On 70th birthday, Hawking says 'be curious'
Published Monday, January 9, 2012 8:23PM EST
Stephen Hawking may have been too ill this to attend a special conference to celebrate his 70th birthday at Cambridge University this weekend. But he did share these inspiring words in a taped message: "Remember to look up at the stars, not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious."
Hawking also repeated his call for interplanetary travel: "I don't think we will survive another thousand years without escaping beyond our fragile planet," he said.
On January 8, the theoretical physicist who has decoded some of the most puzzling mysteries of the universe turned 70.
That milestone could never have been imagined in 1963, when Hawking, then 21, was diagnosed with Lou Gehrig's disease -- a progressive and fatal neurodegenerative disease that weakens and paralyzes the body's muscles. But Hawking has defied all the odds, outliving that diagnosis by five decades.
"He is extremely rare in his rare in his life expectancy," said Eleanor Leggat, the vice-president of support services for ALS Ontario.
"Typically, people at the time they get their diagnosis have two to five years to live. Ten per cent of people do live longer than that," Leggat said Monday on CTV's Canada AM.
"The frustrating thing about ALS is that there isn't any typical. You have people who die in a very short time. You have people like Stephen Hawking who lived a much longer time. The disease reacts differently in everyone who is diagnosed with it," said Leggat.
There have a rare few cases around the world of ALS patients surviving into old age. But rare is the operative word.
Currently, no cure is in sight for ALS.
"The research that's going on today is really two-pronged to look at what causes the disease. But it's also around the treatment we can provide for sustaining people that are currently alive," said Leggat.
Hawking defied odds with great access to care
ALS Ontario is a non-profit organization dedicated to providing the necessary equipment and support services to people living with ALS. The organization also provides funding to the ALS Society of Canada towards the research for a cure.
Many patients who come to ALS Ontario for assistance ask the same question: How will this disease progress?
"Many clients will say ‘what can I expect?'" said Leggat.
In some cases, the first hint of the disease appears as a weakening in the patient's voice. In other cases, it may appear as weakness in a leg or an arm. No two cases are the same.
All that is certain today, according to ALS researchers, is that a patient's muscles will become paralyzed and they will become unable to move as the disease runs its course.
The fact that Hawking has lived so long could be attributed to the level of care he has received, according to Leggat.
Thanks to his financial resources, Hawking has had access to state-of the art equipment over the years to help him cope with this disease.
Hawking has communicated by using a tiny infrared sensor that translates small movements in his right cheek into words. It can take up to 10 minutes for Hawking to formulate a single sentence. But the equipment has given Hawking a voice despite his incurable disease.
According to a report from the Associated Press, Justin Rattner, a senior executive at Intel Corp., says the American chipmaker is currently studying ways to help the renowned British physicist overcome his slowing speech.
At age 70, Hawking is losing the use of the nerves in his face and his rate of speech has slowed to one word per minute.
Intel Corp. has had a research team in Britain laying the groundwork for a potential new speech system. That research may benefit Hawking, should he live on. Sadly, most ALS patients of ordinary means will never have such an opportunity.
"I think if you look at the equipment Hawking has had and the support he's been able to have, that has contributed to his longevity," said Leggat.
Today, Hawking has 24-hour care from three nurses who work in shifts to feed and bathe him and attend to all his needs. Most patients simply cannot afford that level of care.
In Ontario, for example, an ALS patient may need somewhere between $140,000 and $150,000 in equipment over the course of the disease.
"That's just for basic equipment," said Leggat.
Also, in most cases family members who care for ALS patients must stop working to look after loved ones.
That decision is a necessary one as the disease progresses. But with it comes the financial burden of income lost.
The average-earning family can expect to spend another $200,000 a year for patient support. ALS patients must also pay for their own medications.
"Many of them just can't afford it," said Leggat.