Support Group Leader's Toolkit

Speakers & Topics

Whether you are a member of a support group or a support group leader, whether you have been involved in a group for a short or extended period of time, helping your group develop an agenda that promotes ongoing learning and sharing a wide range of subjects can keep a strong group thriving and infuse a group that may be faltering with renewed energy.

Most people with PD work with an interdisciplinary team of healthcare professionals. The following are a sample of the kinds of professional speakers and topics your group may want to consider inviting to speak with your group:

Neurologist/Movement Disorders Specialist

• New treatments (medications, surgical intervention)
• Research update

Pharmacist

• PD medications

Dietician

• Nutrition, vitamins, and minerals we need as we age; "wellness"
• The importance of fluids and fiber in our diet
• PD medications and their potential interaction with food (proteins)

Optometrist

• Vision changes with PD

Speech Therapist

• Speech and/or swallowing problems
• Silverman Voice Treatment (LSVT)/LOUD

Occupational Therapist

• Safety in the home (i.e., kitchen, bathroom)
• Fall prevention (how to fall, how to get up from a fall, etc.)
• Vacationing with PD & travel tips

Nurse (from a physician's office)

• "How to talk to your doctor" tips for office visits
• Incontinence and bladder problems
• Difficulties PD patients can encounter when in the hospital

Physical Therapist

• "Move it or lose it" and demonstration of exercises to be done at home

Social Worker, Psychologist, Psychiatrist

• Coping with the diagnosis
• Adaptation/life changes
• Family dynamics associated with chronic illness
• Depression (what to watch for, how to overcome it)
• Caregiving stress

Career Counselor

• Transitioning from full- to part-time work
• Analyzing your transferable skills and new/different job possibilities

 Dentist

• Oral problems related to PD

Lawyer (disability/elder care attorney)

• Understanding legal jargon - living wills, power of attorney, etc.
• Social Security Disability Insurance (SSDI) application process and other types of other assistance

OTHER TOPICS FOR DISCUSSION

• Planning for the future
• Driving (To drive or not to drive? When do I give up my keys?)
• Long-Term care (assisted living, nursing home)

For additional information/ideas re: topics or speakers, please contact the APDA National Young Onset Center at 877.223.3801 or apda@youngparkinsons.org.

Adapted and printed, with permission, from APDA Arkansas Information & Referral Center, Lydia Stevens, RN, Coordinator.