I have always had trouble sleeping. Even as a little girl, I’d lie awake thinking that I was the only one in the world awake. I’d wake up my sister, who would not be happy and certainly not comforting. Now I’m an adult, and thankfully understand the concept of people awake in different time zones, shift workers, etc. However, the bedtime anxiety has never gone away. I can’t seem to slow down my thoughts, and it seems like all I do is keep myself awake by worrying that I’ll never fall asleep.
Watching TV or using my phone keeps me awake because of the blue light. My Cerebral Palsy makes it difficult to hold books, so I sometimes listen to books through the National Library Services‘ free service for people who have print disabilities, BARD. I have started getting myself into a bedtime routine, often using the Amazon Echo’s skills to play Jeopardy and then relaxation music as I prepare to wind down. I’m finding this is helping, but my heart still races when I lay down and turn the lights off.
During a random conversation at lunch, my colleagues on the Michigan Assistive Technology Program were discussing which podcasts were their favorites. Someone mentioned a podcast called “Sleep with Me“. I laughed at first but she explained that it was a podcast meant to help you fall asleep. I thought it was going to be more relaxation music, but I gave it a try. The podcast host, “Scooter”, explained that he was going to help me sleep by telling me a bedtime story. Odd, I thought, but I kept listening. Some gentle music started, and Scooter began talking. Several minutes went by and I realized that I had no idea what he was talking about. I laid there trying to make sense of it, and, ironically, fell asleep. I tried it a few more times, and always fell asleep. Soon, it dawned on me that the podcast isn’t supposed to make sense! The genius of this podcast is that it is supposed to distract you from your racing thoughts and bore you to sleep. Even if you don’t sleep, (and I have yet to stay awake for an entire podcast) Scooter is there to keep you company.
Listeners have also created their own facebook page dedicated to the podcast. Posts range from tips on sleep hygiene, funny animations, or just posts from people who can’t sleep during the night. The best part is that someone is always awake and online to chat with so you never feel alone. Several people, called “Noderators” monitor the page and are available no matter what time it is. I finally don’t feel like I’m the only one in the world awake! The Sleep with Me podcast is an unusual, but free and effective form of assistive technology that helps me with my anxiety and insomnia. Are there other tactics you use?
Welcome back to our ‘AT in the Kitchen’ series! Last time in Part 3 we went to the grocery store and utilized apps to grab groceries in efficient, supportive, and less stressful ways. This time we are back in the kitchen with loads of fresh ingredients just begging to be chopped, cooked, and/or baked into deliciousness! Eating healthy and using what’s on hand can be difficult for everyone; specifically individuals who have support needs centered around memory, organization, and sometimes motivation. I don’t know if you’re like me, but once I have my fridge stocked, I can feel a little overwhelmed of what to do next with all the fresh ingredients. It can be challenging to remember everything I have and plan out what I can make with it before it goes bad. The Fridge Pal app has been really helpful to me; I can basically create a visual copy of my fridge on my phone so I remember what’s available to use. “You scan items in using the bar codes. Fresh produce can be entered manually. Look up recipes that combine ingredients so you know how to use items about to go bad.” In the app, you can also enter an expiration date for each food item.
Pro tip: I hate wasting food so I try to organize my refrigerated shelves by keeping in mind what will keep best the longest. The things that will keep for a while (eggs, cheese, hearty veggies like carrots, etc.) go in the back. In the front of the shelves, I put things that have a shorter life (avocados, softer fruit like strawberries, fresh deli meat, etc.) so I’ll remember to use those before they go bad.
Once my fridge is organized, my next step is to prep and start using ingredients. Hard boiled eggs are a favorite of mine; I can eat them on their own with a little salt, put them in salads, pickle them (yes really!), etc. Now, I have a confession to share with you: I am terrible at boiling eggs on the stove. What I do instead is make oven hard boiled eggs using my oven and a muffin tin. Along with getting more evenly cooked & easier to peel eggs, this method feels safer to me as I don’t have to deal with a big, heavy pot of boiling water once the eggs are cooked. Here’s my method for baking hard boiled oven eggs (or as I call them ‘Oven Eggs’):
Preheat oven to 325 degrees Fahrenheit.
Place 1 whole, un-cracked egg in each muffin well (no muffin papers needed).
Bake for 30 minutes.
When 30 minutes are up, use silicone-tipped tongs to carefully take hot eggs out of the tin and gently place them into a medium-size bowl of ice water (I like using these Oxo bowls with the grippy handles and weighted, textured bottoms).
Once cooled, you can peel your eggs and put them in your fridge or leave them in their shell (to peel whenever you want to eat one) and place in your fridge (I keep mine in a big plastic sandwich bag so they don’t take up too much room.
I have some recipes that I like to use in my weekly cooking/baking rotation, but I’m regularly searching for new things to try. These days, many people have created their own blogs where they share their own recipes. I’m a repeat user of Pinterest and find that many of the most yummy-sounding/looking recipes on there are from individuals’ food/life blogs; with every amazing cookie recipe, there’s a charming story that goes along with it. Confession #2: sometimes I just want the recipe. Am I the only one who feels this way? 😉 I’ve found a trick to help with this desire/need: when I scroll thru the blog post to get to the recipe, there’s usually a link to “print version of this recipe”. When I click this, I get to see just the recipe; I take a screenshot of the print version of the recipe and then I just have it saved as a picture I can access. Using this trick, you get all of the info you need with less noise and less information to try to sort thru (which can be overwhelming and sometimes a barrier to actually making the dish). I also find it helpful that I can zoom in on the picture of the recipe if the text is too small in the screenshot.
When looking for someone to hire to do home modifications there are several key things to consider as you make the best choice for yourself. Home modifications are sometimes tricky. Some builders who have never done them before think they are no different than any other remodel job. This is just not the case. Just like you would not want your dentist to learn how to fill a cavity on you, it is easier, less stressful, and smoother to work with a builder that has experience in the home modifications. Everyone has to learn sometime, but they don’t have to learn on you.
We at Michigan Disability Rights Coalition/Michigan Assistive Technology Program and our partners around the state have seen dozens of ramps that were dangerously installed—very improperly—by well-meaning builders, neighbors and friends. It is a complicated process to correctly install chair lifts, ceiling lifts and other significant structural adjustments. Even grab bars are easily installed the wrong way—giving way when you need them. Then there are scammers on top of the well-meaning but ill-informed people.
The remodeling world is full of sharks who are especially like to prey on older adults and people with disabilities they think they can swindle. News coverage of people who gave a down payment for remodeling or roof work only to have the “builder” never return are far too common and there is an entire television show just about people who have been scammed by builders and left with shoddy work or worse, dangerous situations.
This is not meant to scare you—only to help you prepare to be your own best self-advocate as you look to remodel your home to work better for you.
Contact your local Center for Independent Living and Area Agency on Aging. Both of these organizations are connected to reputable builders in their area. Often, the Area Agency on Aging or Home and Community-Based Waiver Agency contracts with local builders themselves to help people stay in their own homes. Centers for Independent Living help people move back to the community after nursing home stays. These organizations will have an idea of who is good and who doesn’t do good work in your area.
Only work with builders who are willing to explain things to you in a way you understand and treat you with respect. If they aren’t respectful when they are interviewing to do work for you, it isn’t going to get any better when you hire them.
If a contractor bids on your project and their price is way below the other bids—be very wary—this is likely a scam. You get what you pay for.
Try to get referrals from other people with disabilities in your area—word of mouth is a great way to learn about good, reliable builders in your community who know how to do home modifications. Your best bet is to work with someone who is local and has a good reputation with people you talk to.
Good contractors are often very busy. If someone can do the work right away—this may also be a sign that they are not so good. Consider the additional recommendations on How to Shop for a Contractor.
Make sure the contractor gets a building permit in their name—so they are liable for the work being done, not you.
Trust your gut—if you are feeling uneasy, there is a reason, look for someone else.
There is a universal design approach to handling the barriers of fall and winter, but the reality is that it requires real customization and thought long before the barrier appears. Since it is early fall, I thought I’d summarize the universal design approach before expanding the possibilities with a social support approach I ran across recently.
If you have the luxury of designing your home from scratch, you can do a lot to dramatically reduce the need for removal, and to prepare for the snow that will inevitably accumulate. Even if you rent in a high snow area, there are still things you can do:
“General Preparation And Supplies
Stock up on non-perishable food – high calorie is more efficient
Stock up on prescription and over-the-counter drugs
Stock-up on water; if an emergency is expected, fill up containers and bathtubs.
A first-aid emergency kit; supplement it with any special items you need.
Batteries (special ones for health gadgets too)
Battery powered radio; hand crank is good too.
Means for communication: Most phones today require electric to work; make sure you have an old, no-frills phone that needs no more than a basic phone land-line connection. Cell phones will work if you can keep them powered and if the service isn’t congested.
Blankets – plenty
Matches and/or lighters
Snow shovel, snow pusher, ice chipper or snow blower – smaller shovels lift less weight are easier on the back
Needed supplies in good working order – as if they might have to for 7-14 days.
I wish I didn’t have to add this, but in some cases this is important: have personal protection, something with which you can defend your home and protect your family should that become necessary.
Supplies for pet needs too.”
These recommendations are useful for any emergency loss of community travel and use.
You will need to customize your approach to removal as well. There are lots of options if you prepare, and almost none if you wait until the snow has fallen. Have your system in place long before flakes fall. I’ve included two core links for this issue below, but the blog that published those linked posts contains a wide variety of additional home-focused frameworks for successful accommodation.
Similarly, there are variations for other barrier and trash removal, though again they must be customized.
As an adjunct to universal design approaches, I describe below a framework which I believe would be an important enhancement to your preparation, based on a social support model.
I attended one of a series of the meetings for the creation of an Age-Friendly Plan for Lansing Michigan that included a discussion of how to manage the removal of snow, grasses, leaves, and trash. The discussion reminded me of the ongoing, seemingly insoluble social problem of such removal by persons with disabilities that make standard removal a problem.
There is a common set of barriers and practices in all municipalities and rural areas that make clearance of these barriers to movement for people with disabilities problematic:
Automatically devaluing the clearing of barriers if the beneficiaries of clearing are PWD
The use of fines and other sanctions if clearing is not done by PWD themselves. This often necessitates expenses by people who are already poor, sometimes at a premium cost since PWD “have no other choice” but to contract for private clearing or face fines.
The use of disability access parking spots and curb cuts as storage for large snowfall, on the assumption that PWD won’t be using them anyway.
Requiring self-transport of hazardous materials for annual collection when PWD can’t use any transportation to do this. This requires someone else to do it, and all the coordination that entails, or it requires ignoring the hazard.
And so on…..
These are all barriers that define removal as the total responsibility of the person who happens to have the barrier on their property, regardless of property ownership. This is true even when the “trash” is a tree that fell from city property onto private property, as occurred during the ice storm in 2013 in our local area.
The person on the private property was threatened with fines unless she removed it, something that was impossible because of her disability and her poverty. A solution was negotiated to resolve this, but the rules weren’t changed or modified to prevent this wrongful sanctioning in the future.
The proposal in the Age-Friendly workgroup (which I think is a good one) is to make support for such barrier removal a part of an integrated volunteer use system that would cover many neighborhood issues that are infrequent. This idea is one thread of a general proposal to make volunteering and volunteer work easier throughout the range of volunteer activities in the greater Lansing area.
I view such a proposal as a form of Assistive Social Technology (AST) in which community supports provide an ongoing solution to infrequent access issues, along with other neighborhood issues that are infrequent but need resolution. Potentially, there is both a digital/mobile aspect as well as the more obvious social one to such activity.
Such a “model” is already being done by some local people either through existing social relationships, spontaneous generosity, or deliberate local block organizing to assure that both older people and people with disabilities get support in removal. Rather than create an official program which will not change the low priority given to removal of barriers in a short term emergency, building a volunteer community effort where removal is a part of a general ongoing response to local need is a much better solution.
(I am going to try to develop the idea of AST for a future post.)
Happy Labor Day! You might wonder why I’m working on Labor Day and talking about stress. Isn’t work stressful enough? Sure it is. Everyone experiences stress in their lives, and sometimes it is magnified when you have a disability and can’t be as independent as you want to be. For example, public transportation is not running today, so while I would like to attend the gatherings and barbecues, it just wasn’t possible today. That still doesn’t mean that I’m not annoyed by it…
I’ve been thinking all weekend about ways to de-clutter my mind and come back to work on Monday feeling refreshed. I’ve grappled with it all weekend and just found myself getting more frustrated. Then someone gave me a suggestion for what to do when I feel stressed and just can’t let it go: “Do something that you can feel and do at the same time”. So simple. Keep myself occupied while doing something I love. Time to turn to my assistive technology (AT) toolbox!
I like writing, so I bought a journal. Argh…I have Cerebral Palsy and fine motor skills are difficult. My hand quickly began to get tired and I began looking at other options. I considered a journaling app like Penzu, that allows you to journal on the computer or with the IOS/Android app. Penzu allows you to use audio, pictures, and other tools to capture thoughts, feelings, and ideas. Then again, maybe I could use Dragon Naturally Speaking, software that turns speech into text. Even though these were great options, I still felt stressed so I gave up the journal idea.
Personally, apps and podasts work wonderfully to help me relax. However, this weekend they also put me to sleep. Sleeping is good, very good in fact, but I still wanted to enjoy my day off, not sleep it away. It was time to try something new.
Well, then there’s that coloring thing that’s the new fad. I’ve tried it. Don’t really get it. Part of who I am, and, ironically, part of the reason I’m so stressed, is that I am a rule follower. I hate to make mistakes, I have to have things orderly and I definitely cannot color outside of the lines! Why? Heck if I know. It just irks me. The adult coloring books that I had seen had all been beautiful and interesting and fun, but there were so many tiny lines to fill in. How is that fun?
Picture this: you’re at your local grocery store and you have a full cart of groceries. You picked out some healthy things, some treats, and some multi-purpose ingredients. You did good and know you won’t have to go on a big grocery trip again for a while (hooray!). You’re about to get into line, but oh no! You forgot the milk…and it’s on the complete opposite side of the store. Is anyone getting that sick/annoyed feeling in the pit of their stomach right now just thinking about this? You’re not alone! Thankfully, Assistive Technology can help us prepare and plan so that this doesn’t happen/happens less frequently on future trips.
Welcome to Part 3 of our Tasty Tools: AT in the Kitchen series! If you missed Part 1 or Part 2, be sure to go back and check them out. Ok now, this post isn’t technically about AT in the kitchen per se, but it is about AT in the grocery store…which is a means to get the food into the kitchen…You see where I’m going with this right? 😉
Let’s start at the beginning. How do you make your grocery shopping list? Do you write your list on paper? Do you throw caution to the wind and just go to the store with no list (oh the horror lol!) Do you give consideration to the order that you write down the grocery items in? I plan my list out by which door I plan to enter my local grocery store through; by doing this I am less likely to forget something and won’t have to go back across the store for it. For example, if I park by the fruit, veggie, & bakery door, the beginning of my list is going to include strawberries, carrots, hamburger buns, etc. For people who have needs geared around mobility supports, sometimes it’s not an easy or accessible feat to “just go back” to the dairy aisle; planning by store layout can be a real help.
I gave up my paper grocery list years ago in favor of an electronic list on something that I always have on me; my phone. I started using the AnyList – Grocery Shopping List & Recipe Manager app to keep track of my needed grocery items and life has not been the same! I don’t have to worry if I grabbed (or lost) my paper list because it’s all in one place on my phone. And my life partner can add to our grocery shopping list from his own device (he usually adds mini reese cups)! For someone with needs that center around memory, this app not only offers a reminder of what to buy, but also an option for others (Direct Support Professionals, family members, etc.) to add items to the person’s list from their own mobile devices. And on this app, it doesn’t matter which order you input grocery items onto on the list, you can move them around once they are on there (without having to retype them all in).
Another grocery list app that I have found beneficial is the Shopping List Free app. It’s similar to AnyList, but it has good contrast between the white text and dark background in the app (can be helpful for people who have low vision). If you’d like to try out AnyList, Shopping List Free, other grocery shopping list apps, and other shopping supports, contact your local Disability Network and ask for an Assistive Technology demonstration.
An app that came out this past July (and I love using) is the Sam’s Club Scan & Go app. With this app, there is no need for the checkout line! You scan the bar codes of the items you want using your phone or smart device and virtually “checkout” and pay all in the app. When you’re leaving the store, you just show the staff your confirmation of payment on your phone or smart device and you’re all set. Waiting in line to checkout is an activity which almost no one enjoys. For people who have a lower tolerance for sensory input or who have some types of anxiety, bright grocery store lights, fellow shoppers in personal space, and loud, echoing noises can be really disruptive, overwhelming, and stressful. This bar code scanning & checkout app from Sam’s can make all the difference when grocery shopping; one less barrier to getting the food from the store to the kitchen! Speaking of the kitchen, stay tuned for Tasty Tools: Assistive Technology in the Kitchen (Part 4). Coming soon!
Recently, I had to take a leave of absence from Michigan Disability Rights Coalition due to a illness. Normally, I am an extremely organized person, but in this case, all of that went out the window. During that period and even now, assistive technology has been my saving grace. Here are just a few of the things that have been getting me through:
My medication changed drastically during this time and it was hard for me to manage the new dosages. I used the MedCenter 31-Day Reminder System with Talking Alarm Clock. This system holds all of my pills for the month in daily pill boxes. The boxes are numbered and color coded so I can know if I’ve taken by pills for the day. The alarm clock, which I affectionately call “the nag” reminds me… repeatedly… when to take my pills).
I have had an Amazon Echo (also called Alexa) for quite some time. It became so useful to me while I was ill, I bought three more Echo Dots! Alexa was able to play relaxation music, play games with me, read my Audible books, and send voice messages to friends, family and co-workers, and even turn on and off my lights. The things that Alexa is able to do (her “skills”) grows every day and I am excited to see what else she can do!
While I was at home, I was often unable to get into my power wheelchair. As luck would have it, my power wheelchair also broke down at this time. Transferring, especially into the shower with the help of my personal care attendant, was more dangerous than it has ever been. To help with showering, I used a tub transfer bench (which comes in a variety of sizes and models), a pocket shower curtain to easily reach shampoo, etc, and…scuba shoes! Scuba shoes? Scratching your head a little on that one? Let me explain. Scuba shoes are designed for scuba divers to protect their feet from rocks and debris and they have mesh that allows them to dry quickly . For me, they provide great grip and traction on slippery surfaces! I also use them in aquatic therapy for protect the bottom of my feet.
I am so grateful to assistive technology for getting me through this rough patch. I am also really happy to be back in action with the Michigan Assistive Technology Program (MATP) and contributing to this blog again!