During this time of uncertainty, we want you to know you are very much in our thoughts. Many of you already feel isolated, and now it is even harder to get out, or for others to visit. The fragile webs of support you’ve built to help you get by are being shredded. We care about what’s happening and are doing everything we can to help and strengthen the bonds of community. Together, we will get through this turbulent time.
On Thursdays, at 1:00 pm ET, we are hosting our “Sequester Camp” webinar series, which will run every week at the same time for as long as it’s needed. Anyone can join from anywhere for free. We’ll be sharing information, resources, and social support.
The World Health Organization's Q&A on coronaviruses is an excellent information source. Additional Covid-19 news updates of interest are included below:
- Wuhan Data Link COVID-19 With Damage to Heart Muscles. In this case series study of 187 patients with COVID-19, 27.8% of patients had myocardial injury, which resulted in cardiac dysfunction and arrhythmias. Myocardial injury has a significant association with fatal outcome of COVID-19, while the prognosis of patients with underlying CVD but without myocardial injury were relatively favorable. (JAMA)
- According the Centers for Disease Control, no drug has yet been shown in a randomized clinical trial to be effective in treating covid-19. Several drugs that are on the market for other indications are currently in trials. Do not self-medicate as these drugs can have serious side-effects. Consult your doctor. (CDC website).
- A Phoenix-area man is dead and his wife is under critical care after the two took chloroquine phosphate in an apparent attempt to self-medicate for the novel coronavirus, according to hospital system Banner Health. It does not appear they took the pharmaceutical version of the drug, but rather "an additive commonly used at aquariums to clean fish tanks," Banner Health said in a statement. (CNN).
- Experts say there’s no clear evidence that ibuprofen makes COVID-19 worse. (Healthline).
- A report in the American Journal of Gastroenterology says around half of covid-19 cases in China presented with GI symptoms (diarrhea). So if you have GI symptoms along with other symptoms (dry cough, impaired breathing, fever), don't rule out covid-19.
- Lost Sense of Smell May Be Peculiar Clue to Coronavirus Infection. But evidence is preliminary. (NY Times).
- SCAM WARNING: Scammers are targeting people with emails and telemarketing calls offering #coronavirus tests, masks and other items in exchange for Medicare numbers. DON'T FALL FOR IT! (WBZ News).
This Johns Hopkins site tracks global COVID-19 statistics.
CovidActNow provides state-by-state models of project numbers of cases.
- Health information about COVID-19 and FSHD.
- Medic Alert card.
- Watch the video (right) on safely bringing groceries and take-out food into your home.
- Virtual chapter meetings, open to all! Check the Events Calendar.
- Weekly FSHD Radio call-in show on Facebook Live, starting Wednesday March 25 at 9PM ET | 8PM CT | 7PM MT | 6PM PT.
- Connect with your neighbors via https://nextdoor.com/.
- Please contact us if we can be of assistance!
March 26 webinar - How to connect. How to help.
Our panelists this week are Amy Bekier and Cyndi Segroves, two creative and resourceful women with decades of experience living with FSHD. They will share tips, and they want to hear your ideas too!
- What are you doing to cope with stress?
- What worries you the most?
- How are you getting your supplies?
- What do you do to keep busy?
- How are you staying connected?
- What do you do that might help others?
First lines of defense
- Boost your immune system. Now is a good time to reintroduce resolutions for good health to keep immune system strong. Eat right, get fresh air, enjoy hobbies, reduce stress.
- Reducing exposure risk. If you depend on home health aides & in-home physical therapy, there's a possibility of exposure. Make sure they are minimizing their own exposure, vigilant about hand washing, etc. You'll need to weigh risks versus benefits.
- What to do if your support system breaks down? Reach out proactively to friends, neighbors, family. Sign up to Nextdoor.com. See if there is a Mutual Aid Network near you. Become familiar with local family services, 211 for essential family services.
- Medical Electronic Monitoring. Subscribe to medical alert services such as Medic Alert, Lifeline, Electronic CareGiver.
Ways to Connect
- Schedule daily or weekly times to chat with friends and family. In addition to phone, consider using FaceTime, SKYPE, Messenger and/or Group Text.
- Create one long “Reply All” email thread about a topic in common with a group of friends from
book club, exercise group, social group/club, etc.
- Sign up to networks that connect neighbors. Nextdoor.com.
- Put out your needs onto FB chats. Six degrees of separation really works. This is a good way to find someone who can help. If you see someone else with a request, forward it to your FB network.
- Throw Netflix viewing parties.
- Keep your sense of humor.
Help yourself and others
- Have a purpose to your day.
- Continue routines. Dress, shower, wear makeup, not for others but for yourself.
- Call to check in with others if you have not heard from them.
- Many stores have set up senior/disabled only hours. Ask a neighbor to accompany you to help you & they can shop too.
- Wear gloves, wipe down your equipment & wash hands after putting away groceries. Wash all fruit.
- Give neighbors lists of things you need. It not only helps you but gives them purpose.
- Create manual bidet if low on toilet paper. Use dedicated sterile ketchup bottle filled with warm water & soap.
- Meditation. Ask Alexa or Google to play Guided Meditation or Meditation Music. Download meditation apps for phone such as Insight Timer, Calm, Headspace.
- Order food from meal delivery companies and local restaurants. Many provide free delivery. Pay AND tip by credit card. Try not to handle money.
- Many drug stores including CVS & Walmart have drive up delivery.
- Use technology: Kindle or online library borrowing.
- Virtual FSHD meetings like Sequester Camp.
March 19 - Launching our weekly webinar
We launched our FSHD Society Sequester Camp webinar series with Mark Stone expressing his gratitude to our community for being a fount of wisdom and inspiration during this time of crisis. June Kinoshita shared medical information from our medical advisors and dispelled some widely circulated myths.
Loneliness is detrimental to your health! Some antidotes:
- Tune in weekly to our radio show on Facebook live, Wednesdays at 9pm ET. You can call in to our lovely host, Tim Hollenback. He would love to chat with you!
- Facebook is a powerful connector. If you are new to FB, just post a comment on the FSHD Society page that you wish to connect with others, and we’ll spread the word.
- Talk to family and friends every day on the phone.
- Remember, you have a lot to offer. Someone might need your advice and help. Reach out to neighbors, support local businesses and artists, etc.
- Exercise at home. Ask your physical therapist or trainer if they can conduct virtual sessions.
- Get outside! Enjoy the spring sunshine.
- Mindfulness meditation helps you manage anxiety. Stay tuned: We’ll be hosting virtual mindfulness sessions.
- Remember, life is different but it hasn’t ended. In future webinars we’ll explore ways to enjoy community, cultivate your creativity, and more.
- Call us. Message us. We want to hear from you!
Additional health tips
- If you have respiratory issues, use cough assist proactively.
- Make sure you and your family—anyone who might transport you to emergency if you were to fall ill—understands that if you develop serious breathing problems and need oxygen, it must be done with ventilation or BiPap so that you can expel carbon dioxide. Blood CO2 must be monitored along with oxygen. Write it down.
- Get your flu vaccination, not because it prevents covid-19 but because you need to prevent influenza.
- Washing hands is potentially more effective than hand sanitizer. Save Purell for when hand washing is not possible or practical.
- Wear a mask if you are infected (or think you might be) in order to avoid transmitting the virus to others. Wear a mask to protect yourself if you are in the presence of potentially infected individuals (such as a hospital waiting room, crowded public places). Be sure both your mouth and nose are covered.
- Wearing gloves is probably no more effective than hand washing, and gloves can get contaminated too. Wearing them may give false illusion of safety.
Covid-19 and FSHD survey
The European Reference Network for Neuromuscular Disease is conducting a survey to collect data on the impact of covid-19 on individuals. If you have FSHD and have covid-19, or if you know someone who is and can fill this out on their behalf, please take the survey HERE.
Information provided by the FSHD Society does not imply an endorsement of any of the drugs, procedures, treatments, or products discussed. Please consult your own healthcare provider about any medical interventions.