Following on from my last post I started thinking about the disability aids for everyday living that I rely on, and through it may be useful to share the knowledge I now have with you. If we all do this with eachother then over time people will come to find what they need.
When I was still able to move around with relative stability, but was starting to feel a little off balance I started using our Nordic hiking pole. This was OK and provided me with some support to keep me upright, but did put strain on my hand, wrist and arm.
I then changed this for a walking stick. I found this a very difficult step to take (excuse the pun). I felt too young to be using one and that it would draw unwanted attention to me. Then I decided that life is too short to worry about what other people might think and went ahead with the purchase of a pretty one from online. There are many many different styles, colours and types available and I would suggest taking your time to think about how often you need to use the stick, where you are likely to be using it and how you feel about using one. I opted for one with a formed handle for my right hand. This was so I had my dominant hand free to hold my child’s hand, carry a bag or press the crossing lights. I didn’t get a folding stick because I was concerned about the stability of them and knew I would need mine all the time. I also knew I would need a wrist strap so I could use both hands to do things without worrying about dropping the stick on the floor. I was feeling very self conscious so opted for a brightly coloured one that I felt suited my personality. It was such a relief at first. The pain I had been experiencing from the use of the pole went, but then was replaced with a patch of hardened skin which became sore on the heel of my right hand. I was becoming less and less stable as my condition progressed so was relying on the stick more and more. My shoulder was becoming sore from the strain of using the stick on one side so I knew it wasn’t the best option for me anymore. I was also becoming exhausted very quickly now and needing to sit down to rest regularly. I had purchased some racquet tape to wrap the handle with to try and reduce the pain in my hand by then too and it kept peeling off and the ridges of it were being a nuisance and causing irritation to my hand.
I had a look around as I was determined to stay as active as I could and purchased a rollator which folds, has a seat with backrest and a large bag that is easily detached. I tried a few in the store and found the cheaper, metal frames made me think immediately of the elderly and I couldn’t bring myself to use one. Besides this the seats on them were solid and uncomfortable for my lower back and hips and they folded differently to a wheelchair so I couldn’t think how to do that myself without falling over. I found some of the rollator brakes were too hard to put on and off and some of them were difficult to lift so I couldn’t imagine how to get up kerbs with them. I wanted one with four wheels rather than two and two stoppers so it could continually move without me having to lift it as I knew that would wear me out quicker. The rollator I bought folded like a wheelchair and looked different to any I had seen before, which made me feel better about it. I could sit down whenever I needed to, take the bag off quickly and easily when needed, fold it up like a wheelchair myself, the handles and brakes were ergonomically designed with a gel like coating and it had kick steps for getting up a kerb.
I soon realised how limiting it was not being able to carry things around at home and my rollator was no use for this because I had opted for the one with a flexible and softer seat. I therefore searched online for a second hand or cheaper rollator with a tray, purely for use inside the home for carrying toys, drinks, snacks, magazines, medicines etc so I could furniture surf less and feel more stable too. I found that the brakes were not as reliable indoors as they skidded easily on the carpet so I couldn’t rely on it 100% but it was definately an improvement over nothing but furniture surfing. I found a very cheap rollator on an auction website with a front basket, fitted tray with a lip running all the way around and simple hand brakes. It meant I could keep my drink, a snack, medication and supports in one place and with me in the house so I didn’t have to ask anyone to help me or search for them either.
I was already finding getting around extremely hard going by now, using the rollator indoors and one outdoors and being exhausted the rest of the time. This is the front of my house:
There is a side gate which is swollen and rotten so very hard to open with two hands, let alone whilst using a walking aid and going up the steep incline to it. This does then lead to a narrow path around to the back door which has a high step into the kitchen area of the house. The whole path is on an incline and getting from the car, up the hill, around the house and then up the step into the kitchen was never going to happen. By the time the OT (occupational therapist) came out to assess me at home I had gone from being able to trundle around slowly with my rollator to needing a wheelchair. My husband was lifting me down the steps to get me out of the house, getting me to the car to sit on my wheelchair cushion in the passenger seat. I was very wobbly on my feet and when pressure was put on my feet or legs they were tremoring uncontrollably and my left (dominant) arm was doing the same. We had bought a basic wheelchair with self propelling wheels and non inflating wheels with textured tread for everyday use so I could get out and about with a lot of help.
I was also using this to drink from:
A bed rail to help me sit up in bed and get out of bed:
And these bed raisers to make it easier for me to stand up without launching myself forward off the bed:
They looked at me and wanted to see me manage the stairs down from my bedroom. They saw me bum shuffle downstairs and then collapse on the sofa in the lounge, exhausted. There was no way I was going back up straight away. Getting myself up the stairs at that point took everything out of me physically and emotionally and often I would then be stuck at the top of the stairs with too little energy to do anything but crawl to the bathroom/bedroom. Sometimes I couldn’t even manage that.
They suggested I move my bedroom downstairs. I was so reluctant because our bathroom and toilet are upstairs and we only have the one family room downstairs which is a thoroughfare to the kitchen and back garden from the front door. Whilst we were still debating it I had a few falls getting to the bathroom which made our minds up for us. The day we moved downstairs I was devastated. I lay on the floor whilst the bed was being moved and sobbed my heart out. There was something about seeing my bedroom being in the lounge downstairs that made it all really hit home. I still find it hard now, months later.
The commode and perching stool (for use when I have a wash) had arrived, I had found out about these:
And was on the lookout online for a reclining chair, desperate not to be sat in bed all the time. I kept being told we didn’t have the room for a reclining chair but I can be fairly headstrong when I need to be and went ahead and got one delivered when my husband was busy. It was quite low and hard to get up from, but so comfortable to be able to lie back and relax in.
We also had a second wheelchair by now for use in the house. It was a cheapy one from online but meant I could safely get to the kitchen (not that I could reach anything in there) and feel able to move around a little bit. When the council arranged for this to be delivered it also meant I could be pushed outside to the back garden (once the person pushing me manages to squeeze my wheelchair through the doorways where there isn't enough space for my fingers, and gets me over the threshold to the ramp!):
It wasn’t long before I realised that I couldn’t be out for long in the wheelchair before I was exhausted and needed to rest, and this was cutting any days out short for the family. I started to look at options such as wheelchair headrests, half expecting them not to exist, only to be surprised to find a tilt-in-space wheelchair with adjustable headrest available on an auction site. It was in excellent condition and absolutely perfect for my needs, plus it folds to go in our current car with a bit of effort from my husband. It takes up most of the boot and is heavy to lift, but it means we can all go out together on a good day and stay out longer than we could before. I have since also found a rise and recline chair on a local selling site which I have next to my bed too.
The everyday things I rely on are my long handled comb:
My grabber stick (see above photo)
My drinks bottle
My medicine organiser (the pharmacist could fill a foil tray for me monthly but this would only contain my prescription medications, not my antihistamines or additional painkillers and vitamins):
My Echo dot:
My commode and bags
Cups with handles and a straw:
A bean bag lap tray:
A weighted pen holder:
These products for easy body care:
A wide variety of body supports that secure easily with velcro and my furniture.
I also have this little beauty who keeps me calm and is so cute I simply couldn’t resist:
We also have a wooden transfer board, a pill popper that gets tablets out of the foil packaging several grab rails from when I was walking about but unsteady and a bottle/jar opener tool. There was even a section on This Morning today where they showcased several daily aids (yes, they used elderly people).
Most of my items have come from Ableworld, eBay, Facebook marketplace with some from Amazon. I do shop around online for the best deals on any items I need and compare postage, how urgently I need the item, cost of postage and reviews of the sellers. For this reason I have not included links for the sellers of the above items. They are all available at more than one outlet.
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