Re: Familial Dysautonomia and Coronavirus

Dear Families,

It has now been 2 months since The World Health Organization (WHO) announced the coronavirus, also called COVID-19 or SARS-CoV-2 was a global pandemic on March 11^th, 2020. Locally and throughout the United States, local governments, conscientious businesses and individuals implemented social distancing and hygienic practices to reduce the spread of COVID-19. Now we have seen the positive results of our collaborative actions to protect ourselves, families, and communities as infection rates have declined in New York State and surrounding region! However as a consequence of this success, it is with great concern that we watch many regions of the United States drop their precautions which allowed the infection rate to diminish and which maintained a low rate of infection in many areas. We hope the change in seasons and warmer weather of Summer will bring much-needed respite from the devastating effects of this virus, allowing healthcare services to regain strength, supplies, and plan and prepare for the next wave of infections. Because weather will not eliminate this disease. It will be present in our communities still in the Summer even if at a lower level, and will be waiting in the fall. Its presence is a new fact we have to deal with moving forward. So, while we cannot return to “normal”, we have the opportunity to form a new normal which brings opportunity for positive change!

Continued Precautions

At this time, no state has shown the kind of evidence that infectious disease experts say supports a full reopening of society. Trips for necessities like groceries and medications should still be minimized, as should other excursions outside for exercise, especially for those at higher risk of severe outcomes from COVID-19 infection. Trips outside should be made during non-peak hours to reduce the number of people encountered. And if other people are around, maintaining a social distance from others not in your household by at least 6 feet should be used. Also, strict hand hygiene practices including not touching your face, and mask-wearing precautions should be followed. But even when wearing a mask, avoid crowded places if possible. Wait for a non-crowded elevator, wait for a crowded isle to clear at the grocery store. And we are excited to announce we will be beginning virtual visits soon for FD Annual Evaluations to support continues precautions and health of those with FD!

On the topic of masks, it is an executive order in New York State to wear a face-covering of some type when in public and social distancing is not possible. Many people are upset about mask-wearing and see it as their right to make that choice for themselves, and that the government shouldn’t mandate it. There is similar upset in response to social distancing guidelines. Our position on this is simple. Choosing to not wear a mask in public is not gambling your own health, it is gambling the health of those around you. Masks don’t just offer some protection to the wearer, they can have more benefit to those around you if you are infected. It has been found that 25-50% of all people infected with COVID-19 could be asymptomatic but still be spreading the virus to others. Masks and other precautions can be embraced as caring actions for others.

Health Tips from the Dysautonomia Center

Many folks in quarantine joke about how clean their houses have become. Most of us have those areas in life we tend to neglect when our minds are distracted elsewhere, which is why this is an opportune time to give attention to our health which is so often neglected too! And what better time to be proactive about our health than when faced with a serious health threat? This is coupled by the fact that many individuals are experiencing worsening physical and mental health due to restricted activity and the fear and uncertainty that this health crisis has caused. We wish to help address these issues in this update to our community!

There is no cure or definitive treatment for COVID-19, though progress is being made. The most devastating effect of this infection has been a condition called Severe Acute Respiratory Syndrome (giving the virus the name SARS-CoV-2). That is why pulmonary health remains vitally important and those with FD are at greater risk. There are limitless methods to improve lung health, physical and mental health while in quarantine. But we will outline some of our favorites here. It is our hope that the following methods not only prove useful in improving health now, but can be incorporated into new healthy habits in the future!

Lung Health

Prescribed Lung Health: Many of those with FD already have prescribed therapy for lung disease or prevention. Commonly asked questions include what the best sequence is to use them in, and how to use them properly.

If using devices for pulmonary hygiene, when using both Cough Assist and a chest vest, start by using albuterol if prescribed, then Cough Assist, then the vest in that order, at least twice per day. Use Cough Assist for 5 cycles each time. This is very important to expand the lungs. Use pressure setting 30- 40cm H2O for the Cough Assist machine. And at the 5th cycle, inhale once more and finish with a large inhalation. In other words, finish with expanded lungs, not empty lungs. Use the oscillating chest vest twice daily, either prior to meals or an hour after eating to prevent leaking from a G-tube if present. The vest should be worn for at least 20 minutes per session. Use Cough Assist/Aerobika/Acapella or other devices twice daily on a regular basis, and at least 4 times daily if sick or congested, followed by “Huff” coughing to help expectorate secretions.

Continue to use BIPAP /CPAP at night at prescribed settings if prescribed.

See the resource list at the end of this article for videos and other resources on the above therapies!

Laughter is the Best Medicine. Laughing causes deep breathing and forceful exhalation which can lead to really effective coughing. So, put on your favorite funny movie and get to practice!

Playing musical instruments such as the harmonica, flute, recorder, or horn can be a fun and very effective way to both improve lung expansion and build chest wall muscles that are needed to forcefully blow out to make music.

Purposeful Daily Exercise. Exercise that poses a little challenge to make you to breathe a little faster and elevate your heart rate can do wonders to improve your health. Exercise optimizes lung health and improves immunity, and even moderate exercise when mildly ill is helpful. But plan for success. Make sure the patient is hydrated and has had food, but has not eaten in that last 1 hour, avoid extreme temperatures (>85 or <32º F), so indoor exercise is great! And avoid the old adage “no pain, no gain”. Instead, make sure the patient can carry on a conversation while exercising which is a good sign breathing is adequate. 

A fun form of exercise many people don’t think about is dancing, which improves balance and coordination as well! Dancing can be done anywhere, either alone or with a partner which can make it fun and safe if balance is an issue. There are also many online offerings for free Zumba and other classes right now. Other options include walking, jogging, yoga, tai chi, and jumping jacks in place if in a small apartment, and recumbent exercises can be well-tolerated for those with hypotension, including recumbent biking, Pilates, rowing. Yoga and Tai Chi also double as powerful stress reducing exercises.

And if you have a private swimming pool, swimming is also an excellent option for those with hypotension and weakness, just make sure to never swim alone.

Try www.Eventbrite.com and search for classes including “free zumba”.

Try Chair Yoga designed for Lung Health:

Fresh Air. If air quality and weather allow, and people are not walking directly-by outdoors who may be infectious, consider opening a window during the day for fresh air. This can allow viral particles present in the room from another family member to exit, and can bring more clean air and oxygen into the room. Private balconies, back yards or patios are also good locations to spend time in if they follow the considerations above.

Deep Breathing for Lung Health and Relaxation

Stress causes physical symptoms because of the body’s way of reacting to a threat, whether that threat is real, or perceived. Stress causes the stimulation of the sympathetic nervous system, or the “fight or flight” response. This stimulation can escalate to the point of emergency in those with FD who experience autonomic crisis. So it is important to pick up on beginning signs of stress. The subtle beginning signs of stress in everyone can include: low energy, headache, upset stomach, diarrhea, nausea, tense muscles, chest pain, heart rate elevation, insomnia, frequent colds and infections, loss of libido, shaking, ear-ringing, cold or sweaty hands and feet, dry mouth, grinding teeth, eating too much or too little, increased use of drugs and alcohol, procrastination, and fidgeting behaviors such as skin/lip/nail picking or biting.

Deep breathing exercise is not only good for lung health, but it also increases action of the parasympathetic nervous system, which counters the effects of everything above! It drastically reduces heart rate, blood pressure, and gives the user a sense of control and power, and an overall feeling of calmness even in very stressful situations. That is why even the Navy SEALs uses deep breathing exercise for stress management. Everyone can benefit from doing deep breathing exercise a few times every day to promote health, and it should be used immediately in response to symptoms of stress. There are numerous techniques and some debate about which one is the best. But the most important thing is to choose one that works for you and practice it daily so it can be mastered and useful in times of increased stress.

Here are 3 Relaxing Deep Breathing Exercises

• The Relaxation Response: Dr. Herbert Benson Teaches you the Basics:

• How To De-Stress In 5 Minutes Or Less, According To A Navy SEAL
• The Relaxing Breath: Dr. Andrew Weil’s preferred technique:

A Form of Meditation, Guided Imagery

When a situation is stressful and beyond one’s control, it is essential to have the ability to transcend that moment, to rise above it. And sometimes all you need to regain emotional control is just a few minutes, a quiet place and a favorite memory. You can excuse yourself to go to your room, the bathroom or any place to get away from others, shut the door, sit down, close your eyes, and relax. Choose your favorite pleasant memory. It can be any memory, no matter how simple. It can be calm, or it can be happy and exciting. It’s your favorite, you decide what is important to you. Try to remember what you saw. The details, the colors. What did it feel like there? Was it warm, or a little chilly? Was there a breeze blowing, or sunlight streaming through the window? Were you touching a warm blanket, wet grass, or smooth wood of an old armchair? Try to keep in mind how it looked and how it felt. Now, what did you hear? Was there music, birds chirping, wind chimes, kids laughing or a kettle of water softly whistling on the stove?  Or maybe your favorite person was telling you a story. Now, focus on what you saw, what you felt, and heard, and can you remember anything else? What about how it smelled? Fresh? Maybe like the ocean? Or a forest? Or your grandfather’s cigars? And maybe you were eating or drinking something. Remember that too. Be still and focus on all these senses to transport yourself there….

Now what was bothering you when you started this exercise?  Does it seem to bother you as much now? Likely the answer is no. We all have the power to escape to our favorite memory at any time to take a break from this world which can be too stressful at times and there may be nothing we can do to immediately change that. But we can change how we respond to it. This is an essential tool for anyone to master. The more you practice this, the faster you can recall the memory and achieve the sense of calm it brings, even when under pressure.

Free Online Mental Health Resources during COVID-19 Outbreak

The link above includes free Apps for anxiety and depression such as HeadSpace, Shine and Calm. Also included is a link to a clinically validated mental health video game, apps for insomnia, and support groups for loneliness and sobriety.

Mindful.org

The above link is a resource for learning more techniques on mindfulness and meditation during coronavirus from Mindful.org.

Demonstrating Use of Several Prescribed or OTC Respiratory Therapies

How to use Cough Assist: detailed steps from start to finish, and how you should finish with an inhale:

How you can “Huff” cough during the cough assist treatment, and after, into a tissue.

This video below gives a great overview of numerous devices including cough assist, acapella, aerobika, and this user’s favorite, the RC-Cornet which can be really beneficial for your lungs. The video was made by a patient with CF, or cystic fibrosis. People with CF also have chronic lung disease from trapping of secretions:

Bronchiectasis Toolbox: This website is a treasure-trove of information on different devices you may already have or are interested in. Instructions and links to videos can be found here for all devices.

Other Useful COVID-19 Resources

CDC: Symptoms, testing, guidance on cloth face coverings and other protective measures.

Statistics on COVID-19 Infection Rates per State: Alternate source for statistics on rates of infection, testing, hospitalization and more.

Guidance on Reopening: Tracking which states have met criteria to start reopening safely.

Making Washable, Reusable Cloth Masks: Great resource on face masks, ranging from CDC recommendations, to accepted healthcare resources, to others around the web.

We invite you to take some time and explore the links and videos within this document, and sincerely hope you find the pulmonary, physical and relaxation exercises beneficial to you and your families now and into the future. If we’ve learning anything at all from this devastating experience is that there is a silver lining in having to rethink everything we do. We can reflect and learn lessons from our mistakes, become better prepared for the future, become more resilient, strong, and more creative. We can learn and grow to become better people, and be kinder to each other and the world we live in.

As always, if you have other questions or concerns that are not specifically addressed in this document or the ones preceding this one, please, contact the Dysautonomia Center for further guidance.

Thank you. Please continue to stay safe and be well, and remember that your caution not only contributes to your safety, but to the safety of everyone!