Na het stellen van de diagnose heb ik geruime tijd geworsteld met de ‘waarom ik’ vraag, waarom moet mij dat nu overkomen…?
Ik denk dat eenieder die met een ziekte (van welke aard ook) geconfronteerd wordt zich die vraag wel stelt.
Er waren zelfs momenten dat ik dacht gestraft te worden, of had ik misschien het verkeerde serienummer meegekregen, kwam ik uit een slecht lot, probeerde men mij iets te vertellen…? Je hebt er geen idee van hoe hard je jezelf pijnigt in het zoeken naar een uitleg…
Wat ik ondertussen weet, is dat het stellen van die vraag en het zoeken naar antwoorden jezelf geen bal vooruithelpt 🙂
Je kan de tijd die je eraan spendeert catalogeren in de rubriek ‘zinloze negatieve energie’, tijd die je spendeert ten koste van ‘Quality time’, …
‘Amyotrofe Lateraal Sclerose’ ( als je dit soort woorden kan leggen bij Scrabble, staat de concurrentie machteloos ) is tot op vandaag een minder gekende aandoening. Nochtans zijn er enkele beroemde personen die deze aandoening hebben, of er zijn aan overleden. Hierna een overzicht:
Lou Gehrig– Henry Louis “Lou” Gehrig (June 19, 1903 – June 2, 1941), born Ludwig Heinrich Gehrig, was an American baseball player in the 1920s and 1930s, who set several Major League records and was popularly called the “The Iron Horse” for his durability. His record for most career grand slam home runs (23) still stands today. At the midpoint of the 1938 season, Gehrig’s performance began to diminish. As Lou Gehrig’s debilitation became steadily worse, Eleanor called the famed Mayo Clinic in Rochester, Minnesota. After six days of extensive testing at Mayo Clinic, the diagnosis of amyotrophic lateral sclerosis (ALS) was confirmed on June 19, Gehrig’s 36th birthday. The prognosis was grim: rapidly increasing paralysis, difficulty in swallowing and speaking, and a life expectancy of fewer than three years, although there would be no impairment of mental functions. Gehrig probably was told that the cause of ALS was unknown but it was painless, non-contagious and cruel – the nervous system is destroyed but the mind remains intact.
Stephen Hawking– Professor Stephen Hawking is a well-known example of a person with MND, and has lived for more than 40 years with the disease. Stephen Hawking: The internationally renowned Physicist, has defied time and doctor’s pronouncements that he would not live 2-years beyond his 21 years of age when he was diagnosed with amyotrophic lateral sclerosis (ALS); also known as Lou Gehrig’s disease. The symptoms of Lou Gehrig’s Disease are very similar to those of CP, Hawking cannot walk, talk, breathe easy, swallow and has difficulty in holding up his head. Hawking, 51, was told 30 years ago, when he was a not-very-remarkable college student.
Mao Zedong– (1893-1976) Chinese military and political leader, who led the Communist Party of China (CPC) to victory against the Kuomintang (KMT) in the Chinese Civil War, and was the leader of the People’s Republic of China (PRC) from its establishment in 1949 until his death in 1976. Regarded as one of the most important figures in modern world history, Mao is still a controversial figure today, over thirty years after his death. He died of amyotrophic lateral sclerosis, commonly known in the U.S as Lou Gehrig’s Disease and elsewhere as Motor Neurone Disease. Mao had been in poor health for several years and had declined visibly for some months prior to his death.
Lead Belly– Huddie William Ledbetter, (January, 1888 – December 6, 1949) was an American folk and blues musician, notable for his clear and forceful singing, his virtuosity on the twelve string guitar, and the rich songbook of folk standards he introduced. Although he most commonly played the twelve string, he could also play the piano, mandolin, harmonica, violin, concertina, and accordion. In some of his recordings, such as in one of his versions of the folk ballad “John Hardy”, he performs on the accordion instead of the guitar. In 1949 he began his first European tour with a trip to France, but fell ill before its completion, and was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease. Lead Belly died later that year in New York City.
Charles Mingus– (April 22, 1922 – January 5, 1979) was an American jazz bassist, composer, bandleader, and occasional pianist. He was also known for his activism against racial injustice. Mingus was prone to depression. He tended to have brief periods of extreme creative activity, intermixed with fairly long periods of greatly decreased output. By the mid-1970s, Mingus was suffering from amyotrophic lateral sclerosis (popularly known as Lou Gehrig’s disease), a wastage of the musculature. His once formidable bass technique suffered, until he could no longer play the instrument. He continued composing, however, and supervised a number of recordings before his death. Mingus died aged 56 in Cuernavaca, Mexico, where he had traveled for treatment and convalescence. His ashes were scattered in the Ganges River.
Lane Smith– (born April 29, 1936 – June 13, 2005) was an American actor best known for his role as Perry White in the American television series Lois & Clark: The New Adventures of Superman. He also played Richard Nixon in The Final Days, for which he received a Golden Globe award nomination for best actor in a mini-series or motion picture made for television in 1990. Smith was diagnosed with Lou Gehrig’s Disease in April 2005 and died of the disease at his home in Northridge, California on June 13, 2005. He was 69 years old.
David Niven– James David Graham Niven (March 1, 1910 – July 29, 1983) was an Academy Award-winning English actor. He resumed his career after war II, with films such as A Matter of Life and Death (1946), Around the World in Eighty Days (1956) (as Phileas Fogg), The Guns Of Navarone (1961), and The Pink Panther (1963). The same year as he hosted the show with Jack Lemmon and Bob Hope, Niven won the Academy Award for Best Actor for his performance in Separate Tables (1958). Niven had a long and complex relationship with Samuel Goldwyn. Niven died in Switzerland on July 29, 1983 of motor neurone disease (Lou Gehrig’s Disease) at age 73.
Jason Becker – (born July 22, 1969) is an American neo-classical metal guitarist and composer. At the age of 16 he became part of the Mike Varney-produced duo Cacophony with his friend Marty Friedman. They released Speed Metal Symphony in 1987 and Go Off! in 1988. At the age of 20, he joined David Lee Roth’s band. While recording the album A Little Ain’t Enough and preparing for the respective tour, he began to feel what he called a “lazy limp” on his left leg. He was soon diagnosed with Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease) and given three years to live. He could barely finish the recording, using low-gauge (thin) guitar strings and other techniques to make it easier to play with his weakening hands. He eventually lost the ability to speak and now communicates with his eyes via a system developed by his father. Although his ALS gradually robbed him of his ability to play guitar, to walk, and eventually even to speak, he still remains mentally sharp and, with the aid of a computer, continues composing.
Chris Pendergast – Pendergast was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease, when he was 44 years old. Pendergast rode in his electric wheelchair from Yankee Stadium, where Gehrig played, to Washington, D.C. The 350-mile journey took 15 days to complete. Pendergast’s symbolic journey, which he called a “Ride for Life,” launched his advocacy campaign for increased research funding and Medicare laws for people living with ALS. Now in its ninth year, the annual Ride For Life has become a major ALS event, raising nearly $2 million so far. According to Ride For Life , more than 30,000 Americans have ALS, which is incurable and causes increasing paralysis, resulting in death from respiratory failure.