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The Leonard Lopate Show

Life with Chronic Illness

Tuesday, January 08, 2008

We look into how people learn to live with chronic, severe illnesses. Journalist Richard M. Cohen, who has MS, has followed the lives of five people who have serious conditions like ALS and bipolar disorder; he writes about them in a new book called Strong at the Broken Places: Voices of Illness, a Chorus of Hope. He’s joined by his wife Meredith Vieira of the "Today Show."

Event: Richard Cohen will be speaking and signing books
Tuesday, January 8 at 7 pm
Upper West Barnes & Noble
82nd Street and Broadway

Weigh in: Do you have a chronic, severe illness? Tell us how you’ve learned to live with it, and what the greatest difficulties/successes have been.

Listen to Leonard's interview with Richard Cohen from February 2004
Visit the Strong at the Broken Places website, where you can share your own story of chronic illness


Comments

  • [1] Obal from NJ January 08, 2008 - 12:26PM

    I have an unnamed immune disorder along with many unseen disorders. i would love to hear Richard speak to how people with the unseen ,meaning you look OK but are very ill, are treated. Example,using handicapped spaces,many many sick days.

    i cannot be in crowds. i cannot go to the movies when the theatre is full. i can't play with children. a plane or a subway is a danger to me as i may touch or breathe something that may make me get a killing infection.

    i plan on reading Richard's book as i did the first.

    the website he talks about is actually "butyoudon'tlooksick.com

    peace,

    tish obal


  • [2] Barbara Kalina from New Jersey January 08, 2008 - 12:29PM

    I was diagnosed with MS January 2004 but believe to have had it for about 15 or 20 years. The most important thing in living with MS is living a life and focusing on my goals and ambitions - not thinking about the illness and feeling sorry for myself. As an adult student and a single mother I achieved a bachelor's degree in 2007 and am now in a graduate program. I have worked three jobs while pursuing my education but am now loosing my home. The challenges have been many - the greatest one perhaps that I live a lifestyle that is not as I call it "MS friendly." I defy all the rules - I don't get enough sleep, rest and don't take care of my body and I can't allow this to catch up with my dealing with MS.


  • [3] Eileen from Sunnyside January 08, 2008 - 12:32PM

    My husband has Crohn's and is currently going through an episode. One of the difficulties is that although we have family and friends not everyone understands what we go through. I've been asked how is he feeling and when I say he is still not well the reply is usually really, he is still sick or has he been to the doctor? I tell people this may take a while and it isn't just something that will always be cured by going to the doctor. We also figure out who can handle him being sick and those who can't by seeing who calls or offers to help. There are those who want him to hurry up and get better but that does not help him get better since he will only put more pressure on hiumself and it is a vicious cycle.


  • [4] Amy from Manhattan January 08, 2008 - 12:36PM

    Leonard asked about how visible disabilities are viewed in other countries. I was in Spain in 1974, and I was surprised to see that people with amputations & other highly visible disabilities--some of them rather hard to look at--were on many street corners selling tickets for a lottery whose proceeds went to their support. It made me aware of how much less we saw people with similar disabilities in the US. More recently, the Americans with Disabilities Act has to some extent made those w/mobility problems more visible, simply because they're more able to get out where others can see them.


  • [5] david January 08, 2008 - 12:36PM

    Anyone who is looking for a great support group please check out Friends In Deed in Soho, for anyone with a life threatening illness and their caregivers. 212-925-2009. Every service is free. Drop in groups all week. www.friendsindeed.org


  • [6] Barbara Kalina from New Jersey January 08, 2008 - 01:00PM

    In dealing with a chronic illness, it is very discomforting to realize that one has no health insurance or cannot afford the medication to contain it. I was able however to get assistance and would like to share the resource that helped me get the necessary medicine.

    National Organization for Rare Disorders

    http://www.rarediseases.org/programs/medication

    This is not specific to MS only and tends to various conditions.

    Best regards.


  • [7] Eli Katz from Brooklyn, NY January 08, 2008 - 01:47PM

    In no way I mean to diminish or underestimate the pain, the suffering of the people with chronic illness and their quest to get well, but I often wonder if all the options of amelioration are explored prior to assuming that the pain and suffering are the norm and unavoidable. As a professional nutritionist, I have examined case studies of significant remission in a variety of chronic illnesses and in my own practice had much success in assisting people to greatly improve their lifestyle. Most practitioners of modern medicine are quick to assume that the illness or a condition is chronic, incurable and terminal, when the tools available in their protocol are exhausted. But the quest for life does NOT end there! The human organism is as complex and mysterious as it is powerful. And with the right approach anything is possible.

    www.fearlessnutrition.com


  • [8] Barbara Kalina from New Jersey January 08, 2008 - 02:19PM

    This is a partial response to Eli's comment.

    I believe very much in the power of the mind. Staying positive despite great challenges, be it pain or other factors, is a significant part of any treatment (traditional or alternative).

    While I would also like to explore getting help by incorporating a healthy nutrition, this equates with a more expensive lifestyle. As is the case with people living in poverty (and even those living on middle income) a better diet is not always very possible. The chronic lack of time (while pursuing positive goals) also prevents me from incorporating the better choices.

    Making healthier living more affordable would be the first step to make it possible for many.

    To living a healthy life!


This thread is closed.


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