Posted on April 06, 2020 |
This article was written by John Linnell. John is a COPD Patient diagnosed in 2005 and left the workforce in 2011. After being involved in an internet awareness film and sharing his story, John decided his efforts would be best spent doing advocacy work for the COPD community. John is a member of the Board of Directors for the US COPD Coalition and is a COPD Foundation State Captain for Wisconsin. He also serves on the Executive Board of Directors for EFFORTS (an international support group for COPD) as well as on the Governing Board for the COPD PPRN (Patient Powered Research Network) for PCORI.
Through the Eyes of Patients-Living with COPD During the COVID-19 Pandemic, is a new COPD Digest Blog Series that will feature guest authors from the community. You are not alone and we hope that by hearing how others are coping, the positive and the negative, you will gain knowledge, comfort and resolve that will help you move forward each day during these unprecedented times. If you are interested in sharing your story, in a future post, please email [email protected] and one of our team members will follow up with you as soon as possible.
As a COPD patient and patient advocate, the current COVID-19 pandemic brings to mind so many thoughts, tips for fellow patients, and yet hope for us all.
My initial thought, a few weeks ago, was “Well, welcome to my world”. The COPD patient has always had to be cautious and protect against respiratory infections. It’s how we live. Now, the entire world is having to. Then, I realized that this was an incredibly selfish thought. Why would I want to “welcome” anyone to this type of life? So, it became a moment of teaching and sharing! Here are some tips to help us get through this most unusual time – tips for all of us, not just those with respiratory issues such as COPD:
- Stay home – Just stay home whenever possible. I am finding it a good time to catch up on the many “to-do’s” that keep getting put on the back burner. It’s a great time to work on a hobby. For myself, I like to cook and have made a wonderful Chocolate Ganache Tart, a loaf of Amish Sweet Bread, a new recipe for Chicken Fettuccine Alfredo, and some Coconut Shrimp. It also was the perfect occasion to clean out the freezer (you do not want to know what all was found).
- Arrange in advance (now) for friends/family to be able to run errands for you should need be. This will get worse, and it may be unsafe to leave your home…period. While not wanting to put others at risk, it may be safe for them but not for you. Nonetheless, it is a conversation best had now and not later.
- When possible, order refills of medications you may be taking, especially inhaled medications. Pharmacies might be willing to refill a little time before the refill is technically due. (I say this with hope, not with foreknowledge.) Check on your levels of other needed supplies. Don’t buy the shelves bare but do have enough for a month or so. The supply chain is still working. Toilet paper is still being manufactured.
- Stay active!! You can still go for walks, take the dog out, get some fresh air. Do so only when not in densely populated areas and be sure to maintain distance from others that are hopefully outdoors doing the same. This “sheltering in place” should surely not be taken as a directive to just sit on the couch and watch every single rerun of I Love Lucy (although, I do love Lucy). This is especially directed at those of us with respiratory diseases. Inactivity is a slippery slope, indeed. “The Less We Do, The Less We Are Able to Do” No treadmill? Then walk in place if you can’t or shouldn’t go outside. There are also many online pulmonary exercise options that are currently being provided at no cost in order to help us through this!!
- Practice “physical distancing”. I personally do not like the phrase “social distancing”. We need to be social; we need each other now more than ever! We simply need to be physically apart……but we must be social to maintain our sanity. Be a friend! Maybe this is a good time to make a phone call to that old buddy or friend that you had been thinking about. Don’t text,,,call them!! Reconnect. Be social. You can take the lead and make this first step. I did, and it was so fun reconnecting and sharing memories.
- Consider practicing Mindful Awareness, meditation, yoga, or getting lost in a good book. Whether you like it or not, you certainly now have the time to do just that.
- Keep somewhat of a schedule, lest you get lost in the day and wind up accomplishing nothing. Have set mealtimes. Set aside times to read, meditate, or just relax. Hold yourself accountable for getting your daily goals accomplished so as not to fritter away the day. Even for those of us that already are homebound due to our COPD or other respiratory condition, this can be an awakening – Do we really make the best use of our time? For myself, I have learned a lot and changed my pattern. I get more done, yet I somehow seem to have more “me” time.
- Get and/or stay involved with peer support groups on social media. You need the ongoing support as well as the other members are needing you as well. They worry about you and welcome your participation. You count, so be present for them. One excellent group is the COPD Foundation’s COPD360Social
- Advocate!! You still have a voice, and now you certainly have the time. Write to your legislators, both local and Federal, asking for their support in: – asking CMS to waive formulary restrictions on inhaled medications; – ask CMS and Congress to allow at least a temporarily allowing RRTs (respiratory therapists) to be able to practice via telehealth, home visits, and relaxing the supervisory requirements under Plan B. (You can access the full request from the US COPD Coalition)
Mostly, take this health threat seriously. It is real, it is here, it is not ending quickly. Most importantly, don’t panic. We can get through this, but it will take all of us working together. Regardless of your political persuasion, let’s not be baited into arguments on Facebook or other social media platforms. Both sides of the aisle mean well. Urge them to work together. No arguments have ever been won on Facebook and they never will. Please trust only reliable online sources, not “something you heard”.
A note from John:
Maybe during these unusual times, we need to treat ourselves a little. Here is the recipe I discovered for Chocolate Ganache Tart that I mentioned in the article. Feel free to switch it up and use a graham cracker crust or a typical tart crust if desired. I thought using the nuts was a wonderful idea for those avoiding gluten, plus it is so easy. I am sending along a picture of my results. I hope you Enjoy!
Chocolate Ganache Tart – recipe adapted from Bon Appetit’s version
Lightly butter a 9” to 12” tart pan with a removable bottom. Cut a piece of parchment paper to fit and place in bottom.
- Melt 4 Tbsp of butter
- Take 2½ cups of nuts (I used a blend of walnuts and pecans) and pulse them in a food processor until very finely chopped.
- Add 6 Tbsp sugar and ¾ tsp salt and pulse until mixed in.
- As food processor is running, stream in the melted butter and blend until it clumps together somewhat and has a gritty texture.
- Place the nut mixture into the tart pan. Use fingers to evenly press into a firm crust going part way up the sides.
- Bake in a preheated 350 oven for 20 – 25 minutes or until golden brown. Let cool.
- Tip: Let cool to room temperature before filling the crust or the ganache may separate from the crust.
- Take 12 oz of bittersweet chocolate and finely chop. Place in a medium sized mixing bowl and set aside.
- Place 2 Cups of heavy cream into a small heavy bottomed saucepan and slowly bring to just a simmer over medium low heat. As soon as it begins to simmer around the edges, carefully pour over the chocolate and let sit for 4 to 5 minutes.
- While waiting, dice 6 Tbsp of butter into small pieces. Once the chocolate has been allowed to sit with the heated cream, add the butter to the chocolate and cream and blend with a rubber spatula until glossy.
- Pour into the prepared and cooled crust. After it chills for at least an hour, sprinkle between ½ and 1 tsp of salt flakes or kosher salt over the top. The saltiness pairs so well with the velvety smoothness of the chocolate.
- I find it kept well, which is good because this is extremely rich. A very thin slice with a dollop of whipped cream is all one needs. YUM!!
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