For Caregivers

The parents, spouses, and close relative of individuals with dystonia experience dystonia in their own way. Through a desire to help their loved one in need, many caregivers neglect their own needs, which can lead to feelings of isolation, frustration, and tension. There are many resources for caregivers including associations, dystonia support groups, books, and the internet. Below are essential elements for caregivers to help promote a healthy well being and avoid depression and burn-out.

Get support for yourself
Sharing your experiences with people who are familiar with your circumstances can reduce stress and help you avoid feeling isolated. Attend support group meetings and communicate with fellow caregivers. Use the internet to locate resources and additional opportunities for networking with other caregivers.

Help your loved one get support
A support group or online support forum can help your loved one deal with the stresses of dystonia. Help him/her find a comfortable environment where dystonia is accepted and shared.

Educate yourself
Information is empowering. Learn as much as possible about dystonia (and, if appropriate, all other related diagnoses), treatments, and what the future might hold.

Take care of your physical health
Be a good caregiver to yourself. Pay attention to your medical needs, eat healthy, and get regular exercise.

Focus on your loved one's strengths
It can become easy to focus on the limitations and obstacles that dystonia creates. Make a conscious effort to focus on your loved ones abilities, talents, and assets.

Communicate your needs
Particularly with affected spouses, parents, or adult children, do not refrain from discussing your feelings and needs with your love to "spare" or "not burden" them. Be forthcoming with your emotions, both when you are content and when you are feeling frustrated.

Learn relaxation techniques
Exercise, yoga, meditation, sports, music, and hobbies are outlets to promote relaxation and reduce stress.

The DMRF has publications for caregivers including:

A Guide for Caregivers of Adults: Caring for a loved one affected by dystonia

Holding the Hope: A parent�s guide to living with dystonia


Information provided by Karen K. Ross, PhD, a clinical psychologist and family therapist in Los Angeles.

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