A hot water dispenser – I am now unable to safely lift or fill the kettle to make a cup of tea. With this dispenser, you push the button, place your cup underneath and voila! You can use a small cup or jug to fill up the water tank at the back.
I went for the Breville Hot Cup from Amazon Breville HotCup Hot Water Dispenser
A plastic mug – Normal mugs and cups are now also too heavy for me. You do get ones with lids, sort of an adult style sippy cup. But I prefer the aesthetic of something like this. I have never spilled my tea, I will pass on the lid until I feel I need one. I will probably get some plastic picnic plates aswell because dinner plates are too heavy.
Yoga socks – I have drop foot and poor circulation in my feet as a result of MND. Because of the muscle wastage slippers feel like an obstruction or hazard to my walking. I have laminate floors so socks are also hazardous. Yoga socks have great strong grips on them. So when my feet are cold I put these on. Stops me from sliding and doesn’t obstruct my walking indoors.
A smart power strip – I have been struggling to turn my electric blanket on and off. I couldn’t see another blanket which had a better control system that I would be able to work. So I bought one of these smart powerstrips. I can now turn my blanket on and off using my phone. It’s a short term solution to a problem. I’d love to get my whole flat adapted to turn things on and off using my phone. But this works well for now.
Silk sheets &/or Pjs – I have tried both silk sheets and some pyjamas to assist me turning over in the middle of the night. I should say it’s not safe to use both at the same time! Just one or the other, otherwise I would never be in the bed and would spend most of my time on the floor! I feel the pyjamas work better for turning over. My body gets quite sore lying in one position all night, trying to turn over I feel like a turtle stuck on my back. I’m not able to turn over and stick to one side of the bed, so the silk pyjamas and/or sheets definitely help me change position.
Brita Water Tank – I drink a lot of water, and anyone else who drinks a lot of water will know that not all water tastes the same. I’m very fortunate to live in Scotland where the water quality is really good and doesn’t actually need filtering. But I do really like cold water. I am able to use the cold water tap but it’s just not the same. I used to have a Britta jug in the door of the fridge, but that’s now too heavy for me to use. The tank takes up a lot of room in the fridge but I’m one person living on my own so I don’t really have it completely full of food. I won’t be able to fill it myself, but what’s in it should last a while until I can get someone to refill it for me.
Poop scoop – This really helps me not have to bend so far to pick up dog poo. Very self explanatory! I’m on the lookout for a bowl with a handle for my dogs water, if anyone sees one let me know. I’m struggling to bend and lift his water bowl to change the water.
Elasticated shoe laces – They turn any lace up shoe into a slip on shoe. They don’t require to be tied.
Vibram Wrap Shoes – Because of my foot drop a lot of regular shoes feel really heavy and cumbersome. I also feel a lot more stable in my bare feet. So I researched shoes that gave a barefoot feel and this is what I got. The great thing about these as I can put them on myself because they’re Velcro. These are not ideal for a wet weather and unfortunately aren’t compatible with a lot of orthotics to help support foot drop.
Oversized clothing – I never owned sweatpants before MND. Clearly I was missing out ! Trousers with elasticated waists and tops 2-3 sizes too big are not the most flattering or fashionable, but this allows me to dress myself. The extra space means extra material to grab and pull over my head etc.
ShePee/ SheWee – Believe it or not, not all disabled bathrooms are suitable for the wide variety of different needs people have. I need two handles – one on each side of the toilet to boost myself up. It also means I can’t use the bathroom at a friends house or on an aeroplane. This is where this handy gadget comes in! It means I can pee standing up! Which removes the anxiety of getting stuck.
Rise & Recline Chair – Most standard chairs and sofas are too low for me. Especially if they don’t have arms I can use to get back up. I also can’t put my feet up, I don’t have the strength in my legs to lift them high enough. I was reluctant to get a rise and recline chair because they just scream “nursing home” to me. But I managed to get one that doesn’t look too bad. I actually didn’t have to pay for it, it was funded by MND scotland. Don’t expect me to answer the door bell in time if I’m sat on it though !
A half step – This allows me to climb a few steps outside my front door to get in and out. I need someone with me to put it down and change it to each step but it works really well. Takes a lot of the effort out of getting up the steps. It helps going down steps too. Sometimes the sudden drop of one leg means my other leg is struggling to support me. The half step makes it less of a sudden movement which allows me to steady myself better.
Wireless charging pad – It can be quite difficult to take the end of the cable and connect it to my phone. With a wireless charging pad I can just lie my phone ontop of the pad and it starts charging. (Note your phone must be compatible for wireless charging)
Electric heated throw – MND sufferers really feel the cold so I got one of these to sit over me while I’m watching tv. I can’t work the buttons very well but this could be overcome with another smart plug strip.
UPDATE 21/06/20. I found some really nice lightweight plates, bowls and tumblers which are dishwasher and microwave safe.
Update 14/01/21
Easymove Sheets. The silk pjs are no longer enough help me turn in bed. To add full silk sheets would be dangerous for sliding out of the bed. These sheets have a square of silk in the middle and cotton around the edges to allow control when sitting on the edge.
Carers Height Adjustable Bed Probably one of the most expensive purchases. OT will only supply a single hospital bed. I wanted a bed that still looks like a normal bed but for everything carers require. It raises head and legs, it raises horizontally and there are cutouts for hoist at each side. I also got a leg raiser fitted to one side when I could no longer lift my legs into bed.
Signature Stamp. I got one of these made when my handwriting was still very good.
Jo’s Journey with MND 