Though the Self-Advocacy Special Education Week at PF NOW! is coming to an end, our advocacy for people with PF will continue for years to come. To conclude this Special Education Week, we interviewed a renowned advocate for people with PF: Dr. Noah Greenspan. Keep reading to see the highlights of our discussion, or click here to read the full transcript.
Introducing Dr. Greenspan:
Dr. Greenspan (PT, DPT, CCS, EMT-B) is a cardio-pulmonary physical therapist based in New York. He started treating patients with PF in 1995 and founded the Pulmonary Wellness & Rehabilitation Center in Manhattan a few years later. With a specialty in helping patients with pulmonary, cardiovascular, and complex medical conditions, his team has conducted over 100,000 exercise sessions!
Dr. Greenspan is also the founder of the Pulmonary Wellness Foundation, a comprehensive pulmonary wellness hub that supports people with respiratory diseases. Resources there include:
- His book Ultimate Pulmonary Wellness, which is available for free in English and Spanish
- His online pulmonary wellness program or “bootcamp” here
- His webinars on pulmonary wellness, medications, exercise, nutrition, and more
- His lectures, live talks, podcasts, Facebook group, movie, and more!
Interview Highlight #1:
Over the years, Dr. Greenspan has successfully developed pulmonary rehab programs specifically for people with PF and other pulmonary conditions. While sharing the details of his unique approach, he said:
When people are diagnosed with a chronic illness… especially one that affects so many areas of your life… they often become these black-and-white, monochromatic versions of their former selves that are completely devoid of any type of art, music, fashion, style. Anything like that. Their lives become about going to the doctor, get the prescription, pick up the prescription, take the medication, eat their dinner, go to sleep, get up and do it the next day. That’s not the philosophy that I take. We don’t live to rehab or to take care of our disease – rather, we rehab to live our lives…
I like to call it “Malcolm X Physical Therapy” – which is like, “By any means necessary.” And whatever that takes. Sometimes we have to have 2 or 3 people working with 1 patient just to make sure they don’t fall down. But that’s what it takes. It’s prepared us very well because my specialties are cardiovascular disease, respiratory disease, and complex medical conditions (so patients either with very complex cardiopulmonary conditions or multiple medical conditions). Essentially the people who have been told, “You know I tried everything and nothing works.” That’s often when I get them. What a lot of people consider to be the end of the line is what my team considers to be the starting line.
Interview Highlight #2:
Dr. Greenspan discussed the most common myths about PF, the ways people can educate themselves on the truths, and the importance of advocating for the right diagnosis and care. He said:
It’s really crucial that people get the right diagnosis; that’s first and foremost. As we know, some of the medications for some of the interstitial lung diseases are 1) not only not helpful but 2) are also detrimental to other interstitial lung diseases. That’s really important for patients to get educated on, and to not believe everything that they see on the internet…
It’s challenging with PF and interstitial lung disease, because it’s a scary disease. On so many levels. People are told you have 3-5 years to live, but that was data from before there were any treatments. There’s only a couple treatments now, and some of the treatments make people feel bad; they’re not comfortable, and they have a lot of side effects…
That’s where all of the lifestyle issues come in. Where things like exercise, nutrition, managing your stress/anxiety/depression, and managing the prevention of infection. Those things right there are the basis of my book Ultimate Pulmonary Wellness. It’s the basic philosophy of my care. Everybody wants a quick fix. Everybody wants the magic pill, or the powder, or whatever it is that will take care of things immediately. And it’s not really like that. It’s not like there is a pill, for most things. But these basics are the ones that we’ve found to be the most effective.
Interview Highlight #3:
Dr. Greenspan discussed the programs he’s created to support people with PF and interstitial lung diseases. When explaining his online pulmonary rehab program (or “bootcamp”), he said:
Bootcamp is an online pulmonary rehab program. Only about 2 percent of people who need rehab actually have access to rehab, and it’s even less depending upon where you live. I live in New York City, and it’s even hard to find rehab here. So if you’re in a small town, getting a diagnosis is often difficult, getting the right care is difficult, and getting rehab is difficult. So we created this program…
He then played a video clip of his bootcamp. It included motivations and inspirational sayings, such as:
The best time to plant a tree is 20 years ago. The second best time is today.
It is ok to not be strong all the time, to not be happy all the time, to be weak at times. We all have those moments. It’s not honoring our weakness – it’s honoring our humanity.
Interview Highlight #4:
Dr. Greenspan discussed the ways that friends, family, and caregivers can advocate for people with PF. He noted that it depends on the person, but shared this advice:
There’s very few things you can do to a patient that are worse than taking away their hope. That happens a lot of times, where you hear, “Oh I have 3-5 years since the onset of symptoms, but I’ve been trying to get a diagnosis for 2.5 years. Does that mean I have 2.5 years left?” I hate when I hear somebody tell somebody else how long they have to live.
To conclude, he said:
I try to keep people’s minds off their disease. You have to know something about it, to understand how to take care of yourself and plants the seeds for a fertile garden… but who wants to think about their disease all day and every day? Unfortunately that’s what winds up happening… I try to just keep people focused on who they are, and to remind them that they are not their disease. And to encourage them to refind, rediscover, or reinvent the things that make them uniquely who they are.
Interview Highlight #5:
After the interview about advocacy for people with PF, Dr. Greenspan & staff at PF NOW! discussed additional advocacy efforts – namely ways to help people who are experiencing symptoms from COVID-19 long haul or “post COVID condition.”
Dr. Greenspan’s movie about COVID-19 long haul premiered last week at www.longhaul.movie, and our research on the topic was recently published here. Please join the community conversation to learn more, and comment below if you have any questions!
If you liked these highlights, be sure to read the complete interview with Dr. Greenspan here.