How Do You Get Pikachu on a Bus? You Pokemon! It’s #PokemonGo

Are you aged between 29 – 39? Do you have a smartphone? If the answer to both of these is yes, then thank you for taking the time to read this instead of playing.

Sorry? Did you just ask what am I playing??! Although not officially released in the UK yet, I’m playing a bizarre online augmented reality game called Pokemon Go!

Remember this little dude?

Now, imagine that you had a pokeball only it was your phone… and then you saw a version of Google maps that helped you locate your Pokemon…. and when you found one you saw it augmented over an image (using your phone camera) of where you actually are. And there you have it – the 90s teenager version of Ingress. Same premise, cuter graphics, more addictive because you’re collecting cute stuff. 

The clever idea behind these augmented reality apps is that they encourage slothernly “teenagers” to walk & explore the local area (devs, the kids aren’t playing. Hello from the over 30s club). And it’s working. My Facebook feed is full of friends posting about going out walking just to capture more pixels… but what if you can’t?

I saw a number of tweets on launch day suggesting that the app is ableist as it encourages you to walk. I don’t wholly buy into that, but I am looking at ways that I can play without the walking bit…

1. Get out on wheels

Fair play to those who are walking, but some of us need a bit more help with mobility. As an alternative, I tested out playing whilst in the back of my work taxi on my way home. I captured a few, but drove past the training posts waaaay to quickly to use them (no. I didn’t ask to stop – I have a shred of dignity left). Potentially we could also start exploring with me in my wheelchair. This is a limited option locally as my ability to self propel on any camber or incline is crappy at best & the local pavements are so poorly maintained and cause enough jolting to take me out for days after a few minutes. (I did invite our local councillor to come for a walk with me… as yet no response). There are places however, with reasonably flat pavements without the cracks & dodgy drop curbs that we could explore.

2. Stick to places I go anyway

This sort of defeats the object. I would then be restricted to collecting at home (actually, not bad), at work (whooaah unprofessional), and at the “gym” (by gym, I mean pool where I bob about until the indignity of using the ducking stool has worn off, then sit in the warm bubbles massaging my back).

Oh, and Tesco. Maybe I’ll find a raikou in the knickers!

3. Invent an Accessible Life hack

Part of losing my mobility has been channelling all of my creativity into finding alternative ways to just do shit anyway. 

Can’t type – shout at ipad. Can’t stand – sit & be louder. Can’t swim – strap float to chest and paddle like a broken turtle. Can’t walk – get wheels. Can’t run– wheelchair racing. You get the idea…

So, what about combining “trips out” for the kids with collecting? We make it a family game. We drive somewhere, I collect what I can, then challenge the kids to collect as many as they can…. the only down side to this being trusting the kids with my phone 🤔.

Ultimately, I’ve been waiting for this game for more moons than I cared to admit to. And OMFG I want the wearble! Just look at it! Loooooooook!

So after all the hype, I refuse to adult over this. I’m bloody well going to play. Even if I have to find a solution to this walking crap. I need to – I have a feeling they’ll be some “friendly  competition” at EGX this year 🕹🖲🎮

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It’s Going To Be Thunderous!

… or at least I hope it will.

Yesterday, brought some very exciting news that my last post had been featured on The Mighty – the online disability magazine. Cue several hours of not sleeping because I was excitedly clapping on twitter about this, then rich tea biscuits. Because, well, Twitter.

Today, continues in this over-excited vein with our Thunderclap Campaign nearing it’s end (3rd April) with a current 88% support rate and 4 days left to run. That’s 12 people I need to convince to pledge a (free!) support message via Twitter, Facebook, or Tumblr. This is technically easier said than done.

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The first day was very exciting with over 25% support, this went up for over 40% by day 3. But then it slowed. We’d run out of people to reach via our own social channels and had to let the campaign simmer over the next 2 weeks (you have 14 days to collect 100+ supporters). Things picked up again, the past few days, immensely so after a bulk email of our first ever newsletter for Expect Zebras. But I’m twitchy again. That feeling you get at the end of an Ebay bidding war where there’s just seconds left and you could lose that prized item if you don’t watch it like a hawk is there (can you just imagine what this is doing to my POTS?!).

So there we are. Whilst Mr Geek continues to talk the app into playing nicely with our database where I have been furiously adding chronic illnesses, their awareness colours, and lists of potential medications that people want to record, I am set the challenge for the day to get our Thunderclap 100% supported.

Would you help? Please??!

 

The Zebra Stole My Spoons

There’s this lady I know who has inspired me to be a bit more kickass than the boys despite being in a male dominated industry. There aren’t many people who can keep a bunch of nerds in check and stop the regular as clockwork Creative Tantrums and not lose their mind.

Anyway, not only can she corral the nerds, but she’s also a fabulous illustrator and has created these bad boys for our Expect Zebras app. We’re so drawn to the second one and his cheeky face, but the first one has a simplicity that would be easy to work with and reminds me of a sock toy. Uuugh! What do you think?

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I can’t wait to see one of these guys on all our stuff. I never expected these Zebras – what a lovely surprise!

Expect Zebras – The Chronic Condition App : Joints just got serious

At Christmas I got utterly overexcited about a concept App for EDS and related conditions. We created version 1.0 with some of the basic functionality, but no cross platform compatibility (it only works on Android phones) and only a few features. Still, it was a start.

This week with more dislocations & some inyeresting work antics has given us a firm shove towards creating the everso slightly more awesome product that we had envisioned. The concept is more complex than just an app and will shortly be appearing on Kickstarter (we’re working out our minimum goal right now as the biggest outlay is getting a whole load of wristbands & keyfobs printed & encoded).

As someone with EDS, POTS, CRPS and other fun that goes with it, I needed a fair amount of help organising my life (major brain fog altert!). As the possibility of a personal assistant was looking unlikely, we wondered if we could use our background in programming to create a solution. What if I could use my phone to record when I took medication? What if I could get a reminder when I’m due my next dose? What if my husband didn’t need my phone to see what I last took and when? Ooh what if that could be combined with wearable tech? [Insert nerdgasm here]… So we got going.

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Expect Zebras is a connected wristband (or keyfob), app & website trio allowing you to be an expert patient and fully in control of the management of your condition by putting your data at your fingertips. Allowing you to use objective data to give you the confidence to talk to your caregivers assertively whether they be your primary doctor, specialist, physio, or carer.

No more leaving appointments in frustrated tears because doctors won’t listen. Appeal to their natural scientist with clear data, presented in a medically understood format.

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The Wristband
Worn like a watch, and totally waterproof, this uses near field communication, much like your contactless payment card, except it gives you the ability to hold access to your emergency medical information through connection to a mobile device. In the event of an emergency, you can choose to have anything from just your diagnosis & next of kin phone number to full details your medication, routines, and scanned documents available via a mobile web page with a pin accessed via the back of the band. No app required, making it easy for medical professionals to help you quickly using just their mobile phone.

As you update your app whilst wearing your wristband, the data on your wristband updates too!

The App
Allows you to access and update your web account & will also allow additional functionality such as a panic button with current location via GPS which sends a distress SMS to your chosen next of kin or carer, converting photos of letters / medical notes to PDF files to create your own version of your medical notes. (I found this particularly useful last week when I was in A&E), or taking a video of your physio exercises to replay with a timer / rep count. For POTS sufferers, an additional feature of heart rate recorder & graph will be included for those with compatible phones.

The app will be free to download but will require an online subscription to save & backup data to the website.

Combined features with the wristband are to update the time & date when you last took regular medication with a reminder on the app for your next dose. Dates to remind of medical appointments, when to order repeat prescriptions, and allergies.

The Website
Whilst an app is great for data required on the go, the website provides a place to view your scanned files, reports on when and how often you are taking medication (coupled with your pain level ratings) recorded from the app.

From the website, you can download doctor, physio, and carer friendly reports in PDF format to print or email to your care provider. Your report will be customisable with filters for dates, symptoms and graphical analysis.

Combined features with the app & website will include medication taken can be updated by scanning a printable barcode for each. By sticking these onto your medication box or pill box and scanning each time you take a dose, you need not type in your medication more than once. By updating your “taken medication”, the app will record your time & date of dose and synch the data with the website & wristband.

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There’s a lot to do, and the wish list is extensive. But with a condition that on average takes 10 years to receive a correct diagnosis, sometimes you have to fight science with science.

To keep up to date with our progress, please visit and like our Facebook page: http://www.facebook.com/ExpectZebras  or follow us on Twitter – @ExpectZebras.

We also need help from people with chronic conditions to tell us what they want from the app : Please complete the quick survey to help here

Expect Zebras : An App For EDS – First glimmers of a something

So, for those of you who kindly read and commented on my blog where I talked about my idea for an Ehlers-Danlos App and asked for your thoughts, and in fact anyone who happens to be popping past on here, the big news is that a prototype has started to make its way onto my phone. I’ve also decided to called it “Expect Zebras”.

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Thanks to so many lovely responses on both here, Facebook, and Twitter, I have a good few months worth of ideas even if I was developing full time!

However, I will share the first few exciting stages with you along with the first sections that will be developed.

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Home Screen With Possible Section Buttons

Version 1.0 is going to focus mainly on emergency support:

About me, takes your EDS diagnosis, record of medication, and emergency contact details to create a useful personalised fact sheet to show to medical professionals.

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You can add your official diagnosis on the Settings page, where you can also set the app to read the screens to you.

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I’m planning on adding other personal details here like your DOB, emergency contact details. So as all of these are personal bits of information,  they need to go behind a passcode. One bit of code begets more exponentially!

Next is medications. I’m not sure here – The simplest way would be to allow people to enter their own, but the risk of misspelling is huge, so a database of the common medications with levels adjusted as a when needed seems more sensible (this also means the slider bar for dosage can be adjusted to suit the drug). I shall ponder this…

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I initially thought about having this create you a repeat prescription request letter, but I reckon most people who would use the app, would probably use online prescription services.

Finally, for version 1.0 I’m going to add a panic button (or rather a range of). This will allow you to set a custom message for a standard – help! I’ve fallen, or help! I’m in too much pain to continue on my own text message to be sent to your emergency contac.  This will include GPS link to get to you.

Version 1.2 will come once I’ve perfected the screens above and will be my Brain Fog menu with things like tablet reminders, appointment reminders with notes, and voice recordings for those of us with sieve like heads.

Another thing I’m hugely excited about is EDS specific physio reminders. Before I entertain this though, I’m going to see professional help (a little too late some may suggest 😉 ) because I’d like to include images or videos to help.

Anyway, watch this space for a beta version on the Google Play store hopefully before the New Year.

As always, please leave your ideas and feedback. Even if you think the design looks awful! I’m making this for me and you!

Hearing Zebras – A New Mobile App?

I’ve noticed that there a number of apps out there for people with disabilities, but the only ones that are built towards a specific condition are never quite right for people with EDS.

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So, as something to keep my toe in the water, and tbh something to create a foundation for a backup for long term employment, I thought I’d do it. The question is this:

What would your ideal Ehlers Danlos App allow you to do / record / monitor?

Answers on a postcard. (Or more realistically, in the comments?)

Initial thoughts – photo based Beighton test?

Doctor appointment printable  (you enter notes & images and it creates an easy to read list of concerns for your Dr with sections to record their answers because, well, brain fog.)

Don’t touch me button – if you need help, a button press will speak for you and explain your diagnoses and how to help you best.

Edit: so, I’ve started the basics of the app & design. Tonight was figuring out a sort of design and got the text to speech working (much more to come), but this is what it looks like:
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