Designer gift card holders

There are four great reasons to buy  these hand crafted gift cards holders / money holders .  I have over 30 unique designs for you to choose from plus many prints not in my shop. Come and take a look.

People tell they love them because …

1) They turn a gift card or voucher that is a standard design every one will have into a personalised surprise gift.


No one will guess an iTunes gift card is tucked away inside an envelope with their favourite giraffe print and hand woven button fastener. And afterwards they will have a lovely keepsake to use rather than a throw away piece of plastic they will never remember. 

If Christmas and other special occasions are about memories and thoughtfulness then a personalised present is the perfect gift. 

Whether it’s traditional winter prints, new baby prints, celebration floral or wedding patterns or sports designs, my selection of designer papers (heavy weight premium textured card form sustainable sources for many products) have something’s for everyone. 

I also have thousands of prints not in my Etsy shop – on pretty much every possible theme so do enquire so I can make a present that’s right for you.

What else are people loving?

As well as for presenting a store gift card or voucher in a more personalised way, what about presents which haven’t arrived or don’t have a physical voucher to give?

What if your tickets are held at a venue and you have nothing physical to give?

More and more websites offer online vouchers – where you print off a code the recipient can redeem in an online store. 

Perhaps the most impersonal gift is a home printout stuffed inside a shop bought card! Not any longer.

We provide a colour coordinated insert with every gift card holder for you to present the voucher code or write your own message e.g. ‘ tickets to see Phantom of the Opera to collect at the venue on ….’ .


Gifting money

These are perfect for gifting coins and notes.

One final use – the gift of time or promise 

Some families like to use the insert to write their own gift of time or promise e.g. ‘ A family day out at the zoo’, ‘Gym membership starting in January.’, ‘A day out to watch [sporting event name].’ 


New parents might want to redeem a coupon for a night of baby sitting or a night of cooking …. there are so many possibilities.

Each gift card holder plus insert ranges from £2-2.20 and are available from my Etsy fundraising shop 

https://www.etsy.com/uk/shop/OhHowLovelyGifts

All profits to support adults living with Dystrophy in the U.K.

Glowing Christmas lantern cards 


​​​Instagram video link 

These cards are starting to go in my shop – and I’ll be making some in my Itsy Bitsy  range of A7 cards very soon.

These pretty lantern cards are designed with an opaque middle layer, made from parchment. When a battery powered tea light is placed behind, they have a beautiful glow. I like to use a flickering warm orange style tea light so it looks like a flame and creates some movement.

Designs will include:

  • Snowman
  • Snowflakes
  • Nativity 

and can be pre ordered on OhHowLovelyGifts on Etsy UK.

*tea light not included.

Crafting with a difference

Hello, I’m Louise and this year I wanted to show people that it’s still possible to create beautiful artwork with a progressive impairment like Muscular Dystrophy.

I have Limb Girdle 2C which is similar to Duchenne. My muscles have gradually lost their strength affecting almost every part of my body.

I’ve been crafting for for around 25 years and over this time I’ve had to adapt to losing the use of my body – but I’m still able to make hand crafted items.

Sometimes I have to shop around to buy products that are easier to use or decant media like glues and paints into different bottles. My grip is barely strong enough to hold a pen and I can’t bend my finger tips to pinch hold things well. I’ve got round this by using tweezers as prosthetic finger tips.

Other times I have to adopt a different method compared to someone with full hand use. Not being able to lift my arms up and moving my hands by crawling with my fingers across a surface, means I have to be very organised in my technique. e.g. Always painting an item or adding delicate details from the top down so I don’t drag my hands over these areas.

I work primarily in paper and mixed art media making dimensional greeting cards, pictures and gift card voucher / money holders.

These hand made items then go on sale in my Etsy UK shop (OhHowLovelyGifts) to raise funds for three charities that support adults living with MD. I’ve also set up a Facebook page to showcase my work and chat with buyers and crafters.

I get so much enjoyment from seeing them come together and the lovely comments from people who receive them. I work with my personal assistants who do a lot of the practical things for me.  They find the materials (I point to photos of my materials kept on my phone), pass me items, open bottles and feed things through my cutting machine. Describing what I need is very tiring so it can take me many days to make a greeting card – often over a few weeks. It might be slow going but it’s incredibly rewarding for both of us.

When I lost the ability to breathe properly and started using a ventilator, the nose piece kept blowing my paper and art materials across the table! It’s funny the first time round but not when your working with fine powders!! My husband adapted it for me so it blows away from my work surface. Sometimes you have to think of ways around things – do things differently through invention and modification.

I would encourage anyone to have a go at paper crafting because of all the benefits it can bring. Creating art is good for the mind, gives a sense of accomplishment and is immensely enjoyable .

The three charities I’m supporting are:

  • Muscular Dystrophy UK

http://www.musculardystrophyuk.org/

  • The Neuromuscular Centre

http://www.nmcentre.com

  • DMD Pathfinders

https://dmdpathfinders.org.uk

The future – A word that cuts like a knife

The future. Tomorrow, next week, Christmas, next Summer …. these words can be the harshest ones to hear if you live with a medical condition that is destroying your body. You might not make it into this future – and it hurts like hell.  I’m going to share with you how I make this hell a happier place to live – so if you want a totally doom and gloom blog then look away now.  Happy Back to The Future Day. 🙂


My different future.

You probably don’t realise it but people are always talking about the future. Maybe it’s planning a day out at the weekend, deciding on what food to buy for the week ahead, a forthcoming birthday, booking next year’s holiday, eagerly waiting for a favourite film to be released in the coming years.

The future can be the next minute, hour, day …. some people with life shortening medical conditions work though life one minute at a time – particularly when you aren’t ‘well’ or in a lot of pain.  Others work to weeks or years – everyone is different.

When you have an impairment, where your friends with the same impairment and age suddenly drop dead – it’s a very different sort of life. My life is characterised by not planning much more than a few days in advance where possible and being prepared to cancel plans on the day if I wake up and feel unwell.

Childhood perceptions of the future.

Parents of children with Muscular Dystrophy worry a lot about ‘the future’- maybe because there is so much emphasis on what a ‘normal’ life should look like e.g. walking upright, achieving at school, becoming an adult, getting married, earning a living etc. Once parents have a disabled child sometimes you can see they immediately grieve for the loss of their child being in their future.  I think this is instantly damaging – yes their child might die as a teenager but like me and many of my friends – they might also live to be 40 or even 50!! Oh yes, they might also graduate with honours, get married, become parents and earn a living …. so here is

 STRATEGY ONE: Don’t believe everything a Dr or medical book says. They can get it very wrong and lead you to fear what might not happen for many many years and restrict what you do in life.

I wrote myself off – back in 1985 I was 3 years and many falls into my diagnosis. People like me died when they were teenagers. I intentionally never played ‘House’ where you pretended to be a mummy in a make believe future, because that wouldn’t be my future. I’d be dead. What was the point. Yes a 10 year old child can think like that. As the years went by, I got nearer my late teens and didn’t feel like I’d be dead soon … actually, apart from not being able to walk very well and mostly using a wheelchair, I didn’t feel near death at all. So, I changed my mind and decided to live like I’d get to 100.

STRATEGY TWO: Death dates are rubbish – I ignore them! Don’t write yourself off too soon. The future is different for everyone.

When I was in my twenties I asked the Dr what age do people die now? He said in their early 30’s.

When I was in my thirties, I asked the Dr what age do people live to now? He said maybe 40.

Last month I was 40. I have lived long enough to be able to wear my grey hair as a badge of honour and a reminder to stick two fingers up to those Dr’s. I survived. I made it into the future they said I would never had. THAT is a good result don’t you think?  Good job I didn’t take their prediction too seriously.

Don’t waste time

Here is another time wasting trap that you can easily fall into – the search for a cure.

STRATEGY THREE: Don’t waste too much time looking for a cure … get on with life with what you have.

Maybe a therapy will be found, maybe not. Don’t spend days scouring the internet for the latest research each week, constantly campaigning for research or trying new drugs. Have a little read then get on with life. I see so many people spending hours and hours every week fundraising for a cure, reading up about research … all the time precious days and hours are wasting away just like your body. I’ve seen someone spends hundreds of pounds each week on a so called ‘miracle diet’.

IMG_0841
Snake Oil, targeted at people who fear their future with dystrophy. Diet alone is not going to cure someone – here is my diet tip when time is short.

STRATEGY FOUR: Eat what the hell you like or love and be happy.

Food is a pleasure for me. I love eating curries, chocolate and anything with the word cheese in it. Eating makes me happy. Eating is something I won’t always be able to do because MD eventually stops you being able to swallow.


So to hell with diets. I’m going to eat whatever I want – sensibly. I don’t want to put on weight or clog up my arteries – especially when MD can give you heart problems as well. I don’t want to accelerate my death but I’m certainly not going to hold back on things I love! I will be creating memories when I can no longer swallow and that is my way of dealing with the future.

Awkward conversations

It’s harder to join in with conversations when your future is unsure.

Imagine this one – you are at the hairdressers and they ask the classic “going anywhere nice on your holidays this year?”.  What a conversation killer to say, well actually this time next summer I might be too ill to go on holiday or might even be dead.  Even something as simple as ‘Shall I book the cinema tickets for next week’ can be tricky. The true answer would be I can’t commit to going out because my health may take a nose dive. Of course if you are well, you’ve missed an opportunity to go to the cinema with friends, but on the other hand you haven’t wasted money or your friend’s time.

STRATEGY FIVE : We generally only book hotels, restaurants if they have refundable or zero cancellation fees for example. If I am not well then we can cancel without losing money.

STRATEGY SIX: I do more things alone or just with my husband – because there is less pressure to have to attend events when I am not well. I don’t like messing people around if I suddenly have to cancel – and not everyone understands.

Valuing friends

The majority of my friends have impairments – and most of them have progressive medical conditions. Some could die at any moment. It’s hard to suddenly see your friend’s name on Facebook with RIP next to it. Normally you wouldn’t be bothered if your healthy friends hadn’t been around social media for a while. But with my friends it often means only one thing … that heart stopping moment where you rush to their profile page, preparing for the worse.

I wonder whether the thing I just shared on social media might be the last – and what will that say to people who might visit my memorial page! What lasting impression will I give people … it’s kind of amusing. Read your last tweets/retweets and status updates and see if that is how you want to be remembered. It might make you think.

So maybe we value each other a bit more and the time we have – e-mails and chats are responded to quicker – tomorrow may never come.  We joke more about the future and about being old with our 20 year old friends. Birthdays become very poignant – a celebration of making it to that age and a harsh reminder of how little time might be ahead.

Live life quicker

STRATEGY SEVEN – pack as much into your life whilst you can.

It’s the classic – don’t put off doing something today because you think you can do it tomorrow.


You have to pack into life, the things you want to do or experience, in a much shorter time.  It might be something as simple as having a favourite meal or as big as a trip away to somewhere you’ve always wanted to go. Sometimes things are just not possible and you have to have a ‘next best thing’ strategy. I substitute the ‘go round the world’ adventure for a jaunt on google earth or the immersive experience of interacting with world travellers live on Periscope from the comfort of my own home.

Final thought

So, like Marty in the classic movie we mark today – living without a definite future can be tricky, sometimes we see our image fade before our very eyes. Missing from the albums of future weddings and special occasions. Sometimes it’s amusing and brings up unique conversations.   Most times it’s pretty darn good and not set in stone – but I AM disappointed we haven’t invented the hover chair yet ….. See you in the future ….

Dogs, Dystrophy and Charity

Harrison_s_Fund_AdvertisingYou might have seen this advert recently – and fallen victim to what many have felt is false advertising. The advert was not to save a dog as it first appears – reading on you discover it is the latest controversial advert from the charity Harrison’s Fund.

Harrison is an 8 year old boy who has Duchenne Muscular Dystrophy and his father is CEO of the charity.

 

 

His father says on their website:

“I’m sorry if some people find our tactics upsetting, but the awful truth is that my son is dying and I’m willing to do whatever it takes to save him.”

 

This particular campaign involved two digital adverts – one featuring the dog and another a picture of Harrison. The idea being to show that people are more willing to support animal charities than those for children. Not surprisingly the one with the request to save the sad looking dog received twice as many clicks.

A debate then followed after his father followed up the publicity with further articles about the reasons behind the advert like this one in the Telegraph and also in the Huffington Post (and possibly elsewhere) – generating huge publicity for the charity.

It follows a word wide debate on their previous campaign “I Wish My Son had Cancer”.

Harrison_s_Fund_2Outrage

The first campaign was a shocker – and many of my friends who have Duchenne and similar types of dystrophy were as outraged and disgusted as me.

  • Disability Hierarchy

This is basically the damaging notion that one impairment/disability is more deserving in need or ‘worse’ than another (or gains more attention or legitimacy than another).  A social pecking order developed of ‘worthiness’.  It is one of the many disability research areas which looks at the effect this has on disabled people and society as a whole. A hierarchy can be influenced by how visible the impairment is, life span expectations, ‘curability’, pain levels involved or things like culture, religion, ethnicity and even politically.

e.g. it impacts priorities and moral issues e.g. if it is worse to live paralysed than it is with depression (according to our personal hierarchy of ‘what is worse’), we should allow paralysed people to die in euthanasia legislation, but not people who can’t stand life with depression – because its ‘not as bad’ or they are mentally impaired (lower down in the order).

A pair of Deaf twins, who were going blind, were permitted to be euthanised in Belgium because the government understood ‘how unbearable’ life would be – despite many Deaf Blind people living fulfilled lived. People often make choices like agreeing to vote for assisted dying laws, because they are ignorant of the truth and have internalised a hierarchy.   All people who feel they are in an unbearable situation should have support – but sometimes a person with a mental health condition gets prioritised for therapy and medication over someone with the same feelings that are put down to inability to cope with physical problems (and often not offered mental health support).  One is offered support to prevent them from killing themselves – the other is encouraged to pursue their request to die.

Dangers

Hierarchies allow human judgement of others, and judgement of our self worth to influence our decisions and life choices – often based on inaccurate information.  This is really dangerous. E.g parents are more likely to choose abortion of a child with Downs Syndrome when given negative impressions of what their life could be like as opposed to those who have had balanced information or met someone living with that condition.

As such, comparing illness or disability, and promoting one as being worse than another can be very damaging – especially when the effects of most conditions vary considerably from individual to individual.

No comparison

Comparing one illness to another and creating a hierarchy of impairments with the ‘worst’ at the top is never helpful.  How can any parent wish their child had  cancer? Cancer might take a child’s life yet some people with Duchenne live into their 40’s with improved health and social care.   A number of people have had both cancer and dystrophy…. and that’s pretty rough too.

You can not define what is ‘worse’ unless you are perhaps comparing only life span where ultimately there might be a chance of cancer treatment to be free of that illness compared to a genetic condition with no cure.

Long life shouldn’t be the ‘goal’ – quality must count for something – yet so many charities focus purely on finding the golden ‘cure’.  I wonder, if in 10-15 years time, when Harrison might be thinking of perhaps going to University, living in his own home, dating, getting his first job … will they regret campaigning so hard for a cure that still hasn’t been found and not looking to support him in his adult life choices as well?

  • Misleading?

The charity was saying things like “no treatment, no cure, 100% fatal … certainty of a very short life, no drugs help”.

Life is 100% fatal so there is no meaning in the word other than to draw the reader to register ‘fatal’ as ‘really deadly, act now’.

Let’s look at the statement that says there is no treatment. There are physical therapies, surgeries and some medications like steroids that are beneficial and prolong life. Yes there is no ‘cure’ but there is no certainty of  short life … like I said, I know many people who are 40 + years old and still alive.

If life was so bad, how is it that people I know with Duchenne are Drs, artists, musicians, photographers, authors, web designers, managers …. not bad for a 100% fatal disease? Yes, I have friends who have died in their 20’s and 30’s but not before they gave life a great shot, some were married, a few had children, just average everyday people living life. Let their lives be the hope we look towards.

  • Hope in adults living with Duchenne

I feel charities like this can be misleading in the picture they paint of living with the condition. I also feel for Harrison, growing up in a world of ‘doom’ being at the centre of a charity which speaks little of the positive life you might have with a rare disease.  I hope as he grows older he can meet with young men and women who will inspire him to look beyond these strong words and live in the hope of the great things that are possible. I hope other children with Dystrophy don’t see these campaigns and live in fear of death before their parents have had the opportunity to talk with them about their future in a balanced way.

  • Campaign success

However, the campaign did what was intended and donations went up 300%. Effective yes, but it came with a price – the cost of disregarding the social consequences concerning how reactions to the advert might affect children and adults with dystrophy and other impairments.

And the campaign about animal charities getting more money than a ‘dying child’? 

Did they really need the excuse of ‘let’s see if animal charities would get more funding’ to run this shocking campaign? Surely, it’s common knowledge that charities representing specific types of rare diseases are not going to get nearly as much funding as those for animals (or even human charities for say cancer research)?

  • Charity giving has a hierarchy too – and animals generally trump humans with rare conditions.

IMG_4562

Yes, people care about animals, chances are, most homes have a cat, dog  … large numbers of people can relate perhaps to a distressed animal because they have them themselves.

People who don’t have children with dystrophy or a disabled child, can not relate as easily if at all.

People donate to charities which personally touch them or they feel drawn to …. whether it’s saving children, donkeys, rain forests, snow leopards … that is just the way human beings are.  You can imagine your £5 buying a pet toy or dog food …. but sending £5 to a charity that funds research is hard to visualise exactly what you are paying for. E.g it feels psychologically better to know you have paid for one meal for a dog or even one vaccination for a child in Africa  … compared to contributing to a small part of the hourly wage of a research scientist.  Many people give to feel better and giving to research looking at a single medical condition like Duchenne (or even a single genetic type of Duchenne) is simply not as gratifying as ‘buying a vaccine’ that will definitely save an African child’s life.

  • The dangers of focusing only on research

It’s also a sad fact that people will choose to ‘save a child’ over ‘save an adult’ with the same condition. Only one charity I am aware of supports adults specifically with Duchenne (and is run by people with Duchenne) – a forgotten generation because people were so sure they would die before adulthood or a cure would have been found by now.

Does that mean that charities should pull out the pity slogans, be dishonest or use shock tactics to get your money? Do we like to feel duped? No we don’t.  I think charities should be responsible in how they portray dystrophy or any other condition they are using money for – and engage with the public in a decent and honest way.

I would not like to ‘take a cure’ if it was funded through lies, manipulation and campaigns which were socially and morally questionable – but maybe others are ok with it?

 

 

 

 

A rare find

When naturalists discover a new species, in remote corners of the world, they leap with excitement. Naming it, classifying it, protecting it, saving it for humankind. They share it with the world, write scientific papers on it, take photos and samples to understand it’s cell structure or physiology. How does it live, how did it evolve, what are the conditions it needs to thrive, how does it fit in with the ecosystem… so many questions bringing a flury of research to learn more.

This is what happens with the discovery or a rare animal and this is what happens when science discovers a unique human – like me.

We tend to get classified, photographed, probed and questioned to see what makes us tick – then people write papers on us and try to figure out how we work to share that information to help others or for scientific documentation. The race begins to find a way to fix what went wrong before we expire – funding permitted. Like a rare animal, sometimes our bodies, or parts of us end up in laboratories and museums …. I think part of my leg is still frozen in a test tube somewhere in Newcastle.
A unique person not a lab rat.

LGMD

I have unique DNA – a unique genetic default.  My mutations don’t do anything exciting like give me super strength – in fact it’s just the opposite, they take away my strength, more and more each day.

In the UK there are around 70,000 people effected by Muscular Dystrophy (MD) and similar muscle wasting conditions. I am one of them.

Out of the many types of MD in the world – I have Limb Girdle. The prevalence of these types of dystrophy can only be estimated – anywhere from  1 in 14,500 to 1 in 123,000 [van der Kooi et al 1996].

Specifically, the type I have is Limb Girdle 2C.  In the body there are 4 sarcoglycan genes – I was born with a mutation and I can’t make a protein called gamma sarcoglycan.    Around 1 person in 178,000 have a type of sarcoglycanopathy.

 

globe3

A world apart – brought together via the Net.

In some parts of the world more people have this mutation and in other places nobody knows how many people are affected.

Studies found that in New Delhi, India 11.8% of people with LGMD had sarcoglycanopathy. In Japan it was 8.8%, Netherlands 25% and 55% in Brazil. [SourceLink]

So – in some places it is easier to find someone with the same condition – for support and understanding – and now with the internet, people with rare conditions can easily find each other and create their own support groups and sources of information.  All the most useful information that helps out on a day to day basis has come from other people with the same or similar condition.

 

ducks_me

Living with a rare disease

Statistics like these makes me a rare individual and today, 28th February is Rare Disease Day 2015 – which is all about what it is like to live with a rare condition, and how it effects families and communities.

Sometimes things so rare don’t attract research funding, so it can feel there is no hope. LGMD2C certainly doesn’t attract the research funding like Duchenne MD does – chances are you’ve never heard of my type yet it is pretty much the same as Duchenne in how it affects me.

If you know me then you will have a glimpse at what life is like – at least the physical practicalities – and maybe that’s the best type of understanding – just knowing and interacting with me is possibly insightful?

Don’t just be aware – do something!

Being aware of the name of my condition, clicking ‘like’ on Facebook or similar won’t make treatment any more likely – the whole world could be ‘aware’ and it wouldn’t make the slightest difference.  The awareness day for Limb Girdle is actually my birthday, but I’m not taking part in it.  Coloured ribbons don’t generate action to help make life better.

Some campaigns focus around the ‘help dying children’ concept.  Well how about helping living adults like me – we need help too.  Don’t believe the ‘most people with LGMD2C die in their teens or 20’s’ slogans like this one.  Some do but many don’t.  I’m nearly 40, as are a lot of my friends – and we need support to live without treatment until cell research provides a therapy or ‘cure’.

 

Let’s face it, it’s actions we need …. either hard cash (and lots of it) going into specific research or in supporting people to live with the condition.  In the absence of cash, friendship and voluntary work can go a long way in making life good.  Friendships is free, a signature on a campaign for equality is free, speaking out with disabled people to improve quality of life is free,  caring about how the NHS secures funding for medications, treatments and services for people with a rare disease is free.

For information on Sarcoglycanopathies and research visit Muscular Dystrophy UK

To see what life is like living in the UK with LGMD2C – read my blog 🙂

 

——

 

van der Kooi AJ, Barth PG, Busch HF, de Haan R, Ginjaar HB, van Essen AJ, van Hooff LJ, Howeler CJ, Jennekens FG, Jongen P, Oosterhuis HJ, Padberg GW, Spaans F, Wintzen AR, Wokke JH, Bakker E, van Ommen GJ, Bolhuis PA, de Visser M. The clinical spectrum of limb girdle muscular dystrophy. A survey in The Netherlands. Brain. 1996;119:1471–80. [PubMed]

Rights for everyone or a cure for the select few?

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.

Anyway, a certain bucket challenge these last few months, has seen a lot of money go to one particular charity.

Today I read this article by  Andrew Pulrang who blogs with reference to the MDA telethon & ALS ice bucket challenge.

He writes:

“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.

  • A show of love – the more you give the more it shows you care?

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.

moneyFundraisers for research – when a cure or treatment isn’t what you think.

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.

  • Not all about cures – research might be for therapies to ease symptoms or detect faulty genes or understand how conditions are passed on to children.

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’.

  • Back to research – is it what it’s cracked up to be?

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).

  • Not a quick fix

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!

  • Does a cure mean for the whole body or a part of?

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?

  • Old and past 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!

  • Who gets the treatment?

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.

  • Human guinea pig

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.

rightsWhat 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.

 

 

 

No Sh*t Sherlock – Researching the obvious.

Four months ago I participated in the following research…

“A questionnaire study examining how psychological factors impact on quality of life and mood in people with muscle conditions”

Firstly, it’s about time that people stopped focusing on the physical part of living with dystrophy and looked at the emotional impact. Mental well being is terribly overlooked. I thought to myself, this was finally being taken seriously.

However, a number of participants have been less than impressed by this research and fear it may turn into a report that merely states the obvious.

Your_mood_and_life_satisfaction

 

Here was one particular ridiculous question.

1) Let me think – is my life ideal? Yes is probably as good as it can be given the extent that MD affects me. However, is my life ideal? No, because it would be far better without MD!

2) Same as the above – define ‘excellent’ life conditions. If I wake up alive I consider it a good day and a most excellent start. Generally though, having MD does not make any day ‘excellent’ – I wouldn’t recommend it.

3) Am I satisfied with life? Ehm, in what sense? What does it mean to be satisfied? I’m warm, happy, content, not in continuous pain, loved, live in a nice place, fed and watered and in communication with the world around me – that’s pretty good?

4) I wouldn’t change anything about life if I could do it again?

This is a huge philosophical question. Would the said replaying of life still mean I had MD – or can I change my life starting from when I inherited MD at the point of conception? If I had to live it again with MD – would my life still be in the same country, to the same family, with the same education, forming the same friendships etc?

I can think of people I’d rather not have known, who have been a bad influence – but without future vision, I wouldn’t know it at the time and might still be acquainted with them – or do I get to delete them from my second life?

If I knew the NHS was going to be crap …. I could have started saving earlier for private treatment or equipment. I would have started applying for a wheelchair and profiling bed 3 years before I needed one so it arrived on time.

Are we talking more about a parallel universe with infinite combinations of my life?

Surely we could all think of some things to change if we started again and see if it was any better (not that you’d know unless your remembered life number 1)? A lot of how good life is depends on luck, chance, random influences – or maybe even faith in a path already planned to some extent? Ground Hog Day is proof of what can happen with just one day slightly tweaked!  Opportunities might be worse the second time around? Life is full of ‘should have, could have’ …. change one thing and everything after it could be altered for better or worse.

The fact is, I have the life I have. There is no option to live it again … so why bother even thinking about it! In fact, thinking about it only wastes the time I do have.

So, I’m probably thinking too deeply about this – but that’s just me. I couldn’t pick an answer.

I came to the conclusion that I would change ‘having MD’ to ‘not having MD’ for my second attempt at life – if only to avoid filling out stupid questionnaires like this one!

 

Hurrah….. oh S*@!

Two weeks ago today was supposed to be a day of celebrations and great joy. My special profiling bed was arriving which was the end result of a 2 year battle with the National Health Service [NHS] to supply one.

You can read all about that nightmare on my formal blog.

Anyway, my bed arrived and all was hunky dory. On the same day, I had my ventilator (Nippy ST+) serviced. Basically all that happens is someone visits and checks it’s blowing correctly/calibrated and that’s that. However, my vent had blown its way through 10,000 hours. That’s a lot of puffing so it has to go back to base for a full service. It was swapped with one which was the same model, set up on the same settings and that was that.

Then a nightmare… as soon as I switched it on in the evening I knew by breath two that something was very wrong. It went crazy and was blowing in far too much. When I went to bed it was blowing every 2 seconds and I was hyperventilating. It would calm down a bit and then go banannas. Not only that but on every breath it made a dreadful sound like a dying hoover that had sucked up a whistle. The noise was torture in itself.

We had a dreadful night and it made me feel quite ill. On Sunday we called the emergency support line and the engineers came out first thing Monday. They couldn’t figure it out and declared it posessed. I was given another replacement and that one went back to be serviced. It took me the best part of the week to get over that and getting a virus didn’t help. Two weeks later I’m almost back to normal…. hurrah.

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