Today I thought I would share with you a daily living aids wish list. I had my assessment with the community occupational therapist (OT) on Monday & it was both positive & negative. While he was able to advise on & will be providing mobility equipment, such as a shower stool, perching stool for the kitchen & a trolly so I can move my dinner from the kitchen to the lounge safely, he wasn’t able to advise on anything non-mobility related. The reason I need these is because my EDS & PoTS are making doing daily tasks difficult.
I know I need certain things, particularly for the kitchen, but with so much choice available I’m left wondering what is most suitable for me? I’m happy to buy my own equipment (assuming I get PIP – that’s another story for another day!) but I want to know I’m getting the right equipment for me. When you consider that some equipment might not be suitable & could even be worse for me than what I’m managing with at the moment, it really would be nice to have some guidance rather than blindly buying things in the hope that they’ll help. The OT did suggest going to mobility shops & trying equipment out & asking in the store for advice. Call me sceptical, but I’m concerned that I’ll be given advice that’s more financially beneficial to the shop than the equipment would be to me. I also feel that some things we need help with we don’t even know there is a device that can help us until we’re told about it! So I thought to aid my thought process & to help any of you in the same position, I would put together a daily living aids wish list as a starting point for me to get the equipment I need.
I started this process by identifying the areas of my life that I have difficulty with. As the OT has covered mobility issues, this will be all the things he was unable to cover. This way I can concentrate on things that will help with these problems specifically. I’ve left out tasks that I already have aids for from this list. If you’ve like me to share the daily living aids I already own & use as well as why I need them, just let me know! So, I have problems with:
Picking & pouring up the kettle
Taking things out of & putting things into the higher cupboards
Loading & unloading the dishwasher & washing machine
Holding & moving saucepans
Opening tins
Holding & using cutlery comfortably
Getting clothes from the wardrobe
Doing up buttons
Turning keys
Holding books
Writing by hand
So first to look at daily living aids to help me in the kitchen.
Pouring the kettle is difficult, so I would benefit from a kettle tipper. There are a number of different options here, so I need to work out which would benefit me most & fit my kettle.
I’ve moved things I need into lower cupboards, but I may benefit from some kind of grabber for the dishwasher & washing machine.
I would benefit from cooking baskets for the saucepans so that I can move the food I’m cooking without having to move the whole saucepan.
I would benefit from an electric tin opener. There are devices to aid opening ring pulls, but the electric opener would work on those too. An electric jar opener would also be beneficial.
I would also benefit from a pan handle holder. A couple of nights ago, I knocked the handle of a pan with hot oil in & knocked it to the floor. My perching stool for the kitchen will help me not put my hands on hot pans, but I’m just as likely to knock things over with the stool & that’s extremely dangerous.
I need light weight cutlery with a grip. My hand therapist suggested foam handles. I was only able to compare foam with plastic, so I’d like to take a look at the different foam options. Ideally I’d like foam handles that you can unscrew the heads of the cutlery from to reduce the weight. I don’t know if something with an angled handle would be a help or a hinderance. I need ergonomic knifes for cutting food. I have no idea which type would be best for me.
I would also benefit from a trolly that is also a walking aid, something the OT was unable to advise on (even though it’s mobility related).
Around the house I would also benefit from daily living aids.
A grabber would help me with the washing machine & dishwasher but it would also help me taking clothes out of my wardrobe.
A button hook would help me, there are different types though so I don’t know which would be best for me.
I have had a key turner (pictured on the right) but it needs replacing as it’s snapped. I’m debating getting the one that goes round the keyring as this gives the option to use many keys rather than have to have lots of different key turners with only a few keys on it.
I have a stand for my books, but I find having to have it on a table can be awkward at times. A book holder would help me hold books without strain on my hands.
As I struggle to write by hand, a writing aid may help me. There are a few options & I’m not sure which would be best. I’m going to ask my hand therapist what she would recommend.
My family like to play games, but I find holding cards difficult. A card holder would be very helpful. I’m going to get one for my 7 year old niece too as she struggles because her hands are small.
My physio has offered to refer me to the hospital OT. I’m not sure if they will be able to advise on the non-mobility side of things, so I’m going to ask at my next appointment in the hope that they will be able to advise me further on daily living aids. If they can I’ll take this list along with me & see what they say! There are some other things I want to get that are more communication aids, like a medic alert bracelet, so there may be another post like this coming soon!
Do you use any daily living aids? Which ones do you use? If you know if any of the ones above would be helpful for me with my hypermobility issues or would hinder me, please let me know!
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Hi Tania, thank you for your post – I’m sure this is helpful for many who aren’t aware of assistive aides or don’t know where to start! Compiling a list & description of such devices is something I’ve been meaning to do myself for my website/blog! (I have yet to start but if you wish for me to contact you once mines completed – let me know ). I imagine there are sites with such lists already out there which is where I intend to start). I am a qualified Occupational Therapist ( OT ) myself actually, and recently diagnosed with Fibromyalgia Syndrome and ME / CFS – I have personally struggled with aspects of everyday tasks and at times was in need of assistive aides. I find it strange that a community therapist would only arrange mobility aides (plus I personally wouldn’t characterize a kitchen trolley as such as they should not be used as a mobility aide, but simply pushed ahead of you – not leant on for safety reasons ). However that said you are likely based in a different country to myself and as such there would likely be different procedures and constraints. :) I do hope you gain further support from the hospital based OT, however I do applaud your proactive approach to finding suitable aides! Might I suggest you speak with your hand therapist about the cutlery choices? Typically in my (somewhat limited) experience, those who find basic grip strength to be lacking /ability to grasp or sustain holding cutlery will benefit from foam or plastic enlarged cutlery grips. The angled types are typically used for those with limited wrist movement ie post stroke persons as they have difficulty bringing the food/cutlery to mouth successfully. This can also be affected by other conditions of course. All the best with your search! Steph (FierceFibroFighter)
You’re welcome! Thanks you for your lovely comment with such helpful information. I’d love to know when you have your list complete, that would be really helpful. I found it very odd that the community OT was only able to assist with mobility aspects, I’d have though if anything that they would concentrate on daily living. Then to be given something that they themselves say isn’t a mobility aid – it makes no sense to me. I’m definitely going to be looking into the walker trolley for the future, but the general trolly will help to start with. If I’m honest, from what I’ve heard services available vary from area to area in the UK. Certainly for wheelchair services & what people are eligible for, so I would think it’s the same across the board. I’ll definitely speak to the hand therapist about the cutlery. I’m wondering if the angled handle would reduce over extension of my wrist, but it may mean I end up hyperextending in other areas of my arm. It’s so hard to know what to do for the best. I’m going to speak to her about the writing aids too, hopefully she can advise me as to what would be best there too. Xx
I really hope so! I was rather confused that the community OT was unable to advise on anything other than mobility, but one of the aids they are providing, the kitchen trolly, isn’t a mobility aid. I might have to look into pre-sliced foods. I don’t know why I didn’t think of that before! Thanks. Xx
Such a good post, T. I’d suggest waiting until you go into rehab at Stanmore as they doing cooking with you and have so many adaptions and kitchen aids that you can use and find out what’s best for you. Otherwise go to a mobility store and get a feel for things, if you can’t wait until Stanmore, that is. The basic kettle tipper is fab, as is a rubberised mat to put your cup on so it won’t move, the rubberised sheets you can buy and they help opening jars too. I don’t do a lot in the kitchen, thankfully, as Ian loves to cook.
I’d also suggest starting with smaller pen grips as the bigger ones stretch out all the muscles in the hand and can be really painful.
I couldn’t be without my grabber, key thingy (so technical I know) or cutlery, they’re so helpful.
Great post.
Sarah x
Thanks Sarah! I’m feeling a little more positive that I’ll be able to work out what I need now that I’ve put things down on paper. I’m going to take this post to hand therapy & ask for advice in the hope that they can help. Fingers crossed the hospital OT will be able to advise on kitchen aids, but if not I’ve found out that the people who supply the things the community OT requested have a shop & you can request one of their OTs to come out & do an assessment with you so worst case scenario I’ll go down that route. Xx
I got one of the grabbers from Home Bargains for 99p it’s fabulous, if I drop something I can pick it up with my grabber :) but in Boots they are around £18 and mine was 99p so keep an eye out in shops like that too, Home Bargains have a range of aids, I’m not sure what they are like but my grabber is fabulous xxx
Zoe ♥ MammafulZo
Ooo… That’s great to know, thanks Zoe! I’d much rather buy inexpensive things to start off with, even if they only last a month it will give me the chance to find out if they help & if i feel they’re missing something so I can invest my money in the best thing for me when I replace them without potentially wasting quite a bit of money on something that’s not quite right initially! Xx
I’m so sorry to hear you’re having to wait for a rheumatology appointment before your OT referral can be put in place. I’m wondering whether the hand therapist meant for me to be referred to a hospital OT rather than community, so will be checking when I see her tomorrow. I’m getting even more frustrated with my PIP because I’m not at the point where I’m suffering because I’m having to go through tribunal proceedings when I need the money to but equipment – all because the assessor lied in her report! Good luck with getting the help you need. Xx
I had this too with the PIP assessor Tania, but my GP wrote a fantastic letter telling them what he had seen over the last year! I’ve just put in my re-application and unfortunately haven’t seen the same GP twice since moving house and haven’t even been able to get to see them when I’ve needed to – including trying every day for 2 weeks to get a phone appointment (they assess by phone before booking an appointment) and not succeeding so then giving up – I find I have to do everything for myself with no medical support at all. I haven’t managed to get anywhere with OT and had a referral from my Rheum in August of last year, then another one from my physio in Feb this year, and also from my Rheum in Feb this year – it seems absolutely hopeless. I’m planning to get a kettle tipper and liked the simplicity of the one on the right.
I’m so sorry you’ve had difficulties with PIP too. It’s not right. I’ve heard so many people, including friends, who have had to fight against lies & false or inaccurate reports. I’m very lucky that my GP is supporting my application & I’m glad yours did too. I really hope things go smoothly with your re-application. If it doesn’t, fight it as much as you can. I know that’s hard to do given how poorly we are, which makes these lies & false reports even more ridiculous & damaging. I’m so sorry you’ve had so little support. my sister lives in a different area than me. She was diagnosed with EDS in August of 2015 & they asked the GP to refer her to local physio. She’s still waiting. It’s not good enough. Xx
I didn’t even think about all of these products, there are so many things out there and different types of each. Like you said you would benefit from trying them but shops would probably push for a sale. Maybe go with a friend or family member?
My mum saw the OT and she gave her bars to help pull herself out of bed, a thing for around the toilet with handles at either side, a shower stool, and bath seat as well as a perching stool for the kitchen.
The bathroom items are extremely beneficial for her and she wouldn’t be able to bathe/shower without these x
I found out when the equipment my OT ordered came that the company who provide the equipment have OTs that will come to your house & can advise on aids with no obligation. I’m going to hold out for the hospital OT, but if they aren’t able to help me I’ll definitely book an appointment with the company OT. I’m so glad your Mum has some aids that are really helping her. I’ve been amazed at how much easier showering has been with my stool. Xx
Thank you for this post! I have OT coming to see me tomorrow! Now I have an idea of what to expect and also what not to expect! Thank you!
You’re welcome! I hope the appointment was a positive one for you. Xx
That’s so helpful, thank you Jordan! When the equipment my OT ordered arrived I got talking to the delivery guy & he gave me one of their brochures. In there it says that they have OTs that can come to your house & make an assessment of your needs without obligation. If the hospital OT can’t advise me then I’ll definitely be booking one of these. It’s a shame though, if I hadn’t chatted to the delivery guy & then read the brochure, I’d never have known this was available!
I really only need the kettle to boil water for cooking. I can’t fill the saucepan up & carry it from the sink to the hob to heat up there. I don’t drink hot drinks myself & rarely make them for other people.
That’s a good idea about the foam pipes to try on cutlery. It wouldn’t be a long term solution because I need the reduced weight too, but it would give me an idea of what would be the best thing to invest in.
I’ve been to a couple of mobility shops & not been able to find any variety at all. If they have the products I need there’s only one type & I’m not sure it would be the best option for me. I think I’ll see if Amazon offer a good returns policy as I’ve found a walker trolly on there, but the mobility shop either don’t have trolleys or only have the type the OT has provided, which I’m struggling with as I need the support when I can’t put weight on one or more of my joints.
You’ve need so helpful, thank you! Xx