Top 5 things you need to know about COVID-19 and dystonia care: An expert weighs in

COVID-19 and Dystonia Care: What do you need to know?

While we patiently wait for the COVID-19 crisis to resolve, we approached leading dystonia experts for tips and advice on caring for patients. We were fortunate to sit down with one of the leading clinical and research experts, neurologist Dr. Aparna Wagle Shukla. She shared with us her “top 5” tips for dystonia care during the COVID crisis.

Who is Dr. Aparna Wagle Shukla?

·   Aparna Wagle Shukla MD is a physician-scientist who provides clinical care for patients with dystonia and she has focused her laboratory on identifying new treatments for focal and generalized forms of dystonia. Dr. Wagle Shukla is the clinical director for Tyler’s Hope Foundation for Dystonia Cure.

·   Dr. Wagle Shukla is an expert on dystonia treatments including pharmacological therapies (pills), botulinum toxin injections, surgical management (DBS), and also on rehabilitation based therapies.

·   Her lab develops novel treatment approaches including exercise. She has performed many studies involving the use of repetitive transcranial magnetic stimulation (TMS); a brain stimulation treatment currently approved by the FDA for treating medication refractory depression.

·   She has been funded by various dystonia organizations and also by the National Institutes of Health. She has published over 75 research articles in prestigious journals such as Brain, Neurology, Journal of Neurology Neurosurgery and Psychiatry (JNNP), Parkinsonism and Related Disorders and Movement Disorders.

What should every dystonia patient know about the Corona virus?

• COVID-19 is a viral infection caused by a Coronavirus. The infection first emerged in December 2019 in Wuhan, China.

• The World Health Organization named the infection COVID-19 (Coronavirus disease of 2019) and declared it a pandemic in March 2020.  The infection has been spreading rapidly across the world….and some have compared it to a raging wildfire.

• COVID-19 presents with symptoms of fever, common cold symptoms, cough, headaches, muscle aches, difficulty breathing, and in< 20% of patients pneumonia. The pneumonia may requiring hospital support.

• Signs and symptoms of COVID-19 commonly appear two to 14 days after exposure to the Coronavirus.

• There is currently no cure and there is no vaccine.

• Those who believe they may have the illness should seek medical treatment immediately. We can help others and also help ourselves by taking many precautions.

There is no vaccine for COVID at the current time which means prevention is the key.

• We can “flatten the curve” of rising infection numbers.

• The curve refers to how many patients will present with the Coronavirus and how fast they will seek medical attention. If the curve is steep and goes straight up quickly, all of the infections will come at once and this will quickly overcome the healthcare system since we don’t have enough beds, ventilators, protective gear, etc. By socially distancing and isolating we can prevent a rapid peak, save lives and not overcome the capacity of hospitals.

What are important precautions every dystonia patient should take at home?

•   Wash your hands. Wash them often with soap and water for at least “20 seconds.” Be sure to wash your hands with soap, scrubbing all the surfaces between and around your fingers for at least 20 seconds and dry them thoroughly. When you cannot wash your hands, use a hand sanitizer that contains at least 60% alcohol.



•  Carry a small bottle of hand sanitizer. When in public spaces, use a hand sanitizer that contains at least 60% alcohol.

 •  Clean the surfaces around you that you may contact. Stay as healthy as possible and use disinfectant wipes especially in public areas.

•    Avoid touching your eyes, nose, and mouth with unwashed hands.

How important is social distancing for dystonia patients? What is the risk of COVID-19 in dystonia?

• If there is a COVID-19 outbreak in your community, stay home as much as possible as this will reduce your risk of being exposed.

• There is not an increased risk of getting COVID-19 if you have dystonia.

• There is however an increased risk for complications and you may have a more difficult recovery.

• Social distancing means avoiding gatherings of people and trying to limit public interactions to only the absolute essentials such as groceries and gasoline purchases.  Though note that even groceries can in many zip codes be delivered.

• While in public settings such as grocery stores or when visiting a hospital, one should keep at least 6 feet distance between other people. This will help to avoid droplets containing the virus to be spread .

• Avoid cruises and all non-essential air travel.

• The CDC recommends that if in public wear a mask or something to cover your nose and mouth.

What should a dystonia patients know about medication management during the COVID-19 crisis? What about the need to see a doctor during the COVID crisis?

• Write down or print a list of all your medications. Include the medication name, strength, times taken and dosages.

• Stock up on supplies. When you have the option, you may consider switching prescriptions to 90-day supplies. This can reduces trips to the pharmacy.

• Check all your medications. Take inventory of your list and re-order any that are running low.

• Make sure you have made a list of your doctors with recent contact information and take it with you in the event of a hospitalization.

• Call your doctor when you have your very first symptom.

• Your doctor will likely want to monitor you including your dystonia symptoms and COVID symptoms and your doctor will make the decision as to whether you will need COVID testing.

• If you have to attend the clinic, emergency room or hospital environment call before you go so arrangements can be made to keep you in a non-crowded waiting room.

• Many doctors can manage you by telephone or telemedicine for your routine dystonia care as well as for possible COVID symptoms.

What do you tell dystonia patients with deep brain stimulation (DBS) devices during the COVID-19 outbreak?

• We advise checking with your DBS provider on options for optimal care of the DBS system while in your home. Some health care providers or DBS centers provide dystonia patients with multiple possible “groups or programs.” This is useful as the patient can cycle through the settings without actually having to come in person to the clinic.

• Some clinicians offer patients the option to change other settings at home (voltage, how wide are pulses, how many pulses)

• During the early stages of programming following surgery, some patients will have worsening of their dystonia symptoms after a setting change.  The worsening can in some cases be a consequence of “a part of the brain fighting the “positive changes.” In other words, the DBS can flare the dystonia in some cases, but if you wait, it could get better. Calling your doctor for advice if you worsen is a good idea.

• One unique aspect to dystonia DBS is that clinical benefits may not manifest for weeks to months.

• We recommend that dystonia patients do not turn off the DBS device especially at night. This could worsen symptoms in many cases. Additionally, re-activation of the device may result in an uncomfortable side effect. 

• If your DBS has been in place a long time it may be possible to be managed at home through the COVID crisis.

• In some dystonia patients running out of battery can result in a serious flare in symptoms. You and your doctor should monitor battery life and plan for replacement to prevent rebound of symptoms. If your hospital deems the DBS battery an elective procedure you and your doctor may need to manage with medications until a replacement surgery is available.

• Many centers consider DBS battery replacement as an urgent procedure.

To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his blogs and books Dystonia Tips and Research @TylersHope #TylersHope #Dystoniasucks