COVID-19 Coordinating Panel on Rare Neurological Diseases

Rare Neurological Diseases in the COVID-19 era: Suggestions for information to patients and caregivers

Rare neurological diseases are usually hereditary chronic disorders, affecting the central, peripheral nervous system and skeletal muscle, with clinically heterogeneous manifestations.

 

Rare neurological diseases are usually hereditary chronic disorders, affecting the central, peripheral nervous system and skeletal muscle, with clinically heterogeneous manifestations.

There are more than 3000 such disorders and, for the majority, there is no cure but only symptomatic drug therapies, rehabilitation, social and family assistance and care.

Individuals suffering from rare neurological diseases may be more vulnerable to infection during the COVID19 pandemic. In addition, restrictions, such as the lockdown at home, limit care continuity, rehabilitation care availability and contact with their doctors, frequently leading to worsening of motor symptoms and very likely also to mental stress.

We provide some guidelines and suggestions to protect patients to limit damage due to the prolonged lockdown.

A) Practical suggestions

At this moment, without a vaccine, we can protect ourselves and the patients following these general recommendations:

  • Avoid close contact with people who are sick.
  • Maintain distances (1.5-2 m) with other people.
  • Avoid touching your eyes, nose, and mouth.
  • Stay home when you are sick.
  • Cover your cough in your elbow or sneeze with a tissue, then throw the tissue in the trash.
  • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.
  • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing. If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol.
  • Use a mask when you are in contact with other people.

B) Practical suggestions for home caregivers during quarantine

The precautionary restrictive measures taken by Governments may result in deterioration in people with dementia or other severe neurological disabilities. Forced lockdown can foster states of anxiety that can be difficult to manage, causing difficulties even to family members, who are often the main pillar of care for these patients.

The majority of Rare Neurological Diseases represent conditions that can affect the whole family and impact the lives of all members of the household. In these days of quarantine, patients, forced to stay indoors,  can become more agitated and aggressive, making delivery of  care more difficult for family caregivers, very often without any external support.

We here provide some practical advice:

  • Do not alter the rhythms of wakefulness and sleep, and try and maintaining the usual routine of the day: from the time of awakening, to breakfast, personal hygiene and clothing. Don’t stay in pyjamas all day.
  • Take advantage of today’s technologies such as video calls to contact friends and family and also your doctors.
  • Perform motor activities during the day, such as simple exercises, short walks around the building or on to a terrace to help relaxation.
  • Recover memories of the past perhaps through old photographs and movies.
  • Involve patients in the household’s daily activities such as cooking, setting, tidying up, etc.
  • Devote yourself to hobbies such as drawing, singing, listening to music, watching TV and chatting.
  • Plan daily activities.
  • Continue usual pharmacological treatments and stay in contact with your doctor.

C) Guidelines and available documents

COVID-19: guidance on shielding and protecting people defined on medical grounds as extremely vulnerable Public Health, England

EURORDIS EURORDIS-Rare Diseases Europe

NORD (National organization for Rare Diseases)

ORPHANET

The Association of British Neurologists

The European Academy of Neurology and their Panels:

Scientific Panel Statements on COVID19

ALS and frontotemporal dementia
Clinical Neurophysiology
Epilepsy 
Infectious Diseases
Neuroepidemiology
Neuroimmunology
Neuroscience/ translational neurology       
Autonomic nervous system disorders                    
Coma and Chronic Disorders of Consciousness      
Headache  
Muscle and MNJ Disorders
Neurogenetics 
Neurorehabilitation     
Neuro-oncology   
Pain      
Stroke
Child Neurology     
Dementia and cognitive disorders    
Neurocritical Care        
Movement Disorders         
Neurosonology

Many other reports, have been published by other societies, for example, Rare Movement Disorders and Parkinsonism.

Other Guidelines and Documents are available on the websites of the different European Reference Networks for Rare Diseases and in particular those related to Rare Neurological Diseases: