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How Can I Live With and Not for Myeloma?

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Published on February 7, 2018

How do small, daily choices effect the big picture on your treatment journey? Myeloma survivor and patient advocate Danny Parker of MultipleMyelomaBlog.com explains how developing healthier habits can improve your overall quality of life with myeloma. He also shares what actions he believes patients can derive pleasure from, and how to live “with” myeloma, and not “for” myeloma. Watch now to uncover ways to take back control and live well with your condition.

The Living Well with Myeloma series is a Patient Empowerment Network Program produced by Patient Power. We thank Celgene, Takeda, Amgen and AbbVie for their support.

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Transcript | How Can I Live With and Not for Myeloma?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

You like to cook, you also meditate, you also counsel other people. These are kind of pillars for you, aren’t they?

Danny Parker:   

Right. So, you wanna look at seeing to develop habits in your life, that are going to be helpful to you. And, you know, dealing with a disease, so that’s creating—kind of throwing some potholes in your path, in terms of exactly how this is going. Because we’re doing treatments, and so forth, but it’s so—I think our habits become ever more important, in terms of having that ability, to have that quiet morning tea, or cup of coffee. And then, also, maybe to change some things. For instance, one of the things that I counsel patients about, that have myeloma, especially if they’re newly diagnosed is, a lot of them will be like me.

They wanna study the disease and find out all about it. That’s great and fine. Don’t do that after dark. Or I don’t recommend doing that at night, because you’re going to go to sleep eventually. It’s a good idea to go to sleep without kappa light chains interrupting your dreams, or something like that. So, I really feel, for me—at least, this works, that I don’t go with a disease during the evening hours. And, I like to tell people, I’m living with myeloma, I’m not living for myeloma. So even though I’m very dedicated to trying to help other patients, I have my own life, and I have my kids’ life, and my wife’s life, to consider. And so, the issue is, as Laurie was saying. We wanna improve the quality of our lives, to have a good life, to have a life worth living.

And that includes not only taking care of ourself, with this disease, but also, taking care of others. And, another hint, a clue I want to give to people, if you’re feeling discouraged. I know, when I feel discouraged sometimes, one of the things I can tell you, that’ll help almost everyone feel better, if you’re feeling discouraged, is to help someone else. So to just find something or somebody that needs some help, and then it could even be cleaning something or fixing something—something small. It doesn’t have to be something big. But, do that. There’s this immense pleasure, and satisfaction, that comes of doing that activity, even when you’re wounded yourself.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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