Parkinson's Disease: Resources for Patients and Families

Photo of an African American woman witch glasses being receiving care in a clinic

Parkinson’s disease affects every patient differently. This information can help you gain a better understanding of how the disease may affect you and your caregivers.

Resources include:

  • Forms for appointments
  • A handbook on Parkinson’s disease
  • Links to national Parkinson’s organizations
  • Exercise resources
  • Worksheets to help you manage your condition

Learn more about Parkinson’s clinical trials and research at the OHSU Brain Institute.

Patient education

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OHSU resources

Print and fill out the forms you need:

Return by:

  • Bringing to your appointment
  • Faxing to 503-418-9276
  • Mailing, at least two weeks in advance, to:

OHSU Parkinson Center
Center for Health & Healing Building 1, eighth floor
3303 S. Bond Ave.
Portland, OR 97239

Email pcoeducation@ohsu.edu to sign up for our newsletter.

Previous issues:

This information is from Lisa Mann, RN, the education director at the OHSU Parkinson’s Disease and Movement Disorders Program.

Information to have ready for our team

If you’re calling the office for help or coming to an appointment, please have answers to these questions ready:

What is the specific problem? Are you having pain, balance issues or other worsening symptoms, for example?

When did the problem start? Be as specific as possible. Share the date and time of day.

Is it constant or does it come and go? If it comes and goes, do you notice a pattern? For example, is it connected to when you take medications or to a time of day?

Where is the problem? Left hand? Right foot? Be as specific as possible.

What happens during episodes? Describe a typical incident: “My right hand tremor worsens and becomes jerky, and my right foot starts to jerk, too.”

What makes the problem better or worse? Bring information on treatments, positions or medications that help or don’t help.

How would you rate the problem on a 0-10 scale (10 being the worst) and why? In addition to rating the physical effects, you may want to assign numbers for how much it bothers you and affects your quality of life: “Although it’s about a 5, or moderately disabling, it’s an 8 because it’s so distressing.”

What medications are you taking? When you come to appointments, bring a full list of your medications for Parkinson’s and other conditions. Include:

  • Dose of each.
  • Time of day or how often you take each.
  • Any allergies or medications that didn’t work and why.

Have you had any recent incidents (infection, illness, surgery, falls, lifestyle changes, etc.)? All of these can worsen symptoms for Parkinson’s patients.

Tips for success

Keep your answers brief. If you have more than one issue, put them in order of priority in case your provider runs out of time. Find out who can follow up (most likely a nurse).

At appointments, don’t be afraid to:

  • Ask questions. Write them ahead of time.
  • Bring someone with you to take notes.
  • Ask for referrals to other providers you wish to see.
  • Ask periodically for a referral to a physical, occupational or speech therapist if your symptoms change.

Video

See a video with Lisa Mann on how to best prepare for appointments.

This information is from Dr. John G. Nutt, co-founder and director emeritus of the OHSU Parkinson’s Disease and Movement Disorders Program.

What is depression?

Depression is marked by:

  • Two or more weeks of melancholy (feeling down)
  • Loss of interest in daily activities
  • Fatigue
  • Feelings of worthlessness and guilt

It may also come with:

  • Loss of appetite (or, less commonly, an increase in appetite)
  • Insomnia (or, rarely, increased sleep)
  • Anxiety in the form of panic attacks with heart pounding, shortness of breath, shaking, sweating and feelings of doom or impending disaster
  • Feelings of hopelessness, helplessness and self-blame
  • Lack of interest in family, friends, former interests and activities
  • Inability to have fun or experience pleasure
  • Feeling that “everything is too much trouble”

How common is depression in Parkinson’s patients?

Half of Parkinson’s patients will experience depression during their illness. It’s usually mild, but for some patients, it may be disabling or lead to suicidal thoughts or attempts.

What causes depression in Parkinson’s patients?

Depression may be caused by a reaction to circumstances, a chemical imbalance or a mix of both. In Parkinson’s, the decline of the brain chemical dopamine often leads to depression.

Drugs that treat Parkinson’s, high blood pressure and other illnesses can also cause depression. Patients taking levodopa can develop mood swings several times a day. They may have optimism when the medicine is “on” and pessimism when it’s “off.”

If you recognize signs of depression in yourself, reach out to your care team for help.

Community resources

Local resources:

Parkinson’s Resources of Oregon helps patients and families find resources and support groups in Oregon and southwest Washington. Call 800-426-6806.

Exercise can help you stay fit, maintain mobility and minimize the progression of Parkinson’s symptoms, research shows.

Clinical trials and research

For patients

  • Referral: To become a patient, please ask your doctor for a referral.
  • Questions: For questions or follow-up appointments, call 503-494-7772.

Location

OHSU Parkinson Center
Center for Health & Healing Building 1, eighth floor
3303 S. Bond Ave.
Portland, OR 97239
Map and direction

Refer a patient

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