MPN Patient Café: Strategies for Coping Day-to-Day

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Topics include: Living Well and Patient Stories

In this MPN Patient Café segment, host Andrew Schorr asks others with MPNs what kinds of things they do in order to maintain optimal health, feel good and stay in control of their lives. Andrew is joined by three patient advocates living with MPNs: Alisa Rouse, Andi Malitz and David Denny. These patient advocates share their personal stories of keeping their lives on track while living with their MPN.

The MPN Patient Cafe is a Patient Empowerment Network program produced by Patient Power. We thank Incyte Corporation for their support.

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Transcript

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:

So we all can have a variety of health concerns. So, Alisa, not everything is connected to the PV. So how do you take care of yourself to be healthy? Can you do some exercise? What do you eat? Are there any alternative things you do? Mentally, how do you stay on track? How do you live well and take care of yourself? 

Alisa Rouse:        

One of the biggest things that I’ve found that helps me a lot is I do guided imagery. I actually started doing it at Mayo Clinic about six years ago. That helps me start the day with a positive attitude. Before I get out of bed, I can have something that is positive. But still, the morning times are really hard. I also have arthromyalgia, so then I have a hard time walking, because I get a lot of swelling in my feet and burning. So the guided imagery has really helped me a lot. It helps with pain, it helps keeping my attitude a little more positive 

When I start getting down, I can take 10 minutes to myself, and that’s something that’s made a big difference. I do yoga. I was involved—Dr. Mesa did a study with ASU using yoga to fight fatigue in MPNs, so I started doing that.

They have some programs online that are geared just for MPN patients. That helps with the fatigue. It helps just kind of keep me moving, because there are a lot of days when I don’t even get out of bed. I also—my diet, I’m very careful. 

When I was younger, that was something I couldn't do. And now that I’ve gotten older, I realize what a difference that makes. My diet basically consists—if I can’t cook it, I don’t eat it. So if I can’t walk into the store to buy the ingredients to make it, then I can’t eat it—no chemicals. I was getting really bad migraines from chemicals on top of the PV, so I was having daily migraines where I couldn't get out of bed. 

So cutting all that stuff out that’s unnecessary for my body. It works hard as it is; I don’t want it to work any harder than it has to. That’s been a big thing for me. 

Andrew Schorr:

Well said. Andi, what about you? What are things that you do just in your life to have you feel more in control? We’ve talked about the relationship you have with a good healthcare team. What else so that you feel you’re doing everything you can? 

Andi Malitz:       

Well, I do work out. I do some strength training. Unfortunately, I’m limited in some aerobic activity where I do impact because I have a torn Achilles tendon from another situation; nothing to do with ET. So I can ride the recumbent bike and whatnot. But staying connected, staying connected with my family, staying connected with my friends, trying to be as positive as possible.

In terms of diet, I have a long way to go. Unfortunately, I just love to eat, but I have significantly reduced my sodium intake just because I knew I would feel better. But I also recently just had a regular checkup with my internist and found out that my thyroid levels were really low. I had had some surgery a couple years ago, and so my fatigue that I was associating really with the ET was also being hampered by a low thyroid TSH thyroid test. 

So we’ve increased that medication, and that’s helping me feel better. So you know, it’s really—it’s a balancing act, especially if you’ve got other conditions. Like Alisa was saying, having to treat everything and just kind of, again, the whole picture.

Just getting enough sleep, laughing enough, you know, having enough quiet time; just a balance. It’s really about balance.

Andrew Schorr:                  

So, Dave, what about you? What are things that you do yourself to help you take control and go on with your life and feel good about things?

David Denny:     

I do things that I want to do. So if I want to go to a conference, I go. If I want to read a book, I read a book. I last year bought a motorcycle for myself, something I always thought I would want to do but considered the risk and didn’t do it. And so now I have that, and on a sunny afternoon I’ll go out for an hour and just ride on the back roads and enjoy myself.

I find that to be very soothing and a lot of fun. And you have to do things that are fun. Otherwise, you’re missing the opportunity that you do have.

Andrew Schorr:                  

What about having a routine? I’m going to talk about mine in a second, but do you have a routine that helps give order to your day?

David Denny:     

Yeah, I get up at 5:00 every morning, and I have an hour of exercise down in my exercise room where I do several different things but pretty much aerobic exercise. And then I come upstairs and do some reading, additional reading until my wife heads off for work, and then I have a quiet time of about an hour before I really get my day going. So that routine just keeps everything on track. I know what’s coming up. I know when I have an interview to plan for; things like that. 

Andrew Schorr:                  

Right. So just a couple comments from me. I have two dogs. One is an older dog, a black Lab, almost 15, Candy, and then a 7-year-old younger dog. So when I get up in the morning, they need me. My kids are grown; they’re out of the house. I don’t know if they need me sometimes. So walking the dogs for an hour in the morning, and feeding them, and then making myself breakfast and not being deluged with all the stuff you can see on the Internet but kind of easing into it; that’s really helped me a lot, you know? But to think outside myself. And so maybe I could otherwise be worried; gee, is my spleen larger? Or is the medicine still working?  And to get out of that.

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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Page last updated on July 19, 2017