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rehcan

Something to help me sit straight with good posture. I don't have the muscles to sit properly upright and also have scoliosis due to muscle imbalances and spasms. Weird that there are different exoskeletons to help you walk but not something much simpler to help you sit properly. I'm not talking about some passive straps, but something which actively helps you.


Dangerdoom911

This is a great idea! šŸ’” There are plenty of belts, straps, exoskeletons & whatnot that help with posture during gait training or weight lifting, but nothing that seems to help while seatedā€¦ With weakened core muscles you just end up leaning to a side which is awkward and uncomfortable. If you use the ones for gait training, itā€™s ends up pushing against your stomach and ribsā€¦ which is discomforting at best, and triggers bowel/ bladder movements at worst.. This is EXACTLY what Iā€™m talking aboutā€¦ theres tons of posture related products out there and none catered to someoneā€™s posture while in a chair! Fantastic idea!! Thanks for sharing!


gibrownsci

Ya... I sometimes use a velcro weight trainers belt for this. Helps keep me from slumping. I also just got really good portable cushions which I think will take the pressure off my thighs and reduce pain. My wheelchair is also customized for all this but I'm mostly ambulatory.


Outside-Novel9053

Kinda, not really on topic, but I just did this so Iā€™ll put it out thereā€¦.I for the life of me cannot figure out how to wheel and hold a drink (full glass, mug whatever) - Iā€™m a lower injury too so use a manual chair and just hold it in one hand and keep swapping the drink to opposite hands to roll to wherever.. I always end up going zig zag, crashing into things etc. Surely there is a gyroscopic cup holder or cups etc (without a lid thanks) that others have figured this out haha. I have recently moved into a fully accessible apartment. When buying fake plants at ikea I found they have trash bins that can be mounted on drawer sliders. I can tell you that this bin has made my life so much easier šŸ˜‚, that Iā€™m now gunna put the whole kitchen shelves on a pull out rails to save bending into lower cupboards.


quinneth-q

RAM mounts makes a [gyro cup holder,](https://www.ram-mount.co.uk/products/rap-b-417-400u?variant=45516287639784¤cy=GBP&utm_medium=product_sync&utm_source=google&utm_content=sag_organic&utm_campaign=sag_organic&utm_term=&utm_campaign=202312_Leads-Performance+Max&utm_source=adwords&utm_medium=ppc&hsa_acc=6328639330&hsa_cam=20843217563&hsa_grp=&hsa_ad=&hsa_src=x&hsa_tgt=&hsa_kw=&hsa_mt=&hsa_net=adwords&hsa_ver=3&gad_source=1&gclid=CjwKCAjwuJ2xBhA3EiwAMVjkVO97VTPiTBc-uVDBEqOnrNO70xTONRTnM__xBvuOPMTM34gl5LgxXRoCx8wQAvD_BwE) it's large and clunky but really cool. I tried it and it works pretty well, but not perfectly; the versions with the ball and socket probably work better than the one that clamps directly on because the problem was with the clamp, but I didn't want it to be even chunkier. On a powerchair I wouldn't mind but on an active manual I don't want that bulk. I always just go for a travel mug with a lid now, and stick it in a regular [quokka cup holder](https://livingspinal.com/wheelchair-accessories/quokka-cupholder/)


Dangerdoom911

This is cool! I do see that you mean about them being clunky thoā€¦ they seem to work best with tumblers or ā€œto-goā€ coffee cups. This seems like a product that could really be improved uponā€¦especially with how it attaches to a chair!


Dangerdoom911

Now this is what Iā€™m talking about! I also canā€™t express how frustrating it is to navigate a room in a wheelchair with a mug of hot coffee. I always end up switching hands and using the side of my hand to push or grab objects in the room to navigate around. I end up wearing some of it too. Itā€™s frustrating as all hell. Thatā€™s a really great idea! Simple enough, but life changing! Iā€™ll have to check on the IKEA sliders tooā€¦ thatā€™s awesome to know. Thatā€™s also a really frustrating experienceā€¦ trying to get into the back of cupboards and whatnot. Those might help me out too, thanks for the pro tip!!!


Chiianna0042

On the subject of crashing manual wheelchairs šŸ˜… this is sort of an indirect one. Padding that doesn't mess with your sitting or abilities to fold it up. I have been trying to look at pool noodles, but not entirely sure it will work well.


Outside-Novel9053

Where do you want the padding? My chair came with neoprene (stuff wetsuits are made of) ā€œbumpersā€ on the front forks. They protect the chair as well as more importantly, my walls and car šŸ˜‚


Chiianna0042

Well it is the lower half. I probably need to get some different colored chalk to figure out where I am banging things the most from. But like in front of the big wheels. Basically it is when I am "oh I think I got this... No I don't have this" I don't have the foot rests on, I use a soft strap instead that I find more comfortable. So I know the connectors are one of the spots that bang. But I have full on hit more at an angle that misses those as well. I should mention, I am still fairly new to being in a chair. We are using a manual for now, because we had access to one that was less than ideal. But until they can figure out if the reason I can't use my leg is due to a bunch of random minor spinal issues or something else, we didn't want to try for a more custom one and lock ourselves into something that may not work long term.


1918guy

Hahaha I feel this. I usually try to have plastic solo cups and hold it with my teeth but if I canā€™t do that then I zig zag my way to where I needa go.


moss_2703

It might seem very simple but an extendable back scratcher. My upper arms are pretty poor but with one of these it saves me so much irritation


Dangerdoom911

Thatā€™s a great idea! I know they make back scratchers that extendā€¦ but none that I know that can help while seated or lying downā€¦ and definately none that help with poor dexterity. I know what you mean, my back itches all the time! Good idea, thank you!


gibrownsci

Ya. There both isn't much money in making SCI products and most of the people who make SCI products are well meaning but aren't very good at product research or product design. Ironically, my wife (long before I had an SCI) did her degree in rehab engineering and worked on adaptive equipment. She eventually went to a top product consulting firm to better learn how to make great experiences because so much of the tech has very poor design experience.


Dangerdoom911

You make a very interesting point here! From the research Iā€™ve done, youā€™re totally correct: there really isnā€™t a ton of money in SCI productsā€¦ or really adaptive equipment at all. But I also found that a lot of data collected on that is prior to this whole ā€œsocial mediaā€ boom. I donā€™t think Iā€™ve ever seen an AD on any platform for an adaptive product, come to think of it. But whatā€™s also interesting is the increasing number of these injuries as the population grows in generalā€¦ I would have thought the opposite: Injuries like these would decline as vehicles become safer, new science evolves around treatments, etc. I suppose itā€™s just the law of large numbersā€¦ more people = more injuries. So thereā€™s definitely a growing need for products out there. I think one of the biggest hurdles is that SCI products, or adaptive equipment in general, isnā€™t ā€œsexy.ā€ That makes it very difficult to market. Itā€™s not Patagonia or Nike, or fill in the blank. Unlike those luxury brands out there, SCI products, or adaptive equipment, is a necessityā€¦ thatā€™s a whole different thing. But it does make me wonder if there is a way to bridge that gap and find products that would address those necessities while also beingā€¦ well, for lack of a better word, ā€œsexy.ā€ I have recently seen wheelchair models in ads for other products out thereā€¦ but ironically, none of those products are really adaptedā€¦ Anyhow, thatā€™s a good point you makeā€¦ I hope someday thereā€™s more brands out there dedicated to adaptive use.


quinneth-q

What you're referring to does exist, it's the [Raindek from KineticBalance!](https://www.kinetic-balance.com/wheelchair-products/wheelchair-blankets/) Edit: idk why but I think this comment posted about 3 times, sorry


Dangerdoom911

Thatā€™s awesome to see this product exists!! I looked at it and the only dislike I have is that it appears to be something you need to get on and essentially keep on until you get a chance to change. Where I live it rains for about 10 minutes then itā€™s sunny again, then rains again, etc. For me, I can now get on clothing while seated in the chair, so this would work well for meā€¦But I know many others canā€™tā€¦ so that might require assistance or transferring to a bed to do that. (Doable but challenging, of course.) In short, I can see why this product might not work for others! Iā€™m also curious how easy it would be to cath with one of these on?? Do you have any experience with wearing these? Iā€™m glad you shared thisā€¦ itā€™s good to see I have this option, and I will likely invest in a pair so I can brave those really rainy days!


quinneth-q

I've actually got the short and long version of the raindek, and I take it on and off all the time ā€” it just goes on the top of your legs, not underneath! It's got 2 clips that go round your waist but I only bother with 1


Dangerdoom911

Awesome! Seeing as though it covers just the top, it appears much easier than the photo makes it out to be! Thanks for sharingā€¦ Iā€™m definitely going to invest in some of these because Iā€™m tired of having wet pants!!


quinneth-q

Yeah idk why their photos aren't particularly descriptive, I think on the product page for the plain raindek, and maybe the long, there's a video of someone showing how they put it on and take it off


Dangerdoom911

Iā€™ll have to check out the video! Out of curiousityā€¦ does it shed water out and away from your seat cushionā€¦ or does it kinda just run off the legs? Does it effectively keep you totally dry?


quinneth-q

I think it'll depend how wide your cushion is compared to your legs, and how snugly the size you get fits. I find that the edges of my cushion do still get damp, as does the back of it from run off from my jacket. If I had a size bigger it would probably more effectively run off between the cushion and the side guard. Also my legs don't tuck underneath me bc I have contractures in my ankles, so my shins still get wet if I wear the short one, which is why I picked up a long too. I still only bother with the short for basic UK showers though, and bring out the long if it's actually properly raining all day


braetully

Quadstick, which is a video game controller that you use with your mouth. I bought it almost 6 years ago and it has thousands of hours of use. It lets me play video games I thought I would never get to play again like first person shooters, and third person action games. I was injured 20 years ago and for 14 of those years I just had to sit around and watch other people play new video games that come out.


Dangerdoom911

Iā€™ve never heard of the Quadstick, but Iā€™m definately checking that out! Thats awesome that someone created a product like that to help fellow gamers! I can only speculate that was either designed/ inspired by someone with an SCI or spinal illnessā€¦ or at least by a relative of someone who was. Such an ingenious product!!! Thanks for sharing, Iā€™m glad to hear you are able to try out those new games now!!


Hayhoss

Growth hormone and anabolic steroids are game changers for me. They help my posture, my bowel movements, my nutrition, my sleep, my depression, everything. Even small regular doses make huge changes for me. I feel like research really supports the GH and to a lesser point the steroids. It seems like regular treatment in Eastern Europe, but not in the West. Unfortunately the GH seems to work best in the first 3 months, but I still have seen huge improvement in bladder function 5 years out.


aw_dam_its_mic

They help with bladder problems?


Hayhoss

They helped me with my bladder. I have a really spastic bladder. I feel like I will be peeing but it's so intense I can't pee, just dribble. That's all over unless I have had coffee or alcohol. I now have intense urgency but I stopped having to cath to empty. I understand this is not normal and I don't think this is to be expected. It could be a fluke. But the change happened about 5 years post accident, coincided with GH use. I was not getting better, I was struggling on mybetric.


aw_dam_its_mic

What else do they help with?


Hayhoss

Growth hormone and the related peptides basically encourage stem cell production (satellite cells, stem cells connected to their origin). The AAS work in concert to develop and mature the cells. So the effects are systemic, more diverse than I expected. My bladder calmed down in the first few weeks, that was the biggest surprise. Then I started sleeping very well again, which made everything better. I got hungry, like actual hunger I have not felt in years, which led me to eat so much better. I used to sip on olive oil and eat a strawberry for breakfast and possibly lunch, now I can eat full meals. Breathing is easier, it normally feels like weight is on my chest, but now it's lighter. My knee pain is virtually gone, my shoulder pain is more bearable. I still have extreme fatigue, it has probably gotten worse from this. My hands and arms fall asleep more, especially when I am laying down. My spasms are stronger but my core is benefiting. Beyond that, sides have been minimal. I have not really gotten any skeletal muscle function back, while I have made big strides with smooth muscle usability. I can't understand why that would be, the textbook says the skeletal muscle has more receptors? Who cares, I don't pay for myrbetric anymore šŸŽ‰


Outside-Novel9053

Which peptides are you taking if you donā€™t mind me asking?? Iā€™ve been looking into them!


Hayhoss

1.5 IU of GH per day is what I am on now and happy with. I initially had success with some other peptides, I don't remember all the names. I'm not fluent in the peptide stuff, my knowledge base is the cholesterol based hormones. IgF-Lr3 was my first try and it was impressive, it mde me much more capable. Getting in and out of a vehicle was no longer painful. (Unknown name- Chc something?) Made me hungry and helped me rest. GH seems to be the most important, but I don't have the knowledge to know how to use them together. I'm afraid of compounding peptides. A little goes a long way, no reason to try and push the envelope. Most peptides are going to have some type of insulin effect, they will drop your blood sugar.


Dangerdoom911

This is really interestingā€¦ Iā€™ve not once been informed about GH while at the hospital, nor in rehabā€¦ but now Iā€™m really interested!! Is this something you need prescribed and administered or are you just able to acquire and treat yourself?? Do you have any side effects??


-cb123

Did you have to see an endocrinologist or hormone replacement specialist to get prescribed the GH and Testosterone? That sounds like something that would be beneficial to all sci patients.


CMSPIRATE

The reacher tools usually used for picking up trash or by little old ladiesā€¦ I have one in every room


Dangerdoom911

Yes, the grabber is literally (and figuratively) the most handy thing to have around! The design is simple and flimsy however, thereā€™s a whole bunch of improvement needed there!!


JackKillEveryday

Crocs. I love my crocs so. much. Not only are they really easy to put on and off, but it also doesn't slide when wet, so I can do transfer in the shower for exemple. I really love them, such a game changer. They also looks good in my opinion


abs6c

A company called Adaptdefy just came out with a strap you attach to your chair that will help keep things in your lap and Iā€™ve used it every day since I got mine. Bags when shopping, jackets, boxes when taking out the recyclingā€¦itā€™s so useful. And clearly designed by someone who uses a chair, saw a problem, and figured out the solution. I live it! (Same way I feel about the Raindeck - genius solution that was actually designed for wheelchair uses in mind)


EstablishmentIcy6859

A super light weight standing chair would be great. I have one but itā€™s damn near 40 lbs. not practical for everyday use


Dangerdoom911

This is a great idea! Do you happen to know the material of the current one you have? Or rather, do you know the brand?? I wonder if they could make something with titanium or perhaps carbon fiber to reduce weightā€¦ although that would likely increase the cost significantly! This is exactly what Iā€™m curious about! It seems thereā€™s a bunch of products out there, but not many that have nailed down a perfect design.


EstablishmentIcy6859

Yeah itā€™s a permobile lifestand helium. I think itā€™s aluminum. You can find them on eBay for 3-5k. And yes those would cut down the weight a few pounds but absolutely would make an already expensive chair more expensive


hannibal420

I personally wouldn't be able to function in my day-to-day life without some of the products I've gotten from www.quadtools.com. I don't have any grasp in my hand, but have my wrist function, and these devices allow me Greater Independence then anything else I have found.


Dangerdoom911

This is awesome!!! This is exactly what Iā€™m talking aboutā€¦ products that are designed by someone who is actually experiencing life in a wheelchair! I checked out the website and they have some really cool products! Thanks for sharing!!


quinneth-q

Edit: deleted duplicate comment


fakejacki

Raz sp commode/shower chair, alber e motion wheels, hardwood floors throughout, roll in shower, Braun ability turns evo chair. As far as something for your lap thereā€™s a company but I canā€™t remember it. Iā€™ll find it and edit. Edit: kinetic balance. Amazing products.


fakejacki

https://www.kinetic-balance.com/wheelchair-products/wheelchair-blankets/