This post may be of interest to those looking for tips for adaptive equipment, personal hygiene, clothing, eating at home and dining out, communication aids, touchscreens, and brain-training apps.
Sharon Comden, who lives in SoCal and Oregon, attended our atypical parkinsonism symposium back in October 2012. Many of us enjoyed meeting her. She has a CBD (corticobasal degeneration) diagnosis, and posts frequently to the CBD-related online support group at Yahoo!
She recently posted her “tips for dealing with hand apraxia” to the CBD online group. These tips aren’t limited to those with CBD or even those with hand apraxia. Rather, they are tips for adaptive equipment, personal hygiene, clothing, eating at home and dining out, communication aids, touchscreens, and brain-training apps. Sharon’s tips are copied below.
TIPS FOR LIVING WITH HAND APRAXIA
by Sharon Comden
Apraxia of the hands is a terrible burden, but there are solutions that will make it easier for you to function in your home or in public. For ease of explanation in public places like grocery stores, I often say that I have had a stroke, that my hands don’t work too well, and I require some extra assistance and patience. Often, the person has a relative or friend who has had a stroke and they’re very accommodating.
Apraxia is a result of your neurons being destroyed or compromised by the tauopathy that is part of this disease. As time goes by, fewer neurons are available to sense pressure, coordinate muscles, and activate muscles when you direct them to do so. This accounts for the loss of strength and coordination so commonly seen in tauopathies. Loss of strength has implications where you sit too – – low couches, chairs, and toilets – – will not work for you anymore because your legs aren’t as strong as they were before you had this disease. Maintaining as much independence for as long as possible becomes our primary goal. I offer these reality-based tips in an open and frank way because coping is paramount if we want to enjoy quality of life under challenging circumstances.
Door Handles/Knobs. One of the nicest home improvements my husband did for me, was to change out doorknobs for lever type handles.
Brondell Swash 900 Bidet Toilet Seat: a very good home improvement addition for personal hygiene when your hands don’t work well. Warm streams of water from adjustable jets cleanse you; this model has a wall-mounted push button control panel that adjusts the temperature and other features. It’s about $400 and my husband installed it himself, taking the electric service from the wall switch to create a separate ground fault interrupted circuit(GFI) and outlet.
Since we are talking about toilets, here is the information on proper height.
Comfort Height/ADA Compliant Toilets. Toilets that measure between 17 and 19 inches in height from the floor to the top of the seat are considered Comfort Height toilets, whereas traditional toilets measure below 17 inches in height. Many Comfort Height toilets are also ADA-compliant when installed per the applicable guidelines.
Handrails and Grab Bars. Stairs and steps need sturdy handrails that the person can grip easily. Decorative wrought iron handrails will not do because as the grip weakens, the fingers need a broad smooth surface to rest on and grip. Grab bars in the bathroom, next to the toilet and in the shower, are essential for safety as the balance and the grip changes. Likewise, around the bathtub too, so the person will not be tempted to use towel bars to steady themselves.
Keeping clean is a high priority for a person with apraxia, but more difficult.
Method Foaming Hand Wash pump and refills: The container’s broad base makes it resistant to tipping over and the large and rounded pump handle makes it especially easy to use. Target and Walmart both carry this brand. The refills come in several different types–be sure to get the foaming type, not the gel..
Baby Wipes for cleaning face, hands and other parts. Be sure your loved one is able to operate the lid on the package.
Elastic Waist Pants, sometimes called “pull-ups.” These pants have no buttons or zippers and can be found listed as running pants or yoga pants. My favorite sources are Sierra Trading Post and Lands End, when they have good sales. Be sure to get the right size for ease putting on and taking off when you need to use the toilet.
Tops and shirts. Often, the first sign of apraxia is difficultly with buttons or zippers. Tops/shirts that have long sleeves and buttons are very difficult to deal with when you have advanced apraxia. If you want to remain independent for as long as possible, I recommend short sleeves and tops/shirts with loose collars. Tuck in shirts make it more difficult to pull your pants down when undressing or using the toilet. For that reason, tunics and long shirt tails are a no-no in my book. Guys can wear sports shirts.
Wallets and Purses. The simpler the better. I currently use a coin purse with slots for credit cards and the like. Some people will find zippers with large pull tags easier to use.
EATING AND DINING OUT
Eating utensils: there are many different versions of utensils. Your occupational therapist will have catalogs of things to make it easier to eat meals and snacks. Bowls are better than plates for people with poor hand coordination. My experience is that shallow bowls with sloping sides make it difficult to eat because you’re chasing your food all the time. That’s why I recommend round bowls with steep sides for eating.
Choice of food is a very personal matter. Often times, eating can become a chore for people with apraxia. They need their food cut up into small pieces. Soups and stews, chopped salads with bite-size pieces of meat/nuts/veggies/fruit/cheese, casseroles and egg dishes like quiche, are often welcomed. Many grocery stores carry bags of chopped salads in several different varieties. Crock pot recipes/cook books have a wealth of information and ideas for delicious meals.
Dining out. I try to remember to bring my round soup spoons with me. have found very kind waitresses more times than not. The same goes for chefs, who are often willing to cut your meat into bite size pieces in the kitchen. I order my salads chopped, with good results. When possible, I ask for a bowl instead of a plate and a short tumbler for my wine. Another alternative for the wineglass is a heavy bottomed cocktail glass with a straw.
Drinking Utensils. Grip and spillage potential are the driving factors in choosing beverage containers. For mugs, a rule of thumb is to look at the handle first. Conventional coffee cups with small loop handles, are not practical for a person with a advanced apraxia. Room for several fingers gives the drinker more control over the mug, important when hot beverages are consumed. The grip changes over time and gets weaker as neurons are destroyed. . Plastic glasses are best when your grip is uncertain. Sometimes it’s easier to grasp a small container than a large one. Restaurant supply places like Smart and Final or Cash and Carry are good sources of cheap, durable, dishwasher friendly, BPA free plastic glasses.
TERVIS Insulated Container. It’s easy to wash and snaps shut so it can’t spill. It has the round hole in the top makes it easy to secure. I got mine at Bed, Bath and Beyond. Suggestion from Cora H.
First-Year Brand Sippy Cups. Walmart online has some that don’t have cartoons on them. This brand is easy to keep clean, durable, and doesn’t leak. They also come in blue and green as a set.
Pink Color Sipply Cups
Bubba Brand Insulated Glasses and Mugs. Durable, BPA free, and easy to wash in the dishwasher. Walmart has a selection of sizes and designs in their stores. The large drinking mug has a good handle on it and you can test it in the store for grip ability. I’ve dropped mine many times and so far, no broken ones.
The ability to use the phone is essential for communication and safety. Push button desk speakerphones make using the phone possible for even advanced apraxia victims. Losing your keyboard skills is one step towards isolation from your friends, professional life, and family. Technology has much to offer us. I’ve been able to maintain my computer communication despite hand apraxia and variable speech difficulties by using speech-to-text software.. If you have the patience, you can make it work for you. These are some tips that I can offer to similarly challenged victims of this disease.
Older Panasonic EASA-PHONE push button desk speaker phones. Goodwill and other thrift stores are sources. Features to Look For: Good speakers and big buttons with auditory feedback if you don’t push the buttons hard enough – – a must have feature for people with apraxia of the hands. Cordless phones with small buttons are impossible to use if you have advanced apraxia. There may be push button speaker phones that will work as well the Panasonic, I confess to not shopping the phone market recently.
Dragon Naturally Speaking. This tool enables the user’s voice to both control the computer and develop and print documents. It is the best speech-to-text software on the market. Dragon Naturally Speaking software is the basis for most speech to text search engines as well. Basic computer commands are included. About seven to 10 commands will do most stuff on the computer and should generate text documents like emails and letters. Several different versions are available priced from $99 and up. The Home Edition @ $99 will probably do well for most people.
Touchscreens on Tablets (IPad) and Computers, Laptops and Smartphones. I use both iPad and a Dell all-in-one touchscreen computer with a 23 inch screen. The large-screen enables me to use the touchscreen with my limited mobility. Smaller screens don’t work for me, so be sure when buying a computer, to test them in the store, including touchpads on laptops. There are a number of adjustments in Windows 8 and earlier versions too, that are very handy. I asked my computer guru to type them up for future versions of this tip sheet.
Touchscreen Apps. These occupational therapist recommended apps are useful and sometimes even fun. They will help maintain your function in your hands and your hand – eye coordination.
• Solitaire. By MobilityWare. This is a classic card game that keeps track of your maximum scores, a handy feature. I use Solitaire scores to track responses to meds and therapies.
• iOT Session. iOT Session is an app that improves and addresses deficits in visual tracking, bilateral coordination, visual perception, fine motor/dexterity, visual scanning, and handwriting/correct letter formation. By utilizing a game like format to address each area, iOT not only catches a child’s or patient’s attention through fun activities, but can increase his or her performance in all mentioned areas. With iOT parents, teachers, educators, and occupational therapists have the ability to automatically track and report a user’s progress through the user log-in feature. In addition, all progress is kept, can be reviewed, and emailed.
• Review of Two Popular Brain Training Websites.
• Fruit Ninja. Android or Apple. Fruit Ninja is a great hand eye app with many variations. Using a swiping motion with your forefinger, you “slash” fruit moving across the screen. Easy one to start with is the Classic game. Get the ultimate slicing experience on iPhone, iPad, Android, Windows Phone and Windows 8! Your success will please the wise ninja Sensei, who will reward you with new blades, backgrounds and more!
• Finger fun fireworks. Android or Apple. Finger fun fireworks is my favorite app for killing time and improving my hand eye coordination. Has cool sound effects too that you can turn off at will. Fireworks Finger Fun is the perfect way to celebrate the 4th of July. The Star Spangled Banner plays in the background as you play this addicting action packed game. Slash the flying fireworks and watch them explode as you try and get the highest score. Try and slice as many fireworks as possible without hitting a flying bomb.
I hope these Tips make life easier, safer, and more enjoyable for people with apraxia.