Category Archives: Caregiving – General

“How long have I got left?”

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This is a New York Times article written by Stanford neurosurgeon Dr. Paul Kalanithi about being diagnosed with advanced-stage lung cancer in 2013.

By the way, one of our local support group members went to undergrad with Paul, and had this to say:  “he is such a warm, intelligent and funny person. I’ve been blown away by his story and how he has handled his diagnosis and shared his insights with the world.  A true gift.”

What first drew me to the NYT article was the discussion about statistics and prognosis.

Many of our local support group members who are caregivers (myself included) want to know how long their loved one has left to live with a neurological disorder.  And many of our local support group members who are those with a neurological diagnosis also want to know how long they have left to live.  Not everyone asks these questions but many do.

In reply, I recite the averages based on published research with confirmed (through brain donation) cases.  But no one can know what an individual’s prognosis is.

It was interesting to read Dr. Kalanithi’s new take on the prognosis question.  After he got a lung cancer diagnosis, he asked the same question of his oncologist:

“But now that I had traversed the line from doctor to patient, I had the same yearning for the numbers all patients ask for. … She flatly refused: ‘No. Absolutely not.’ … At each appointment, a wrestling match began, and she always avoided being pinned down to any sort of number.”

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. … My oncologist would say only: ‘I can’t tell you a time. You’ve got to find what matters most to you.'”

Eventually, Dr. Kalanithi has a revised view on the statistics and prognosis question:

“What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability.”

As you can probably tell, the entire article is worth reading.  Here’s a link to it:

www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html

SundayReview | Opinion
How Long Have I Got Left?
New York Times
By Paul Kalanithi
Jan. 24, 2014

Robin

Having a “palliative care conversation”

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For the last several years, I’ve been attending the annual Jonathan King lecture at Stanford.  King had cancer and started a lecture series before he died to get across two messages to MDs:

  • they must empathize with their patients
  • they must foster a patient’s feelings of control and hope

This year’s lecture on October 21st was remarkable.  Palliative care expert Timothy Quill, MD, gave a talk about the importance of palliative care.  He said that palliative care is for the seriously ill with “a high symptom burden”, while hospice is for the terminally ill.  In palliative care, there are three thoughts:

  • we hope for the best
  • we attend to the present
  • we prepare for the worst

Dr. Quill noted that all physicians should be able to have a palliative care conversation with their patients.  The conversation includes open-ended questions such as:

  • what is the best that might happen
  • what is the worst that might happen
  • is faith important

Quill believes that “doctors should address the emotional ramifications of illness, as well as the medical treatment plan, with their patients.”

Though Dr. Quill’s lecture was very good, what made the event so remarkable is that he had a palliative care conversation with a Stanford neurosurgeon who was diagnosed last year with advanced-stage lung cancer.  Dr. Paul Kalanithi, the cancer patient, was very open about his thoughts and feelings.  I first read about Dr. Kalanithi in January 2014 as he authored an article in the New York Times about being diagnosed and wondering what his prognosis is.  It was an honor to meet him in person.

Stanford Medicine published an article about Dr. Quill’s conversation with Dr. Kalanithi.  I hope the wonderfulness of the event comes across in the article.  Here’s a link to it:

med.stanford.edu/news/all-news/2014/10/a-conversation-with-a-cancer-patient-facing-the-end-of-his-life.html

A conversation with a cancer patient about palliative care
Stanford Medicine News Center
October 22, 2014

Robin

 

 

Ambivalent About Your Role as Caregiver?

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At a recent caregiver support group meeting, several group members talked about being a “reluctant” caregiver.  Taking the reluctance idea a step further, others expressed anger at being in the role of a caregiver.  I came across this article from 2013 about “caregiver ambivalence,” which seems applicable to the topic of anger.

The author defines “caregiver ambivalence” as:

“a volatile mixture of contrasting feelings about the hard work of caring for ill, disabled or needy family members that often leads to reactive cycles: Anger triggers guilt, which can then stir up fresh anger.” 

The author, a psychologist, recommends three ideas:

1- Accept that you may have different feelings about caregiving at different times.

2- Accept that you may have different feelings about the care recipient at different times.

3- Gauge your feelings to better guide your caregiving.

Below, I’ve copied the full article from the AARP website.

Robin

www.aarp.org/home-family/caregiving/info-03-2013/ambivalent-about-caregiving-role.html

Are You Ambivalent About Your Caregiving Role?
Learn strategies for dealing with difficult feelings
by Barry J. Jacobs, AARP
March 14, 2013

I have a confession to make: I resent driving my 82-year-old mother to visit her husband, my demented stepfather, at the smelly, crowded and unpleasant nursing home where he now is confined. On the 20-minute ride there, I grip the steering wheel and silently seethe. I’m irritable while she and I try to have a comprehensible conversation with him. I can’t wait to get out of there.

On the way home, however, the first flickers of guilt start to take hold. Who am I to complain about this inconvenience, I ask myself, when my mother is experiencing so much loss? Shouldn’t I — a psychologist specializing in alleviating the heartache of family caregiving — have greater maturity and tolerance for being a family caregiver myself? I feel so ashamed about my grouchiness that I try to make up for it by stopping to buy my mother ice cream. I promise her that I will drive her to see him again soon.

Once home and on my own, though, I revert to stewing angrily. Why should I have to feel guilty, I grouse to myself, when I just sacrificed my afternoon to please my mother? Even if I were a sourpuss, isn’t the fact that I’m driving her good enough? I shudder with dread at the memory of promising her yet another nursing home trip.

These feelings are not just a matter of caregiver reluctance. There’s a large part of me that wants to help my mother, is proud of the commitment I’ve made to her, and feels pleased when she feels pleased. What my alternating emotions reflect is caregiver ambivalence — a volatile mixture of contrasting feelings about the hard work of caring for ill, disabled or needy family members that often leads to reactive cycles: Anger triggers guilt, which can then stir up fresh anger. Or, to cite another example, sadness about a care recipient’s condition can spur worry and fretfulness about how best to help him. But then feeling frantic and frustrated can lead to hopelessness and deep sadness once again.

Such ambivalence takes a psychological toll on many family caregivers. Fraught with conflicting feelings, they are often in a state of inner tension that contributes to their high rates of insomnia, burnout, depression and anxiety. Whipsawed by vacillating emotions, they derive little contentment from knowing that they are doing the difficult but right thing for their ailing family member.

What can family caregivers do to minimize the uncomfortable and debilitating effects of caregiver ambivalence? A few ideas:

Accept that you may have different feelings about caregiving at different times. It is normal to have a range of emotions about the work that you’re doing and the sacrifices you are making over the months and years of caregiving. Few caregivers are gung-ho all the time. All of us experience flagging energy and morale at various points. No one benefits if you beat yourself up for lacking constant calm or cheerfulness.

You may even hate caregiving at times and rue the day you committed to it. These, too, are normal and expectable emotions. They don’t necessarily mean that you feel antagonistic toward the person for whom you’re providing care. They may just mean that you don’t enjoy the dirty work that caregiving commonly entails — for instance, helping toilet a loved one or sitting endlessly in doctor’s office waiting rooms.

Accept that you may have different feelings about the care recipient at different times. Not all relationships between a caregiver and care recipient were perfect pairings prior to the care recipient’s need for care. Some spousal caregivers had long-running, lousy marriages. Some adult children felt angry at perennially critical or controlling parents. Even in good family relationships, there is often some measure of annoyance or conflict. Family caregivers bring this old ambivalence into their experience of caregiving and, as you should expect under the new duress, consequently feel ambivalently about the care recipient now. This is normal as well. Caregivers should spare themselves harsh self-judgments for it.

Gauge your feelings to better guide your caregiving. When family caregivers accept the natural ambivalence of caregiving, then they are more comfortable, less reactive and better able to sustain themselves. But they also need to frequently gauge the intensity of their feelings. Caregivers who are overwhelmed all the time with sadness, anger or anxiety — or who have come to feel mostly hatred for the care recipient —  need to review their caregiving plans. At the least, they may need to solicit more support from others and say no to or limit tasks that severely stress them. (I’ve cut back on driving to the nursing home.) At the most, they may need to stop caregiving altogether by creating alternative arrangements. Your emotions are justified. Accept and trust them.

 

Barry J. Jacobs is a member of the AARP Caregiving Advisory Panel.

 

Tips – Hand Apraxia, Adaptive Equipment, Eating, etc. (Sharon Comden, 9-5-14)

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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.

Robin

—————————————————————

TIPS FOR LIVING WITH HAND APRAXIA
by Sharon Comden
9-5-14

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.

HOME IMPROVEMENTS

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.

www.amazon.com/Brondell-S900-EW-Advanced-Elongated-Toilet

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.

PERSONAL HYGIENE

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.

CLOTHING

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.

www.tervis.com/info/anatomy-of-a-tervis

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.
COMMUNICATION AIDS

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.

Home Edition

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.

Review

•    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.

Sharon Comden

Adaptive equipment, personal hygiene, clothing, eating, communicating, etc. (Sharon Comden, 9-5-14)

Date
Posted by

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, attended our atypical parkinsonism symposium back in October 2012.  Many of us enjoyed meeting her.  She has a CBD 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.

Robin

———————————————————————–

TIPS FOR LIVING WITH HAND APRAXIA
by Sharon Comden
9-5-14

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.

HOME IMPROVEMENTS

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.

PERSONAL HYGIENE
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.

CLOTHING

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 Hoadley.

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

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.

COMMUNICATION AIDS
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. 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. This 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.

Sharon Comden