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Setting the Standard

I like to think of myself as not only a patient advocate but a patient obsessed with implementing the gold standard of COPD management. It’s a little like the saying talk the talk…walk the walk. In my mind, this makes me accountable for what I say and do.

COPD management

As patients, we need to take ownership of our disease and how we manage it. This is a belief that is close to my heart. You will often hear me talk about MY COPD. Saying it’s MY COPD gives me ownership and makes me responsible for how I manage my disease.

Managing COPD should always be a collaboration between a patient and their doctor. Incorporating not only your day to day management of COPD but a COPD action plan for when your symptoms flare up. While some patients may initially find it difficult to take charge of their disease, those who do will overwhelmingly achieve a better quality of life.

For some of you, this message is a familiar one, and you are already managing your disease well. But for others, especially those who are newly diagnosed, this may all be quite foreign. Unfortunately, in an age of health systems under pressure, doctors don’t always have a chance to discuss management strategies with newly diagnosed COPD patients.

If you are a patient without a disease management plan, don’t fear, it’s never too late to start. Make an appointment with your doctor to discuss the ongoing management of your COPD. In the meantime, you can start to put things in place by learning more about your disease.

Knowledge

Knowledge is the most important part of managing COPD for me. The more knowledge you can obtain about your disease the better equipped you’ll be to manage it properly. COPD is like anything else in life. The more you know about it, the better you are at dealing with it.

My journey with COPD has not always been smooth sailing. Like many patients, I have experienced some nasty exacerbations and periods of poor health. The one experience which led me to believe how important lifestyle factors are when managing COPD was when I stopped managing my disease.

Too much rest

After my first Ironman event, my doctor and I agreed that my body needed to rest and recover. Over the course of three months, I rested my body, which meant that I hardly exercised. I also let my diet slip as I was in a recovery mindset, which I mistakenly thought meant to drop everything that I had been doing previously.

After three months, I returned to my doctor in poor health. I had gained weight and had become very breathless. My doctor and I both agreed that I had taken the whole resting my body way too far. It was time to get back to what I knew worked. I remember my doctor saying, “time for another Ironman”.

Talk the talk, walk the walk

I haven’t made the same mistake again, and regardless of whether I’m training for an event or not, I live by my four pillars – knowledge, medication, nutrition and exercise. I will always talk the talk, as I believe that the way I manage my disease is the Gold Standard for me. My actions will always show that I also walk the walk!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Janet Plank moderator
    11 months ago

    This is the fascinating part of our journey, we each come in different stages and have different abilities. I cherish where every person is at, because hopefully there is a lot of living to do. Thankfully no one has an expiration date.
    I’m so sorry that you found this article depressing. Russell has his struggles as well. Knowing I struggle, makes me appreciate others abilities.
    Some things I read affect me in different ways, I have learned to take what I can use and to throw the rest away, meaning ignore it.
    Thank you for sharing!
    Janet (site moderator)

  • Janet Plank moderator
    11 months ago

    This is a response to Barons comments…

  • Barbara Moore moderator
    11 months ago

    It will make your road much harder if we compare ourselves to others. You may not do an ironman or your ironman may be a walk around the block.
    Only compete with yourself.
    Barbara Moore (site moderator)

  • Baron
    11 months ago

    I must say I find it extremely difficult to connect with people who say they suffer from COPD and yet do regular Ironman runs? I’m really sorry but I find this depressing – me who cannot walk 6 paces. Perhaps there should be seperate sections of these forums for people of different abilitites. Personally, I feel very depressed about reading the ‘difficulties’ of someone that can run, swim & bike ANY distances. I wish.

  • Lyn Harper, RRT moderator
    11 months ago

    HI Baron – I certainnly understand where you’re coming from. It was by no means meant to depress you.

    You’ll notice the author of the article admitted that his journey with COPD has “not always been smooth sailing”. He has suffered his share of exacerbations and times of being unable to do anything. However, he’s also been able to manage it, with the help of his doctor, to the point of participating in events such as the Ironman.

    I think it gives hope, that while you may never get to the point of an Ironman event, you may get to walking around the block without shortness of breath. Accomplishments are all relative, aren’t they? Some people with COPD can swin laps while others are happy if they can do arm lifts in their chair.

    I think the take-away is each of us is at a different place and stage. Our abilities and achievements are very personal. We can each take pride in our daily triumphs, however small they might be.

    Regards,
    Lyn (site moderator)

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