Yesterday I went to the Kidz Exhibitions 'Kidz Down South' event. For me, it was WAY better than Naidex! It just was.
I spent my time between being Hannah - HMSA Patron, Hannah Esnor - Stickman Cartoonist, and just Hannah, a bendy wheelie looking for solutions.
Here are some of my highlights:
Discovering 'Stabilo' cushions from aatgb.com - positioning aids/cushions. They are soft, you mould them to the shape you want/rest limb in them in a good position, attach a vacuum pump - they 'set' in that position: hey presto ability to relax and stay aligned, no splints involved!! They aren't designed for bendies, and technically it was a seat cushion, but oh my word, SO efffective! (And they liked my stickmen.)
I may possibly have spent ages chatting to the sales guys so I could rest my wrist in soft, perfectly aligned, heaven for as long as possible. (spending several hours slow wheeling round the event was not the best thing to do with hands overused the day before)
Home for Home Care - a residential care and support organisation created by parents who know from experience. They seem a truly awesome organisation. I loved their ethos and positivity. (And they liked my stickmen)
The lady who stopped me to ask about the Helium - had a lovely chat about chairs (and I may have referred her to GBL wheelchairs) It was quite funny cos we were right next to the RGB wheelchairs stand - and there was me telling their customer that a Quickie branded chair was awesome! Sorry, wheelie seller.
DeNovo footwear...ok, so technically they are for kids, but they go up to my size - and they do really cool, custom made Doc Marten style boots, that don't cost much more!
via the 'Stabilo' stall....I managed to adopt their 'base' cushion, nicely moulded to my left arm, for the duration of lunch break.
Sitting outside eating a bacon bap I got chatting to 3 OT's. Did some more HMS educating, 'accidentally' got onto the subject of stickmen, only for one of the OT's to say "The stickmen?! That's you! I've seen them before, they're great!"
go back to return the Stabilo....and fail. Instead I reset it for my right arm and keep it for the rest of the day - wheeling round using both hands, and resting the right one while chatting.
The Association for Paediatric Chartered Physiotherapists was there - so I put on my 'HMSA Patron' hat and had a good chat. Going to put them in touch with the HMSA. (And they liked my stickmen)
Tom Tag - a great way to help kids remember what they need to pack for school. A really good design - you could tell they were thought up by someone who has 'been there'. A practical solution to a problem. (although, of course, my highly biased opinion is that they'd look better with stickman cartoons).
The lady from Contact a family. Turns out her son has autism and HMS, so I put my HMSA hat back on and told her 'our' info was amazing and forums brilliantly moderated. (I also told her I was biased). And of course general chat about HMS and things that can help various issues. (And she liked my stickmen)
The 'hyperbaric chamber' guys (pressurised Oxygen chamber - like for divers with the bends.) 'The Light Clinic' in Reading. Sounds like it might be worth a try - given it can help with healing (constant HMS/EDS injuries) and PoTS 'lack of oxygen to brain' issues. Not cheap at £60/hour, but I've decided to start saving. (And I didn't even mention stickmen.)
Compression gloves. Oh they are heaven. I use sports compression which helps a bit, but the full on compression would definitely help more. So when I see my physio next I'm going to start working on getting some!
Wheelchair Dance Sport Association. Because dancing is awesome. And the random chap on another stall, who I ended up chatting to for ages - the stall was for mobility aids, but in his spare time he runs a dance school for kids, and was keen to include all kids. So if you know any kids with disabilities near wellingborough who want to dance - check out http://www.goldstarzdance.com/index.htm - contact Keir. (and they both liked my stickmen.)
And then back towards AAT to return the cushion again, being accosted by the 'Home from Home Care' chaps on the way past, and ending up selling them my sample set of 'Differently Normal' wristbands.
Time to return the cushion. Never before has it been so hard to leave a cushion behind. I will be getting one. A small one first (costing around £170) Not for using on days out - but to use as a night-time/resting support for whichever joint will otherwise hinder my sleep the most.
This decision was confirmed when I got home. My wrists had been subluxing all day, and needed a rest, so I was sat watching TV with my night resting splints on. Which completely immobilise the hands and are made of hard plastic. Oh how I missed the soft supportiveness of the stabilo. Especially when I wanted to use the TV remote - I couldn't simply use my hand then return it to it's supported position. I could have cried. For not having a cushion I only met today. I'm sure they might work for my ankles and knees too. I even dreamt about the darn things last night!
Overall conclusion? I need to start some serious saving. I need a 'Base' Stabilo Posture Cushion. And possibly more. Some people are fabulous. And I fully intend to have a stickman-selling stall at the next one.
I've just checked the dates. The exhibitions in Coventry and Manchester are both on 'Jab Day' (I have an injection every 21 days which helps me stay conscious) No way can I do a major event then unless my condition management drastically changes.
Fingers crossed that the next Kidz South event is on a suitable day!
(And no. I have not been paid by Stabilo/AATGB to write this. But I might see if I can wangle a good discount, given that I'm telling the world that their products work for me....It's ALWAYS worth a try.)