Friday, 10 August 2018

travelling around venice by wheelchair

Last week we returned to Venice for the first time in 11 years. How would we manage with a wheelchair?

In my more downbeat moments, I'd been quietly (and not so quietly) referring to this holiday as my last chance to see Venice. Regular visitors will know my mobility has been steadily declining, even before the two relapses I had last year (from which I'm still recovering).

And even though it's been a while, I can remember enough about Venice to know that it's not the most accessible of cities.

But because we didn't get to go away as a family last year, we booked this holiday, with my parents coming along as backup. Anyway, we wanted to show Little Miss D where we got married.

We were staying at a nearby resort called Lido di Jesolo. Mrs D and I had been a few years back and thought that it would be a perfect place to visit with a family. It's super flat, miles and miles of beaches, hotels, bars, restaurants and amusement arcades. It also seems like it's the sort of place where Italians go on holiday, which is always pretty cool.

The flatness of the resort was a pretty big seller for us because - like Philadelphia a few months back - we were traveling with the wheelchair again. And a nightly passeggiata has always been a favourite part of any Italian holidays we've had.

I'll talk about the journey in another post because there are just some weird things which seem to happen whenever you travel with a wheelchair. Completely frustrating and totally avoidable things to my mind, but here we are.

But for one day we went over to Venice. We booked on an organised trip for a little for peace of mind - had mobility not been an issue we could've "roughed it" and organised a much cheaper way. But as I've noted before, being disabled is EXPENSIVE.

One benefit was that we'd be on organised buses from our hotel with private boats over to Venice, with some assistance at either end. One of the guys who helped me on and off the boat was so attentive that I complimented him for his beautiful dancing.

First up. Here's the big news...

[drum roll...]

Venice has got ramps! 


That's right, Venice has got [admittedly, not many] RAMPS on some key bridges. 

These are on the four biggest bridges which lead from the main drop-off port, taking you past the Hotel Danieli and the Doge's Palace and into Piazza San Marco.

Without them we would not have got much further at all.

After that, we used a combination of Google Maps, a free Ulmon Venice Travel Guide app and our own failing memories to navigate a mostly bridgeless route through the back streets.

Firstly Venice is a typical busy European city. And despite the claims of the people with whom we booked our day-to-night tour, not everyone leaves at 5 o'clock (although it does get noticeably quieter). If you're ok with that you'll be fine.

Especially if you know to walk on the right hand side of the paths.
The map / app combo helped us get about really easily. I can't remember there being too many bridges which I needed to cross on foot (with my two sticks). And most were 5-6 step bridges - easy to do if you can slump back into your chair afterwards.

One thing we wanted to do was see Palazzo Cavalli where we were married almost 12 years ago. By this point we were all exhausted (the temperature was in the mid 30s the day we visited). But looking at the maps, there was no way to get there without crossing a bridge.

I was defeated. Mrs D, my Mum and daughter pootled off to see it while me, my Dad and chair stayed on the other side. I felt so downhearted.

But then I got mad.

If this was my last visit to Venice, I was damn well going to see where I got married.

I got out of the chair, dragged myself up and over the bridge (my dad followed with chair) and made it to the doors for an emotional photo opportunity with my girls.
you have reached your destination
So Venice. It's still beautiful, bonkers and back-breaking (thanks, Dad). The paths are pretty good so my chair managed well. And if you're bloody-minded enough, you'll get where you need to, regardless of MS.

We're lucky that we've pretty much done Venice over the years. There was nothing in particular that we needed to see, we just wanted to have a mooch around and take it all in once more.

It can be done.

Will we do it again? That remains to be seen. But if not, at least I had the opportunity to say goodbye to it.
beware the locals (1)

beware the locals (2)

Friday, 27 July 2018

you too can be a PIP / ESA assessor!

In my search for work, I have signed up for many email alerts.

Imagine my surprise to receive this one.

Yes, it certainly does seem to be for a Personal Independence Payment (PIP) or Employment and Support Allowance (ESA) assessor. You may find it as interesting as I did!

Posted here without comment...

(Excuse the screen grabs from my phone - full text included below)

Full advert text:

My client based in Derby is looking for a number of Disability Assessors to join their team.

Full training will be provided and hours of work will be during the day from Monday to Friday.

Starting salary is £34,000 with additional benefits including paid holidays, life insurance and company pension. 

Duties:
Undertake an assessment of an individual who is making a claim taking into account all of the information presented including any supporting evidence e.g. the claimants completed questionnaire and information from GPs etc

Carry out a comprehensive review and analysis to enable you to complete a robust, structured report which will then be presented.

This report will contain a detailed history of the claimant condition(s) including information gathered on the functional impact of their health condition or impairment on their daily living and mobility, their current medication and treatment

You will provide a full justification explaining how you came to these conclusions from the evidence gathered and define the probable timescales over which a health condition or impairment may affect the claimant.

Criteria:
  • Qualified Nurse, Occupational Therapist, Physiotherapist or Paramedic
  • 2 years post qualification experience
  • Valid PIN
To apply for this position please email your CV via the link provided

Job Types: Full-time, Permanent

Salary: £34,000.00 to £38,000.00 /year

Experience:
  • Paramedic: 2 years
  • Nursing: 2 years
  • Physiotherapy: 2 years
  • Occupational Therapy: 2 years

Wednesday, 25 July 2018

mind games

My mental game has been taking a bit of a battering over the last week or so, not helped by the stifling heat in the UK.

As Cole Cuchna would say, let's Dissect!

sing me to sleep


Obviously the heat isn't helping any of us with getting to sleep. The weirdest thing is, I have been dreaming that my alarm is going off. Yes, my dreams are that interesting.

It always happens about 30 minutes before my alarm is due to go off. But that doesn't stop me taking an age to realise what has happened.

One night this happened three times.

the drugs don't [seem to] work 


No complaints about Tysabri. But it seems that Fampyra / Fampridine has plateaued again. It doesn't seem to be doing anything to help at the moment so I'll probably need to have a fallow month.

Just in time for the summer holidays. Score.

never gonna do it without the FES on


In other walking news, the FES (Functional Electrical Stimulation) seems to be doing its job quite nicely. But it currently takes me around half an hour to get the damn thing on, however.

After drawing the correct position for the electrodes on my leg with so-called permanent markers (which ALWAYS washed off), I've been trying to do it by sight and touch. Way more complicated than it sounds.

I've got another appointment with the Gait Lab next month. Remind me to ask them to explain why I can't have a tattoo of the correct position.

wii Can Work It Out


I'm going swimming when I can but on days when I don't I've dug out our old Wii Fit. There is a great range of things to do on there.

I aim to do a bit of Yoga, some exercises and end by doing a few balance games (NOTE: I'm still the king of the Penguin Slide game).

Screen saying "You were very unsteady just then. It's difficult to maintain a beautiful pose if your posture is bad."
well DUH...

I could without the not-so-passive commentary from the instructors, though.
Screen saying: "Your body seemed very shaky during this exercise. Don't forget, a stable body can help to achieve better posture."
oh get knotted..

you can't put your arms around a memory


Ah Facebook. Such an odd place. I quite like the Memories feature. Even though it's usually a memory of me posting some asinine political meme or musical blathering.

But I'll be honest. This bit of musical blather almost broke me.
Longtime visitors might recognise Annabel as my late friend who I wrote about here. Still much missed.

Friday, 13 July 2018

the blogger’s conundrum

What to write when there isn't much going on?

This time last July I had only just returned home from my parents' house, after a second relapse and second dose of steroids. I was just about to begin Cognitive Behavioural Therapy sessions as well as recommencing physiotherapy. Plus I'd just had my first PIP assessment.

Quite a lot has happened since then!
  • CBT was fantastic. I never did put myself in for another round but I don't think there’ll come a time when I won't need to keep working on my mental game. Still many improvements to be made! Mostly to do with the way I handle (or don't) stressful situations. 
  • I started on Tysabri, one of the more intensive MS treatment options. I started writing this during my 11th infusion. I've also had bloods taken for a further JC Virus test. As I mentioned previously, because I recently tested slightly positive I'll always be considered positive now, even though the score can go up and down. 
  • And because of this I've got another MRI coming up soon. My last one showed no physical signs of Progressive multifocal leukoencephalopathy (PML). Which is something. I'd hate to die because of something which I can't even say...
  • I'm still keeping on with my physio - the improvements are incremental but enough to keep me going. 
  • We've been to Philadelphia! Still seems utterly surreal. 
  • We defeated the evil PIP monster. Not to sound overly triumphalist but I am proud - of my family and, yes, me too. That we didn't give up. 
I'm still trying to find work that I can do - or want to do. That's the big challenge now!

This isn't work but it's nice to have been nominated, regardless - if you should feel so inclined, please click on the image below to endorse this little blog.

Thursday, 28 June 2018

my PIP story pt.2

I hope these posts will be encouraging for anyone going through the PIP application process. I am NOT an expert.

Read Part One here 
--

5. Preparing for an assessment


This article is a pretty chilling depiction of the faceless bureaucracy of a PIP assessment: https://www.benefitadvice.org/pip-medical-assessment.html - particularly the Computer Says "No" section at the bottom of the page.

FULL DISCLOSURE
I honestly don't know what you can do to prepare for an assessment. I was lucky that both of mine were in my home. But for my second assessment - when I'd included details of adaptations that had been fitted around the house - they didn't even look around.

Although it couldn't have been used in a tribunal, I'm glad we made an audio recording of the assessment. At the very least I could play it back to ensure that I hadn't misremembered what we actually did say when we were able to go through the tribunal papers - which included their notes from the assessments.

But even so, the things that we said were twisted, misrepresented, or flat-out ignored.

Maybe I was unlucky. But all signs would imply that this is par for the course.

6. Take it to the bridge… I mean, the tribunal


my ACTUAL tribunal papers
After an application, an assessment, and an unsuccessful Mandatory Reconsideration, now was the time to request a tribunal.

At this point the case was passed onto HM Courts & Tribunal Service. Shortly afterwards I received a huge wodge of papers - forms, assessment reports, and decision notices for BOTH of my applications. 185 pages in total.

Although they were two separate things, I think they did this to show the tribunal service that, "This person has applied and been assessed twice. In our opinion they are clearly taking the piss."

At the front of the pack there is an official response to the appeal from the DWP:
I've considered all the available evidence and considered which descriptors apply for each activity, taking into account Mr. Woodward's functional ability. This includes the activities Mr. Woodward has disputed and those which he hasn't. I agree with all descriptors included.

I oppose this appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.
Now. This scared the bejeezus out of me when I read it.

But think about it - they can't very well receive the tribunal request, look over the application notes, then turn around and say, "Blimey, we got it wrong here. Sorry!"

So this is a standard bit of verbiage. Stay strong.

Obviously I never got to a tribunal [SPOILER ALERT] but it really was like an intense game of chicken - who was going to blink first?

7. Evidence, evidence, evidence

This is what turned it around for me when we were waiting for a tribunal date.

I saw my MS Nurse, showed her the DWP's refusal letters and we went through them point by point. She also did some physical tests. This whole appointment took about an hour.

She then went away and wrote a letter in support which included irrefutable evidence based on her knowledge of my condition over the years.

The whole report was less than a single side of A4.

And in the phone call to let me know that their decision had been reversed, the person I spoke to said that this bit of evidence was what turned it round.

So save yourself a lot of bother - if you're applying now, include a notes from one of your listed medical professionals, as long as it backs up the things you have said elsewhere.

Another reason to include this kind of thing in your application is because NOT ONE of the medical professionals I listed - three for the first application, seven for the second - were contacted.

Perhaps I should have allowed enough time to gather this kind of evidence before I applied - but then, you're only given a month to return your application and there are enough things to stress about.

Conclusions

Like I said at the top of the first article, I am no expert in this sort of thing. But at the very least my experience shows that a decision can be reversed.

It takes a lot of stress and anxiety, and it might very well lead you to want to just give up.

But I can't help but feel that this might be exactly what the DWP is counting on. Call me cynical.

--

Just for reference, these are the scores I achieved through my application process, and how they changed.

Application 1: 
0 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Application 2:
6 points for Daily Living
4 points for Mobility
Unchanged after Mandatory Reconsideration

Final decision (after supporting evidence from my MS Nurse - remember, this was A SINGLE SIDE OF A4):
9 points for Daily Living
12 points for Mobility

Tuesday, 26 June 2018

my PIP story pt.1

If you are applying for PIP, here are the main things I learned in almost 18 months spent in limbo-land.

Firstly I'm not an expert on Personal Independence Payment. If we look at the facts, I submitted two separate applications, both of which were turned down!

But I thought it might be useful for anyone going through the process to see all the steps I went through to get to my result.

At the very least it might show that, with a bit a massive amount of perseverence you can get the result you need.

1. It's not the same as Disability Living Allowance

I approached applying for PIP in much the same way as Disability Living Allowance. THIS WAS A MISTAKE. It really isn't the same beast and what was fine in the past (writing about you on your worst days) doesn't cut it anymore.

The really slippery buggers are the Yes / No / Sometimes multiple choice questions about issues you might have. And it's these which mean that the system is not a good fit for a fluctuating condition such as MS.

If you have to tick "Sometimes", what does that actually mean? A couple of days a week? Five out of seven? I'd say that if it's over 50% of the time there's a good case for just ticking "Yes".

2. Get an outside view

Ideally this would be someone who is not personally or emotionally invested. There may be an organisation near you which offers an advice service - Citizens Advice, MS Society local groups or Disability Direct will all be able to provide some support to people making claims.

One other great source of guidance and support is Benefit Advice Essentials - see their Facebook group https://www.facebook.com/MYBASEUK and their website at https://www.benefitadvice.org/

When application number one was turned down we worked with the Derbyshire Unemployed Workers Centre as they have a lot of experience of these sorts of cases.

They submitted a Mandatory Reconsideration for us and when it was knocked back, they went through my form. And advised me to apply again.

3. If at first you don't succeed...

As I mentioned at the time, the main reason I was advised to apply again was because a lot of things had changed between my application going in (January) and the decision being made (August). I couldn't include things like adaptations around the house or Cognitive behavioural therapy sessions in my appeals because they weren't on my original form.

Could I have informed the DWP in the interim? Yes, probably - but they might have asked me to apply again anyway.

I was lucky in that, between submitting my form in January and the Mandatory Consideration refusal in August, I was still getting DLA. Which meant that when I reapplied in September (and got a positive result in May this year), I effectively didn't lose any money.

However. It was undoubtedly touch and go, and I wouldn't recommend it as a way to achieving a positive mental attitude.

I worked up the second set of answers with our DUWC representative, then drafted up the form. THEN the representative went through the answers again before I filled in the form.

And he took a lot of it apart, showing where I could be said to have contradicted myself or undersold the problems I have.

I think this is something that a lot of people do, because the whole process is so difficult to get through psychologically. We naturally prefer to assert our independence and focus on the things we can do, because the other option is too depressing. And even if we prepare our application with a family member or a partner, it's difficult to expose or recognize those parts of our lives.

The DUWC representative asked some tough questions and I didn't like him for a lot of the process. But he explained that he wasn't even thinking that the form would get passed at the first attempt. He was helping me to write it with one eye on a tribunal.

By getting it watertight at this point I would be giving myself the best possible chance at a tribunal, where an independent panel would look at evidence from both sides. Following on from this...

4. Language is important

Again, you will feel more confident if you're sure that your answers are watertight. Does your answer for one question contradict what you have said elsewhere in the form? Could this be used to undermine your claim?

Filling in this form is a horrible thing to have to do. You are laying bare the worst parts of your lived experience. You may not want to acknowledge that the person you are writing about IS you.

Give yourself a good chunk of time - I ended up panicking and rushing mine.

---
TO BE CONTINUED

Monday, 18 June 2018

no more drama

Last week was pretty trying.

To start, an appointment with my Neurologist, my first since my relapses last year.

I like him but I can’t help thinking he seems quite keen to rediagnose me as Secondary Progressive Multiple Sclerosis. Yes, I know this is how it goes for the vast majority of cases - is it still 80%? But this figure always makes me think of the following panel from Daniel Clowes' Art School Confidential story:

Clowes D, p.19 Eightball #7, Fantagraphic Books Inc, November 1991
We all think that we're in the 20% because anything else is too scary.

And I don't mean to offend anyone reading this who is already SPMS (or even PPMS). Neither am I so dim to not be aware that MS is progressive in nature in all of its flavours.

But having it in the name of your condition for the first time is going to be hard to take. So forgive me if I want to stall it for as long as possible.

Anyway, the stress of this appointment meant that neither myself or Mrs D slept at all well the night before.

To cut a long story short he was actually really pleased with how I'm getting on. As I think I mentioned before my first test for the JC virus was negative but I am now slightly positive.

Interestingly, although the JC titre [a new word for me too!] can go up and down, because I've gone from negative to positive I will always be counted as positive from now on.

But on the whole it was all good.

After that I had my birthday and a fairly dramatic infusion.

One other person on the ward had to be revived - I've not seen so many panicky medical professionals go behind the curtain around a hospital bed since Little Ms D’s birth.

A nurse - who looked really shaken up - asked if we wanted to be moved to another ward. But as I was nearly finished we decided not to bother.

The person eventually came round and was ok, by the way. At least that's what the nurses said anyway.

However it was still pretty unnerving to see her named on the ward list as a fellow Tysabri patient.

What is this crap I’m having pumped into my veins every four weeks?

Ne’ermind. See you next month!