July 2011

Becky Dunlop, RN, Nurse Coordinator Johns Hopkins Parkinson’s Diseases and Movement Disorders Center
Contact info
email:  rdunlop@jhmi.edu
phone: 410-955-8795
http://hopkinspd.com/
Click here for the list (PDF) of resources Becky supplied.
To view Becky’s PowerPoint presentation Click here (also a PDF).

The Parkinson’s Management Plan: Resources and Services

We learned about Patient Centered Care and how people can empower themselves to do what they can to help manage the disease. Do you feel you are the center? With a team of professionals including physicians, therapists and family to support you? She quoted from the Institute of Medicine (2001) report, “Providing care based on patient’s needs and expectations is a key attribute of quality care”. Another JAMA commentary by Bergeson and Dean noted that the patient and family should be key participants and supports self-management.

Needs vary with the stage of the disease. Therapy is more than pharmacological and surgical and includes physical/occupational/speech therapy, social workers, counselors and psychologist. People are living longer with PD that they ever have and can expect a near normal life expectancy.

Becky talked about the E’s of Empowered Living with Parkinson’s Disease:

Education

Knowledge is power and there are lots of resources. Becky gave us a long list and I’ve posted them on our website. In addition, we now have access to webinars and symposiums and there is also caregiver/partner education.

Exercise

– Must be suited to the individual and is best if it’s fun and something you’re going to do.
– The PFNCA offers lots of exercise programs in the DC metro area. We watched a video of a dance class. Dance improves balance and balance confidence.
– A study from the Cleveland Clinic showed that forced, not voluntary, exercise improves  function in PD patients.

Eating Well

– NPF – features Ask the Dietician on their website.
– Kathrynne Holden’s books are highly recommended. Check out her website.
– when people lose weight they can also lose muscle and strength
– some people, but not all, find that protein interferes with Sinemet absorption. Keep a diary for a week to see how you feel after eating protein and discuss your observations with your neurologist.
– Manage constipation because it can delay effectiveness of medications. Diarrhea can cause medications to go through the system too quickly.

Effective Communication

– Know the vocabulary used when talking about PD such as “on and off” dyskinesia, dystonia and tremor.
– Give the person with PD time to express him/herself when they can’t get the words out fast enough.
– Singing is great!
– Voice assisted devices are available.
– the Lee Silverman Technique’s Think LOUD program has proven effective as some members in our group can attest.

Effective Coping

– Reduce stress and look into professional services.
– Get enough rest. Pace yourself.
– Maintain a healthy perspective
– don’t make PD your life.
– Keep your sense of humor
– Find the beauty in life!

Exploring Options

– Ask  the experts for directions
– consider assisted devices like medication timers and walking aides. In the home you can install grab bars and railings, make sure there is adequate lighting and remove clutter. There are also personal assistance gadgets like a shoe horn, swivel seat and sock aids.

Becky finished with a moving poem she wrote called “Hope”.
That elusive spirit in the heart of man,
With it, desires and fears will withstand.
When present and believed within the soul,
The thread of hope will keep you whole.

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