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***
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.
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
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!
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
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!
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
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.
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!
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.
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 ;).
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.
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!
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.
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.
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.
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.
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
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 MeRollin post! (when I finish it)
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.
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.
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.
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).
To learn about my experience with adapted driving and vehicles, read my post here!
Wow it has been a hot minute since I posted, writers block merged to flare which merged to a new job which merged into the worst flare yet which brings us to the land of rehab and falling through cracks because you’re diagnosed with weird illnesses. One of the things that can be extraordinarily tricky to navigate when you have rare/non big name disorders is the fact that you often don’t fall into a particular category, track, or program that will help you when you need it.
While some of my conditions have established organizations, few to none are large enough or have enough resources to help patients directly to navigate the system and you’re unlikely to be flagged by a hospital or government organization as qualifying for certain services/help. For example, many people who go from ambulatory to full time wheelchair user are those with spinal cord injuries. Starting a few days after your injury you are connected with case managers, support groups, rehab options, durable medical equipment suppliers, OTs, PTs, ATPs, organizations, and more. There are programs dedicated to these types of injuries which experienced professionals, community-based supports, and even charitable organizations (which is fantastic!). Similar types of “tracks” can be found for traumatic brain injuries, MS, ALS, cerebral palsy, strokes, memory loss, amputation, and more.
But what if you are facing similar types of situations/symptoms as the aforementioned but because of a rare disease? Who is there to guide you through that? Will you qualify for the same type of rehabilitation, supports, and guidance? How can you make the transition from your previous life of being sick but mainly independent to needing help, rehab, equipment, home modifications, or vehicle modifications? Where can you find information, resources, and options?
While I have used a wheelchair in college and for long distances/flares previously, it has been nearly 3 years since I have needed it more than a day. Prior to November 2019 I was working, rock climbing, walking and fairly independent. I wasn’t without significant health challenges but was fairly well managed. I was admitted in the beginning of November following a dystonic storm that sent me to the ER. Due to a variety of factors, I continued to decline in the hospital. By the time I was discharged I was unable to exert myself physically without going into full body dystonia, could not walk or stand for long unassisted, and took a major hit in the categories of coordination, balance, proprioception, and motor planning. Oh, and being in the hospital is just making it all worse so avoid that. Consensus was reached that I needed to be transferred to an inpatient physical rehabilitation program to retrain my body how to walk. Sounded like a good plan. Ha.
Immediately we were hit with barriers- many inpatient rehab centers require at least 3 hours of daily therapies, something my fragile little ecosystem definitely couldn’t handle. Additionally, it seemed uncertain whether the centers would be able to manage full blown dystonic storms or if they would send me right back to the hospital. Lastly, there was the issue of their ability to manage my medications, allergies, and reactions. So we tabled that thought and started trying to get me home with home health, PT, OT, and Speech. Sounded like a solid plan. Clearly we did not yet have 2020 vision. Ha.Ha.
So we spent a month or so getting creative at home with home PT. But we had to work with what we had, and all we really had was a gait belt and some therabands. We made calls looking for a day rehab programs that I would qualify for based on word of mouth suggestions, internet searches and home care recommendations. We essentially found nothing. And this was not because there was a lack of programs, but each program had an if and or but attached to it. So we pivoted yet again towards finding an outpatient PT center that would handle me. My previous PT is amazing but they were not a rehab center and lacked the equipment and staffing needed. Finally we stumbled upon a place that would see me, deal with complex patients and had some experience in the rehab world. The major downfall being that we would be constrained to the typical PT schedule: 1-3 times a week and 30-60 minute time periods but we are making it work. Thank god for the internet.
PT: check. Now all that’s left is: figure out what is wrong with me, fix wheelchair, make 2 story house wheelchair accessible, stay out of the hospital, completely reorganize room, figure out transportation, schedule follow ups, find specialists, research, relearn how to walk, keep all my other conditions in check to avoid hospitals, try not to get the flu from these germballs walking around (PSA get your flu shot) and figure out what to do with my life now.
I would say in the past couple months I have interacted with over 50 medical professions, therapists, and service providers just to take care of the immediate needs. Doctors, NPs, pharmacists, nurses, PTs, OTs, ATPs, stairlift specialists, electricians, mobility specialists, DMEs, insurance, ramp builders, hospital bed suppliers, adapted driving/vehicle specialists, and more! It is complicated and exhausting and I consider myself to be a professional patient!
I can’t help but think about the barriers I faced and wonder how anyone manages to deal with all this. I have several benefits: good insurance, full command of the English language, a good medical knowledge, connections in the medical and rehab communities, internet access, communication skills, time management skills, organizational skills, financial assets, and many more attributes that have made this process easier for me that so many do not have. I have managed to fumble my way through the system and achieve a relatively decent outcome. Rare disease diagnosis should not translate to lack of support and options. These cracks in the system should not be so wide and so deep that the minute you step outside a few pre-drawn paths, you shit outta luck.
We need more advocates. We need broader reaching support for patients with complex and high need patients. We shouldn’t have to find all our own solutions, treatment options, and services. We need more help.
That’s all for now, hopefully I will come up with some post ideas and be posting more frequently. Feel free to comment or let me know if you have any ideas, I will be doing a post about accessible vehicles in the next couple weeks but after that I got nothing.
Disclaimer: This is not a J.K. Rowling post. I have no idea how it ends writing it now. It may make no sense ¯\_(ツ)_/¯. This is basically just a list of some random thoughts.
I believe you can accept and love yourself and still want to change parts of yourself. I believe the ability to adapt is crucial to finding happiness. I believe that differences are necessary for society. I believe that artists and musicians do more for the greater mental health of our stress ball of a society than we give them credit and resources to do. I believe we can all benefit from giving more people the benefit of doubt. I believe that vulnerability is critical to human connection. I believe that there are times to push and times to rest in life and that finding the perfect balance may be impossible but we shouldn’t stop trying. I believe that sickness can be a big, important part of your life and still not define you.
WHERE HAS THIS BEEN ALL MY LIFE? This app, available for free (with bottom ads) on iOS and Google Play store and is an app designed to help people with food intolerances find foods without xyz or low in xyz. The categories are customizable and you can turn on/off intolerances at any time and the search parameters will adjust.
The app allows you to search for foods that contain the following: lactose, fructose, histamine, gluten, sorbitol, and salicyclic acid. There is a search function, you can look up foods by category, and even input your own custom foods or meals. This app is very exciting from a mast cell perspective as it can be difficult to find information on histamine levels in foods but can really be helpful for anyone with food allergies or intolerances or who are on specific diets.
Below are some screenshots of what the app looks like, and how it is laid out. I have not tested it for accessibility yet, but will update if I do. This post is not sponsored or affiliated in anyway, I was just thankful someone showed it to me!
February 4-8th was Feeding Tube Awareness Week. This post will be mostly about types of feeding tubes and feeding as well as some possible reasons why someone might use a feeding tube as I have found few people actually know much about tubes. Ideally, I will also be creating posts about tips and tricks for living with a feeding tube and my experience as a young adult who uses a feeding tube. *lol I tried to get it done on the actual week*
Types of Feeding Tubes
The two main types of nasal (up the nose) tubes are nasogastric (NG) and nasojejunal (NJ) tubes. These are thin, flexible tubes that are inserted through the nose. Both tubes are primarily for temporary and trial use and can often look similar from the outside. The main difference between these two tubes is where they go inside the body. These tubes can be left for 2-6 weeks per tube.
NG tubes are tubes that are inserted through the nose, go down your throat, and end in your stomach. These tubes are common inpatient and outpatient for acute needs or for temporary trialing of tube feeds, however, some patients chose to use NG tubes long term as (with training) they can be inserted and removed at home and therefore can only be on their face while feeding (usually at night in those cases)
NJ tubes are tubes that are inserted through the nose, go down your throat, through your stomach and the first part of your small intestine and into your jejunum. These tubes are less common and need to be inserted by a doctor with imaging to guide the tube into the right place. Many patients have NJ tubes if they have significant vomiting, have an improperly functioning stomach, or cannot tolerate feeding into their stomachs.
There are three main types of surgically (or endoscopically) placed feeding tubes: gastrostomy (G tube), jejunostomy (J/ “straight J” tube), and a gastrojejunostomy (GJ tube). While these are considered more permanent tubes, they can be removed if the tube is no longer needed. These tubes are placed by creating a stoma, or opening that allows the tube to connect to the stomach or intestine, essentially it is an extreme body piercing.
Within these options there are also some differentiations based on the type of tubing and the securement device. Options vary from traditional tube (aka danglers) to low-profile tubes that sit more flush with the skin. Tubes can also vary in how they are held in place on the inside: balloon (filled with water), a hard bumper, or a capsule shaped bumper. Most tubes need to be changed out every couple of months but some can be changed out at home by the user!
That girl has a feeding tube but just ate some cookies! They must not need the tube!
There are many different reasons why someone may need a feeding tube. Some people are able to eat and drink and still needing a feeding tube. This can happen either because they have a very restricted or unreliable diet/food tolerance or because they cannot eat or drink enough to sustain themselves purely on oral intake. Some people can eat, but it makes them very sick and so they only eat on special occasions, however there are plenty of people with feeding tubes who cannot eat or drink at all (NPO). Whether someone can or can’t eat orally does not correlate to how much they need a feeding tube or how sick they are!
What are some reasons someone needs a feeding tube?
There are countless diagnoses that may require a feeding tube such as dysphagia, cancer, gastroparesis, mast cell disorder, IBD, spinal cord injury, muscular dystrophy, ALS, MS, and many many more! Generally, people who need feeding tubes either: have difficulty swallowing, difficulty digesting/absorbing their food, have risk for aspiration (breathing food into lungs), cannot chew, have multiple food allergies, or have a gastrointestinal disorder that impairs their digestive tract.