Dystonia without botulinum toxin (COVID-19)

We all experience difficult times now. Many people with dystonia are already struggling with isolation and anxiety and are therefore greatly affected by the pandemic situation. Additionally, with maybe no access to BTX treatment. Dystonia Europe, with the help of specialists and other organizations, has gathered some valuable advice and tips to help people with dystonia. We hope this can be of some help for you while having to stay at home and not having access to regular treatment.

What is Corona virus and Covid-19?

COVID-19 (Corona virus disease 2019) is a new disease that can affect your lungs and airways. It’s caused by a virus called coronavirus. Symptoms include fever, tiredness and dry cough, and there is currently no treatment.

For detailed information on the corona virus and Covid-19 and the most updated advice and guidelines on how to behave to reduce the risk of spreading and catching the infection, we refer to the following pages:
• WHO – World Health Organisation
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses
• ECDC – European Center for Disease Prevention and Control
https://www.ecdc.europa.eu/en/covid-19-pandemic

In addition to the above, national governments of European and non-European countries have published or are publishing country-specific guidelines, measures and actions.
Please ensure you follow the advice and recommendations in the country where you are based.

Some simple preventive methods you can think of to avoid catching the infection or spreading it to others:

  • Wash your hands often
  • Don’t touch your face.
  • Sneeze in your elbow.
  • Social distancing – work from home and do not see older people.

Published: 14 April 2020

Presentation: Managing dystonia without botulinum toxin - exercises and tips

We would like to thank Doctors Castagna, Adrenelli and Ramella for producing this important information and also thanks to ARD for the support and help to make this presentation available to Dystonia Europe members.

Published: 14 April 2020

Are dystonia patients at a higher risk? What can you do if you cannot have your BTX treatment?

We have asked some dystonia experts for their recommendations and advice.

Professor Tom Warner at Queen Square Institute of Neurology in London, says:”As for dystonia I do not think focal dystonia will have any impact on whether people get sicker with covid infection, or are at higher risk.
The important thing is dystonia does not affect the immune system and most people are otherwise fit and active for focal dystonia. The same would apply for laryngeal dysphonia as it does not usually affect the swallow.
The only factor is age, and that is the same for all people as outcomes as we get older are less good with covid infection. The other risk factors are the same as for other people. If you have another disease such as diabetes, cardiovascular, high blood pressure you are at a higher risk.
The only cases of dystonia who will be more vulnerable will be those with severe and generalized forms which limit mobility or secondary cases where there are additional features including swallowing problems. These people would be expected to isolate and reduce contact to minimum in UK to reduce risk of picking up covid infection.”

Dr. Francesca Morgante, Neurologist at St Georges Hospital, recommends for Dystonia patients in Europe to learn how to manage dystonia without botulinum toxin, when in this period they cannot have access to Clinics. Contact the treating neurologist and ask about oral medications which might ease the amount of pain and involuntary movements. An important aid in the moment may come from the physiotherapy exercises.

For DBS patients the situation is a bit different since they surely can cope better in this situation as their DBS device can also be managed remotely if needed, through the remote control and telemedicine assessments. Dr. Morgante’s advice is to contact the neurologist or DBS nurse if they have sudden lack of control of their symptoms.

She concludes: ”I would like to let all dystonia patients know that neurologists across Europe are making plans to start safely botulinum toxin clinics again, especially for those patients who has urgent need to be treated because of severe symptoms. However, this needs accurate plans in order to minimise risks of infection to patients and health professionals. We are seriously working on that. ”

More On-line Support

Here we have collected links to presentations recently produced to give important advice,  information and help to dystonia patients during the pandemic.

Published: 14 April 2020

Dr Marie-Hélène Marion, neurologist and the director of the London BTX centre in London, has recorded a video presentation to advise dystonia patients with recommendations if the BTX injections are not available.

Published: 14 April 2020

DMRF Canada and DMRF US hosted a webinar recently on Dystonia and Covid-19 pandemic. Movement disorder specialists Mark Hallett, National Institute of Neurological Disorders & Stroke and Robert Chen, of the University of Toronto address questions from the dystonia community.

Published: 14 April 2020

NSDA – the National Spasmodic Dysphonia Association (www.dysphonia.org) in the US has produced information on what I need to know having spasmodic dysphonia or a related voice condition during the COVID-19 pandemic.

A two-part webinar led by Speech Language Pathologist/Voice Therapist Christie DeLuca (a dysphonia patient herself) to help cope with and manage symptoms when BTX injections are postponed for dysphonia patients.

Published: 14 April 2020

Dystonia San Diego support group shared recently on their Facebook page a gentle, restorative Yoga video, recommended by UCSD (University of California San Diego) as a way to stay healthy while we’re in our homes. The emphasis is on breathing and stretching and you can do the exercises on the floor or in a chair.

Published: 14 April 2020

Another video we strongly recommend these days is to listen to Prof Marjan Jahanshahi, UCL Institute of Neurology in London, and her advice of living well with dystonia. Here she gives important advice on what to think of when we are face with challenges.

Published: 15 April 2020

Managing Your Fear and Anxiety during this Uncertain Time
The National Spasmodic Dysphonia Association welcomed Dorothy Tannahill-Moran who gave some things to think about and to do to help manage the fear & anxiety to help you regain some peace-of-mind immediately.

Published: 16 April 2020

Q&A on physical activity at home during COVID-19
From the World Health Organization (WHO)

Published: 20 April 2020

Living throught Corona Virus Pandemic
 
Professor Emeritus Marjan Jahanshahi, UCL Institute of Neurology in London, is a clinical psychologist and neuropsychologist.
We asked Professor Jahanshahi what advice she would give to our members, dystonia patients and their families during this difficult time of the Covid-19 pandemic.
She concludes in the article: “Remain hopeful! This will also pass. The pandemic is temporary and will end.”

Published: 18 May 2020

Dystonia Europe Webinar. 
Cervical Dystonia Rehabilitation in Times of Difficulty in Having Access to Usual Therapy

Jean-Pierre Bleton – rehabilitation specialist from A. de Rothschild Foundation in Paris, gives advice on cervical dystonia rehabilitation in times of difficulty in having access to usual therapy. Specialist answers participants’ questions with support of neurologist consultant – Dr Marie-Hélène Marion from London.

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