Valuable Resources for People Living With COPD
In the early days of being diagnosed with COPD, it's important to get the right information. While your doctor can get you started, time constraints in a consultation can mean it’s a lot to absorb.
There are plenty of ways to become educated about COPD – it's up to you what avenue to take. Be open-minded to what fellow patients tell you and if something doesn't sound right, then either ask your doctor or research it yourself.
In this day and age there is really no reason to be uninformed about COPD. This is a small sample of the blogs, websites, books and other resources I've had experience with, but there are many more out there. Take the time to try them all and you'll more than likely find one that suits you.
COPD in Focus
Created by Vanessa Smith, COPD in Focus is a wealth of information about COPD. Vanessa is a COPD activist and patient and her knowledge and determination with all things COPD is amazing. If there is a new medical breakthrough, Vanessa is all over it. This lady is also a determined exerciser and can be found walking around the trails of Cornwall in Australia.
Derek Cummings – Living with COPD
Derek was diagnosed with COPD in 1987 and has been blogging for many years, so you can imagine there's a lot to read. His blog is an encyclopedia of COPD and well worth a look, as this man has a wealth of experience as a patient.
Of course, I'm going to recommend my own blog – a work in progress. COPD Athlete is designed to inspire and motivate people with COPD to make positive change to their lives through exercise. In the future, it will feature online training programs, exercise video blogs and healthy food options.
To be honest, I'm not an avid reader of books, so the books I'm going to list are ones that I've had referred to me as excellent books.
The Complete Guide to Understanding and Living with COPD: From A COPDer's Perspective, R.D. Martin
While this book was published in 2010 and may be missing some recent developments, it was written by a COPD patient so the information is a real life account of a patient’s journey and written in a way so you can relate.
Live Your Life with COPD: 52 Weeks of Health, Happiness and Hope, Jane M. Martin, BA, LRT, CRT
Jane has many years’ experience in the treatment of COPD patients and has a passion for positive patient outcomes. This book, an insight into better living with COPD, is an invaluable tool for everyday living and is a testament to many years of dedicated care. Janes works with the COPD Foundation and is readily available to answer patients question via the COPD Foundation’s 360 Social website.
COPD - New Life Outlook
While I obviously write for COPD - New Life Outlook, I wouldn't if I didn't have a high regard for its content. There’s a lot to like, from breaking news articles to patients, family and carers networking with each other and sharing their experiences.
The Facebook page generates some good discussion and has helped people deal with their disease. I have found people who interact on this site to be compassionate and genuinely interested in helping each other. The site is building a great COPD community environment.
This is another site with plenty of information for patients. Healthline is a general health site and not COPD specific, however there is a lot of great articles on COPD as well as some healthy diet tips. Their Facebook page has COPD patients asking questions every day, which provokes some great advice from fellow patients, but can unfortunately generate some negative responses that for newly diagnosed patients could be quite daunting.
COPD Foundation (USA)
This is a multipurpose site that has many different arms, from its impressive learning resources to its social site, COPD Foundation 360, which connects patients, carers and experts to share their knowledge. The site raises money and promotes patients to become advocates to help raise awareness and educate. The COPD Foundation's charter is to improve the lives of people with COPD and help with research to one day find a cure.
There’s a lot of information on the Pulmonary Wellness site, including video presentations that are generally easy to understand. It's probably not a site I'd recommend as your first point of call, as all the information can be quite daunting when you're just trying to figure out where to start. However, once you have a good grasp on your disease it can be a valuable resource. The site conducts regular interactive webinars which can be a great support, especially for people in remote areas or who are housebound.
Sensitive Choice (Australia)
While this is not a COPD-specific website and deals with asthma and allergy aware products, it's worth a look for the fact that it offers something that others don't.
Sensitive Choice has a system where manufacturers and service providers can apply to have the Sensitive Choice logo on their products and services deemed asthma and allergy aware. Many of us with COPD have allergy triggers, so being able to purchase products that take this into account is a bonus.
If what I've mentioned so far hasn't sparked your interest, then maybe it's time to look up your Country's Lung Association for community resources like the American Lung Association’ Better Breathers Clubs.
Lung Associations/Foundations in many countries have similar support groups whose role is to provide education to patients so they can lead the best quality of life possible. They can have presentations on topics such as diet, exercise, medications, breathing techniques, questions to ask your doctor, lung function tests and much more.