How to Stay Active in the COPD Community While at Home
At this point in time, the vast majority of Americans are under some type of quarantine. Whether you’re young or old, healthy or not, it’s important to follow these guidelines because they will help prevent the spread of the novel coronavirus (COVID-19). In addition to these measures, it’s important to follow the updated instructions given to us by the World Health Organization (WHO), this includes:
- Washing your hands thoroughly and regularly throughout the day
- Avoid touching your face
- Maintain at least 6 feet of distance between you and the closest person
- Cough or sneeze into your arm or a Kleenex
Always stay home if you’re feeling sick
While it hasn’t been officially advised by the WHO, we’d also like to add face masks to this list. There’s been a lot of debate about whether or not medical or non-medical face masks are effective in preventing COVID-19, but the general consensus seems to be that using some type of face covering can be effective in preventing the spread of germs. However, people shouldn’t get a false sense of security from wearing a mask, because guidelines like social distancing are still very important.
If you remember from last week, we gave you a complete guide for dealing with COVID-19 if you’re a COPD patient and a guide for staying active while you’re at home. These are still great resources for anyone who’s stuck at home and wants to educate themselves on staying healthy. However, one issue we haven’t touched on yet is the way that COPD communities have been affected by the virus. Read on as we discuss more important information for COPD to know during these difficult times.
The Importance of COPD Communities
A COPD community is a place where people with COPD and other respiratory conditions can support each other and raise awareness for their illness. This could be a group that’s put together by a professional organization such as the COPD Foundation or the American Lung Association or it could be an independent event held by COPD advocates.
Fortunately, due to modern technology, it’s easier than ever to maintain COPD communities without actually meeting in person. It’s possible to maintain relationships with other patients entirely over the internet through things like discussion forums, video chat rooms, and more. The following are some of the reasons it’s so important to maintain these relationships even during quarantine.
COPD Advocacy Shouldn’t Stop During a Pandemic
Possibly one of the most important functions of COPD communities is to advocate for people struggling with health conditions. We discussed this topic in detail in a previous post, but we’ll provide you with a condensed version here for convenience. According to the Correlation European Harm Reduction Network, advocacy has four different functions:
- To help someone maintain control over their lives and promote their rights
- Promote inclusion of a wide spectrum of people and ensure that isolated individuals are able to get the help they need
- Empower people with the ability to speak for themselves and their own needs while speaking on behalf of others
- Provide people with an outlet to educate and better themselves and to clarify misunderstandings about their condition
Another important thing to note about advocacy is that it doesn’t just have to be done by people who actually have COPD. In order to have a wider reaching impact, advocacy should be embraced by friends, family, and loved ones in order to make a bigger impact on the community and the world. What’s more, advocacy isn’t something that should halt once a pandemic like COVID-19 starts. In order for advocacy to continue, COPD communities need to remain intact and stay as active as possible despite the circumstances.
Communities Are Often Therapeutic
Another reason COPD communities are important is because they are often therapeutic. Oftentimes, insecurities, anxieties, or otherwise negative thoughts that are brought on by chronic lung disease can be cured with simple human interaction. This is similar to how someone with a drug addiction or mental health condition may join a rehabilitation program in order to speak and interact with likeminded people.
Giving and Receiving Medical Advice
Managing a complex condition like chronic obstructive pulmonary disease can be challenging. Whether you need advice on the treatment plan that you’ve already been prescribed or you’re searching for alternative treatments for COPD, there’s nobody better to talk to than someone who has experienced the same symptoms. When you consult the COPD community for medical advice, you’re sure to receive loads of great advice from people who truly want to help and who understand what you’re going through.
At the end of the day, it’s just as important to give advice as it is to receive it. If you think back on all the experiences you’ve had coping with COPD, you can likely think of one or more pieces of advice you could provide the community with. Just make sure you’re not giving advice about something that you’ve never dealt with or have no experience with. When receiving advice, it’s also important to consult your doctor before making any major changes to your COPD treatment plan.
Online COPD Support Forums
An internet forum is a place where people can exchange information on a given topic through the internet. One of the great things about internet forums is that they often archive their information, so if you find something useful, you can refer back to it many months or even years after you found it. Simply bookmark it using your web browser and you can return to the page anytime you want.
Another reason to use online COPD support forums is that you can contribute as much or as little as you choose. Rather than having to commit to attending specific events, you can simply read through various forums and respond whenever you have the time. They also tend to be fairly active, so if you ask a question you should get a reply pretty quickly. Read below for a list of internet forums that all COPD patients should know about.
The COPD Foundation
The COPD Foundation is a nonprofit COPD advocacy group founded in 2004. Its mission is to help develop innovations that will improve the lives of COPD patients all across the world. Scientific research, education, and awareness are their primary means of accomplishing this, and they’ve developed their own approach to doing this called COPD360.
COPD360 is designed to enable partnerships between healthcare professionals, patients, caretakers, academic institutions, and researchers. By doing so, everyone will be better equipped to prevent COPD and treat it more effectively. One of the services the COPD Foundation offers specifically for COPD patients is called COPD360 Social. This platform aims to connect patients and educate them about their treatment options. It also provides a supportive environment for caretakers and family members who are looking to share stories, information, and advice.
The best part about signing up for a membership is that it’s entirely free and it will instantly connect you to thousands of other people around the world. All you will have to do is give them some basic information and then you can log in and start posting questions or reading through previous forums. One cool feature of this service is the badge system. The more someone answers questions in a helpful way and are upvoted, their experience will be displayed in their profile. This way, you’ll know if you’re receiving information from a well-respected member of the community or not.
The American Lung Association
The American Lung Association is one of the oldest and largest lung health advocacy groups. Their number one mission is to save lives by improving lung health and preventing lung disease. While they tend to focus on defeating lung cancer, they also champion clean air, and creating a tobacco-free future. Just recently, the American Lung Association announced a $25 million fund that will be used to award research grants for preventative research, vaccines, antivirals, and to help with future outbreak preparedness.
Similar to the COPD Foundation, The American Lung Foundation has a forum where you can ask and answer questions, communicate with other respiratory patients, and much more. Their forum is hosted through Inspire.com, a site designed to connect people with various health conditions across the world to provide support and medical advice. The great part about Inspire is that there’s a mobile application which will allow you to connect to the service no matter where you are in the world, as long as you have an internet connection.
Whether you’re a COPD patient or caretaker, COPD.net aims to empower, educate, and equip you with the tools you need to manage COPD symptoms and live a better life. They also offer featured articles written by prominent physicians, advocates, or other health experts. In general, COPD.net is a great resource for anyone who wants to learn about COPD from more than one perspective. Their blogs and articles will help you see your condition in a new light and also give you resources to cope with the mental and psychological effects more easily.
COPD.net’s Help Center is hosted by Health Union, a social media platform that was created to leverage technology in a way that enables people with chronic conditions to have more meaningful, productive, and impactful connections through the internet. You can get started by following the link to the COPD.net Help Center and reading through the instructions. You’ll learn a bit about the history of Health Union and its purpose. You’ll receive a weekly e-newsletter, surveys and research opportunities, and you’ll gain access to the Q&A tool.
Aside from organizations which run communities of COPD patients and caregivers, you can also find many different COPD communities through social media sites like Facebook, YouTube, or Twitter. The organizations listed above all have social media pages that you can follow and receive updates from, but you can also join independently run Facebook pages. To find a COPD group on Facebook, simply log in and click “groups” at the top of the page. Then you can search “COPD” and you should see a list of results. Find one that looks interesting then click “join group.” You may be required to answer several questions before being admitted into the group.
One of the best parts about using social media sites like Facebook to stay connected during the pandemic is that you’ll have a lot of free reign when it comes to how you interact with people. Facebook allows you to post photos, videos, and links which may not be allowed in other more heavily moderated forums. You can also join groups that are specific to your needs. So, for example, if you want to learn more about alternative treatments for COPD, you may be able to find a group that covers that specific topic. This way, it’s much easier to meet like minded people.
The downside to staying connected through social media groups is that you’ll have to be extra cautious about verifying the validity of the information you read. While moderates often try to prevent false information or spam from being posted in their groups, it’s unlikely that they will be able to stop everything from getting through. Facebook also has policies that makes it harder for potential spammers to enter groups, but that only goes so far. As a COPD patient or caregiver, it should be your top priority to verify everything you read with your doctor before actually applying it to your treatment program.
Call or Video Call a Friend
Sometimes, a “community” doesn’t necessarily mean a large group of people. In many cases, a small gathering of your closest friends is just enough to keep the conversation going. Fortunately, we’re lucky enough to live in a time when staying connected is easier than ever. Computer applications like Skype and Zoom have connected millions of people across the world during the COVID-19 pandemic and they can do the same for the COPD community. Here are a few helpful tips to get you started with video conferencing.
- Organize a group of people who will all be able to contribute and benefit from conversations about COPD and staying safe during the COVID-19 pandemic.
- Create a set time to meet each week. While most people are staying home, that doesn’t mean they aren’t busy. This will also help make sure everyone is able to participate.
- Have a set topic that you discuss each week. Although it’s great to freestyle and discuss things on the fly, it’s easier to cover more topics when you think them up beforehand.
- Last but certainly not least, don’t be afraid to add more people to the mix. It never hurts to hear the perspectives of other people like caretakers, health professionals, or researchers if they are able to make themselves available.
We’ve talked a lot in the past about telehealth technology and how it’s shaping the way we approach healthcare. The current situation with COVID-19 has truly revealed how important it is to focus on this concept moving forward. Just ten or twenty years ago, it would’ve been impossible to accomplish what doctors can today through telecommunications and other medical advancements.
Take Part in a Clinical Trial
As you can imagine, this is a very busy time for researchers all across the country. Everyone is wanting to learn more about COVID-19 and when we can expect to see a vaccination. But the truth is, this isn’t possible without many years of testing. Experts say it will take 12 to 18 months at the very least, but the more support researchers have, the smoother the process will go.
As a COPD patient, you have a unique opportunity that many people don’t have. According to The Lancet, a journal that reports on medical findings, well over 500 clinical trials have been registered at both international and national clinical trial registry sites as of April 21, 2020. And we’ll likely see more arise as we learn more about the novel coronavirus. On this site, you’ll find a very helpful updated list of all of the clinical trials currently underway for COVID-19. You can refine your search by “recruiting” and “not yet recruiting” as well as age range and a number of other factors. Simply click on one that interests you to find the details and contact information.
The thing about clinical trials is that they require the participation of people from all different demographics. This includes young people, old people, healthy people, and chronically ill people. While we already know that older people with chronic respiratory illness are more susceptible to COVID-19, ongoing trials will reveal what treatment methods are effective in combating the virus as well as how we can protect those who are most vulnerable. If you want to stay involved in the community in the following months and years, this would be a great way to do so!
With all that’s going on in the world today, especially pertaining to the coronavirus and its effects, it’s important that we stay connected and communicate openly. This is even more important for older adults with chronic conditions like COPD, lung cancer, and diabetes, because these people are at the greatest risk of not only contracting COVID-19, but suffering severe symptoms from it as well.
Maintaining COPD communities during the pandemic has a number of benefits. Advocacy requires a great deal of communication which can be used to make politicians and community leaders aware of COPD patients and their needs. What’s more, by maintaining open lines of communications, COPD patients may be able to limit the stress and anxiety that comes with spending so much time at home.