“Dad’s Not All There Anymore” – novel about LBD

LBD folks:

A short (28-page) novel was recently published in the UK about a family coping with LBD:  “Dad’s Not All There Anymore” by Alex Demetris.

A few months ago, I read this short review by an LBD caregiver on one of the LBD online support groups:

Alex…calls [his book] a comic; I call it a very short (28-page) graphic novel about a family coping with LBD. The book is beautifully done — a great job of explaining Lewy body disease for the layperson, compassionate, true to life, and astonishingly, almost eerily, close to our family’s own experience. I am so impressed by it that I’ve ordered copies for each of my children.  Alex lives in the UK and the book is not available in the US. I ordered it directly from him … It costs £5 (about $8.50USD) plus shipping. I’ve encouraged Alex to consider making [his novel] available as an e-book, and he’s thinking about it. But for now, I can’t recommend the book highly enough and wanted to let everyone know.

You can see a short excerpt on the LBDA website:


If anyone gets a copy, please donate it to our BSN support group when you are finished reading it!



Ambivalent About Your Role as Caregiver?

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.



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.


33-question survey- what MSA Coalition should focus on?

MSA folks –

The MSA Coalition, based in North Carolina, is asking for those in the MSA community to complete a 33-question survey:


In most of the questions, you are asked to state your level of agreement/disagreement to various statements such as:

  • Online support groups are helpful in providing assistance to MSA patients and caregivers.
  • A handbook about MSA written for the layman would be helpful to better educate the public about the disease, its symptoms and existing treatments.
  • Reference cards containing relevant definitions, key symptoms, effective drugs and known therapies would be good resources for medical professionals, especially those who have “first contact” with the MSA patient.
  • Informing medical professionals, the general public and the MSA community about the process of brain donation is an important goal.
  • Providing a reference work about MSA (such as Professor Wenning’s handbook) to all the medical/osteopathic school libraries would help further professional education about MSA.
  • Funding the development and publication of a journal solely dedicated to MSA is worthwhile.

Pam Bower with the MSA Coalition says:  “Your input via this survey about the key advocacy goals on which we need to focus over the next three to five years will form the basis for our recommendations to be presented” at a November 1-2 meeting in Las Vegas.

The meeting, “Global MSA Research Roadmap,” is being chaired by Dr. Ryan Walsh from the Cleveland Clinic in Las Vegas.  He’s the neurologist of Kerry Simon, the “rock n roll chef” with MSA.  The meeting is being organized with the help of an advisory committee including prominent MSA research leaders, Dr. Philip Low and Prof. Gregor Wenning.  According to the MSA Coalition, other key MSA researchers from around the globe will attend as well as representatives from the US National Institutes of Health, pharmaceutical and biotech companies, and leading advocates from the MSA community.

At the November research meeting, “Where are we now?” and “What do we need to cure MSA?” will be the major topics of discussion.  A detailed plan will be developed, according to the MSA Coalition.

If you have the interest, time, and means to attend the November research meeting in Las Vegas, please let me know.  Perhaps you can attend as a representative of Brain Support Network?  I don’t know how hard it will be to get a seat in the room.


Online Video of Research Update on PSP and CBD (UCSF’s MAC, Feb 2014)

PSP and CBD folks,

Many of you attended the February 8, 2014 Research Update on PSP and CBD in San Francisco.  It was organized by UCSF’s Memory & Aging Clinic and Brain Support Network (us).  It was an impressive line-up of researchers speaking on the latest in PSP and CBD — what we’ve learned and what research is underway at UCSF.

The video from this research update has finally been posted to YouTube.  The link to the first part, which is the welcome given by UCSF’s Dr. Bruce Miller and me, is here:

Welcome (and index page)
18 minutes

There’s not much content here in the “Welcome” except for Dr. Miller’s remarks with an overview of UCSF’s activities in this area.

But that first part (index) is a good place to see a list of all the presentations (on the right side).  They include:

“From Microscope to Brain Scans: Imaging Tau Pathology in PSP and CBD”
Dr. Gil Rabinovici
13 minutes

“Understanding Corticobasal Degeneration (CBD)”
Dr. Suzee Lee
14 minutes

“PSP (CBD) Genetics Familial PSP Study ‘FamPSP'”
Dr. Michael Geschwind
14 minutes

“Sleep and PSP”
Dr. Christine Walsh
7 minutes

“Contribution of Postmortem Studies for Elucidating CBD/PSP”
Dr. Lea Grinberg
12 minutes

“Swallowing Disorders in PSP & CBD”
Speech Language Pathologist Joey Laus
11 minutes

“New Therapeutic Approaches to Tau-Related Neurodegeneration”
Dr. Adam Boxer
14 minutes

“Living with PSP and CBD: Ideas for Care and Support”
Clinical Nurse Specialist Robin Ketelle
18 minutes

Q&A Panel
53 minutes

All of the talks are worth viewing.  I’d suggest listening to each part for a few minutes to determine if it’s of interest to you.  A couple of the talks were quite technical.  But there’s lots of good stuff to see.

Happy watching!


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

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.



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 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.

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 SessioniOT 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.

Sharon Comden