How is comprehensive care different?
A comprehensive care approach shifts the focus of care from your disease and symptoms alone to how these symptoms affect your day to day life and sense of wellbeing. Every person is different – not only in how he or she is affected by the disease, but also in how he or she reacts to the life changes that are associated with it. Care must be individualized to reflect these differences. It is difficult for a physician to meet all of your needs as a person with PD. By establishing a care team you can complement your medical care and tap into the strengths of people with different areas of expertise. Complete the Comprehensive Care Worksheet to see if you can benefit by adding rehabilitation specialists to your team.
A team approach can focus on disease management, quality of life issues and foster holistic care that focuses on personal healing and wellness. Emotional, spiritual and social support issues are important from the time of diagnosis until end of life.
Rehabilitation- is it right for me?
It is commonly believed that rehabilitation therapy such as physical therapy, occupational therapy or speech therapy is most helpful for people with advanced Parkinson’s and/or many physical problems. This is not necessarily true. With the appropriate goals, motivation and expectations for treatment, persons at any stage of Parkinson’s disease will benefit.
The Early Years with Parkinson’s
In early-stage disease, the focus is not so much on movement problems and disability as it is on maintaining health and wellness. Because Parkinson’s is a progressive disease, it should be at this early stage when instruction on patient-self care is introduced. The emphasis is not typically on “fixing” a problem but on preventing or delaying future problems. It is also about maintaining hope, setting goals and establishing control. Awareness and education are critical to self management, but education alone is not enough. You and your therapist can work on setting goals, making commitments to change and developing action-oriented problem solving techniques.
Your personal care program might include a focus on coping and adjustment, work, hobby, exercise, nutrition, sleep and stress management, and mental or spiritual health
If and when disability increases with Parkinson’s
After several years of living with Parkinson’s, challenges can emerge in such areas as movement, mood, or communication. You may experience changes or difficulties in your home, work, personal or social life. At this stage, you and your team may need to include a specialist in gait and balance therapy, and fall prevention techniques. Therapists in speech and communication may need to be consulted, perhaps along with experts in swallowing, diet and cognition. If driving becomes a problem, it is smart to undergo a professional assessment. If getting around in the house becomes more difficult, it may also be smart to have your home evaluated for safety while teasing out how much help you may need with home and work activities. A “complete-care” approach may also include a reassessment of hobbies and other recreational activities and adaptation to changing roles in one’s life and family.
Living with Advanced Parkinson’s
In the later stages of Parkinson’s, the focus turns to managing the condition and finding ways to optimize the quality of life. Communication, relationships, family, spirituality, creativity and quality time become important issues. Pain, bed and seating comfort, transfers to and from furniture, wheelchair selection and home health needs may need to be addressed. The care team will want to explore and implement palliative and comfort care measures. This is also the time to gather information about home living arrangements such as assisted care, hospice, respite, adult day care and nursing home care.
What is needed and who should be on the team may be very different from one person to the next. This Specialists section will introduce you to professionals that can play an important role in your medical care and wellbeing. Don’t forget to consider the many healing specialists and professionals in your community that can help you achieve your own personal sense of wellness and healing.
Take Charge and be an active team member?
- Go to My Medical chart and complete the forms designed to keep your healthcare on track and organized.
- If you have not received one, ask your doctor for a referral to rehabilitation therapies. Use the Comprehensive Care Worksheet to guide you in this quest.
- Use yours and your doctor’s time wisely. If you have only 15 minutes- it is up to you to get the most out of it.
- Do your homework and prepare for your visits. Keep a list of the treatments you have tried, noting the side effects and what worked.
- Set realistic and clear goals for each visit. Be honest with your therapist as to what you will or will not realistically do at home between appointments or after discharge. Treatment recommendations will only work if you follow through with them.
- Look into community programs such as support groups, meditation, exercise, yoga or tai chi programs.
- Be creative and stay positive. Take classes, go to support groups and consider art/music therapy.
- Ask for help before problems become overwhelming!
Author: Monique Giroux, MD
Copyright 2011 Northwest Parkinson's Foundation Wellness Center