Saturday, April 5, 2008

Would YOU Choose to Live Like Me, If It Meant Living to 150?


ferncohen.com
For those of you in the NYC metro area, why not check out my latest posting to metblogs and vote for the most annoying TV ad spot ??

And everyone can check out my articles: Would You Want to be Frozen Until They Find the Cure? on Associated Content, or If You Could Live Until 150, Would You? which I wrote after I watched the Barbara Walters TV special last week.

which leads to a subject which is probably going to be a subject for another article:The "I'm Dying Anyway" Syndrome. When you think about it, we are all dying. Some of us will live long and die of old age. Some of us will die of a terminal disease and know we have limited time left. Still others of us will just not wake up, die suddenly, or meet with a tragedy. The top story today in NYC is a 24-year-old Columbia University graduate student who was running from muggers, and got hit by an SUV in the street on Broadway and 122nd Street. He died early this morning at St. Luke's Hospital. A real senseless tragedy. Thankfully, very few people die in such horrible circumstances. But how about people like me who are diagnosed with an illness that typically causes death within 2-5 years of symptom onset, on average. "Average" is the operative word here. But when I was diagnosed, I fell into the "Let me enjoy life since I won't be here long anyway".

So a good 5 years after my symptoms appeared, I let a lot of things go. I am embarrassed to say that I haven't been to the dentist in over 4 years. As difficult as it is going to be to find a dentist to work on me, I was referred to the NYU School of Dentistry Clinic. Before my teeth fall out of my mouth, I have to go. And then there is the issue of my weight. I figured I could just eat whatever I wanted, whenever I wanted -- NOT!

My wheelchair is in repair, so I have been using a loaner from the ALS Association. My blood pressure is lower, but not as low as it should be. I must lose weight, not an easy task when you can't exercise. I am hoping when I get the new shoes next week, that with the brace I can get some physical therapy approved. Medicare only wants to give [limited] physical therapy when it is to improve a patient. They could care less that range-of-motion exercises can greatly improve the quality of life of an ALS patient. There is still the attitude in the insurance and healthcare field that people with ALS are "goners" anyway, so why improve our mobility or quality of life?

Anyway, I posted the question on one of my discussion groups, "Would You Want to Live to 150?" and I got some responses like "not if I have to be in a wheelchair and have my diapers changed", or "not if I couldn't drive anymore, and definitely not if I couldn't walk or talk" or this one "I would only like to live to 150 if I could take care of myself and be totally independent. If someone had to take care of me, I would rather be dead". I laughed to myself, because 5 years ago, that would have been my response.
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