Parkinson’s Disease: What to Expect and Where to Begin After Diagnosis

No man is an island, as the familiar saying tells us. When Parkinson’s disease hits one of us, the repercussions affect the wider community around them – particularly the family.

As a member of a family where Parkinson’s is present, it can be very difficult to know what to do, say, or relate; not only to the one dealing with it, but with the rest of the family as well. Old tensions and strained relationships can be exacerbated, adding even more stress to the situation. The level of involvement and care provided by extended relatives and friends can come under scrutiny, while those closer to the one with Parkinson’s may feel like they have to deal with everything.

In times of stress and uncertainty, it’s important to remember that individual caretakers and families have options, informational resources and professional assistance available to them to help them distinguish the needs and provide an actionable plan of care.

ROADBLOCKS IN CARING FOR A PERSON WITH PARKINSON DISEASE

It’s very important, regardless of your situation, to create actionable steps. These can be as small as a weekly communications with family members or friends for moral support or as involved as planning medical appointments and care. But as the effects of Parkinson’s vary from day-to-day, it’s critical to be both flexible and forgiving of yourself when planning doesn’t always go favorably. A general plan, however, will help you have a foundation to return to, offer a degree of control and ward off additional stress.

3 Major issues that commonly cause stress in the family of a person with Parkinson’s are:

• lack of knowledge about Parkinson’s and the effects it can/will have on your loved one
• not enough communication and role assignments between the family members and caregivers
• overall lack of support from peers and friend groups

Every family will experience these issues differently and at different degrees. However, as a general rule, most of the struggles and strains that families face can fit into one of these three categories.

To help you effectively seek out assistance with all three of these challenges, CreateAbility has created this helpful list of resources that can provide information and direction for families of persons with Parkinson’s:

INFORMATION SOURCES:

The National Institute of Neurological Disorders and Stroke

National Parkinson Foundation

American Parkinson Disease Association

Parkinson Alliance

Michael J. Fox Foundation for Parkinson’s Research

Parkinson’s Research Organization

 

CAREGIVING FOR PEOPLE WITH PARKINSON DISEASE

My Parkinson’s: A support group for caregivers of people with Parkinson’s

A Place for Mom: Locator service for additional help of facilities that care for people with Parkinson’s

Parkinson’s Support Advocacy

Parkinson’s Disease: A Guide for Caregiving (Article)

 

PHYSICAL HEALTH RESOURCES

The Climb – Indiana Parkinson Foundation

Exercises for Parkinson’s: Balance Exercises – Video

Rock Steady Boxing for Parkinson’s Disease Patients

 

 

 

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