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Wellness Support

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Dealing with chronic illness can challenge anyone. At times families and individuals may need someone other than a friend or family member to help deal with the stresses this may be adding to their lives.  Options range from private professional help to moderated group discussions and more. Learning appropriate coping strategies, having an empathetic person listen to your concerns or getting help managing day to day problems may improve your self esteem making it easier to care for another living with chronic illness. Addition help may be needed for the affected person who may also need support, counseling or someone to talk to outside their immediate circle of care. 

Helpful Links

  • ARCH Respite Locator

    Searchable state respite services 

  • Bandaides & Blackboards

    Website focused on families dealing with chronic illness. Many stories written by and for patients and families dealing with chronic illness. 

  • Caring Bridge

    Personalized website designed to keep friends and families informed about a loved one’s status

  • Compassionate Friends

    The Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.

  • Depression and Disability: A Practical Guide

    The North Carolina Office on Disability and Health

  • Family Caregiver alliance

    Searchable state resource locator for family caregiver services

  • How to Cope with Sudden Illness

    Tips on developing coping mechanisms for sudden illness/disability 

  • Intensive Care

     A book by Mary-Lou Weisman about loving and caring for a child with Duchenne Muscular Dystrophy

  • National Alliance on Mental Illness

    NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.

  • National Federation of Families for Children’s Mental Health

    The National Federation of Families for Children’s Mental Health is a national family-run organization linking more than 120 chapters and state organizations focused on the issues of children and youth with emotional, behavioral, or mental health needs and their families. 

  • MentalHelp.net

    MentalHelp.net aims to provide online mental health and wellness education. Their hope is to spread awareness through advocacy of mental health by providing scientifically accurate and up-to-date coverage of mental health and illness topics. They intend to educate, catalog and provide mental health information that compliments, but does not replace, the medical advice of personal medical professionals.

  • Parenting a Child with Special Needs

    National Information Center for Children and Youth with Disabilities article from a parent of a child with a disability

  • TheStatus.com

    Web-tool designed to help family and friends stay updated about a loved one's status

For Siblings

  • When Jack Fell Down...Jill Came Tumbling After

    An article on the reactions of children to the complex illness and disability of their brothers and sisters. It proposes strategies of nursing support to increase the likelihood that these children will cope with the resultant family stress in a positive manner.

  • Facilitating Family Adjustment to a Diagnosis of Duchenne

    Article about psychosocial support for a family following a Duchenne diagnosis

  • Sib Shop

    Presentation about siblings of children with special needs

  • A Sibling’s View

    MP3 download of a presentation from siblings of children with Duchenne

  • Sibling Leadership Network
    Sibling Leadership Network promotes a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental, and provisional supports across the lifespan enabling them to be effective advocates with their brother and sister, and to serve as change agents for themselves and their families

  • Read stories from other parents of boys with Duchenne

Looking for state-specific resources? Check out our state-specific page

What resources would you like to add or update?
Email your suggestions to resources@parentprojectmd.org!

 

While Parent Project Muscular Dystrophy (PPMD) strives to make the information on this website as timely and accurate as possible, PPMD makes no claims, promises, or guarantees about the accuracy, completeness, or adequacy of the contents of this site, and expressly disclaims liability for errors and omissions in the contents of this site. Reference in this site does not constitute endorsement or recommendation by PPMD. Click here to review PPMD’s policy on corporate support.

 

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