Monday, 28 January 2013

POTS management program (UK)

On Friday I met up with an enthusiastic physiotherapist, blessed with plenty of common sense, who is working to set up a POTS management clinic.

An exercise based program based on the fact that your symptoms are real and should be respected - but also based on the fact that through management (diet, lifestyle, exercise etc) symptoms can be seriously reduced.

We talked about 'prompt' symptoms - ones which are fairly mild, but are an early warning that POTS is escalating. For me, taking evasive action at this stage can totally avoid major crashes - like realising that my hands are frozen - so I'd better walk around and get my muscles working before continuing this post!!
And all sorts - from diet to the psychological effect of misdiagnosis and disbelief. 
The basic plan is to have an initial consultation, to help therapist and patient get to know each other, followed by several one-to-one sessions to start trying exercises, learning 'prompt symptoms', etc. Then having group sessions.
The program hopes to include exercise (starting with horizontal core stability work, then pilates/gym ball work, moving on to cardio-vascular as appropriate), relaxation, pacing, as well as trying to help people improve their ability to cope with their POTS symptoms in a positive and constructive way. (Let's face it, POTS is tough and if we are honest with ourselves I bet that for most of us there are things in our attitude which we could do with a bit of help improving). 
She is still planning the format of the group sessions - concentrating just after exercising is not generally a POTS strong point, but neither is exercising when mentally exhausted from concentrating!
It was very refreshing to talk to a physio who appreciated that 'cycling til you collapse' was not a good strategy, but that listening to and working with the patient was the way forward. 
But whatever the format it will be a practical and supportive course, where POTS is normal so randomly lying down, snacking frequently on salt, putting ones feet up and other typical POTSy behaviour will be encouraged rather than frowned upon. Which I think is awesome.
It will be in Bristol. 
Once a week.
Hopefully starting in May.
Because there isn't enough of an evidence base, the NHS isn't funding it (at least, not yet...) so she is having to hire a venue etc. This means that at this stage it could cost up to £60/hour for an individual session - but less for the group sessions. More than I'd like, but it could be a very worth while investment.
Having said that, if an initial run proves successful for the individuals involved, getting it available on the NHS will become a more realistic possibility. These things take time.
In aid of NHS persuasion, they need to be able to measure 'outcomes' to show the course's effect. So, what do you think would be a good measure of improvement? How would you measure your POTS management improvement? (beyond the basic heart rate measurements) (I will feed any suggestions/comments back to her)

The physiotherapist, Penny, can be contacted on email address papillonphysio @ (without the spaces).

Tuesday, 22 January 2013

A pathway to freedom.

The snow to my front door was 2-3 inches thick. One inch I can wheel through, more is excruciatingly hard work - or impossible.

It isn't something I ever thought of before I became a wheelchair user. Something I only realised when it became personally (and selfishly) relevant.

Yesterday I had to go out. I opened my front door, ready to fight my way to the carpark....

....and stopped.

The snow had gone.

Not melted everywhere, just gone from my path.

My path was clear, from my door to the carpark. Not only shovelled, but salted too.

A pathway to freedom.

And I don't know who did it.

Whoever it was showed insight and thoughtfulness, and I am very, very grateful.

I cannot thank them because I don't know who to thank, so I thought I'd say thanks in the way I do best:

(Sign reads: "To whoever cleared and salted the path to my door: THANK YOU!")

Tuesday, 8 January 2013

Stickmen of much randomosity

Sometimes stickmen just happen. Someone makes a comment or I see something and my head instantly creates a stickman which will not leave me alone until I put it down on paper - or at least in pixels.

Yesterday I had one of those moments.

The Twitter conversation went like this:

I have a hard time taking people seriously when they refer to themselves as "wordsmiths."
 Unless their job is to craft words from metal. I like that idea. Although a book would be rather heavy.
 I'd like to see War and Peace crafted entirely out of metal. That would be...very heavy.

I couldn't help it.

Stickmen happened.

There is no deep meaning. No clever message to get across. Just some random concept that won't leave my neurons alone.


Oh blast.

It's happened again....

Book review from a charming young man

The other day I was sent this by a customer.

Her son doing a video book review about my children's books, Welly Walks and Biscuit Baking, which also raise money for Whizz-kidz.

I love that his face lights up when he talks about parts of the books which are also my favourite, and how he expands on the story adding his own little twists - I didn't realise they'd had to re-make the biscuit mix because they'd eaten all of it!!

His Mum says "it's nice to share a book with my son that shows a disabled child enjoying normal kid stuff. Books that portray disability as a form of normal are hard to find, and these are clear, fun and refreshing."

Apparently off-camera he said I have to write more books "About a boy who has a Mummy in a wheelchair and they make things together like playcorn."

I've already got 3 books in the pipeline, but for you young man, I'll do my best.

Monday, 7 January 2013

Wheelchair Shopping #3

Now that I have an NHS voucher, a charity grant and some savings, I can afford......A NEW WHEELCHAIR!!

Which I have been trying to get for months, and needing for years.

So, on Friday I went to GBL Wheelchairs (again). I was highly amused to see the cartoon of my last visit pinned proudly on their notice board.

Although I have tried the Quickie Xenon (see my review here) and Panthera S2 (see my review here) , I opted for a Quickie Helium. White, with silver trim. I know it might not be a practical colour, but I shall see how it goes... I just wanted it! I will review it properly once I have played with it for a while.

My relationship with the GBL staff is somewhat unusual.

They are professionals supplying my wheelchair and I am their customer. But I also am their sticker supplier and they are my customer. I have posted cartoons of them on the internet, and they have had more custom as a result. I think that Ian (Mr Wheelie Seller) must now be one of the most HMS/EDS aware suppliers of active wheelchairs in the UK! Plus, both I and Ian are outspoken, matter of fact wheelchair users with a similar appreciation to the humour of life.

This combination means we will both take the mick on occasion.

I called him a Muppet. He deserved it for getting his days so completely mixed up. He replied 'That's  Mr Muppet to you'. Do you think that means I am now entitled to call him Mr Muppet from here on....?

He called me a River Dance, Pointy Elbowed, Flopsie.
(I continually fidget my feet. Pointy elbowed arose when trying out cushions. I suspect It may be a code word for a pointy other part of the anatomy... And flopsie - I deserved that one as I'd just gone to talk with my usual hand gestures - and my wrist promptly detached.)

I graffiti'd his display Helium. (The wheelchair, not the squeaky voice gas!)

(With his permission. Honest! - I needed to discover whether my vinyl transfer stickers would attach to the standard fabric. There is now a green Quickie Helium with a medium sized positive wheelchair logo in green on the back. It looked STUNNING! And his comment was 'I like that. We'll leave it on. It does look good.' I am intrigued to see how well it stays on the fabric, but I'm totally sticking a pink one on mine when it arrives. I'll let you know how well it sticks. Making it stick initially was fiddly.)

I'd say we were even.

Except that I am getting NEW WHEELS! They're ordered and I should have them in a month.

Which means I have the better part of the bargain.