Category: Resources

Home Accessibility: Wheelchair User/ Physical Disability

Hands down the WORST thing about being a wheelchair user is inaccessibility. Not only is it a struggle to navigate public places but also my home. I currently live with my wonderful mother in a two story standalone home with a sunken room leading to an attached garage on top of a rather steep hill. None of the entry doors to my home had level access, although when we brought the house and renovated, we did widen some doorways incase I needed to use my wheelchair- good thinking eh? When I was discharged from the hospital in November there were 0 modifications. We had to put a hospital bed in our living room as I was not able to get up and down the steps and we put tension rods and curtains across the doorways as they had no doors. But all we had on the first floor was a powder room bathroom which was too small for my wheelchair. Additionally, to get out of the house I would have to roll to the den, which is sunken, transfer to the floor and bump my wheelchair down then crawl to the garge door, bump my chair down another three steps then scoot down those and into my chair.

Goal One: A Ramp

Picture of metal wheelchair ramp in garage leading to wooden platform
Ramp with wooden extension to lower grade ft. my awesome koala PJS

We started by trying to solve the ingress/egress issue by building a ramp. We had a few options but ultimately decided to put it in the garage because it 1) had the least number of steps 2) had the lowest rise and 3) was weather protected. I am blessed to have some handy people in my family but if you don’t, there is often a charitable organization in the area that builds them using volunteers. I would recommend calling a building supply store near you and ask if they know of anyone if online searches are not fruitful. What we ended up doing was building a 4 ft x 4 ft platform at the interior door level, then buying a pre-fab 10 ft metal ramp with grab rails on craigslist. To decrease the slope some more, we also built a small extra wedge to extend the ramp another 2 ft. My father also got stair stringers and built stairs off the other side of the platform for the bipedal members of my family. The metal ramp has worked great, it is easy to clean and durable and the handles allow me to pull myself up smoothly since it is steeper than ADA and I have a manual wheelchair. The one downside is it is rather noisy but that seems inevitable. We also added some industrial carpet squares to the platform and the wooden wedge to help dry my wheels, protect the wood, look snazzy and make it quieter.

Goal Two: Upstairs!

Picture of carl fredrickson from the movie UP riding a stairlift

My Everest. For several weeks, anytime I needed to bathe, I would have to bum shuffle my way up the stairs, scoot my way into my moms bathroom, get all nice and clean then bum shuffle in my fresh new clothes back down the hallway and downstairs. As a night showerer, this was often the straw that broke my back energy and frustration wise. Between that and getting sick of my frivingroom status, we started looking at options to get me upstairs. Being a rock climber and maker I was thinking I could rig up this ridiculous system but sadly there were some design flaws. But seriously, there was really only two options: elevator or stair lift. Elevators are EXTRAORDINARILY expensive and especially since we weren’t planning on me living here til the end of time, a stair lift was really the only feasible option. Luckily, we have an amazing company locally that does everything from adapted cars to stairlifts to ramps so we were able to go try one out in their showroom. I channeled my best Carl Fredrickson.

We found out that stairlifts are typically $3-5,000 and are NOT covered by insurance. Boo. Thankfully I am privileged enough to be able to make it happen and so we got the stairlift installed the next week. We already had extra wide stairs which was beneficial for those pesky bipedal inhabitants so that wasn’t an issue for us. The track sits on top of the stairs (drilled in) and the chair runs up and down it and is controlled by either a remote or a little switch on the armrest. The chair also swivels when at the top and bottom to allow for easier transfers. Additionally, it folds up flatter so it doesn’t get in the way when not in use. It has a seatbelt that I totally use every time cause safety first? The model I have also has these bumpers on the footplate and the base that will stop the chair if it makes contact (ie toy left on the stairs in the way etc). It isn’t super fast (52 seconds to go 14 steps) but it’s fairly quiet and reliable. It plugs into the wall but has a battery that can make (at least) 2 trips if the power goes out. It may also be theorhetically of course very nice for carying up laundry or suitcases, I wouldn’t know anything about that though. This little bugger allows me to sleep in my bed, bathe myself, access my stuff, and navigate my entire house independently. It ain’t pretty but its absolutely worth it!

Goal Three: Ditch the Hospital Bed

Adjustable bed frame with remote

Due to the nature of my disabilities and the limitations of my house at the time of my discharge, we had to rent a hospital bed for a couple months so I had a safe place to sleep while we made adaptations. While that did its job, I missed my bed and my door and all my decorations but even with the stairlift, my old bed wouldn’t be safe for me. I needed to be able to adjust my bed and feet to various positions at various times and I needed to make sure I didn’t fall out of bed. One of my wonderful friends suggested getting an adjustable bed frame which meant I could keep the mattress I already had (many mattresses are compatible with adjustable beds but not all- check before you buy!). So I got to researching and found that most queen size adjustable frames range from $200-$2000. After weighing my options and reading reviews, I decided on a frame by Blissful Nights as it was on sale and met my requirements. I could not be more pleased! This bed has changed my life!

Bed rail

This bed had lots of extra features I don’t use but the ability to adjust the head and feet so easily and whenever I needed it has really been a game changer. Gone are the days of 56 pillows being shoved in different orders and pillow wedges that are never comfortable! If I have to spend the day in bed, I can sit up and be support and change angles every few hours to shake things up. I have finally found a way to sleep inclined without messing up my hips and spine! As for the not falling out of bed deal, I solved this with a 3 part solution. 1) I keep my bed against the wall so that eliminated a whole side I don’t have to worry about. 2) I have this wonderful creation called a Yogibo Caterpillar Roll which is like a long beanbag snake thing/pregnancy pillow that can be used as support, a snuggle buddy, or in my case to keep me from punching the wall or rolling on the bed — bonus it is super cute! 3) I have a small rail/organizer that helps me transfer, prevents me from rolling off the bed and stores all my stuff.

Goal Four: Upstairs Mobility

Image of a red basic wheelchair
Wheelchair I use upstairs

Now that I have access to both floors and use them on the regular, a new problem came to — getting around upstairs when my wheelchair was downstairs. I had been scooting around for a while and while I am fairly mobile, I’m also fairly accident prone and was doing more damage to my legs than I thought. I don’t have a large house so there really wasn’t much ground to cover upstairs so we tried to find a cheep solution: office chair and a bunch of grab bars (vetoed), scooter like in kids gym class (vetoed), lawn chair with some wheels (vetoed), and second hand wheelchair (vetoed due to mast cells). What we finally ended up doing was getting a basic hospital type wheelchair that I only use upstairs until I get my next chair through insurance then my current chair will be my upstairs chair. I decided to go with this chair as it was light enough for me to push and I was able to strip off the footrests to decrease my turning radius. I also removed the armrests and part of the backrest. It is small enought to get me around and wasn’t too expensive. So far it has held up decently.

Everything Else

These are the major changes we have made to make this house accessible but are just a few of the many modifications and adaptations I use every day. Stay tuned for some of the hacks, devices and strategies I use to make my day easier!

They See Me Rollin: My Wheelchair Accessible Minivan

This post will be about my wheelchair accessible minivan, what adaptive equipment I use, why I chose them, and how they work. For more information on adapted driving in general read this post. To learn about our process leading up to the decision to get a wheelchair accessible vehicle read this post.

Wheelchair Accessible Vehicles (WAVs) come in many shapes, sizes, types and can have a range of assistive and adaptive equipment inside of them. Many people assume that they have to get a full sized or minivan in order to have a WAV, but thanks to the improvements in design and technology WAVs can now also be certain SUVs, pickup trucks, and even sedans! That being said, looks aren’t everything and certain vehicles will fit better for certain people and their lifestyle. For example, I was very exciting seeing all the SUV and sedan conversions but between the lack of passenger seating left in the sedan conversions and the smaller interior space of the SUVs, a minivan was best suited to my needs and I have very few regrets!

What I Have

I have a 2018 Toyota Sienna LE with a Side-Entry Power Fold Out Ramp (or TSLESEPFOR for short 😉 ). This means that the majority of my car is the same as a normal Toyota Sienna (engine, interior controls, body, last row of seats, and style) EXCEPT that the entire bottom of my car was ripped out and what they put back in is a lowered floor, the ramp, and a special rear suspension system.

Cool video about the modifications a car undergoes to become a WAV

There are several different companies that convert vehicles, the main two are Braunability and Vantage Mobility International (VMI), and a few different types of conversions. I am not going to go super in depth about each one, but more information can be found on the dealer’s websites as well as from an adapted vehicle dealer. The first main distinction is where the ramp comes out: side-entry (comes from the passenger side door) or rear (comes from the trunk). The second distinction is how the ramp comes out: manual or power and the third main distinction is the ramp storage: in-floor (flat ramp stowed outside of the car under the door and slides out) or fold-out (folds in half and sits inside the passenger door upright).

Things to Keep In Mind

  • Rear entry and manual ramp conversions will always be the cheapest
  • Different brands and types of ramps will have different: ramp angles, ramp widths, doorway clearance height, interior turning space, ramp weight limits, maintenance requirements etc. This can be overwhelming but speaking to dealers directly as well as your driving rehabilitation expert can help find the best solution for you
  • Different conversions will have different passenger abilities: passenger capabilities range from 1-5 (more if full size van) in seats, some conversions can accommodate multiple wheelchair users, not all will support the wheelchair user driving or being up front
  • Different ramp types may be more suitable for different environments: fold out ramps are easier to deploy onto curbs and uneven terrain but may track in dirt and water if you live in a rainy/snowy area, in floor ramps have the option to enter/exit passenger door without the ramp deploying/ getting in the way- may be a win if you have kids
  • Safety features: fold out ramps can be manually deployed from the inside in case of emergency and have higher side edges to prevent slipping off ramp, manual ramps often need a second person to deploy
  • Maintainability: power ramps require more regular maintenance than manual ramps, fold out ramps can often be less expensive to maintain

Why I Chose My Car Setup

After visiting several dealers, wheeling up a few ramps, looking at interiors, reading online, and process of elimination we were lucky enough to have this car mentioned to us and the pieces fell together. For me, I needed a side-entry vehicle because rear entry vehicles the wheelchair user sits behind the second row seats which would prove challenging to then get into the driver’s seat. I chose the power fold out because I liked that it could work as a manual ramp whenever needed, it would be easier to deploy onto curbs (key if parallel parking or in a city), it was cheaper than in floor, and had higher edges on the ramp to keep me from rolling off the side. Once we had narrowed it down to that, by happenstance this car popped up on our dealer’s radar. It had low mileage, was a Toyota Sienna, and already had a transfer seat installed in the driver’s seat!

Because I didn’t want to drive from my wheelchair, the transfer seat slides back into the middle of my van and turns allowing me to wheel up my ramp, lock my chair and transfer right into the drivers seat that came with the car. I then use switches that move me and the seat up to the driving position. It also works well to confuse everyone you park next to ;).

Picture of tan driver's seat in car with adapted hand controls and power base
Transfer seat, hand controls and steering knob

For hand controls, I use the Veigal Compact II Push/Pull hand controls- I push to brake and pull to accelerate. These are right hand mounted, which is not typical. These controls are made by a German company and are more often installed in non adapted vehicles as they can sit right next to the console and be out of the way. Typically, hand controls are column mounted (ie go through the steering column) and are operated with the left hand. Some disadvantages of this are that you are more restricted in your seat positioning, your drive hand is far away from the gear shift, they may have to make permanent modifications to your car to install (remove leg air bags etc), and the manual ones cannot be disabled for able bodied drivers.

Black Veigal Compact II Push Pull Hand Controls installed inside a car
Veigal Compact II Push Pull Hand Controls

Initially, the main reason I liked the Veigal Controls is they are on the right side and low down. I have less strength on my left side but good range of motion and the opposite on my right. Other benefits I have found are: they can be easily disabled for able bodied people to drive, they are inconspicuous, they don’t permanently modify the vehicle (except the holes in the flooring), they allow for the user to sit in a larger variety of places, they have a parking brake for changing gears or sitting at long lights, they are not fatiguing as you can rest your arm on the armrest, and they are very easy to use! Can you tell I like them? The last piece of adapted equipment I have is a SureGrip Spinner Knob which I have mounted on the lower left of my wheel and helps me turn the wheel with one hand. I like this one because it does not slide and the knob can be removed to be out of the way for an able bodied driver.

I plan to make a video demonstrating the features of my car, how I get in and how I drive with my hand controls and probably some better pictures. Thanks for reading!

Adapted Driving: Figuring Out How to Drive as a Wheelchair User

The Transit Problem:

Since starting my second stint as a full time wheelchair user in November, a lot has changed in my abilities, lifestyle, and needs than when I previously used a wheelchair in college. I now live in an area that has very little public transit, non-localized services, and pretty hot weather. Gone are the days of wheeling out of my accessible dorm onto an accessible bus to an accessible store or to class. Now, to even get to the street in front of my house I need a car or someone to help me get down safely as we live on a hill (yay -_-). I live in a residential area on top a rather small “mountain” (hill) where the only conceivable things I could roll to with my Smartdrive are a gas station, a pool, and some schools. Additionally, I have lost most of the motor control of my legs and some of my core making driving with my feet impossible. This also means I could no long load my almost 40 lb wheelchair into my car alone anymore. So what next?

Can I Drive?

At first we knew the answer was no. My body was going haywire, I was dealing with new and unexpected issues, I had no idea what my body could and couldn’t do and it seemed like anything I did resulted in increased symptoms. But as time went on and treatment changed I started to have a better feel for my body I started thinking about driving again. I talked to my family, my doctors, my physical therapists and the suggestion of completing a driving rehabilitation assessment was proposed to determine if it was safe. From that, it was determined that I could safely drive using hand controls, a spinner knob, and a car with an automatic transmission. I recommend anyone considering driving with a disability get an evaluation from a non-biased professional.

The Process:

For many months, I just didn’t drive and my parents broke down my chair and lugged it into whatever car we drove, rinse and repeat. This was partly because I was unsure of my condition and if it would be safe for me to drive and partly because I couldn’t drive my beloved Prius or load my chair into her independently. As we started to gain more information about my condition and stabilize me we began looking at options — and boy were there many! At first, we looked at ways to adapt my Prius to be able to load my chair independently (we knew we could add the hand controls into almost any automatic transmission car so this was the main challenge). My family of engineers rather quickly determined this was not going to work.

We then shifted gears to selling my car and getting a used car that could be adapted with a lift to help me get my chair into a car. From that we found that minivans, pickup trucks, and Mazda 5s were commonly the vehicle for manual wheelchair users who don’t load their chairs the typical way (breaking it down and lifting it across your body into a seat). People were incredibly creative, building their own lift systems like the one below.

Person showing their homemade conversion to a Mazda 5

We then found out that the Mazda 5 (sliding door is key) had a specific lift that is designed to pick up your chair with a robotic arm and lift it into the space where a rear passenger’s seat would be. For me, this seemed like a great option — I didn’t have to drive a minivan or a truck! Though some of the truck adaptations are crazy cool looking like this and this I just really didn’t want a truck. So we set out looking for a Mazda 5 and reading up on lifts. Well, they don’t make Mazda 5s anymore and stopped in 2015 and they are very hard to find with decent mileage. So then we looked at minivans. I thought, that since I could stand with support and was decently strong, that if I got a minivan and removed the bucket seat behind the driver’s seat I could just fling my wheelchair up in there and yaaay, I would be done. I even found a few wise souls on the internet proving it could be done. So, we went to Carmax and tried it. I did not have the balance or strength and my chair was just too darn heavy.

Denial

After I had eliminated all the reasonably priced and homemade options I resigned myself to being driven around forever and having whatever poor family member or Uber driver transporting me have to breakdown and lift my chair. And I am incredibly blessed to have the resources and the privilege for that to even be an option. After a couple weeks of mulling it over and tossing around random ideas like “what if I brought a lighter chair and minivan and I could maybe lift it in and it would solve all my problems”. Except not. You can only get a new wheelchair every 4-5 years through insurance and if I were to try and get a new chair that would be light enough for me to lift it would be around $6,000. Plus a minivan. Yeah no.

Black toyota sienna with ramp extending from passenger sliding door

Out of curiosity my mom and I decided to visit a mobility vehicle dealer to see what the lifts looked like, how much they cost, what cars they could go in, etc. We talked with a dealer about our challenges and frustrations and his answer was, “if you want the safest, quickest, and most efficient way in and out of a vehicle, a wheelchair accessible van with a ramp is the way to go”. Well surprise, surprise I thought. Of course they would recommend that, its the most expensive option — its basic marketing! Being the frugal family we are our gut was no, no we don’t need something like that.

The Direction Change

As we thought more about my needs and future we started to shift our mindset towards getting a wheelchair accessible vehicle. We considered the weather, ability to transport myself and others, ease of getting in and out, speed of getting in and out, potential for needing a power wheelchair, potential of progression of disease, reliability, cost, versatility, and resale value. For someone like me with fluctuating conditions, unsure prognosis, aging parents, and a very hot rainy location having a vehicle that could get me in and out quickly and safely was a game changer. While there are some wheelchair accessible SUVs, they’re not great for bigger wheelchairs or power chairs yet — though rumor has it the next 5 years will bring some great new conversions.

If I got a power chair, I could easily drive it into my van and could drive from it or be a passenger without needing expensive modifications or a new car. If my parents became unable to lift my wheelchair into a trunk, they could still drive me around. When its raining, no one has to be exposed to the weather to breakdown, load, and unload my chair. If I want to drive my family and my 88 year old grandpa we can fit my chair, his walker and 5 people comfortably. While I wasn’t super stoked about it being a minivan, the potential for it to transport me and my current and future family places for years to come outweighed its uninventive style.

Embracing the Minivan with Class

Cropped image of rear of minivan with bumper sticker reading "I used to be cool".

Accessible vans are very expensive. Prices are two parts: the base price of the vehicle and the price of the conversion. Conversion means taking out the bottom part of the car and lowering it so the interior is tall enough to accommodate someone sitting in a wheelchair, adding a kneeling system so the car lowers down to lessen the ramp angle, and adding in a ramp. The conversions alone usually cost 20-40K and do not include any other modifications (transfer seat, hand controls, switches, etc). Because of all of this, new WAVs usually run in the 60-80K range. As I mentioned in my Adapted Driving Test, Devices, and Vehicles post, there are funding opportunities, grants, and resources available to help offset this cost. That being said, it has been one of the best investments my family has made for my independence. Even when I am not driving, my van is my freedom.

For a full post about my van, what adaptations I use to drive, and the ways we use the van check out my They See Me Rollin post! (when I finish it)

Adapted Driving Test, Devices, and Vehicles

Are you a new wheelchair user? Do you have a disability that effects your ability to drive a car normally? Do you want to drive again but not sure how you can? This post will be all about options for disabled people to drive including adapted driving tests, hand controls, car modifications, wheelchair accessible vehicles, and more!

Step One: Can I Drive?

While disability alone does not disqualify you from being able to drive, certain disabilities, medical conditions, and medications may impact your ability to safely drive. However, there are many people who can’t drive the typical way because of a disability, but could safely drive with adaptations and or restrictions. So how I do figure out if I can drive?

Adapted driving assessments are designed to evaluate new or newly disabled drivers on their ability to safely drive and help determine any adaptations or special equipment that would help them do so. These assessments are completed by a Certified Driving Rehabilitation Specialist (CDRS) and consists of a clinical evaluation and an on the road test (if determined to be safe). To find a driving specialist near you, you can search on the Association of Driver Rehabilitation Specialists’ directory. A referral from a specialist (usually a doctor, OT, driving school or PT) is usually needed to attend a driving rehabilitation program.

driver and instructor in car during driving exam

The clinical evaluation tests physical abilities, strength, vision, perception, attention, and reaction time through a series of tasks and movements and can often be billed through your insurance. If you are determined to be a good candidate for driving, you will then complete an on the road portion which is similar to a test a new driver completes. If adaptations are needed to drive, this part will be completed with that equipment. Examples of such adaptations include: hand controls, steering knobs, custom seating, lifts, ramps, special mirrors, and special buttons. Once the evaluation is complete, a summary will be completed with the findings, recommendations, and equipment or restrictions. The equipment can then be installed by a mobility equipment dealer. Dealers can be found through the National Mobility Equipment Dealers Association’s (NMEDA) directory.

Not sure where to start or find a program? Oftentimes states will have a driving rehabilitation program as a part of their Vocational Rehabilitation department. In some places, these services (evaluation, equipment, training) are free to residents. If you are a veteran, the VA has Vocational Rehab department that provides extensive services. I will talk more about this in the adapted car section.

Step Two: Adapted Driving Devices and Vehicles

There are a wide variety of devices that can be used and I am by no means an expert, but here are some of them I learned about in my research and evaluation.

Driver's side of car pictured with driver using hand controls and a steering knob to drive
Example of hand controls and a steering knob
  • Hand Controls: Hand controls can be used to replace using your legs to control the brake and accelerator. These can be needed if you have paralysis and amputation but also any disability that effects your lower limbs. There are a wide variety of hand controls and your CDRS may recommend a specific type, brand, or let you decide. For more information about specific types of hand controls, click here! If you have spasms, there are blocks that can be put in front of the pedals so you don’t accidentally hit them.
    Note: if you require hand controls, you are only allowed to drive automatic transmission cars.
  • Steering Knobs: If you only have one arm or are using hand controls, a steering knob may be recommended. These come in a variety of types from knob shaped to post shaped and allow for easier turning without letting go of the wheel or needing a second hand.
  • Switches: Switches can be added to the wheel, steering knob, or hand controls and are customizable buttons that allow the user more convenient access to turn indicators, wipers, hazards and other car functions. Some examples can be found here.
  • Transfer Seats: These are seats that can be put in a wheelchair accessible vehicle (WAV) that allows the user to slide and turn the drivers seat back to make transferring from a wheelchair easier. This is a great option for people who don’t want to drive from their wheelchair but can’t load their wheelchair in their car independently. A video demonstrating how it works can be seen here.
  • Pedal Extensions: Pedal extensions are devices attached to the brake and accelerator that allow people with short legs to reach the pedals from a comfortable driving position.
  • Lifts: Lifts are adaptations that help get you and or your wheelchair into your vehicle. There are car seats that swivel out the door and lower for easy transfers and even foldable boards that lift you up into the driver’s seat that can be put in several models of cars. There are also lifts that lift your wheelchair into your car, trunk or on top of your car. There are also lifts that lift you while in your wheelchair into your vehicle. These types of lifts are common in pickup trucks and SUVS. Depending on your ability, type of wheelchair, car make and model, and lifestyle this may be a great option for you.
Wheelchair accessible lift in a truck
  • Ramps/ Wheelchair Accessible Vehicles (WAVs): For those who driver from their wheelchair, have large electric wheelchairs, or cannot load their wheelchair independently, having an adapted car with a ramp can be life changing. However, to be able to accommodate the ramp and the user a full conversion must be done to the car making these vehicles very expensive. WAVs come in many make and models from your typical minivan to SUV’s to full size vans with lifts. While these vehicles are expensive, there are also funding options, grants, and programs that can help you obtain one. If you have a disability that has a foundation (MS, Parkinson’s, ALS), they may have grants and programs to help pay for this equipment and adaptations. Another resource is your states Vocational Rehab program. In many states, if the vehicle could help you return to work or school, Voc. Rehab will pay for the cost of the adaptations and vehicle conversion once. This means you would just need to pay for the retail value of the car (if you can’t modify one you have).
Wheelchair accessible Ford SUV

To learn about my experience with adapted driving and vehicles, read my post here!

Resources for Wheelchair Users

Assistive technology (AT) is my passion. It combines the best of my engineering, medical, and maker mind to solve problems for myself and other disabled people. As I have been adjusting to being a full time wheelchair user again I have had to modify, create, and improvise not only my physical environment but also my habits and goals. Having a background in AT, many of these changes came to mind automatically or through the suggestion of the many brilliant likeminded individuals of the internet. Through this, I have discovered large gaps in resources and information ranging from adapted driving to basic adaptive equipment to help you through the day. My hope is that this post will serve as a resource for people like me.

***This is an ongoing page, links will be added in as I finish posts***

Adapted Driving Test, Devices, and Vehicles

Wheelchair accessible van with ramp extended out, manual wheelchair user inside vehicle
Wheelchair accessible minivan

This is one of the areas I found the biggest information gap in and incidentally, the category of AT that I knew the least about. Click the above link to read my post on how I drive being a wheelchair user, the wheelchair adapted vehicle I use, and information about disability driving evaluations.

To read about my personal experience with adapted driving and vehicles read my post: Adapted Driving: Figuring Out How to Drive as a Wheelchair User.

For more information about my van’s adaptations check out my post: They See Me Rollin: My Wheelchair Accessible Minivan.

Home Accessibility: Wheelchair User/ Physical Disability

In this post I talk about some of the major modifications we have made to make our two story, standalone home accessible to me. Read to find out about stair lifts, ramps, adjustable beds and more!

AT Hacks from Everyday Items

Affordable AT

Wheelchairs and Mobility Aids

Feeding Tube Resources

All the things (that I can think of) I wish I had when I got a tube. *work in progress*

Feeding Tube/Supplemental Nutrition focused Companies/Orgs

Oley Foundation: Oley is home to many a great resource from conferences to webinars to blogs from tube fed families, to equipment loans and donations!

Some quick go to resources from them are:
Tube Feeding Tips Page
Choosing the Right Tube
Parent/Patient Recommended Accessories
Equipment Exchange/Supply Store
Recorded Webinars

Gastroparesis Patient Association for Cures and Treatment(G-PACT)

Feeding Tube Awareness Foundation
Useful Products
Infinity Pump Manual for Friends and Family
Taping and Site Care

Complex Child: online monthly magazine written by parents of children with special needs which often features resources and stories about tube feeding.
Tube Feeding Information

Replacing a low profile G or J tube

Blogs/Vlogs by People with Feeding Tubes (or their parents)

The Tube Fed Wife

AT/Software for High School andCollege Students with Disabilities

Having a disability or being chronically ill in college comes with many challenges: time management, memory, missing class, taking notes, studying, typing papers, reading textbooks and more! While this by no means will be an extensive list, here are some applications, software, and modifications that you might find helpful broken down by task. *Note: if you have an IEP/504/ College Disability Accommodations, some of these may be available to you for free through your school or may be covered under insurance so talk to your case managers!*

Time Management:

Timeglass (Free)List of three timers in a screenshot of timeglass app

This is a simple application that allows for the use of multiple timers at once, including multistep timers, repeats, customizable icons, and a visual timer. There is a limited feature free version on iTunes.

 
VisTimer Lite (Free)
screenshot of visual timer
Another simple visual timer application that has customization options such as display size, circle color, alert sound, and time warnings. Available in iTunes Store here for free with ads, upgrade available. Compatible with iPhone and iPad.

 

 

Things 3 ($9.99 iPhone/Watch)

I have tried many to-do list-esque applications over the years and while most start off great I find I stop using them after a week or so because they are too complex, don’t sync well between devices, or don’t help. Things 3 is the exception. It has iPhone, iPad, Apple Watch and iMac/Macbook compability, iCloud, Reminders and calendar syncing, it clean and easy to use and helps me immensely with homework, projects, things I need to buy, and my “remind me to think of…”. It is available here.

screenshot highlighting the upcoming feature of Things3 appscreenshot of start page of things3 app
Why I love it:
  • items are easy to move, categorize and mark as complete
  • a log book is kept for your completed items for the inevitable “oh shit I didn’t actually do that” moments
  • it syncs well with devices
  • it syncs with iOS Reminders, Calendar (including google), iCloud, and various devices flawlessly
  • You can set due dates, reminders, and assign a time to complete it
  • You can make subcategories
  • It helps a lot with packing and grocery lists too

Taking Notes:

Microsoft OneNote (Free)

Microsoft OneNote is part of the Office365 suite and is like Word, Powerpoint, and a Notepad combined. It offers the users to create subject sections, draw freehand, add tags such as “question” “to-do” or “follow-up”, simultaneously record and take notes, highlight, change page color, and more! Additionally, if used on Windows, “Learning Tools” is a free package download that includes features such as text-to-speech, focus mode, font-spacing, page coloring options, reading tools for low vision, dyslexia and other print disabilities, and more! I find OneNote to be the most useful one touch screen devices, especially for working out things like math problems that are hard to type out correctly or quick sketches. OneNote is also integrated with Office Lens (below).

screenshot of OneNote application               screenshot of One Note app

Notability ($9.99)

screenshot of notability app on ipad

I have only just started using Notability by Ginger Labs instead of OneNote and while the two applications have large amounts of crossover in terms of functionality, I prefer Notability’s design as well as ease of integration of pictures, better functionality of audio recordings, more functional highlighter, and overall more functional to use and sync.

Writing/ Reading

Wrise ($59)

Wrise is an accessible word processor for Mac that includes word prediction, text-to-speech, tags, and an export to iTunes feature. It is made by Assistiveware and is switch compatible. It also has tools to help people who struggle with similar sounding words, spelling, and reading.

Dragon Dictation (Naturally Speaking- $69.99)

Dragon provides one of the best speech recognition/dictation softwares out there. For those with fine motor issues, hypermobility in fingers, or who just prefer to talk rather than type, this is an amazing software. Dragon works with most common word processors (Word, Notepad etc) and can also be integrated into social media and web browsing.

Studying

Quizlet (Free)

Quizlet is a free study tool that allows the user to make e-flashcards, practice tests, and learning games all from a study set. The free version allows for pictures to be used on flashcards as well but you are limited to a small database. Additionally, study sets can be shared with classmates, worked on collaboratively, or you can search for pre-made study sets by other users. Some of the really beneficial tools of quizlet are: web based with app options, several different modes for learning from traditional “flashcards” to an adaptive learning course that prepares you for your exam. As someone with a learning disability, the ability to have the cards/ questions read to me when I want to is a major plus.

Crash Course Videos (Free)

These videos are fantastic! While you are limited to the topics they cover, I find them informational and think they do a great job of summarizing and presenting information without being too complex. These are great reviews for science courses, history, and other introductory courses. Also just fun to watch to learn something new. They even have videos on study skills!

Khan Academy (Free)

For more specialized informational needs, especially in math and science, Khan Academy does a good job of summarizing, providing examples, and covers more discrete topics.

Other

Office Lens (Free)

Office Lens is a free mobile application (integrated with OneNote) that gives you a scanner and optical character recognition (OCR) in one application — and for free. I use this app all the time!

Things it can do:

  • take a picture of a whiteboard at an angle, auto-crop it, and perform OCR (scans and converts characters to type)
  • take a photo
  • take a picture of a business card, crop it and perform OCR
  • save anything you snap to camera roll, OneNote, PDF, email attachment and more
  • scan and read a document to you
  • scan a document, perform OCR, send document to OneNote, then edit the document
  • compatible with VoiceOver and switch access
    screenshot of note and keeble keyboard

Keeble Accessible Keyboard ($24.99)

Another product of Assistiveware, Keeble is for anyone with vision issues, limited use of hands, dyslexia, and switch users this app is an accessible keyboard that can be added just like a foreign language or emoji keyboard and allows for customization of color, font, word prediction, quick phrases, auditory feedback (speaks what you type), Open Dyslexic font, ALL CAPS, and arrangement (ex. switch user making keyboard in frequency order as opposed to QWERTY).

 

 

Hope some of this helps!

College a cycle chart

 

 

Blogs and Vlogs by EDSers

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one for fellow bloggers and vloggers with EDS and another one for information, research and studies. Please let me know if any links are broken/nonfunctional or suggestions for additions!***

Blogs:

Vlogs:

 

Resources for Ehlers-Danlos Syndrome

***At the suggestion of a friend I will keep two running posts to be updated randomly, this one, for educational resources, studies, etc and another of fellow bloggers and vloggers with EDS. Please let me know if any links are broken/nonfunctional!***

General Information:

Research:

Books for EDS and related conditions”

cartoon of muscle talking to tendons and joints with title "inside my body right now"

 

Life Hacks: Spoonie Edition

   A friend of mine suggested I write a post about this and I live to please but really not sure how many good ones I can come up with. Eh, should be fun. Life hacks and good products for spoonies in no particular order:

  1. Invest in non-bathing bathing supplies
  • dry shampoo: greasy hair is gross, showering is an olympic sport sometimes and this stuff is the bomb.com. I recommend this brand. Also super great if you’re in the hospital and don’t want to wrap IVs etc
  • wipes: same purpose but for the rest of your body. Also nice to get ones with aloe so you don’t become all dried up. I like these.

2. Keep a to go back stocked in your room/car in case of apocalypse or other unexpected events.

basically if you don’t look like this you
aren’t doing it right
  • change of clothes with warm layered option (don’t forget extra underwear)
  • extra day of meds
  • snack if you eat food
  • flashlight
  • KT tape and medical tape
  • eye mask for sleeping/blocking light
  • wipes
  • long phone charging cord or cord with power bank thingy (can never reach outlets in ERs)
  • carabiners, duct tape and zip ties (1000 uses)
  • water
  • first aid kit

3. Glass water bottles

  • this is kind of a weird one but especially for POTSies, who basically need to constantly drink water to survive, this is a good one
  • why: easier to clean, better for putting ice in, won’t give you cancer or whatever BPA does to you, durable, taste better
  • also recommend getting one with a straw, easier to sip if not upright, and don’t spill as much if you’re a spazz
  • This is the one I have an LOVE! I’ve dropped it hundreds of times and the straw doesn’t require a lot of mouth strength to drink out of (#edsprobs)

4. PillPack

  • Pillpack is a mail order pharmacy that pre sorts and packages all your medications and supplements and ships them directly to you. I have been using them for about a year now and love it!
  • they call your docs for refills for you
  • they accept most major insurance companies
  • pay the same copays as you would for CVS, Walgreens, Safeway etc and that is it
  • great customer support and online portal
  • billing options for credit card automatic/not, FSA/HSA etc
  • medication remind app
  • don’t have to spend time sorting meds (or wrongfully doing so)
  • they do my supplements as well as RX


5. Medical alert bracelets/information

    • I have spent many years searching for the right type and run into the same dilemma often: classic medical alert (chain and metal with star of life) is recognized but limiting due to allergies, lack of engraving space, or constant changing information vs classier ID or EMR (electronic record) system might not be recognized by EMS.
      • NOTE: after many talks with EMS friends countless have said they’re only trained to look at wrists for IDs
    • I have implemented a somewhat overkill system but I think its finally working:

    • I use the MyID system for my EMR/bracelet/wallet card. It can be accessed by anyone with a QR reader, smartphone, computer, or phone. It is paired with an app/website portal that can be updated whenever and offers options to upload files, notify emergency contacts, write explanations of your rare and weird medical conditions and much more. I have found that of all the solutions for bracelets I have tried (flashdrive, traditional, wallet card, necklace), this works best. I also have a MyID wallet card in my wallet, and stickers on my phone case and school ID (like I said, overkill is best)
      • I have this one personalized and on the front is has
        “Medical Alert/ Julie LASTNAME/ “see back ICE for info”
      • Back has the access info, QR code, ID and PIN
    • I also have 3 silicone wristbands that give quick information on the same wrist. I do this because those are important for quick access, they draw attention to the other bracelet, and they paint the picture that I have multiple issues and they should definitely look at my EMR
      • “MAST CELL DISEASE/ I CARRY AN EPI PEN”
      • “LONG QT SYNDROME/ SADS AWARENESS”
      • “MEDICAL ALERT/ EHLERS-DANLOS SYNDROME”
    • BUT WAIT THERE’S MORE! At school, I also have a folder taped in plain sight on my dresser next to my bed labelled “EMERGENCY INFO” (useful for EMS, often gets passed to nurses too)
      • In it I have a copy of my
        • MYID info
        • drivers license
        • insurance card
        • any wishes in regards to my care
        • communication instructions (since if EMS are there I often can’t communicate well verbally

6. Mobility devices ≠ giving up ≠ bad

  • I started off using a cane, which I got from a drugstore, standing in line behind an 80 something year old man buying a cane and wanted to qualify my purchase with something like: “its a birthday present for my grandma…?”. It was one of the first times my disability became frequently visible and took a while before I got used to people’s questions, judgements, and my own stigma associated with it. But the cane wasn’t good for me so I moved to forearm smart crutches which people just assumed I had sprained my ankle or something and left me alone. I hobbled on those for about a year before my shoulders gave out. Then I got my rollator which I like too, but is still hard on my body. For me, transitioning to being a part-time wheelchair user was not very hard. It gave me more independence, less pain, got me places faster, and allowed me more options for bad days. It isn’t all magical though, people still judge or make comments, and there are still plenty of times I would rather just be able to walk or not have to worry about accessibility.
  • Most important lesson I learned in that journey was that I needed to do what I needed for my body, lifestyle, and pain levels. I’m not going to lie and say I don’t care what people think or that I’m somehow above it all, but for me the independence and assistance my chair allows me if definitely worth it.