employment Support Allowance – successor to Incapacity Benefit and Income Support and Severe Disablement Allowance).  As you can see there is no filter applied if the individual being assessed is missing a limb, but otherwise healthy, being treated for cancer or living with a chronic, progressive and currently incurable condition. The tests that we are all being subjected to are the same and the outcomes are random.

The Assessors come from a wide range of health professional backgrounds.  If you have a condition such as Parkinson’s Disease, you won’t necessarily see someone with any knowledge whatsoever of your condition.  You see whoever happens to be working that day.  You may see a midwife!!  They may be/have been a very competent midwife but if, for example,  at one point in the test you successfully pick up a weight (which then completely exhausts your muscles so you are now in pain and unable to repeat the action) they will check the box on the computer-screen in front of them that says you lifted that weight.  There is no place for “with difficulty” “won’t be able to do it again”.  The box is checked and the process rolls on.

What is fair about this?  Pretty much nothing.  Its not fair to the assessor who is merely the User Interface between the IT process and the claimant and its certainly not fair to the individual who, through no choice of their own, is seeking financial help to cope with disability.  Not a handout, but for someone who has worked for decades, assistance to which they are rightfully entitled!  That our conditions are wildly differing and our answers don’t fit properly within the form really doesn’t matter.

The company chosen to make those of us with disability all fit into the system is a multi-national IT company – not one with any expertise in healthcare or disability of any kind.  For doing this job, ATOS is rewarded with £80m a yr contract for 7yrs.

Just this morning on behalf of the Government, Iain Duncan-Smith has announced that he wants to see 500,000 people cut from the list of those receiving disability benefits,

What an ugly numerical coincidence…. one person cut for every £1 paid to ATOS!

We need to campaign against unfair disability assessments – it is not right or fair for those with chronic, progressive and currently incurable conditions e.g., parkinson’s disease to be tested in a one-size-fits-all system. It is also not right that those whose disability isn’t evident, like the profoundly deaf, should be classed as not disabled when they need costly enhancements to help them function well in society.

Forget Big Society how about a Fair Society!!

LINKS:

Parkinson’s UK – Disability Benefits Campaign

The Hardest Hit