Life on Wheels by Gary Karp Page B
Authors: Gary Karp
Tags: General, Juvenile Nonfiction, Medical, Health & Fitness, Philosophy, Physiology, Health & Daily Living, Physical Impairments, Physical Medicine & Rehabilitation
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Janie Whiteford of Santa Clara Valley Medical Center notes:
When you’re discharged, you are definitely not what you’re going to be a year from now. We really push people not to think in terms of where they are now. Consider where you might be a year from now, because it will be a totally different picture.
Rehab is inevitably a sheltered environment where you can begin adjustments. Once you get out, there will be new stresses, even for the person who has good coping skills. Kentfield Rehabilitation Hospital’s Dr. Alex Barchuk comments:
Psychological adjustment is very, very, very, very individual. People who don’t have a history of depression and usually have felt okay about things will go through a period in the beginning of not knowing what the heck’s going on. Then, they realize, “Oh boy, this is a whole new life!” But it isn’t until they get out of the hospital that it really hits them hard.
Ongoing Healthcare
Your disability will need continuing medical management. Maintain a relationship with your physiatrist. If you traveled to a regional rehab center, identify a place that can offer ongoing physical medicine services. Ask your rehab doctor for a referral.
You are also going to have general medical needs. You’ll get the flu, sustain a deep cut, deal with allergies, and so on. Don’t neglect your standard healthcare. Get checkups and have a relationship with a family practitioner.
You’ll have to educate these doctors about your disability. There is much they will not understand, since they do not deal with disability on a daily basis. You will have to ask whether their office has an accessible bathroom, for instance. Believe it or not, the office itself might not have room for the passage of your wheels.
Even if you have been living with your disability for many years— whether you had a formal inpatient rehab experience or not—the rehab community still has something to offer you. Says Margaret Nosek, PhD, researcher at Baylor College of Medicine in Houston:
There are a lot of people in this world who got their rehab a long, long time ago and have never made contact again, so they don’t get the benefit of current knowledge. Despite all of the setbacks due to managed care, rehab has improved and learned a great deal over the years.
References
1
. Di Fabio RP, Soderberg J, Choi T, Hansen CR, Schapiro RT. Extended outpatient rehabilitation: its influence on symptom frequency, fatigue, and functional status for persons with progressive multiple sclerosis.
Arch Phys Med Rehabil
1998;79(2):141-6.
2
. Yarkony GM. Overview of spinal cord injury rehabilitation in the acute phase, the rehabilitation team, and classification of spinal cord lesion. In: Yarkony GM, ed.
Spinal Cord Injury: Medical Management and Rehabilitation
. Gaithersburg: Aspen Publishers; 1994:3.
3
. Price R.
A Whole New Life: an Illness and Healing
. New York: Plume/Penguin Books USA; 1994:101-2.
4
. Hockenberry J.
Moving Violations: War Zones, Wheelchairs, and Declarations of Independence
. New York: Hyperion; 1995.
5
. Morris J. Spinal injury and psychotherapy. In: Yarkony GM, ed.
Spinal Cord Injury: Medical Management and Rehabilitation
. Gaithersburg: Aspen Publishers; 1994:225.
6
. Winchell E.
Coping with Limb Loss. Coping with Chronic Conditions: Guides to Living with Chronic Illnesses for You & Your Family
. Garden City Park, NY: Avery; 1995:225-26.
7
. Fisher I. Families Struggle to Care for Loved Ones.
New York Times/San Francisco Examiner
; June 7, 1998.
Chapter 2
Healthy Disability
Our culture broadly equates disability with “sickness.” Your mobility impairment might indeed correspond to a medical condition for which you are being treated or from which you are recovering. Many disabilities, however, are relatively stable conditions. This is generally true for spinal cord injury (SCI), cerebral palsy (CP), amputation, brain injury, and
Janie Whiteford of Santa Clara Valley Medical Center notes:
When you’re discharged, you are definitely not what you’re going to be a year from now. We really push people not to think in terms of where they are now. Consider where you might be a year from now, because it will be a totally different picture.
Rehab is inevitably a sheltered environment where you can begin adjustments. Once you get out, there will be new stresses, even for the person who has good coping skills. Kentfield Rehabilitation Hospital’s Dr. Alex Barchuk comments:
Psychological adjustment is very, very, very, very individual. People who don’t have a history of depression and usually have felt okay about things will go through a period in the beginning of not knowing what the heck’s going on. Then, they realize, “Oh boy, this is a whole new life!” But it isn’t until they get out of the hospital that it really hits them hard.
Ongoing Healthcare
Your disability will need continuing medical management. Maintain a relationship with your physiatrist. If you traveled to a regional rehab center, identify a place that can offer ongoing physical medicine services. Ask your rehab doctor for a referral.
You are also going to have general medical needs. You’ll get the flu, sustain a deep cut, deal with allergies, and so on. Don’t neglect your standard healthcare. Get checkups and have a relationship with a family practitioner.
You’ll have to educate these doctors about your disability. There is much they will not understand, since they do not deal with disability on a daily basis. You will have to ask whether their office has an accessible bathroom, for instance. Believe it or not, the office itself might not have room for the passage of your wheels.
Even if you have been living with your disability for many years— whether you had a formal inpatient rehab experience or not—the rehab community still has something to offer you. Says Margaret Nosek, PhD, researcher at Baylor College of Medicine in Houston:
There are a lot of people in this world who got their rehab a long, long time ago and have never made contact again, so they don’t get the benefit of current knowledge. Despite all of the setbacks due to managed care, rehab has improved and learned a great deal over the years.
References
1
. Di Fabio RP, Soderberg J, Choi T, Hansen CR, Schapiro RT. Extended outpatient rehabilitation: its influence on symptom frequency, fatigue, and functional status for persons with progressive multiple sclerosis.
Arch Phys Med Rehabil
1998;79(2):141-6.
2
. Yarkony GM. Overview of spinal cord injury rehabilitation in the acute phase, the rehabilitation team, and classification of spinal cord lesion. In: Yarkony GM, ed.
Spinal Cord Injury: Medical Management and Rehabilitation
. Gaithersburg: Aspen Publishers; 1994:3.
3
. Price R.
A Whole New Life: an Illness and Healing
. New York: Plume/Penguin Books USA; 1994:101-2.
4
. Hockenberry J.
Moving Violations: War Zones, Wheelchairs, and Declarations of Independence
. New York: Hyperion; 1995.
5
. Morris J. Spinal injury and psychotherapy. In: Yarkony GM, ed.
Spinal Cord Injury: Medical Management and Rehabilitation
. Gaithersburg: Aspen Publishers; 1994:225.
6
. Winchell E.
Coping with Limb Loss. Coping with Chronic Conditions: Guides to Living with Chronic Illnesses for You & Your Family
. Garden City Park, NY: Avery; 1995:225-26.
7
. Fisher I. Families Struggle to Care for Loved Ones.
New York Times/San Francisco Examiner
; June 7, 1998.
Chapter 2
Healthy Disability
Our culture broadly equates disability with “sickness.” Your mobility impairment might indeed correspond to a medical condition for which you are being treated or from which you are recovering. Many disabilities, however, are relatively stable conditions. This is generally true for spinal cord injury (SCI), cerebral palsy (CP), amputation, brain injury, and
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