COVID-19 and Tourette Syndrome

Around the world many countries and economies have slowed and people have begun retreating to the safety of their homes due to the novel Corona virus (COVID-19). Unfortunately, most of the information has been generic and not targeted at specific groups of individuals with diseases- such as Tourette Syndrome. I am a neurologist at the University of Florida Fixel Institute for Neurological Diseases and I also sit on the medical advisory board for the Tourette Association of America. My laboratory has been performing research on Tourette syndrome for almost 20 years. In this blog I will give you my expert view on what you and everyone in the Tourette Syndrome community need to know about the novel corona virus. I will answer the common questions we have been receiving on Tourette Syndrome and COVID-19. Our Tourette Association of America Center of Excellence Directors recently wrote a book called Tourette Syndrome: 10 Secrets to a Happier Life and we are all committed to helping the Tourette syndrome community meet the current and future challanges. Also, be aware that the Tourette Association of America stands prepared to help and can be contacted as well.

Here we go:

If I have Tourette Syndrome what are the basic things I should do during the Corona Virus crisis?

The following 6 tips should be put into action for anyone with Tourette Syndrome (including family members):

·       Wash your hands for 20 seconds frequently (sing happy birthday twice while washing and use soap).

·       Socially distance (stay home and limit visitors). Having no visitors is the safest. Have delivery people leave food and packages at the door and tip them using a credit card. Take food out of the wrappers and put on a plate and then wipe down all surfaces and wash your hands.

·       If you get sick, call your doctor’s office (or emergency room) first before presenting in person so the health professionals can be ready to protect you and to protect others.

·       Cancel all group gatherings (support groups, exercise classes, etc.).

·       Reschedule all non-urgent doctor’s appointments and obtain 3 month supplies of medications.

·       Inquire whether your appointments can be performed through the the telephone or through telemedicine (e.g. Zoom, FaceTime, Sykpe, others).

Is Tourette Syndrome considered a ‘high risk’ group?

Tourette syndrome patients are not considered high risk unless elderly or they have other medical conditions (diabetes, hypertension, lung disease, heart disease, Parkinson’s, dementia, etc.).

Is the immune system normal in Tourette syndrome?

As far as we know from medical research, the immune system functions normally in the setting of Tourette syndrome.

How far should I socially distance myself with my Tourette Syndrome?

The general guidance for socially distancing is 6 feet or more. This applies to standing in lines or when in stores. When you take occasional walks (or walk the dog) try to keep the distance much greater than 6 feet and stay out of crowds.

Should I worry about medication shortages with Corona virus and my Tourette syndrome?

It is important to be proactive about medication shortages and Tourette syndrome. We recommend you call your doctor and you get 3 month supplies of all of your medications (whether Tourette medications or other medications). In general we think a 3 month supply will be adequate and as other countries re-establish manufacturing plants and capacity medications should be more available.

I am afraid to go into pharmacies with my Tourette Syndrome? Any suggestions?

When you pick up your medications at the pharmacy, please use the drive through lane. If there are a few other items in the pharmacy that you require- usually you can ask the pharmacist or pharmacy technician to grab them from the shelves of the store. In general, as long as you tell them you have a disease and you do not want to enter the store for safety reasons they will be happy to grab 1-2 items for you. If you need more than 1-2 items I would suggest driving through again later in the day or on a different day so that we can be sensitive to their time- and also their need to serve the whole community.

My tics are worse because of all of the worry about Corona virus and my OCD seems to be driving my tics. What can I do?

Many of our patients are using relaxation techniques, mindfulness and meditation. Try to choose activities you can do at home which are stress-busters. Choose things you “love to do” and things where you “forget about the time” when you do them. Use the phone and tele-connections (FaceTime, Skype, Zoom, others) to stay connected with family and friends. Keep in mind that if you stay home and socially distance, the chances are- you will be very safe from the virus. You can leave your house for occasional walks (e.g. walk the dog) but stay out of crowds and practice social distancing.

I have Tourette Syndrome and my mother/father is stuck in a nursing home facility and they won’t let me in to visit. What should I do? Should I take them home?

It is a terrible but necessary reality that medical facilities and nursing homes are locking down in an effort to protect your loved ones. Some residents of nursing homes require the social contact with friends and family to stay calm and focused and some may even become confused and combative without the contact. We recommend using tele-links (Facetime, Skype, Zoom, etc.) everyday and also engaging in frequent telephone calls. It is an option in some cases to take them home, but this is not always the best decision. We recommend you discuss with your doctor and completely assess the needs and support staff required to keep your relative safe (turning them in bad, falling, walking, medications, etc.). You may not be able to support them safely for the many months that restrictions may be in place- so make an informed decision weighing the risks and potential benefits if you decide to take them into your home setting.

I feel like I am getting sick with a cold and with my Tourette and it is freaking me out. What do I do?

First, do not panic if you start to get the “sniffles” or cold symptoms. This may happen with or without the Corona virus situation. If you have allergies, we recommend you take allergy medications and observe if the medication helps the situation. If you do not have allergies, we recommend calling your primary care doctor (internist or family physician) and informing them of the situation. In most cases, they will recommend you stay home and socially isolate yourself from others. It is unlikely you have the actual Corona infection unless you develop cough, fever and in some cases shortness of breath. Call and keep your primary care doctor informed each day of your progress. Your doctor will advise if you need to come in for a medical appointment- and possibly come in for Corona virus testing. Do not go to the doctor’s office or emergency room without calling first. The call is so your healthcare team can be prepared to isolate you from other patients and get protective gear ready for your arrival. Finally, take solace in the fact that most people with “sniffles” during this Corona outbreak will end up having allergy symptoms or a common cold.

There is a report that ibuprofen can make Corona Virus worse? Is this true and should I worry about this as a Tourette patient?

The reports of people with Corona Virus worsening on ibuprofen are not a huge worry of healthcare professionals. In most cases it is true that patients on ibuprofen are worsening, but it is unlikely to be the ibuprofen that is making them worse. This is what we refer to as “an association” that is likely to be unrelated. We will keep monitoring the situation, but at this time I am not telling my patients to avoid ibuprofen. If you are worried, there are other choices such as Tylenol, however it is unlikely in the end we will conclude the ibuprofen made Corona worse or that ibuprofen caused Corona virus infection.

As a Tourette patient I want to know whether there are any medications I can take to prevent or treat Corona Virus infection?

At the moment there are not any medications approved to treat or prevent the Corona virus infection. All treatments are symptomatic and supportive. There is interest in a class of medications used to treat Malaria called chloroquine. The scientists and doctors leading the efforts to address Corona Virus (COVID-19) do not recommend that people use up the supply of malaria drugs until we establish if they work and on which patients they should be administered. There are other drugs of interest which target ribonucleic acid (RNA) and we will keep you updated with any changes in emerging ptherapies for Corona virus infection.

People in my Tourette group say there is a vaccine that will be available soon for COVID-19? Is this true?

There is no data to suggest face masks will reduce the spread of the virus. Also, if people buy up the face masks we will not have enough for the medical professionals to take care of the patients who actually have Corona virus. In Italy, a second crisis emerged where the medical professionals started getting sick in large numbers and patients were left without experts to take care of them. We recommend therefore that you do not buy up face masks.

The hard truth is that vaccines are being developed and tested but that this will take a year or more to deploy. What that means is that we all need to contribute to controlling the outbreak through socially distancing, washing our hands and doing our part for the common good. Do not depend on a vaccine.

Should I go out and buy a box of facial masks from the drug store to protect my Tourette family member from getting COVID-19 novel Corona virus?

There is no data to suggest face masks will reduce the spread of the virus. Also, if people buy up the face masks we will not have enough for the medical professionals to take care of the patients who actually have Corona virus. In Italy, a second crisis emerged where the medical professionals started getting sick in large numbers and patients were left without experts to take care of them. We recommend therefore that you do not buy up face masks.

I have a deep brain stimulator and I am worried about programming the device and the battery running out and my Tourette syndrome worsening. Help?

Make sure you phone your doctor about any upcoming deep brain stimulation programming visits. In many cases these visits can actually be delayed.

If you do have an in person visit many devices can be programmed to offer you flexibility to make adjustments of your device in your own home (you may already have this function and can ask your doctor or health care professional by phone). If you are worried you can request flexibility to program your own device at your next in person appointment.

In most cases, once the DBS device has been in place for 4-6 months, programming adjustments are rarely required. Most of the management for DBS patients after 6 months is through medication optimization and this medication optimization can be handled by phone.

If your DBS battery depletes (or runs out) this can create a potential urgency or emergency as your symptoms may return. In most cases, medical centers can change batteries in an outpatient surgical settings and will not deem this as “elective surgery.” Make sure you request an outpatient battery change, especially if you are worried your symptoms will rebound and worsen without deep brain stimulation. If you think that you can bear the symptoms and wait it out that is an option. In some cases, the medical center and your doctor may need to make the difficult decision to delay a battery placement to protect your safety and also to preserve medical supplies for those suffering from the Corona virus.

My Tourette support group talks a lot about flattening the curve in COVID-19 Corona virus and how important this concept is….can you explain flattening the curve in lay terms.

The curve refers to how many patients will present with Corona virus and how fast they will come in. If the curve is steep they will all flood in at once and this will overcome the healthcare system (we don’t have enough beds, ventilators, protective gear, etc.). If we do our part and wash our hands and socially distance we can flatten the curve so they will come in at a slower place. If Corona presents at a slower pace it will not overcome our hospitals, healthcare systems and all of of the needed resources to deal with the infection.

To read more books and articles by Michael S. Okun MD see Twitter @MichaelOkun https://www.tourettetreatment.com/ and http://parkinsonsecrets.com/ #EndingPD