For people with MCS/ES, assistive devices can allow us to remain functional, independent, and able when we can’t control everything in our environments.
Slide with a few options from New MCS/ES Accommodation Resource
In addition to fragrance, chemical, and wireless free policies, these and other devices can help reduce or eliminate exposures to the pollutants that can otherwise completely disable people with MCS/ES. They can make the difference for people to remain employed when provided early enough, effectively minimizing the effects of MCS/ES.
When people become too disabled to continue working (usually due to a lack of accommodations) these assistive devices and technologies may be required to remain functional and independent at home, and should be just as accessible and similarly funded by either insurance or disability related services that fund assistive devices and technologies for other people with different disabilities and serious medical conditions.
Some are already tax deductible. More work needs to be done to make these available to everyone who needs them, the way wheelchairs are accessible to those who need them.
Do you require the use of any assistive devices or technologies? Are they covered?
I do, and they aren’t being covered by ODSP or anyone else.
Hey, how are you, Linda?
Oh, tell me about these expenses! I run two filters, one dehumidifier and either a heater or air-conditioner at one time. I do, however, get a cooling discount on my summer electricity bill because I run a medical device. I use two types of masks. And have an air filter in my car (which doesn’t help anymore). I have to throw a lot of things out, and spend a small fortune on foil and other items for sealing areas that outages chemicals. I think living the way we do is very taxing in so many ways. I seriously wish this could be passed on to those who pollute the air.
Foil can be so useful :/
And air purifiers so necessary…
I can relate to having to throw things out or give them away because they are too toxic and can’t be returned.
And, since you asked…
My old air purifiers need new filters, and they are no longer covered…
I need new masks and filters for them, just so I can sometimes take my green bin stuff out or look at my mail… There’s a woman in the US who makes all cotton or other natural fiber ones – no one in Canada makes them. I don’t tolerate synthetics.
I need a low-no VOC, no plastic blender so I can eat without teeth, as I am having to have almost all of them extracted (in the comfort of my own home)…
I haven’t been able to locate such a fume free puree prep device… and without new air filters, getting one that spews ANY fumes into the air is not an option…
Food prep is so time consuming now, there’s no grabbing an apple or a sandwich and chowing down… Loads of prep and pureeing and then dishes to clean up…
I am having to buy my own oxygen for the extractions and recovery from them… The old tygon tubing I was gifted many years ago needs to be replaced, but apparently can’t be found in Canada and has to be ordered from the US (add 20% exchange rate, shipping, duty,etc and things get unaffordable very quickly)
I need a bed and bedding (organic)
A SS washer and dryer (run and off-gassed)…
And a whole load of other things that the regular versions would completely destroy me, but the cost difference is not covered…
All my old things (appliances, electronics, etc) have died or are close to needing to be replaced.
But there are no safe substitutes or funding to find them or prep them to be safe enough to not disable me and to help keep me alive.
I sometimes wonder how or why I am still alive!
It’s such a strange way to have to live in a supposedly civilized society.
I’m very grateful to have a subsidized, accessible home that was built for people with MCS/ES (despite it’s budget related shortcomings and location) and that there are trees out my window, and squirrels who come to visit me because I put food out for them. If I had to see houses and traffic when I look outside, I don’t think I could take it.
I am completely housebound here. The trees at least are far more peaceful to see than polluters, although I often smell and become disabled from the toxic laundry and other pollutants here too.
Clean air and safe, assistive devices and technology should not be so hard to find or access!
What is a reading box? Great post.
There are a couple of images of reading boxes here: http://www.aessra.org/photos.php
Thanks. I never heard of that. It’s a great idea. Some print makes me really sick and others it doesn’t seem to. I of course say seems to because sometimes I react two days later to things and I’m not sure what I reacted to.
I think if I had a box with holes to turn the pages, I could read some books, as merely covering them with glass or something when reading, but lifting it to turn pages, can spew enough ink to make it impossible for me to continue reading.
The delayed reactions can be so frustrating. I get them all the time. AND my sense of smell is impaired now, so I can’t detect some things I should stop breathing in. I really need new filters for my air purifiers…
Maybe they can make a box with cotton gloves that you can slide your hands into inside the box to turn the pages — kinda like when they have to deal with things that quarantined.
I’d need a way to detox the cotton gloves first
Would organic work?
Even those would need to be detoxed from contaminants first. My laundry room is not ventilated, has no window or laundry sink, and no washer or dryer either, so I have to do this in the kitchen, where the residues would affect me in my living space (no proper ventilation in the kitchen either). There was an HRV when I moved here, but at about 20 years old, it broke down before a year was up, and the replacement was plastic instead of metal, and they had to build more ducts (toxic too) as the machine fit the wrong way, and ultimately it was so toxic that I had to have it removed to survive. I’ve asked several times if they ran it to try to burn off the fumes, and got no answer.
But I digress… somewhat…
HRVs can also be assistive devices when they work, when they filter outdoor air instead of pulling in laundry exhaust and woodsmoke, and when the units
themselves don’t add VOCs to the air.
As can washers and dryers when they don’t emit any pollutants…
I’m forced to live in the MCS wasteland I lack funds I lack proper medical treatment. My doctor forced into retirement the local doctors are taking awaiu my oxygen because my finger showes Imvery fine. I’m denighed power scooter because doctors refuse to document my disabilities for fear of being sued!. They purposely spray lysol when in office use alcohol based hand sanitizer to test my reaction than try to force me to use abutral when they have been told of debilitating reaction Since I do not sleep regularly the C-pat doses record normal use so accused of not using it. My reactions affecting instant heart reaction pushing up blood pressure doctor made because their trick to give generic lasinapral backfired so asked to leave their business never return. refused hepa air filter ! refused by government paid charities because they cannot accommodate my special needs Section 8 application disappear after being accepted accepted! If MCS EI is accepted they would have to isolate my living space The doctors would prefer us to just die get out of their way dismissing us because we constantly exsposed their chemically environmentally contaminated medical practices In florida its mold than scent jars to hide smells perfumes worn by all office workers who believe the hipe washing cloths in scented detergents makes you more attractive prittier, manly, desirable killers! than using alcohol sanitizers because to lazy to wash hands with unscented soap or bats done wash! These are doctors who’s patients have any type of breathing disorder refusing to accommodate forcing reactions to justify giving that need medicines to treat reactions to prescriptions Purposely causing reactions while patients are in their professional care. we are abused dismissed
I’m so sorry you are being abused and assaulted like this Katherine!
Sadly this is far too common.
I keep hoping and praying that the truth comes out and that we receive the respect and care we deserve <3