Instructables members with disabilities? Solutions or needs?

Sorry so long but wanted to explain in detail. I am severely disabled and have not figured out how to get around it. But my problem is, if I could just sever my spine from the thoracic part , I would be more free than I am now, but docs wont do it and husband wont either and haven't figured out how myself and too chicken anyway..lol. So I am only able to sit for more than about 1/2 an hour in a day before I am in such severe nerve pain (sitting in boiling oil) that sleeping and laying flat the rest of the day or 3 is my ONLY way of recovering. So the nerve pain is my waist down to my feet and things like hemorrhoid pillows cause pain because anything I touch from my waist down causes more pain, laying flat hurts too, but it doesn't seem to cause more pain, it is the pain from what I have been doing. The only way I can escape the pain is floating in water so that nothing below my waist touches anything. So my thought is making a chair filled with water like a cheap water-bed but to sit in where even my legs wouldn't touch a wall, in my mind it would have to be there to hold the water, and soft wall doesn't matter (BTW) it does the same damage. But the plastic that would hold the water would have to be loose because if it was tight I would be sitting on plastic not floating in the water. I just cant think of a good way to do it and am not really capable of doing it very well, so I thought I would post to see if anyone would help me make one or come up with something better?. I have a chair that has a very stable wood frame but the problem is trying to make it myself and also the front piece of the frame would touch my legs the way I picture being able to do it and I cant touch the bottom. I would have to have the top to where I am floating not sitting on the plastic covering the top (so it would not be able to be stretched over the water) and I also wouldn't be able to hit the bottom which isn't too bad that I only weight right now 92 lbs(trying to gain but not working). So my thought is to make it feel like I am floating on the water and not touching anything and not fighting gravity. I had to find my own DX which took all my insurance, retirement savings, ability to work, and family. I am also loosing everything such as my home so I cant afford to pay much for it. I have been fighting for 6 years with doctors to get a DX and SSD for medicare to get any medical help. So I cant even get any medical help to try and fight this disease if it is even fightable? But 6 years of not sitting makes me want to give up more than anything. I still fight and did make a dress and entered it into a contest. It took me months to make. So obviously started before I found this site. And slept 2 days after I finished it.....It would be awesome for the idea to be mobile as a wheelchair but I can walk a limited amount and it would be nicer sitting it is the biggy! Would love to have all your smart brains helping me think of something? I miss sitting more than walking and would give up walking if I could sit and use a wheel chair,sound weird I am sure but I would have more freedom than I have now, nothing much you can do flat in bed all the time. I have for 6 years been having to lay flat on my back (not because of career choice) 80-100% of everyday, imagine how boring that is!!! I am a very hyper person who loves making things and can make all kinds of things but cant make them very fast or at all because of you HAVE to be able to sit!! I was DX with FM and CFS and all kind of stuff but low and behold I read alot and my DX is Lyme disease un-DX for 35 years or so.

To those with FM:
Anyone thrown in the FM box please go to Lymenet.org and read the info there. I recommend a couple of the papers to read first one is a long one but best: Advanced Topics in Lyme Disease (2000 Burrascano Treatment Guidelines) which includes a great symptoms list but it is very long and the other is "The Lyme Disease Network Medical / Scientific Literature Database" which is search-able, to find medical papers about specific subjects including a symptoms lists and shorter and maybe more understandable papers. The library also explains the politics of it all which is a fight with the CDC which is also included in that area so you can see the differences. It is a mess, a lot of reading, and will not be fixed quickly if at all, but there are things you can do to get better, if the docs havent dont too much damage to you before you find out. Number one thing is getting DX (diagnosed) by a LLMD (Lyme literate doctor) which you can find one close to you on that site also, VERY IMPORTANT. Most docs know nothing of Lyme even in the NE because they are plugged into the politics and lazy and dont want to deal with appts that take more than 5 minutes. All about money!!! I know I have it, most of my family that summered or lived at my aunts lake home have now be DX with it, the neighbors and those in graduating class of my cousin's and they only had one stop light!!! They all now live in different states and were DX by diff docs and labs, because of me bugging them to get tested. Anytime FM comes up I ask people to go to this site. Hope this help you folks in the FM bucket.


And now back to me, please help I need this, I am giving up every other day now and one day soon it will be over for me, unless I have something to do! 6 years is too long to be alone 24/7 and in this pain with no money or medical support and not able to sit. My hope is very low and I am at the point of giving up the hope I have left!! I try to keep hope with small projects but they are so painful to do I am just barely wanting to even try anymore!
Thanks for this site its amazing, I wish I found it when I could make all this cool stuff because this is what I am good at, but cant do anymore. I may be making things worse mentally for me coming here to look at all the cool ideas, not sure, I want to play!!!! But can just cry about being grounded all the time. You are welcome to email me with questions or help ideas or offers and go from there?
Thanks in advance,
Conny

I have Fibromayalgia so severe that I am unable to work and am on Social Security Disabilty.

The thing I really need is an easily programmable ReminderBot: somethiing that would make some sort of noise to say "Okay, you've been standing up washing dishes (or some other standing activitiy) for 20 minutes now. If you don't take a break, your feet & lower back are going to make you suffer for it later." or "Okay, that's two hours you've been working at (some seated activity). Take a break now or you'll wear yourself out."

The device would need to be pretty darned idiot-proof: I've set my kitchen timer but forgotten to hit its "Start" button more times than I can count. Same thing with the microwave. And the oven. And the dryer...

Individual devices for "you've opened and closed the front door but haven't locked it" and "you've left the faucet dripping" could save me risk and expense.

The timer function on my cell phone (which, being circa 2006, was made out of stone knives and bearskins) is embedded about four wildly non-intuitive menus deep; and if there's a calendar/scheduler function to it, I haven't found it yet.

(But one thing I really, really need is an "you've forgotten and left your cell phone somewhere and the battery's run down and it's shut itself off" alarm.)

I do have an iMac with iCal, which might have a sufficiently user-friendly reminder function to help with some of this - maybe I should see if I can hunt that up.
(One big problem with Fibro is that the analysis-&-problem solving part of my brain shuts down when I'm tired; and I have to try to prioritize my use of it. Managing finances and trying to prioritze and accomplish ADLs use up the vast majority of my "brainpower budget" on most days. (yeah, I blow some of that budget here on 'Ibles, but 'Ibles is also actually good for me in re the "use it or lose it" problem).)

I'm desperately searching for instructions on building a pediatric bath chair similar to this: http://www.rehabmart.com/imagesfromrd/8500_8600_8700_Tilt.jpg . I am not about to pay approx. $500 for something made out of PVC! Any ideas on how to build something similar?

Great idea. I have been trying to make some stuff for my brother who has a rare muscle decease like MS. I am trying to make a sit-to-stand device that will allow him to move from a standing position on his walker to a sitting position at a desk. Any ideas or hints would be appreciated. On another note, I just found a dealer that is selling a Sit-To-Stand Power Chair call Hero 1 for $4,300. The dealer's web site is www.medshopdirect.com. I have not checked this product or dealer out yet so I am not ready to recommend either yet.

Well this thread gave me a reason to finally sign up for Instructables, though I was planning to once I finished figuring out a few things.

I have a sunshade I have to repair so i will be posting a repair thread on that. My wheelchair needs one for two reasons. The sun is hot and burns me (sun allergy) and also the height makes me far from invisible so cars don't run me over on accident (though I can't do anything about on purpose...)

I am working on a combination of a grabber, a light switch flicker, and a door knob catcher (to pull the door closed) since I live in an apartment that was built in the 1930s during war time. Accessibility is growing because I am making changes happen.

I also have other projects, such as making your own chair bags or adding a money belt to your seatbelt that are in the works because I think it'd be better than paying $50 dollars for an ugly bag that doesn't fit my personal needs. I am also modifying the pendulator cupholder just a bit to make it fit where I need it.

Then there's the addition of speakers/mp3 player to my chair without any permanence, and because my hamstrings are too short for my legs I added a cushion to take care of some pain issues that my chair was causing me. My doctor and I designed this cushion (pretty basic in the end) and it really did fix my issue and has kept my feet from either freezing or frying on the metal plate since I eschew shoes.

Mind you, all of this is a work in progress. There's more stuff too including adding a sort of shelf between the sunshade and the headrest that can hold my service cat's stuff and maybe a wheelchair slanket mod for winter and or looking as unfashionable as I can.

I am also going to rework the waterproof cover I have for my joystick because it doesn't quite stay on right but it's already saved my joystick from a drowning when it rained. (I;'ve had this chair for two weeks and it's already showing some love...)

I think this is more along what you were looking for in the thread commentary? Also that wheelchair crib is fantastic. I don't know why you had to modify yours, why can't the industry make one? (Patent and manufacture).

Now I am off to murder a few of my handbags.... and maybe a cat carrier (though that would so widen the footprint of the chair it would work for travel!)

I invested, about five years ago, in a miniature lathe and mill (Sherline) so that I could move into metal machining as a home hobby. last year I was diagnosed with Atelectasis, COPD and Destructive Sleep Apnea. I now spend all of my waking and sleeping hours breathing supplemental oxygen while under going various therapies. The oxygen is either supplied from an oxygen concentrator or a bottle (which I wear with a sling) and is delivered to my lungs via a nose cannula. These devices put a crimp into my metal working hobby because my tools are located in my basement. Using bottled oxygen is impractical because I have to conserve it for work and trips outside of my home. The line from the concentrator does not reach and lengthening it involves snaking it through out the house. So I had to do something to continue my hobby. My wife forbids my relocation of the mill and lathe to the upstairs so I drilled a small hole in the living room floor next to a wall directly over my basement work bench. I feed the oxygen tube through the hole, attach my cannula to it and happily pursue turning perfectly good hunks of metals in to chips.

I never realized how much is actually out there already ( like the Fire alarm Jane mentions... ). Thanks for getting me to look closer at this.

My wife has sarcoidosis that has been latent for about 10 years or so, only cropping out on the skin of her legs now and then. The enlarged lymph node in her lung has not gotten worse in about 10 years or so. She has also been diagnosed with a case of fibromyalgia for a few years now. Because she is on Thyroid meds and anti-depressants, and a number of other things, pain relief is almost out of the question. She may find some relief in a new perscribed medicine, Lyrica. But only if she decides to actually use it and not get herself worked up over side effects (she drives herself to distraction this way).

On MY side of the fence, I am only stricken with an acute case of anxiety. It WAS disabling at one time, but I am on a very low dose of Lexapro and that takes enough of the edge off without making me drowsy, so I am able to function again. Other then the heart surgery I recently had, I am good (and bouncing back better then before the surgery through exercise and weight training).

I am not sure what aids would be useful, if any, for my wife. She has been told repeatedly that she needs to move around more to feel better. Living in an apartment (first floor) makes it harder....we can't install anything.

I don't really struggle with much - I'm legally blind without the help of glasses or contacts, and I have a blood disease. The second bit only bothers me if my platelets get low, but then it's "hello, Gush City!" I am, however, taking a class about disability sport and activities. I'm becoming really interested in it. And after hearing the prices people pay to continue doing things they love after they become disabled I really would like to do something about it. I'm honestly thinking about interning with some local disability organizations for my school credits.

My wife has Lupus and Fibromyalgia. On good days, she's strong and active. On bad days, she hardly leaves the bed. I'll point this topic out to her and to another family member who's totally disabled with Rheumatoid Arthritis. I'd be happy to see anything I could build/make for either of them to make their lives easier.

One thing to be aware of before reinventing the wheelchair is that there's an increasing number of accessibility features built into mainstream technologies--whether by design or good old dumb luck. I'm currently 1/2 of Access on Main Street, a blog that tracks and comments on these features. Please check us out!

My mother has problems reaching, thanks to post-polio syndrome + ageing joints. She uses a length of bamboo with a rubber thimble stapled to the end to be able to open the ventilation grills at the top of her windows. A specific tool to solve a specific problem.

What types of tools are you looking at changing, while I'm lucky to not have a disability, I do have kids and therefore I do build things like sleds for cutting plywood on a table saw (( Yes I watched some one cut off there fingers on a table saw cutting a sheet of plywood - hence the kids are not allowed to use it with out a sled - and even I use it from time to time )) And what sort of access issues are you having ?? are you talking about wheelchair access like building ramps because when you say access it's a very broad term (( I helped a senior couple that couldn't lock or unlock there front door because putting a key in the lock was very difficult, even with a larger key, yes if you talk to schlage they make larger key tabs, and I got them a RFID card reader and no matter how much your hands shake the RFID reader doesn't care and it unlocks the door, and the government, in Canada offers forgivable loans for items like this because it was classed as an access issue )) Or are you talking about access issues in general like accessing public buildings or access to public services ??

Noooooo, that's the wrong image!!!