4/02/2010

Virginia Grace Wilson "Gini" "grandmothers" of the independent living movement.


Virginia Grace Wilson "Gini" Laurie(1913-1989)

 Grace Wilson Laurie, or "Gini," has been called, along with Mary Switzer, one of the "grandmothers" of the independent living movement. Laurie was the editor and guiding force behind the Rehabilitation Gazette: International Journal of Independent Living by and for Persons with a Disability. Although its circulation has never exceeded 12,000, the Gazette has had a tremendous impact on the disability community in the United States and abroad. By the time of Laurie's death in 1989, it had readers in 83 countries and was being translated into several foreign languages.


Laurie was born on 10 June 1913 in St. Louis, Missouri. A year before her birth, an epidemic of poliomyelitis caused the deaths of two of her sisters (for whom she was named) and left an older brother severely disabled. Laurie attended Randolph Macon Women's College in Lynchburg, Virginia, majoring in biology and Latin. Unable to become a physician because of the sexism of the time, she married Joseph Scott Laurie III when she was 25. They moved to Cleveland, where Virginia became a Red Cross volunteer at the Toomey Pavilion rehabilitation center during the 1949 polio epidemic. Laurie visited patients, read to them, provided personal assistance, and was accepted as part of the polio community.
Polio survivors in the 1940s could expect to be hospitalized for two years or more after the onset of their illness. During this time, they formed intense personal bonds. In an effort to keep in touch after leaving the center, staff and residents founded the Toomeyville Gazette, a mimeographed newsletter pulled together by volunteers and mailed out to Toomey alumni. Laurie took the (unpaid) job of editor in 1958. Together with other volunteers, she "gathered news from patients, staff, volunteers and keyholes" and sent the information to everyone listed on the Toomey Christmas card list. The renamed 'Toomey" Gazette was incorporated in 1959 under the name Iron Lung Polio Assistance, Inc., a nonprofit organization. As a "leisurely quarterly" it offered tips on how best to turn the pages of the Wall Street Journal with a mouthstick and designs for a cheek-operated telephone and an "over-bed type writer mount." "Our aim," wrote Laurie in 1960, is "to reach and advance respiratory polios all over the world and to share the problems, experiences, thoughts and adventures that would be of value." Among the Gazette's readers were future leaders of the disability rights movement such as Ed Roberts and Hugh Gallagher.
Under Laurie's direction, the Gazette published articles on legislation, activism, and what would come to be called the independent living philosophy. As early as 1963, Laurie wrote how "morally, institutionalizing young people with so many potentialities for service is wrong." TheGazetteprotested the ending of attendant funding by the National March of Dimes in 1959, and praised the passage of the Vocational Rehabilitation Amendments of 1965. TheToomey j. Gazette was renamed the Rehabilitation Gazettein 1970. "Of first importance," Laurie wrote in a 1977Rehabilitation Gazette editorial, "is the right to freedom of choice to live as normal a life as possible within the community ... Segregation is unnormal."
Laurie was a proponent of cross-disability organizing, and she ran articles on the founding of the American Coalition of Citizens with Disabilities, becoming the only nondisabled member of its board of directors. She was a leader in calling for greater research into "post-polio syndrome" - a variety of health problems endemic to polio survivors as they age. Discerning a pattern to the complaints she was hearing from her older readers, Laurie, in 1981, organized the first international conference on post-polio problems. She founded the International Polio Network in 1985, which publishes Post-Polio Health formerly Polio Network News, to disseminate information about post-polio and, in 1987, the International Ventilator Users Network, which publishesVentilator-Assisted Living (formerly IVUN News). Both publications followed in the tradition of the Gazette, mixing first-person accounts, medical and rehabilitation advice, and news and editorials on political and social issues.

Together with Frederick M. Maynard, D. Armin Fischer, and Judy Raymond, Laurie edited and published the Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors(1984), "the bible on post-polio problems." She wrote Housing and Home Services for the Disabled: Guidelines and Experiences in Independent Living (1977), a landmark exposition of the independent living philosophy. In it, she reported how "four severely disabled individuals can live at home for the cost of maintaining one in a nursing home. For both economic and humane reasons, the rules of government must be amended to make independent living as feasible as nursing home subsistence." In 1983, Laurie founded the Gazette International Networking Institute (G.I.N.I.) as an umbrella organization for the variety of networks and publications she had established.
Today, both G.I.N.I. and the Rehabilitation Gazette are based in Saint Louis, Missouri. [NOTE FROM PHI: GINI became Post-Polio Health International including International Ventilator Users Network and publishes Post-Polio Health and Ventilator-Assisted Living newsletters. TheRehabilitation Gazette ceased publishing in 1999.]
In her later years, Laurie became what Nora Groce called "an elder statesperson" for the disability rights movement, "staying above the fray and upon occasion quietly mediating disputes." She also became its de facto archivist, pulling together one of the world's largest collections of books, articles, letters, and documents on disability, rehabilitation, and independent living. Laurie and her husband, who shared much of her work, were awarded the President's Distinguished Service Award in 1979.
Joseph Scott Laurie died in 1985. Virginia Grace Laurie died of cancer in her native Saint Louis on 28 June 1989.
References
Groce, Nora, The U.S. Role in International Disability Activities: A History and a Look towards the Future (1992).
Laurie, Gini, Housing and Home Services for the Disabled: Guidelines and Experiences in Independent Living (1977).
Laurie, Virginia, "Glimpses of Gini and G.I.N.I.," Rehabilitation Gazette(1990).
SOURCE: Pelka, F. (1997). The ABC-CLIO Companion to The Disability Rights Movement. Santa Barbara, California: ABC-CLIO.
























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The Polio Crusade

THE POLIO CRUSADE IN AMERICAN EXPERIENCE A GOOD VIDEO THE STORY OF THE POLIO CRUSADE pays tribute to a time when Americans banded together to conquer a terrible disease. The medical breakthrough saved countless lives and had a pervasive impact on American philanthropy that ... Continue reading..http://www.pbs.org/wgbh/americanexperience/polio/

Erradicación de La poliomielitis

Polio Tricisilla Adaptada

March Of Dimes Polio History

Dr. Bruno

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movie

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A 41-year-old man developed an acute illness at the age of 9 months during which, following a viral illness with headache, he developed severe weakness and wasting of the limbs of the left side. After several months he began to recover, such that he was able to walk at the age of 2 years and later was able to run, although he was never very good at sports. He had stable function until the age of 18 when he began to notice greater than usual difficulty lifting heavy objects. By the age of 25 he was noticing progressive difficulty walking due to weakness of both legs, and he noticed that the right calf had become larger. The symptoms became more noticeable over the course of the next 10 years and ultimately both upper as well as both lower limbs had become noticeably weaker.

On examination there was wasting of the muscles of upper and lower limbs on the left, and massively hypertrophied gastrocnemius, soleus and tensor fascia late on the right. The calf circumference on the right exceeded that on the left by 10 cm (figure1). The right shoulder girdle, triceps, thenar eminence and small muscles of the hand were wasted and there was winging of both scapulae. The right quadriceps was also wasted. The wasted muscles were also weak but the hypertrophied right ankle plantar flexors had normal power. The tendon reflexes were absent in the lower limbs and present in the upper limbs, although the right triceps was reduced. The remainder of the examination was normal.

Figure 1

The patient's legs, showing massive enlargement of the right calf and wasting on the left

Questions

1
What is that nature of the acute illness in infancy?
2
What is the nature of the subsequent deterioration?
3
What investigations should be performed?
4
What is the differential diagnosis of the cause of the progressive calf hypertrophy?

Answers

QUESTION 1

An acute paralytic illness which follows symptoms of a viral infection with or without signs of meningitis is typical of poliomyelitis. Usually caused by one of the three polio viruses, it may also occur following vaccination and following infections with other enteroviruses.1 Other disorders which would cause a similar syndrome but with upper motor neurone signs would include acute vascular lesions, meningoencephalitis and acute disseminated encephalomyelitis.

QUESTION 2

A progressive functional deterioration many years after paralytic poliomyelitis is well known, although its pathogenesis is not fully understood.2 It is a diagnosis of exclusion; a careful search for alternative causes, for example, orthopaedic deformities such as osteoarthritis or worsening scoliosis, superimposed neurological disorders such as entrapment neuropathies or coincidental muscle disease or neuropathy, and general medical causes such as respiratory complications and endocrinopathies.3

QUESTION 3

Investigations revealed normal blood count and erythrocyte sedimentation rate and normal biochemistry apart from a raised creatine kinase at 330 IU/l (normal range 60–120 IU/l), which is commonly seen in cases of ongoing denervation. Electromyography showed evidence of denervation in the right APB and FDI with polyphasic motor units and complex repetitive discharges, no spontaneous activity in the left calf and large polyphasic units in the right calf consistent with chronic partial denervation. Motor and sensory conduction velocities were normal. A lumbar myelogram was normal. Magnetic resonance imaging (MRI) scan of the calves is shown in figure2.

Figure 2

Axial T1 weighted MRI scan (TR 588 ms, TE 15 ms) of the calves, showing gross muscle atrophy and replacement by adipose tissue on the left, and hypertrophy of the muscles on the right, with only minor adipose tissue deposition

QUESTION 4

The differential diagnosis of the progressive calf hypertrophy is given in the box.

Causes of calf muscle hypertrophy

Chronic partial denervation

  • radiculopathy

  • peripheral neuropathy

  • hereditary motor and sensory neuropathy

  • spinal muscular atrophy

  • following paralytic poliomyelitis

    Neuromyotonia and myokymia

  • Isaac's syndrome

  • generalised myokymia

  • neurotonia

  • continuous muscle fibre activity due to: chronic inflammatory demyelinating polyradiculopathy, Guillain Barre syndrome, myasthenia gravis, thymoma, thyrotoxicosis, thyroiditis

    Muscular dystrophies

    Myositis

    Infiltration

  • tumours

  • amyloidosis

  • cysticercosis

    Link here