Gadgets I use to make my disabled life easier

I have got Charcot-Marie-Tooth disease. Its a disease that affects the peripheral nerves, it is hereditary and it makes me weak and wobbly and frequently tired.

Because of this disability I use a fair few 'aids' to help me live normally. I don't need a wheelchair (yet!) but I do use a stick for balance, especially on uneven ground or in busy places where people might bump against me. I don't want a repeat of the falling down the escalator on the London Underground experience! I have a few sticks and I'm thinking of getting another. I like them fancy and the collapsible ones are handy. There always seems to be a good selection on Ebay. 

In this post I thought I would share a few of the things I use to make life easier. There are Amazon affiliate links, that doesn't cost you anything to use but Amazon give me a tiny (and I mean tiny!) percentage of the profits of any sales from them. 

To help me dress in the morning, as I have very poor fine motor control in my hands and fingers, I use a sort of modern day button hook. To say it's been a life changer is an understatement! For years I relied on my husband to button up the duvet cover and to do up the small buttons on my shirts. I had actually stopped buying clothes with buttons until I bought this gadget! It also helps with fiddly zips, as long as they have a hole in them, those annoying 'cute' zip pulls you often see on ladies clothes that have no hole in are a pain! (since buying this gadget I have also purchased some beautiful vintage button hooks, once needed for fancy lady's boots and gloves they are excellent for zips and pretty as well!)

 You know how in the movies when the hero gives a necklace to his lady love and he just reaches round behind her neck and 'click' the clasp is fixed! Or the lady removes her jewellery at the end of the day, just a quick movement under her hair and the necklace clasp is open... well I have never been able to do that, and now I struggle even using a mirror and doing it where I can see! So I bought some magnetic necklace clasps, I worried they would be weak and fall open but they are amazing and now I wouldn't be without them. 

 I can't open jars because of weakness, there are lots of things o the market to help to open jars, gadgets that release the air pressure, twist grips. rubber sheets, but I now use a tiny robot. My electric jar opener is just the best thing! 

 I am also the proud owner of a granny grabber. I'm fairly sure that isn't it's real name, but standing on a chair when you are wobbly is pretty risky, so I use a long handled grabber when I can.

When walking upstairs I need to hold onto the rail because of poor balance. This means carrying anything up or downstairs is difficult, small items I can put in a stair basket but cups of tea? I can't use a regular tray one handed, but this modern take on the butler tray is perfect and I use it a lot. I feel like it would be useful to anyone really, allowing you to open doors etc and giving you one free hand while you move things about. 

 Modern cans and tins no longer need can openers (though if they did there is an electric option) but eve a ring pull is tricky when your hands are like mine. So I have a small gadget to pop the pull up and then to pull off the lid. 

 Life is not all doom and gloom of course and I enjoy a tipple. I love to drink cava (Spanish champagne) and of course the cork can be a struggle. You can buy a proper thing to loosen the cork I think, but I use a set of antique nutcrackers, just because I can. 

 At our entrance way is a boot remover, I am finding it increasingly tricky to bend down and VERY tricky to have the strength to remove a book without hep. Ours is a cast iron boot beetle. 

 So there are some of my useful things, and yes I notice being disabled is expensive. If I find any more useful gadgets I will let you know and you can share any you use in the comments.

Living with an invisible illness

Charcot-Marie-Tooth can be an invisible illness. It isn't always. Some people with Charcot-Marie-Tooth are in wheelchairs or wear leg braces/supports or use walking aids. Many of us have clawed toes and fingers. Some have curved spines.

But it can be invisible and in the early stages it often is. Charcot-Marie-Tooth, named for the three Drs that discovered and diagnosed it, is a type of (oddly common) neuropathy that affects both motor and sensory nerves. It is usually inherited. In fact, it's other name is Hereditary motor and sensory neuropathy.

I was diagnosed with CMT in my 30s after years of being bad at sport and even bad at walking! I was teased as a teen and have struggled in some jobs due to my poor motor skills (very weak hands and clawed fingers). It was a relief to be diagnosed.

Knowing why you can't do what everyone else can is actually very liberating. I can tease myself now, shout "oh you silly helpless cripple!" when I can't remove the bank card from the ATM (no pincer grip with my fingers), and I can use a walking stick on days I feel especially wobbly.

And that's what I wanted to tell you. You might see people park in a disabled bay, with a blue badge of course (I don't have one yet, I may reapply, but last time I tried I was deemed fit enough to walk far enough to get by without one), you might see them get out of the car and pop into a shop, they don't look very disabled do they?

You might see an attractive young lady or handsome young guy wait at the foot of a flight of stairs because both sides of the stairs have people coming down holding the handrail, why don't they walk up the centre? They look young and fit. (I cannot walk up or down a flight of stairs without holding either the wall or a handrail, my balance is simply too poor - I once fell down an escalator on the London underground due to the crowds and people pushing)

You might see someone leave the pub and stumble into the gutter, are they drunk? (TBF they might have CMT and be drunk - *me)

You might see someone in a wheelchair get up and walk, where there are a few steps, to help their mate who has to get the chair down the steps. Has there been a miracle?

Maybe a wheelchair user gets up to reach up to a high shelf in a supermarket, are they playing a prank?

Maybe a women is crying because she can't open a water bottle, what's wrong with her?

Charcot-Marie-Tooth (and many other illnesses) can be hidden,they are still there, lurking beneath the surface, we don't want to be ill, we don't want to be weak. We just want to be able to do the things that able bodied people do every day with out thinking about it.

So this September (and always) think about invisible disabilities, but particularly Charcot-Marie-Tooth as September is awareness month. Try and remember that when a person that appears visibly fit asks to take the lift rather than the stairs, they might not be 'lazy' (if I had a £ for every time work colleagues have joked that I'm lazy when I take the lift I'd have £28) they might need to use the lift. When they take an age to descend a staircase, clinging to the handrail there could be a reason beyond what you can see.

When a grown up asks you to open their Pepsi, think of the embarrassment they already feel, the bravery it has taken to ask a stranger, they don't need to be laughed at or called weak (all of this especially important to tell teens as they start school or college too - CMT gets worse as you age but embarrassment at asking for help from peers increases). Lend a hand when you can.

Be patient, be considerate, be kind.

Image Copyright: designer491 / 123RF Stock Photo and nd3000 / 123RF Stock Photo

What I wanted most as a child

Written for the Post40Bloggers blog prompt Number 82

Something you desperately wanted when you were a child

When I was younger I was terrible at PE. I mean terrible. I had no balance, I was slow; running seemed so easy for everyone else, they made it look simple and fun, they didn't get left behind or fall over and graze their knees. But from about the age that 'Sports' Day' became a huge memory in  my childhood (aged about 9 maybe?) PE day became a day of horror.

I would try all manner of feeble excuses to not take part, faking coughs, sprained ankles, headaches. I would take an age to get changed, volunteer for anything that needed doing that didn't involve actual sport. Fetching the basket balls, handing out and collecting the tabards, setting out the cones...

But Sports' Day itself was a nightmare. Even back in the 70s schools tried to be inclusive, but I didn't qualify to be in any 'proper' races, mine was the ignominy of the 'special' races, full of fat children, wheezing breathless asthma sufferers, and wobbly weak kids, kids like me. And even in these races I did not surge to victory, we stumbled and gasped our way down the 100 yard track like unenthusiastic hamsters, passing the finishing line with the simple joy that it was all over for another year. Nearby the rest of the school waited watching, I imagined them hating us all for being so pathetic.

I didn't join in running games in the playground, I was dreadful at catching a ball. When I turned 12 I briefly enjoyed cross country running, mainly as we all departed at various times, spaced out, there was no way to see how badly you were doing (until arriving back last after the showers were finished and everyone was already in Maths) and you could jog/stumble along the paths in the woodland as slowly as you liked, with no one judging you.(except the aforementioned maths teacher!)

I dabbled with throwing the javelin at age 13 and no one was killed, so I'll take that as a success, but despite my height and long arms I didn't seem to have the strength to fling the javelin very far.

As soon as I was in the sixth form I eschewed sport altogether. Finally I had the power to control my own free time at school and I chose chess. Again I was with the nerds and the geeks, but I was used to it by now, they were my people.

So where is this post going? with its whining and self pity? Well at age 34 I was diagnosed with Charcot-Marie-Tooth (Hereditary Motor and Sensory Neuropathy) and suddenly it all made sense! The weakness, the bad balance, the stumble, the tripping due to foot drop. I wasn't dreadful at sport! I was not bad at all considering I was disabled!

So this post is a reminder to myself. What I desperately wanted as a child was to fit in, to be sporty, to be one of the runners, to be a winner on sports day. But I'd have settled for knowing why, knowing why I was last.

The one where I explain Charcot-Marie-Tooth, a condition I live with

I have CMT (Charcot-Marie-Tooth) I’ve mentioned it in passing a few times. I was born with it, it’s also called Hereditary Motor and Sensory Neuropathy (which sounds both scarier and slightly cooler imo) and that name, rather than CMT (named for the three Drs that identified it) describes more about what it is. It affects the nerves (neuropathy) , it’s there from birth and is passed on (hereditary), and it affects both movement (motor) and feeling (sensory).

The nerves are affected in CMT type 1a (my type) much the same way as they are in MS (Multiple Sclerosis) The myelin sheath (like the plastic cover over an electric cable) gradually degrades over time, electricity leaks out during nerve impulses, so they are weedier, slower and generally rubbish. It affects periphery nerves though, not central ones, so the earliest signs are hands and feet having less feeling and movement.

I showed symptoms at 12, mostly poor balance, and ‘odd walk’ but wasn’t diagnosed until I was 35 and had just had DD. Pregnancy had made the symptoms slightly worse. I have previously had operations on my clawed toes but it had been attributed to ‘bad shoes as a child’, now my hands had started to claw too so the orthopaedic surgeon referred me to a neurologist who diagnosed me first by my walk as I walked into the office! CMT was confirmed by electrical nerve stimulation tests and finally a blood test.

Me in my late teens, ET hands even then!

I mainly have, constant tiredness (due to everything I do taking more effort that a ‘normal’ body). Skinny arms and legs, as the muscles work less well due to less nerve input. Poor posture, bad balance, funny walk, clawed hands….and am the weediest person I know. I need help to open bottles (!), sandwich packaging often defeats me, fine finger movements are WAY beyond me, (DD often has to help me button my shirts for example, once I couldn’t get out of a pair of jeans as I couldn’t undo the button!) I find pegging washing tricky and have to use a grip with my palm not finger and thumb to open a peg. Cashpoint machines and carpark ticket machines often don’t let the card/ticket poke out enough that I can grip it and I have to ask for help…

So, mostly I walk funny, I trip and fall often, (shush, this is nothing to do with the beer consumption) I get tired easily, I’m clumsy, and lots of silly ‘normal’ day to day tasks are tricky to do (though I find work arounds). I don’t (unfortunately) qualify for a blue badge, or any disability benefit. I work in IT. Typing is easier than writing, but cramps in my hands are getting more common.

 Ho hum.

 Hope that answered a few questions.

And if you have NEVER even heard of CMT why not forward this to at least 2 friends? (if you had, just forward it to 1)

Oh and I nearly forgot!! Check out Korea's Paralympic Swimmer Min Byeong-eon.