2/24/2017

Nick Dupree Fought To Live 'Like Anyone Else'



Disability rights activist Nick Dupree died last weekend. Tomorrow would have been his 35th birthday.
Back in 2003, he told NPR: "I want a life. I just want a life. Like anyone else. Just like your life. Or anyone else's life."
He got that life.
Dupree had a severe neuromuscular disease and was living in Mobile, Ala. He was in a wheelchair and depended on a respirator to breathe. The state paid for nurses to come into his home — even take him to college classes. But that care was about to end the day he turned 21. He faced going to a nursing home, where he feared he would die.
Every state has a program that pays for care for severely disabled children to live at home, but not every state continues that care into adulthood. When Dupree was 19, he started Nick's Crusade — an online campaign to change the rules in Alabama.
Just a few days before his 21st birthday, he won. In 2008, he decided to move to New York City.
"I assisted him moving to New York, which was very, very scary for me," says Dupree's mother, Ruth Belasco. "But, I figured that his joy would outweigh my fear."
In New York, Dupree made friends. He went to museums. He could move just the tip of his thumb and his index finger. And if someone placed his hand on a computer track ball, he could draw. That's how he made online comic books that reflected his quirky humor.
Dupree created webcomics — occasionally featuring Theodore Roosevelt and zombies — that reflected his quirky humor.
Superdude Comics/Courtesy of Alejandra Ospina
Something else happened in New York, too:
"It was just wonderful that he fell in love," Belasco says. "And it was a wonderful story. And it was something that he always hoped for; [he was a] very romantic young guy and he actually found someone who loved him and he loved in return."
He'd met the love of his life — Alejandra Ospina — online. Their wedding ceremony was in Central Park.
"We had vows. We had lots of people," says Ospina, who has cerebral palsy and also uses a wheelchair. "There was food. And it was very windy that day, which didn't play well with the ventilators. But it was all right."
Still, like many other people with disabilities, they didn't legally marry. If they had, their incomes would have been counted together, and Medicaid would have cut Nick's benefits.
"He lived with me in an apartment in the community for seven years and 8 months," Ospina says.
She knows exactly because that's how Nick — who wasn't supposed to live past his 21st birthday — counted time.
A chapter Dupree wrote about his life and struggles was included in a disability rights anthology.
Courtesy of Alejandra Ospina
The ending to Nick's story, though, isn't a happy one.
The people who loved him ended up feeling helpless and guilty. Providing the round-the-clock care became difficult. When nurses didn't show up for their shifts, Ospina and Dupree would fight over caregiving.
They separated last spring and Dupree decided to move to a hospital — the place he'd tried to avoid his whole life.
In the past 10 months, he moved between a hospital and nursing homes. He got pneumonia and bed sores.
"Each time he got sick again, it would be worse and worse and worse," Belasco says. "And his ability to withstand that just ran out."
Belasco says she wanted her son to come home to Alabama. But that wasn't easy. She already cares for his younger brother who has the same disease. She takes the night shift seven nights a week, sleeping during the day.
And then last week, Nick fell ill with sepsis and heart problems. He died at a hospital in New York City.

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

video

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