Re: Progressive Supranuclear Palsy

[RROCKES]

The greatest thing you can do for this person is to maintain function.  PSP
is a progressive neuromuscular disease that starts slowly, but once it takes
hold, functional abilities begin to deteriorate.  This diagnosis is quite
rare, but I think a lot of people diagnosed with Parkinson's Disease are
overlooked for this disease.  One way doctors make the diagnosis is through
vision.  The patient has difficulty scanning down a page from line to line.  
Maintaining function and improving the patients mobility are probably the
most important things an Occupational Therapist can do.  Introduce adaptive
equipment to facilitate function and make things easier for the patient.  The
typical pieces of equipment are helpful including elevated toilet seats,
shower chairs, etc.  Adapted feeding equipment when utensils are difficult to
hold or when tremors may set in.  Proper body mechanics--do not sit on low
furniture, etc.  
Maintain physical status including range of motion and strength.  Keep the
patient flexible and moving, including the neck.  Try to reduce muscle tone
in the trunk and extremities.  The most important aspect is to maintain
functional abilities.  
For communication, you may use communication boards.  There are moderately
expensive electronic  communication devices, but the patient must be
comfortable enough to use these.  The poor communication is a problem,
because the patient may begin to shut out the people surrounding her.  As the
disease progresses, it becomes more and more difficult to speak, and the
effort becomes very difficult.  This tends to isolate the patient.  Don't
forget the social aspect of the patient.  Family involvement is very
important.  
There is much an Occupational Therapist can do, but the work is difficult,
and can become emotionally trying for you the more involved you get and the
more the person deteriorates.
Good Luck    
Richard