A 50th Wedding Anniversary card.
This took 2 days to make but It’s my favourite one this year.
Today we played the board game 10 Days in the USA – well a card game where the board serves as a map with specific colour coded States. It was an interesting ten days – so here’s how it worked out….
The game is made by Out of the Box and you can read the full details, rules and a video of game play on their website. There are others in the series such as Africa, Americas, Europe and Asia – you can even play one or more titles together.
For our first play – I really enjoyed it and think it might become a favourite! It’s won a pile of awards so give it a go.
In the well made box you get the large map, wooden painted card holders and a stack of really sturdy cards to mix up. The quality is really good and the game only cost us £11.49 incl postage.
The card racks have large slots in them – so it’s not difficult if you have limited hand mobility to place them. This would be easy to translate into Braille or textured cards. Players will need to be able to distinguish colours of red, green, blue, yellow and orange both on the board and cards themselves. However, this could easily be adapted for people using symbols or tactile overlays.
You need to be able to order cards and plot a route, remembering three basic rules. The box suggests an age of 8 yrs or over.
So, the game is about placing cards in one of the ten slots on your rack…. so onto game play.
It took us a while to figure it out – one of those ‘it’s easy once you’ve tried it’ type of games.
So the idea is to make a journey, starting and ending on any State. There is 1 card for each State.
Your journey is over 10 days (10 card slots) and in each slot you will have either a card with a State on it, a plane or a car. A car or a plane is assumed to take up one of your days!
Take it in turns to pick up a mystery card from the pile and make a decision where in your rack it will go. Once you have placed it, the slot is filled and it can’t be moved during the filling up process! So place them carefully. The next player takes a card and does the same….. you keep going until your rack now has ten cards in it (States, cars or planes).
The strategy starts with the filling process because you need to keep in mind three rules.
The three key rules are simple.
In this picture, only an orange plane can take you from Rhode Island (coloured orange on the map and card) to Washington (also coloured orange on the map and card). So this was how I chose to spend days 1, 2 and 3, flying from Rhode Island all the way to Washington. I was a bit jet lagged after that one and the in flight magazine was as rubbish as always.
Be careful – there are only a handful of plane cards in the game! The rule book tells you how to fly to and from places like Alaska and Hawaii. I didn’t bother with Alaska – too cold for me but Hawaii …. maybe I’ll stop over in the next game.
I placed my Kentucky card , then a car, then Alabama (top picture below). That made up Day 8, 9 and 10 driving from Kentucky to Alabama. (Note I had to start Day 1 on a State and end with a State on Day 10). After three days of the best BBQ chicken wings and ribs in the USA (so I hear) I arrived feeling full and fat.
Like plane cards, there are only a handful of cars in the game!
So your rack is filled with places and vehicles next to each other that don’t fit the rules – so now it’s a game of pick up and put down to try to make your journey fit the rules over the full 10 days.
You have a pile of mystery cards (face down) and you are asked to place three face up (the discard pile).
So now, it’s your go – you can choose to take one of the cards you can see face up – or pick up a mystery card.
If you like the card, you swap it for one on you rack. Now for a bit of strategy…. the card you are throwing away from your rack, can be placed on any one of the three discard piles, face up. So if you know that another player might need one of these, you can sneakily stop them from picking it up by throwing away your card on top.
If you pick up a mystery card and take an instant dislike to it – onto one of the discard piles it goes.
Now your go has ended – time to see what the next player does.
Remember, there is only one card for each State – so throw away and pick up wisely.
Why I liked this game
Firstly, I’m rubbish at knowing where anything is in the USA – so it’s educational and the State cards have the capital city on them.
Secondly, you can easily see the map and you don’t actually play on the board – so it’s very adaptable.
Thirdly, you have to really think hard where to put the cards, right from the start and try and remember which cards you are looking out for!
Lastly, it does’t take too long and their is a bit of luck involved too.
What I didn’t like
From the start, there were some cards on my rack which I definitely didn’t want to accidentally throw away. It’s easy to forget your master plan and have a ‘oh s&*t’ moment as you throw the one and only card for that State on the discard pile by accident. Hence we got out some buttons to put in front of the cards on our racks to indicate ‘whatever you do, don’t throw these away’.
Today I considered this:
People might fund research but will they support my rights for a better life with as much passion?
When it comes to charity funding, I’ve lived too long with a progressive impairment (and experienced the effects of charity) not to be clear in my mind who will benefit from any money I donate or which charities I want to support. Donating money is a personal thing. I prefer to donate to specific charities, with an ethos that fits my views on disability equality for example or because of the way the money will be used.
Today I read this article by Andrew Pulrang who blogs with reference to the MDA telethon & ALS ice bucket challenge.
“I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they ever are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities.”
This is a hugely important point that gets lost in big fundraisers of any kind that focus on research.
This is what my blog is about today.
We know that 1 in 17 people will be affected by a rare disease at some point in their life – like ALS, Huntingtons, Cystic Fibrosis or Muscular Dystrophy (4 of over 6000 recognised rare diseases in the UK). I’m explaining this because I’m looking at research from the point of view of having a rare disease.
What if the one you, a friend or loved one gets isn’t the one attached to a well funded charity? The person still has to get on with their daily life – living in a society that doesn’t seem to care if you are treated equally or not or receive the best support, medical or social care? One which isn’t bothered if you have equal (or any) access to work, education, leisure, housing, equipment to enable you to move or speak? One that might leave you below the poverty line?
People might fund research but will they support your rights for a better life with as much passion?
As the ice bucket swept across the globe in various formats – I found people’s ideas quite disturbing, especially this one.
I read that one person (family member of someone with ALS) said ‘this (ice bucket donation) would show them they are loved’.
I don’t like the idea of equating the amount of love you have for someone with how much you give to a charity that could find a cure for them.
So, because nobody in my family or friend group has done a major fundraiser for Limb Girdle Muscular Dystrophy type 2C – does that mean they don’t love me as much and want a cure or treatment for me? You can still love someone, and want the best medical treatment for them without proving it by running every marathon known to man – or is society pressuring you into thinking you must?
Reading people’s comments about the Ice Bucket Challenge also opened my eyes to the general ignorance of what people think research means or does.
People more readily support research for ‘cures’ or major treatments – because then people won’t have terrible progressive diseases. Life will be good for them, no pain, living longer, doing ‘normal’ things again, walking, talking, eating, breathing.
Some types of disease can’t be detected until a person has symptoms. Other types can be detected just after conception or during pregnancy, in some cases outside the womb. This gives people a choice to make. Many families have these options already – research has allowed us to detect who might have some of these rare diseases or pass the genes onto their children. So research isn’t all about a cure and there are a lot of other things that need to be funded along side – like balanced information for those who might be affected, emotional support and counselling.
However, it may be possible that, in the future, an infant is cured before they know they had anything wrong in the first place – this is the sort of thing people seem to think research is – full removal of the condition with no ill effects rather than just ‘gaining a genetic understanding’.
The public generally know very little about how research works even though they pile money into it. So many times I read comments suggesting people with ALS would now be cured because of the amount of money going into research. I wish they had taken the time to find out how research into rare diseases works (and how treatments are given or not given if available).
Do people understand how many millions research costs, over many decades of trials before a therapy is available for all. You don’t inject millions into research and expect a cure within the year!
Even if a therapy is found to ‘make right what went wrong’ – it might not be a whole body treatment, and may only work in young people or children where the disease hasn’t progressed enough.
A cure or treatment, could give people back a level of mobility, for example, – but they might still need a wheelchair or specialist support. Maybe they would gain the use of even just one finger – it would be a big thing for the person and worth the research effort … or would it?
Even if a cure came up for my muscles, most of them have turned to fat and just aren’t there – so adding the missing gene to give me the use back, isn’t going to help me without a full muscle transplant as well! I.e. there will still be a whole group of ‘incurable’ people for whom research will be of little if any assistance in it’s current form – *feel free to donate to cybernetic implants – might be a better investment of your charitable donation for some people!
Also, a treatment may exist but is won’t be available on the NHS or only given to a select few people because treatments and therapies are so expensive or ‘unproven’. We have seen how treatment options affected Ahsya King and his family this week.
Sometimes people like myself get asked if we want to participate in research. I have on a few occasions and I had to fund getting to and from the hospital and was never told how the results would be used – I donated my living body to funded research and didn’t hear anything about how I was going to be used (we are talking about pictures of my naked torso showing scolisosis progression and bone density scans – plus the humiliation of being photographed from every angle in hospital photography studio). I felt rather violated – maybe they ran out of money when it came to patient consent and understanding what on earth was going on! Would you be so keen to donate if you knew it could be like this? Is this the sort of research you imagined?
Before you give to research charities
Please, before you donate to charity, do some homework, at least visit the charity website and find out what sort of things you might be funding and how involved patients actually are. Read between the lines, ask questions and make sure it’s something you really want to support.
Be passionate for our rights and inclusion – speak out with us so we can improve our lives.
What would be beneficial to the millions of people with severe impairments, would be if people could also stand up for us when we are struggling to access basic things in life. Abuse and harassment (sometimes random acts of violence to visibly disabled people) is keeping people locked up in their homes out of fear, many have even taken their own lives because of hatred, bullying or threat of poverty. These things are just as important to address, but few seem to care.
Did you know that disabled children and adults are being changed on dirty toilet floors in public toilets and even hospitals – because there are no hoists or changing benches available? Basic hygiene and sanitation is being denied – in the UK! Just one example of how improvements are needed for equality that we simply haven’t addressed. Where do you start when we haven’t even got equal access to a toilet.
People aren’t so willing to stand up for our rights to health care, social care, leisure opportunities, housing, equipment, work etc and even life itself. These things are ignored.
Cures might come one day for some people with specific conditions – but there will be millions globally who will remain severely disabled and excluded because nobody invested in making the day to day things right.
Inclusion benefits everyone – and will always be needed unless you believe in a future where there are no disabled people or those who are sick or frail from simply living longer.
My Trip Advisor Review is here.
If you find it helpful – give me a helpful vote on my profile. Always good to know if it was useful ;-)
Want to visit an aquarium that’s got good access, good food and easy viewing – then this is the one for you.
If you’re looking for a ‘shark tunnel’ and want to touch stingrays – try somewhere else.
If you want a stuffed toy choice of every sea creature imaginable – the gift shop will appeal.
If you’re planning a Sharknado party – this is the place to stock up on all things shark.
If you want to wait 20 minutes for the Sea Turtle to wake up from it’s regular snooze and swim into view for a few minutes, then this challenge is for you.
Remember folks …. Fish are Friends …. and plastic bags kill our sea life. (Yes you will be told this several times on your way round :-p … although your stuffed toy may well be offered in a plastic bag to carry home).
About 9 months ago the dates for the Firework Championships were announced – so we quickly booked into the Holiday Inn, Plymouth. I’ve written a separate blog post on our holiday.
We had chosen the Holiday Inn based on personal and practical requirements. The location meant we could walk to see the fireworks, it had parking and was one of the few places to have air con (as I need to keep the air cool because of my ventilator mask which otherwise gets really hot and uncomfortable)
At the time of booking the only wheelchair accessible room available was one with a double bed.
Out of 211 rooms there are only 2 with wide doors etc and a larger bathroom for wheelchair users which is rather poor. The chances of getting a twin room in hotels with so few rooms are slim.
We made the wrong assumption
When we have stayed at other similar places (Premier Inn, Travel Lodge and even other Holiday Inns etc) where we can only get a double bed, we have been offered a camp / folding bed or sofa bed.
I have to take my pressure relief mattresses, turning equipment that goes under the mattress etc and I use a ventilator – so sleeping in a double bed with my husband isn’t an option. However, he has to be next to me to make sure I’m ok and to help me during the night.
Just before we went I spoke to them on the phone to ask for the folding bed and was told they had a policy not to provide these. Also, if we wanted second room for a carer (which wasn’t adjoining through an internal door, so wouldn’t have been any good for us anyway) we’d have to pay for it.
Making it possible to stay for work or leisure
Hotels have to make ‘reasonable’ adjustment, under UK equality law, to enable disabled guests to use their services – including providing aids and equipment. I’m assuming this is why the portable bed is often provided for carers in other places.
Another example is that if a person can not use the bath they can request a bath lift at one of the major hotel chains. Another chain offers low beds that can be raised on blocks to suit different height requirements. It can make the difference between going or not going on holiday.
Also, it’s not only holidays that are the problem, I’ve been to many hotels in the past for business trips, attending conferences or running training events for my company – and it really made working life difficult.
Basically, affordable, portable equipment that can help a range of guests have a much better stay are one of the things they can do for customers.
Holiday Inn isn’t cheap, we didn’t want to pay double and we needed and wanted to sleep near each other. My husband didn’t want to sleep on the floor – so on principle we felt unwanted and cancelled – moving to the Future Inn.
Since then, we have had an apology from Holiday Inn after I made a complaint. The manager was very polite and wrote in detail about the facilities they do have and the training provided for staff. He also explained that they do have a policy of offering a free room for carers and will consider a portable bed. I hope this is a real genuine consideration.
I would like them to understand that things like a portable bed would have made all the difference and is better than the other option of us taking a camp bed or my husband sleeping on the floor.
I suspect many other people are in the same boat as us (from what my friends have been saying) and I know some wheelchair users who sleep in their chairs because of the ‘bed’ problem. It’s hard finding accommodation when most hotels only make 1% of their rooms wheelchair accessible.
Access for people with mobility impairments is more than wide doors and a few grab rails – its also about giving accurate information so that people can decided where they want to spend there money. We need a higher proportion of accessible rooms to choose from – that have been designed in a way that will benefit a wider proportion of disabled guests – not just mobile wheelchair users who don’t need assistance.
About 9 months ago the dates for the two nights of fireworks were released – so we quickly booked the two of us into a hotel in Plymouth. I’ve done a separate blog on why we had to cancel our original booking with Holiday Inn.
Anyway, to cut a long story short, Kevin would have had to sleep on the floor as they didn’t have a temporary camp/sofa bed in the room like other places we have stayed – so we booked a room at the Future Inn.
Back to the Future?
Not quite – we won’t be going back to the Future Inn – for one reason which is particular to people like me who need a pressure relief mattress. You see, the Inn was lovely, staff were nice, we had two double beds, easy parking and a wet room / shower – yet once we had put my mattress on the bed it was too high to get on!
Incidentally, you couldn’t use a hoist neither as the bed plinth was wooden down to the carpet. Also, there was so much furniture in the room I couldn’t get to the bed without scraping my power chair along the bed on one side and the fixed table on the other. There was little room to turn – you went in forward and generally came out backwards.
So for our requirements we really struggled with Kevin having to lift me on the bed and then from the bed onto my mattress. We rarely have this problem as in other places the beds have been lower – with the option to raise them on blocks in some places. This suits everyone – but this Inn have yet to understand the true meaning of ‘access for all’ or at least ‘most’!
On the plus side, we got to see how our modified toilet chair worked in practice and I was able to have a shower for the first time in about 5 years which was rather nice considering I only ever have a sink wash.
Fireworks Night 1
So no fireworks in the bedroom aside deep frustration …. but loads of them out on the Hoe. The first night we drove to the Park and Ride a few minutes up the road. We were dropped off in the town and walked nearly a mile, with the rest of the Pyro maniacs, onto the Hoe for the giant showdown.
There were thousands of people as we expected, a fun fair and the usual array of chip and donut vans. However, we didn’t anticipate on the fireworks being set off far below us on the water (we were basically on a cliff). Even at their highest they weren’t visible overhead- so you needed a clear line of sight to the sea.
Their were 3 displays each night. However, once the tall fat lady stood in front of me I couldn’t even see the sky! I stared at her rounded behind and saw nothing of the first set, about 40% of the second set leaning out the side of my chair around her chubby thighs and about 90% of the third set.
All in all, not so successful. We drove hundreds of miles to see a fat lady’s bum …. not what I had imagined! Incredibly frustrating. Kevin took a video so I watched that instead.
Tomorrow we would try plan B – arrive hours early and pick a different viewing point.
On the up side, we stood next to a Chinese guy with a mental health problem who was muttering all sorts of random sentences for the duration, whilst doing throat singing and waving his arms in pure delight at the pops and bangs. He was having so much fun oohing and ahhhing in-between the mutterings that we were sucked up into the bubble of pure joy that was emanating from him. That was more magic than the fireworks.
Earlier on in the day we went to the aquarium to get a fish fix – that was really good and they had good food. You can’t go wrong watching a turtle or jellyfish. As is customary I took 200 blurry blue photos of fish and videoed the jellies.
It was nearly 2.30 by the time we got to bed, the queue to the park and ride was longer than anything you’ve ever seen at Disney. So, we got in and the night ended with hubs throwing me onto the bed, quite literally. ZZZzzzzz
Fireworks Night 2
After a day on the South Devon Railway (great access, friendly staff and a lovely journey), we put into action Plan B. We parked at the aquarium around 6pm to get a place in the multi-storey, went for dinner, then ambled round to the front of the aquarium where we had a great view of the fireworks. Away from the funfair, the crowds were less dense and more civilised! It was nice and quiet with the gentle hum of people wondering if it was ever going to start after a 30 minute technical glitch. There were 3 sets on night two – each company got the usual 10 minutes to show off what they could do.
I was sat next to a small child by the harbour railing. She was about six years old and stood as close as she could to my side and just stared silently and intensely at me for a whole 10 minutes during set 2 . Alas I was trying to watch the fireworks so there wasn’t the time for conversation. The thing was, I could feel her breathing down my neck and as I turned my head to see what she was doing we met virtually nose to nose. She still had a perplexed look on her face, clinging like a limpet to my armrest which started me laughing. I give her top marks for her endurance and finding me more amazing than the fireworks she was missing. Maybe she was a robot child or something – who knows.
So it was another late night and after more mountaineering we made it into bed.
Going home day. A nice late checkout, we went home via a slight detour for Kevin to do some bridge spotting. Now, what he didn’t tell me was to get to the bottom of the Tamar bridge, at Saltash, to take a photo, involved the steepest road you’ve ever seen in your life – the sort you would normally go down on foot attached to a rope and harness. How anyone can live on that hill is beyond me. This little escapade also meant driving over the bridge twice – with only a little barrier on the way back to stop you plummeting to your death. Lovely.
Our pond was home to frogs, toads, dragonflies, newts and even a baby grass snake. Then it sprang a leak and as the water disappeared so did the wildlife.
I designed our new wildlife pond and apart from Spring plants it’s ready for critters to move in.
I used an Atlantis fibreglass pond and the tumbled pebbles are paddle stones – welsh green slate of course. They look white in dry weather and turn green when wet. All the plants are high butterfly and insect attractors.
The large plum coloured slate stones have holes in them so I planted Lime Moss for maximum contrast. They are raised above the ground slightly so toads and bugs can discover them for a possible winter home.
On Thursday my Rilli (Red shrimp with transparent bands) known as Mrs Perfect, turned opaque within 24 hrs and died.
The next day Munchkin died and Mr Spotty Legs is missing and presumed dead. One of my blue ones has gone terribly pale and I have only one mature Rilli left with lots of babies.
so what happened
It’s one of three things that leads to opaque shrimp, from what I’ve read. The colour is caused by tissue necrosis.
1) Sudden shock from a change in water conditions or injury.
2) bacterial infection
3) Fungus infection
My water parameters have been stable. I drip fed them rainwater last week over a few days which lowered the TDS but that is all. All were munching and browsing until they died. I’m ruling out sudden shock.
Bacterial infections tend to slow down shrimps and give them lack of appetite . No obvious signs of illness apart from the sudden opaque tissue.
So, without a microscope I’ll never know. I did another filtered rainwater change and will try dosing with API Melafix. It’s a natural treatment to help fight infections. General antibiotics can only be prescribed from a vet in the UK and would cost a fortune. In the USA you can get some over the counter :-(.
I’m also going to try Seachem Paraguard. This treats external parasites that might have led to shell damage and infections getting in. They won’t say whether it’s shrimp safe but some shrimp keepers use it ok and it breaks down after 24 hrs.
So wish me luck!
It’s costly being a disabled person. Scope are running a campaign at the moment highlighting the costs people incur. Visit Scope UK: Extra Costs.
Here is how I saved myself a lot of money this week.
There are many types of costs but I’m looking at products and every day living items in this blog.
Day to day items that you need are often quite expensive and specialised – i.e. they are manufactured as ‘disability’ items.
This blog is about one such item – a system to enable someone to independently drink if they can’t move their arms or legs.
Here is an example of how disabled people like me (and their families) have to be usually quite creative in ‘doing it on the cheap’. It also shows you the mark up of items sold as ‘disability’ products that might be sold elsewhere for the general public.
So how do you reduce the costs of items that you need?
Cost of product: Drinkup Travel Lite – £98.00 GBP ex VAT
Items – Clamp for wheelchair, flexible arm, bottle holder, CamelBak Bottle (choice of 2 colours) and bottle adapter (long straw). Also some adaptors, allen keys and clips plus instructions.
My kit – £33.19
I sourced my own items from Amazon one afternoon. Free delivery.
CamelBak Bottle – my choice of size and an array of colours
CamelBak Trinkadapter (the long straw part).
Total cost of the same items (bar a few ‘ties’ to hold the bottle to my chair) = £33.19
Footage from last night in the garden – the best bit is when he falls over, twice!