Posts

MPN Patient and Care Partner Tips for Utilizing Telemedicine

MPN Patient and Care Partner Tips for Utilizing Telemedicine from Patient Empowerment Network on Vimeo.

Myelofibrosis patient Summer Golden and care partner Jeff Bushnell have learned the ins and outs of telemedicine. Watch as they share some advantages of virtual visits, instances when in-person visits are used for MPN monitoring, and their tips for optimizing telemedicine visits.

See More From the MPN TelemEDucation Resource Center

Related Resource:


Transcript:

Jeff Bushnell:

We are very fortunate to live in San Diego here where there are major medical centers and research universities and so on, but a lot of people aren’t… and these MPNs are very, very rare diseases. And there are not a lot of doctors that specialize in them, so telemedicine will allow you to contact a specialist.

I know when we see the Summer’s doctor in-person, she does a physical exam specifically to check her spleen size, which is an important aspect of almost all of these MPNs and without the ability to do that the doctor is working all solely from blood counts.

Summer Golden:

It’s just like Zoom, it’ll never go away, and I do believe telemedicine will be here forever, another technical advantage.

Jeff Bushnell:

I think, especially after COVID, people are more used to telemedicine, and in the MPN community anyway, because of the lack of large numbers of doctors that know much about it, like telemedicine will open up sort of a new, a new type of being able to treat MPNs, just because more people will be able to contact specialists.

Summer Golden:

A top tip I think, it’s sort of logical, but is to have the questions and issues written out because it’s a limited matter of time and to specifically jot down the answers.

Jeff Bushnell:

Another tip would be to ensure that you have the appropriate stuff on whatever device you’re using to talk to the doctor on. We’ve used about three or four different apps as it were on our phone to communicate with different doctors, and you need to make sure that that works ahead of time. Usually, the way they do it is they set up the appointment, they contact you ahead of time, and make sure that it’s going to work before they put the doctor online. But that’s very important that you have the technical ability to ensure that your equipment can support telemedicine. They’re making it pretty easy, but you still have to do it.

Recording of Summer Golden’s Comedy Show Fundraiser

Recording of Summer Golden’s Comedy Show Fundraiser for the Patient Empowerment Network – April 24, 2021 from Patient Empowerment Network on Vimeo.

On April 24, 2021 Summer Golden and Jeff Bushnell—beloved PEN Managers—hosted a virtual comedy show to benefit the Patient Empowerment Network featuring comedians who have journeyed through cancer. In order of appearance: Summer Golden, Laura Hiltz, Josie Leavitt, Kat McCoy, Karin Tausan, and Mickey Zeichick.

MPN Patient and Caregiver Explain How Colors Impact Their Lives

MPN Patient and Caregiver Explain How Colors Impact Their Lives from Patient Empowerment Network on Vimeo.

Are you conscious of the colors in your home? MPN Network Manager Summer and her care partner Jeff have their respective homes filled with colors that bring them joy. They prioritize mindfulness and positivity as part of Summer’s healthcare journey.

Jeff challenges you to surround yourself with colors that put your mind and body at ease.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Patient Advocates Turned Award-Winning Network Managers

The Patient Empowerment Network (PEN) is rolling out the red carpet to congratulate and celebrate two of our dedicated and passionate Network Managers, who are being recognized as outstanding patient advocates. Their enthusiasm for helping other patients navigate their cancer journeys exemplifies PEN’s mission of ensuring all patients have the resources they need to access the best possible healthcare and achieve the best possible health outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

Summer Golden, recognized for her advocacy through the PEN Network Manager program, has been named a Voice of MPN 2020 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Summer, who lives with myelofibrosis (MF), understands the MPN journey and has helped thousands of patients through the Network Manager Program. She, and her husband, Jeff Bushnell, who became her care partner when she was diagnosed, reach out to patients in the MPN community through e-newsletters, program development, and support groups. Summer makes connections with others through compassion and humor. Yes, humor. She says, “Everyone deals with this diagnosis differently, so whether it’s through education, support, or in my case, comedy, it’s important to face your disease head on and know you are more than a diagnosis.”

Jeff/Summer 2020 MPN Hero Red Carpet Debut from Patient Empowerment Network on Vimeo.

 Dr. Gerri Smoluk was a PEN Acute Myeloid Leukemia (AML) Network Manager and was recently named a finalist for the Reuters Patient Champion Award in the Patient Advocate category. Gerri was a drug development scientist and patient advocate who was diagnosed with AML in 2016. She made it her mission to help patients ask the right questions of their care teams. She used her knowledge to help patients learn about medications for and the latest information about their disease. Using her science background, Gerri developed tangible resources to help other AML patients. She felt she had an advantage and made it her mission to use that advantage to help empower others to make better decisions. Gerri passed away July 27, 2020. Her legacy lives on inspiring other Network Managers to help more patients become empowered.

Gerri Smoluk – PEN AML Network Manager from Patient Empowerment Network on Vimeo.

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the country. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Find out how you can get involved here.

An MPN Care Partner Shares Why He’s Optimistic About the Future

An MPN Care Partner Shares Why He’s Optimistic About the Future from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell, husband of myelofibrosis (MF) patient advocate Summer Golden, explains why he’s hopeful about their future together. Jeff shares key resources that have helped him stay educated and maintain optimism.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

See More From the The Path to MPN Empowerment

Related Programs:

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

Newly Diagnosed with an MPN? Start Here.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

Transcript:

Jeff:

It’s important to educate yourself because the more you know the less fear can overcome you. And this particular disease – the research is happening so fast, and things are changing. In my estimation, they’ll find – right now, the only cure is a stem cell transplant. It’s normally not done for older people. That in itself is innately risky. I’m convinced, probably within the next five to seven years, there will be a cure for this disease that’s not a stem cell transplant.

The research is moving that quickly on it. And if you don’t follow the disease and the people that are working on it, the specialists, you’re gonna have a much greater chance of feeling powerless and getting overwhelmed by it. As Summer believes, attitude can have a huge, huge impact on how the course of your disease runs. And a doctor would tell you the same thing.

For me, it started with Patient Power. Patientpower.info, I believe is, what it is. They have a whole section for myeloproliferative neoplasms and myelofibrosis, and they’re short videos. And you get a chance to listen to the best doctors that are the head people in this, Dr. Mesa, Dr. V [Verstovsek], and Dr. Jamieson – all the people that are really the movers and shakers. They speak. And you also get a chance to hear other patient’s stories and how they’re dealing with it. And that will give you a much better idea of what you’re facing. And you can really understand things from there. And you can get your knowledge.

Fear comes from lack of knowledge. In my job as a pilot, I flew for 50 years. I very, very rarely was afraid because my knowledge was so great and was reinforced every year by continual training that I felt prepared to handle anything that might come across to me. Knowledge is really important. It will allay your fears dramatically.

When I started online and heard about people that had been journeying with this for 10 or 15 years, initially, I had thought – well, this is a year or two, and it’ll be the end. And then I realized, plenty of people have lived with this for a long, long time. And they had a journey, and they’re doing it successfully. And that gave me confidence.

The more people you can talk to about it, the more you can put your journey in perspective. And it’s really hard to put in perspective for this particular disease because it affects everybody vastly differently. Some cancers – the progression is very, very linear. Everybody kind of goes through the same thing. This one – it depends on the mutations you have in your blood and all kinds of things like that, and some people get really bad symptoms quickly.

Others, they don’t. But the more you know about how those things affect you, the more you know and can understand about what to expect. And the more people you talk to who have it, you can find out about their journeys. It helps put yours in perspective.

I’m optimistic because I really keep up to date on what’s going on. And I see the doctors that are in the forefront of this and the research that they’re putting in and the care they have for working on this disease and the knowledge they have, and I just am quite optimistic. And as I say, I’m following the medical developments extremely closely.

I went to the ASH Conference last year. And I’ve gone to another conference that our doctor spoke at. And I’m just kinda blown away by – I’m fascinated by the science.

My advice would be find out as much as you can about it and support each other in a way that works in your own marriage.

Summer and I approach life a little bit differently. And yet, one of the reasons we do so well together is we kinda have both ends of the spectrum covered. And I sensed that when I met her 20 years ago. And we brought something to the table that each of us needed. And if you can find that in your relationship with your significant other that has the disease, what you can bring to it, what they can bring to it, you can be a tremendous support for each other.

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis

A Care Partner’s Journey: How Life Goes on After an MPN Diagnosis from Patient Empowerment Network on Vimeo.

Care partner Jeff Bushnell shares how he and his wife, patient advocate Summer Golden, have dealt with her myelofibrosis (MF) diagnosis. Jeff explains how online support and finding an MPN specialist were essential steps in helping them continue to live life to the fullest.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

 

See More From the The Path to MPN Empowerment

Related Programs:

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN Related Anxiety

Transcript:

Jeff:

The worst part was initially. We didn’t get a myelofibrosis diagnosis.

It took about a month because in order to definitively diagnose it they have to take a bone marrow sample and send it to a pathologist and so on and so forth. So, all that time, I’m worrying about the possibilities. It could be leukemia or this, that, or the other thing. My way of handling and dealing with scariness – I’m a retired pilot – is to find out things, knowledge.

I spent a huge amount of time on the internet. The LLS Society has papers about it, and I read those.

And the more I got into it – once we found out it was myelofibrosis, I’ve read almost all of the papers that the doctors write for each other to find about this. That doesn’t interest Summer in the slightest. It interests me greatly. So, when we have an appointment with the doctor – when I’m talking to the doctor, it’s like two doctors talking to each other.

When Summer’s talking to her, they talk on a different plane. It’s much more about mental approach to things and that kind of thing.

And for me, when I think back to the beginning of when we had this and where we are now two years later, we’re living the life that we lived before she was diagnosed to be real honest with you.

We do everything that we did before she was diagnosed the same way we did it before, and it was a trip that probably everybody who gets diagnosed or deals with a person that has the disease takes. When it first happened, it hit us like bricks coming out of the sky hitting us on the face. Literally, when we first went to the hospital and she got the word that there was a problem – as I say, we lived in two separate houses – I literally was afraid to call her phone figuring she might be not there. I was that scared. And then, after we met our doctor, which was extremely fortuitous – when we went to the emergency room, the person that was there, she said these look like leukemia things.

So, she called the oncologist. The oncologist on call is our current doctor, Dr. Tiffany Tanaka, and she’s a specialist in this disease. It was like it was meant to be. And Dr. Tanaka asked the guy to do some other tests and then said, “Send her home, but tell her I need to see her this week.” So, we’re thinking all these horrible things. And its New Year’s weekend, so the clinic is closed for about five days, you know? We’re worrying and worrying and worrying.

We finally saw Dr. Tanaka, and it was like a breath of fresh air. This wonderful doctor has the ability to just communicate with the patients. I’m interested in the disease, so she communicated on my level. Summer is not interested in all the medical jargon, so she was able to explain to Summer what was going on and just very, very reassuring, very reassuring.

And then, I went and started getting information. That’s my way of coping with things. The first place I went was – I went to Patient Power and found a lot of information there.

And then I found the online myelofibrosis support group at Facebook. And that was very, very useful. When I started reading about the fact that some people had this for many, many years – then I said this is not – nothing’s gonna happen in the next year or two. We can go back to living. And once we learned more about it and spent more time with our doctor and Summer was able to live her life once she got taking the medicine – she takes Jakafi.

That controlled the basic symptoms, and we haven’t looked back. We just started living our life the way we had been living it before.

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs

Is Laughter Really the Best Medicine? One Woman’s Mission to Help Others with MPNs from Patient Empowerment Network on Vimeo.

Could laugher really be the best medicine? Patient advocate Summer Golden explains how she uses comedy to cope with her myelofibrosis (MF) diagnosis and shares her mission to inspire others.

Summer Golden and Jeff Bushnell have been married for over 20 years. When Summer was diagnosed with myelofibrosis (MF), Jeff took on the role of care partner and advocate. Summer uses her years of theatre training and comedy to cope with her condition and help others, while maintaining positivity about the future.

See More From the The Path to MPN Empowerment

Related Programs:

Can Diet and Exercise Reduce MPN Symptoms

Am I Meditating Correctly? Getting the Most Out of Mindfulness

Expert Tips for Managing MPN Related Anxiety


Transcript:

Summer:

When I was initially diagnosed after some other false starts with an MPN, I was kind of shocked because I’ve never really been sick, and I don’t take medications, but I didn’t think about it – that sounds crazy; I can’t explain it. I just figured I’d be okay, and the main thing – I didn’t wanna give up this theater.

You know how when you’re my age, people talk about nothing but their illness sometimes? I just never been into that, so it wasn’t part of my personality.

I started doing comedy two years ago because a friend of mine was taking a comedy class, and I went to her showcase, and I thought, “I should try that, even though I’ll never be funny, I have no jokes, and I don’t know what I would say.” But, I went, and I did comedy in clubs for a while, and then I didn’t – I don’t really like drinking and dirty jokes, so I kind of got away from it off and on, and then, when I got into doing it about my myelofibrosis, then I saw a purpose in it, so I went back to it.

I was thinking about whether my life was gonna be changed, how this was gonna change me, so I emailed my comedy teacher in the middle of the night, and I said, “Do comedians ever talk about cancer, having it?” And, he said, “Only if they have it.” So, I emailed him back and I said, “I’m coming back to your class,” so I did. He assigned everyone to be in a showcase. I was gonna do mine about cancer. It was six weeks, so I had to find humor. I don’t know how I find it. I just kind of see things.

I was shocked because I thought people were gonna hate it, and I was gonna quit, and then I’d invited my doctor and two friends, so I thought I’d better not just not show up. But, people came up and said they were inspired. I was just amazed because I mainly –I don’t go out of my way to think of – I do think of things that are funny, but it’s just – it’s a real thing. I try to keep my comedy real.

It’s helped me by being in control. I don’t pay much attention to the symptoms because I’m kind of over them.

Just helped me feel like I’m doing what I can do, and so far, it seems to be working, as long as I get enough sleep.

How do I think comedy could help other people who have health problems? I can tell you one way I thought to help somebody. I wanna start a class for people, but so far, there hasn’t been a lot of interest, but I think I could really help people doing that because I know how to write comedy.

If they really wanna do that, they would be a type of person that has humor, and they could do it, but you’ve gotta realize sometimes, people get a lot out of being sick. There are a lot of rewards, and so, they might prefer to have those rewards. For my way of thinking, if they wanna do humor, it’ll make a big difference, and if somebody wants to do it, they could call me, and I’ll help them.