A Dramatic Change of Life
By: Vicki Ross Name: Susan Peterson A life changing event The injury rendered Susan mostly paralyzed from the neck down, requiring her to be placed on a ventilator. Over the next two weeks in the hospital, Susan hallucinated that balloons tied to her bed were dead people floating above her; that someone's legs were pressing down on her chest. She, later, was transferred to Westside Medical Center's spinal unit in Los Angeles. Her spirits were good, but the rehabilitation was exhausting and difficult. During the month of December, Susan spent eight hours a day in rehabilitation. Discovering resources Simple things are missed
Holding out hope/The importance of family A goal of Susan's is to learn how to work a voice-operated computer so that she can reclaim a little independence. The unit would control a wide range of electrical devices, such as lights, the phone, computer and TV. Other customized items she is looking to purchase include a special pressure-reducing mattress and a hydraulic-assisted standing frame that would allow her to continue with her range-of-motion and strengthening exercises. A portable ramp would enable her caregivers to bring her outside more easily. While Susan has regained some motion in her arms, most of her body below the neck is paralyzed. She said this has done little to heal her physical and emotional injuries. However, Susan is not giving up hope of more fully recovering her movement and happiness. "I don't even mind being like this, at least if I feel good," said Susan, who used to work out at a gym six days a week. "I just want to feel good. People still think it's amazing that I'm happy half the time. I'm just grateful that my mother is still alive, healthy and able to be with me. Words cannot describe how important it is having her in my life. I don't think I could have survived this ordeal without her. My brother, Jeff, has also been a great help and has spent a lot of time visiting me. I also have a lot of wonderful friends and relatives who have been very supportive in donating their time and money to me. For that, I am very appreciative. " Tell us your story |
A Reeve Foundation Fact Sheet on Caregivers PCAs Respite (PDF)
CaringRoad.comCaringRoad.com is dedicated to helping family caregivers obtain information, locate services and find support so they can make informed decisions about the care of their loved ones. An online community of family caregivers.
Caregiver.comOffers a directory of support groups for caregivers.
The Caregiver InitiativeA project of the Johnson & Johnson Consumer Products Company to help family caregivers provide care to their loved ones and reduce their own stress. Includes information on caregiver needs, and training materials for family caregivers.
Family Caregiver AllianceCaregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers.
Family Caregiving: It's Not All Up to YouNFCA and the National Alliance for Caregiving launched a public education campaign to give information and support to caregivers.
FacingDisability.comFacing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers and experts. I know that this is a lot to ask, but we'd be so grateful for your help. I'm looking forward to discussing this link with you, and to answering any questions you may have.
National Family Caregiver Association (NFCA)The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.
National Alliance for CaregivingThe Alliance was created to conduct research, do policy analysis, develop national programs, increase public awareness of family care giving issues, work to strengthen state and local care giving coalitions, and represent the US care giving community internationally.
Red Cross Family Caregiving ResourcesInformation for caregivers.
Spinal Cord Injury CaregiversYahoo Internet Forum is a place to share information and to support other caregivers who are caring for people with SCI.
Well Spouse AssociationA national, not for profit membership organization that gives support to wives, husbands, and partners of the chronically ill and/or disabled. Through information and support groups, the organization address issues common to family caregivers: anger, guilt, fear, isolation, grief, and financial threat.
Quality of Life Grants DatabaseFind resources within the PRC Quality of Life Grants Database. Search by Zip Code, State or an Entire Category.
Library Books and VideosFind resources within the PRC library catalog.
Check out programs in your area on our one-of-a kind online searchable Quality of Life program database. You can search by location or topic. GO
















