Category Archives: Living with a Neurological Condition

Free Recordings or Tapes – National Federation of the Blind

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This post is about two free services available for those who can no longer read.

My father hasn’t been able to read a newspaper or a book since November.  He thinks it’s because he’s been sick; he says his eyes are tired.  I assume it’s the downward gaze palsy worsening.  He loves the Sunday New York Times.  Whenever I visit, I tried to read some of that paper for an hour.  I get very sleepy reading, however!  I’ve been trying to find someone (to pay) to come read to him.  I “auditioned” one college student who had to ask me how to pronounce every 5th word or so.  So that was a disaster.  I didn’t realize it was such a skill to read the NYT and to read aloud.

Yesterday I came across something that might work.  It’s called Newsline.  The National Federation of the Blind offers this service.  There’s a long list of national and local papers that are recorded, including USA Today, The New York Times, the Washington Post, Los Angeles Times, The Christian Science Monitor, and the Wall Street Journal.

You call a number (presumably local or tollfree), push some buttons, and recordings of the articles you want are played for you.  Obviously, this will work best if there’s a speakerphone.  Apparently you can set up “favorites” and the service will recognize the phone # you are calling from, some hopefully the button pushing at my Dad’s end will be minimal.  I figure that if he can’t do it however, I should be able to get an aide to help out.

You can find info online to sign up — nfb.org/newsline-how-sign.  There is a very easy one-page application.  There needs to be some certification of blindness or visual impairment.  We have a letter from Dad’s eye doctor (OD) saying that he has downward gaze palsy due to PSP.

I’ve also found that the Library of Congress has a National Library Service for the Blind.  The NLS offers many books on tape, even nonfiction books (history and biography).  It distributes these tapes via affiliated state libraries.  The affiliated libraries in northern CA are:

Library for the Blind and Print Disabled
San Francisco Public Library – Serves: San Francisco residents only
Civic Center
100 Larkin Street
San Francisco, CA 94102
Librarian: Martin Magid
Library Code: CA1C
Telephone: (415) 557-4253
FAX: (415) 557-4375
E-mail: [email protected]
Web site: http://sfpl.lib.ca.us/librarylocations/accessservices/lbpd.htm
Hours of Operation: 1:00-6:00 M, Th; 10:00-6:00 T, W; 12:00-6:00 F

Talking Book Library for the Blind
Fresno County Public Library – Serves Fresno, Kings, Madera, and Tulare counties
Ted Wills Community Center
770 North San Pablo Avenue
Fresno, CA 93728-3640
Librarian: Wendy Eisenberg
Library Code: CA1B
Telephone: (559) 488-3217
Toll-free (In-state): (800) 742-1011
TDD: (559) 488-1642
FAX: (559) 488-1971
E-mail: [email protected]
Web site: http://www.fresnolibrary.org/tblb
Hours of Operation: 9:30-5:30 M-F

Braille and Talking Book Library
California State Library – Serves all of Northern CA not served by SF or Fresno Libraries
P.O. Box 942837
Sacramento, CA 94237-0001
Librarian: Aimee Sgourakis
Library Code: CA1A
Telephone: (916) 654-0640
Toll-free (In-state): (800) 952-5666
FAX: (916) 654-1119
E-mail: [email protected] or [email protected]
Web site: http://www.library.ca.gov/html/pubser05.cfm
Hours of Operation: 9:30-4:00 M-F

(I got the preceding info from the web page http://www.loc.gov/nls/find.html and by calling the SF librarian.)

You don’t have to visit the library in person to get these materials.  A special tape player (slower than regular ones) and the tapes are mailed out.  There is usually an application that has to be filled out to get a patron #, and typically some sort of certification is required.  (Many different sorts of people and institutions can provide the certification.)

Both the Newsline service and the NLS service are free.  If you try out either of these services, let me know how it goes!

Robin

Large display clock suggestion

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This is in the category of a small tip….

My dad (with progressive supranuclear palsy) had been getting up in the middle of the night, thinking it was morning.  Probably most of the time this happened he fell because he’s very tired and unsteady on his feet at the wee hours.  Over half of his falls used to occur at 3am or 4am.  I had been addressing the “cause” of the falls.  For example, he would often fall at 3am while putting on his robe in the bathroom.  I moved the robe to right next to his bed so he can put it on while sitting down.  But then I addressed the larger issue of why he gets up in the middle of the night.  I learned that he could not read the time on his alarm clock any more.  The display was too small.

I went to the Peninsula Center for the Blind and Vision Impaired (650-858-0202) in Palo Alto, CA and found a large display clock for $26.75.  Their supplier is MaxiAids (maxiaids.com, phone 800-522-6294), which sells the clock for the same price.  It’s item #74852 – AM-FM Clock Radio with Extra Large LED Display.  The numbers are green.  Turns out that some low-vision people can see green better than they can white or red.  Anyway, this clock solved the problem of not knowing what time it was in the middle of the night.  Dad no longer gets up at 3am or 4am so those falls have been eliminated.  (Unfortunately there’s still lots of other falling!)

The PCBVI and MaxiAids also have clocks that talk (say the time).  We might have to go that route if Dad’s vision problems worsen.

Robin

Disclose early, find roses, and hope in Parkinson’s (2005 article by Daniel Stark)

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I’ve been reading about the importance of hope, and ran across this article from The Washington Post, published last week. It’s certainly worth reading. The author, Daniel Stark, has written extensively about his battle with Parkinson’s Disease (PD). Though it’s about PD, I think the principles apply to any neurodegenerative disorder.

Here’s a link:

www.washingtonpost.com/wp-dyn/content/article/2005/06/20/AR2005062001057.html

Living Large With Parkinson’s
It’s A Messy Path Ahead, the Author Finds — But Better With a Map
By Daniel Stark
Special to The Washington Post
Tuesday, June 21, 2005; Page HE01

Robin

“Challenging the Odds: forget the prognosis” (Barry Bittman, MD)

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Back in 2004 when my father was diagnosed with progressive supranuclear palsy, I joined some online support groups related to PSP.  I met an incredible woman named Aletta, who had been diagnosed in the mid-80s with multiple system atrophy (though she prefers the old term Shy Drager Syndrome).

Today, Aletta posted this wonderful article by Barry Bittman, MD on accepting the diagnosis (or getting a second opinion) but forgetting the prognosis.

Robin

Challenging the Odds: forget the prognosis
by Barry Bittman, MD
Emerge, March 1996

Have you ever met anyone who was given 3 months to live 10 or more years ago, who is still alive today?

Have you ever known a person, who despite an immediately fatal prognosis, managed to beat the odds and survive for a certain occasion such as a
child’s wedding?

Have you ever lost a grandparent who accurately predicted his/her death upon losing a soul mate?

Did you ever stop to consider if it is possible for a doctor to tell us how long we have to live?

If you’ve answered yes to any of these questions, read on.  It’s a fact that many people are alive and thriving today who were told many years ago
that they had only a short time to live.  It’s also common knowledge that some people live just long enough to witness the birth of a new grandchild or to attend a graduation or wedding.  And it doesn’t seem to surprise anyone when the death of one grandparent follows shortly after the other.

Yet, few of us understand how any doctor can make the statement, “You have 3 months to live.”  I’ll let you in on something …. they can’t!

Actually, all that a physician can tell you is how long the average person with your condition typically survives.  The problem here is with the
words, “average” and “typically.”  The doctor relies on statistical data based upon a bell-shaped curve that documents the range of survival for
people who are suffering from a given disease.  At the peak of the curve is the most common survival time experienced by the group under study.  It
comes as no surprise that everyone does not fit there, and often the range of possibilities is extensive.  Some succumb earlier than expected, while others far exceed their prognosis.

Sometimes, however, I wonder if physicians really understand how their conveyed prognosis has the potential to become reality, not because of
statistics, but rather as a result of its impact on the patient’s belief system.  In essence, the doctor’s words become a self-fulfilling
prophecy.  Some people go home and get their things in order, while others go home and get their lives in order.

You’re probably asking yourself what is the difference.  Frankly, the distinction is as wide as the Grand Canyon.  The first group of patients
returns home, announces the bad news, proceeds through the predictable stages of Kubler-Ross, (anger, denial, etc.) revamps their wills, tidies up
their safe deposit boxes, lies down and dies on cue.

The second group, however, goes home and gets their lives in order.  They maintain a fighting determination to complete unfinished business – to accomplish what they never have before.  Remaining time is spent on what they have always hoped to do.  A focus on surviving gives way to planting gardens, creating wildlife sanctuaries, teaching Sunday School, playing with grandchildren, volunteering time for others, and expressing their love.  This group attends classes, reads enlightening books, becomes more spiritual, and sets out on a quest to discover meaning in their lives.

And then something extraordinary occurs – they flourish.  Eating right, exercising, and taking care of one’s self comes naturally, and not as a way
to prolong survival.  Rather, self-care simply evolves as a logical means for enabling their mission in life.

It’s easy to pick such individuals out of a crowd.  These “survivors” make the world a beautiful place, help others, and fulfill their dreams.  They’re the ones who are living mindfully appreciating every moment, and treasuring each experience with gusto and gratitude to our
Creator.  They are our best teachers and guides.

So where does this leave us when faced with a less than desirable prognosis?  My recommendations are simple.  Accept your diagnosis, or, if in doubt, get another opinion.  But never accept your prognosis!

Know that all things are possible, and listen to your inner voice.  Realize that living beyond a serious illness may not be in the cards for all of us
no matter what we do. Yet always remember that it’s the way we live each day that makes the difference.  Love life, realize your dreams, and tip the balance in your favor – Mind Over Matter!

Copyright 1998,1999 Barry Bittman, MD. All rights reserved.