Coronavirus and Huntington’s Disease: What You Need to Know
Having Huntington’s disease (HD) doesn’t necessarily increase the risk of contracting coronavirus (COVID-19). But unfortunately, some of the symptoms with advanced HD may increase the risk for complications from this respiratory virus, such as difficulty swallowing or clearing secretions from the lungs. Other factors that may increase the risk of complications are older age and having other serious medical conditions such as heart disease, respiratory illnesses, diabetes, and kidney failure.
Meanwhile, as much of the country opens and more people are getting vaccinated, it’s more important than ever to remain safe – and know what to do if you feel sick.
Understanding the Main Symptoms of Coronavirus
The list of coronavirus symptoms includes cough, shortness of breath or difficulty breathing, fever, chills or shaking, muscle pain, headache, sore throat, and recent loss of smell or taste. The virus is spread through person-to-person contact, via respiratory droplets produced when an infected person coughs, sneezes or even simply talks. But it’s not always clear if someone is infected. For more information on these and other signs of coronavirus, visit the U.S. Centers for Disease Control (CDC).
When to Contact the Doctor
If you notice any new or worsening symptoms, regardless of what you think is causing the changes, contact your primary doctors right away. This would include your primary care provider, neurologist, and psychiatrist. The doctor(s) will let you know what to do. You may be offered a telehealth visit instead of an in-office appointment. This is a way to assess your health and keep you safe from being exposed to the coronavirus. For tips on making the most of this new way of speaking with your doctor, click here.
In case you do get sick, have a plan in place. Make a list of your medicines, medical providers, and any other care providers. Also note how you plan to stay in touch with caregiver(s) and family – such as email, text message, or cell phone.
You should also check with your doctor’s office to see if you can use a telehealth visit for regularly scheduled appointments for you or the person you care for. These virtual visits are now covered by Medicare due to the pandemic.
For more detailed information about HD and COVID-19, visit the Huntington’s Disease Society of America (HDSA).
Tips for Staying Safe from the Coronavirus
As someone with a serious illness, it’s important that you keep following health and safety guidelines related to COVID-19. The virus is still circulating and you may have more than one risk factor that could lead to severe complications if you catch this infection. Vaccines are becoming more available and if you haven’t already received yours, you can learn more from HDSA here.
Even if you’re fully vaccinated, the CDC and HDSA advise individuals in higher risk groups to maintain health and safety practices. These include proper and frequent handwashing or use of hand sanitizer, wearing face coverings in public, and physical distancing with anyone outside of your immediate family circle.
If you rely on health aides at home, make sure they use face masks and follow all hand-washing practices while they are with you and your loved ones. The same should be expected of any visitor to your home.
Visit the COVID-19 information pages at GetPalliativeCare.org to learn more. More details about staying safe can be found on the CDC website.
What Palliative Care Provides
You may already be working with a palliative care team; but if it’s new to you, it’s important to know that this is a medical specialty that focuses on managing the complex symptoms, side effects, and stress of serious illnesses like Huntington’s disease. They work with your existing doctors to address your symptoms, including depression, anxiety, or difficulty sleeping. The team also manages the symptoms related to other medical problems you may have, such as heart disease, lung disease, or conditions that are painful.
They also educate you and guide you and your loved ones through all the distress caused by HD. The team will help you navigate the complex health care system. They will keep you, your family and all of your doctors coordinated, and on the same page.
In addition, your palliative care team can help you fully discuss your health with your family caregivers. Palliative care specialists can help you match your treatment to your goals of care by focusing on what matters most to you. The team will use their communication expertise to help you achieve your personal goals while living with HD. They understand that every patient and every family is different. The team is focused solely on helping you and your family achieve the best possible quality of life.
To learn more, visit GetPalliativeCare.org.