Points from an expert physical therapist – on PD and parkinsonism

I attended Marilyn Basham’s presentation this afternoon on “Caregiving Made Easy for Parkinson’s Individuals.”  She’s the physical therapist (PT) at The Parkinson’s Institute (TPI).  I picked up a few tidbits at the presentation that I thought I’d pass along.  As the presentation was focused on Parkinson’s Disease (PD), not everything applied to the situations we are dealing with but there were still many interesting points that apply.

Here are the points I found interesting….  (with some of my comments in parantheses)

People with PD and Parkinsonism MUST use a walker or wheelchair to make them as safe as possible.  It’s very important to have mobility and postural strategies worked out with a physical therapist and/or neurologist.

PD is evident when 60-80% of the cells in the basal ganglia have died.

The “automatic motor programs” we have are stored in the basal ganglia.  One of these “programs” is what tells us that to stand up from a low chair, we need to scoot to the edge, put our feet underneath us, lean forward, and push up.  PD folks must either receive cues as to the steps of these programs, or they must practice it so many times that doing it becomes somewhat automatic again.

To overcome freezing (called “gait initiation failure”), you can put masking tape on the floor to provide a visual cue.  Put the tape at thresholds or where ever the person often has the freezing problem.  (Of course this won’t work for those with PSP who have downward gaze palsy.)

A suggested verbal cue to give someone who wants to speak is:  “Swallow.”  (pause to let the person swallow)  “Take a deep breath in and then, at the top of your breath tell me what you want.”  (pause to let this happen)  Swallowing is important because fluid accumulates in the back of the throat and those with PD are not aware of it.  You can give them gum to initiate a swallow response.

Before someone with MSA (or PD with blood pressure fluctuations) stands up, give them a glass of water with salt in it or Gatoraid.  This will increase the blood pressure.  Obviously the person’s diet and blood pressure medication needs to be taken into account before following this suggestion.

We must give time for those with these diseases to process information!  Be patient!  Give long pauses.  Don’t overload them.  Don’t give them more than one complex task at a time.  Walking is a complex task.

(Some of you know that my father and I communicate by our holding up fingers to designate an answer.  Example, “do you want 1 for coffee, 2 for tea, or 3 for nothing,” and I hold up 1, 2, and 3 fingers.  He answers by holding up fingers.  Long after the fingers come up, he may try to verbalize the answer.)  I asked Marilyn why my father could hold up fingers faster than he could verbalize a response.  Marilyn said she didn’t know why but pointed out that parents of small children teach their children sign language long before the children can verbalize.

Dementia is rare in PD.  (It’s definitely common in the Atypical Parkinsonism diseases.)  PD folks may lose their keys but they still remember what keys are and how to use them.  (I thought that was a good story for remembering what dementia is.  My dad, for example, cannot remember how to use an ATM card.  I see the dementia very clearly.)

A patch for Sinemet is in the works.  (Some of your loved ones take Sinemet.)

The head of TPI thinks that PD is the most curable of all the neurodegenerative diseases.  (Let’s hope he’s right because hopefully those diseases related to PD can be cured quickly too.)

Regards,
Robin

“Hard Choices for Loving People” booklet

Most of us aren’t at the point yet when we are thinking about these things — feeding tubes, CPR, and end-of-life care — but it may be beneficial to review some of these decisions and information now with our loved ones.

There’s a book called “Hard Choices for Loving People:  CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness” that may assist in the discussion.  You can purchase the book online ($7). At the present time, it looks like you can read it online at no charge.  See:

www.hardchoices.com

The author, Hank Dunn, a healthcare chaplain, definitely has a point of view, which is that feeding tubes are not appropriate for those with dementia.

Note that “Hard Choices” is available in other languages as well, including Spanish and Chinese.

Robin

 

Free Recordings or Tapes – National Federation of the Blind

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

This is in the category of a small tip….

My dad (with PSP) 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 (PCBVI) in Palo Alto, CA and found a large display clock for $26.75.  Their supplier is MaxiAids (www.maxiaids.com or 800-522-6294), who 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

 

Large display clock suggestion

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