Professor Emeritus Marjan Jahanshahi, UCL Institute of Neurology in London, is a clinical psychologist and neuropsychologist. She has been a speaker at many of our Dystonia Europe events where she has spoken about Living well with dystonia. Dystonia Europe has also featured her in a couple of videos that you can find on our Youtube channel. 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.
No botulinum injections – try to get a realistic perspective
Remind yourself that not having the botulinum toxin injections at your regular interval of every 12 weeks or so is disruptive but is not disastrous. The disastrous outcome is the loss of life we are all witnessing throughout the world. Missing your regular botulinum injections may mean that your dystonia symptoms return and that you experience some pain and discomfort. You are strong and you can cope with these. Try to shift your attention away from your dystonia symptoms and pain by distracting yourself through reading, chatting with friends or family or watching TV. Remind yourself that you did cope with your dystonia symptoms, the discomfort and the pain before your started botulinum toxin injections and you can cope with these again.
Obtain alternative medical treatment
If the dystonia symptoms and the pain are difficult to cope with, ask your GP or neurologist for alternative medical treatments such as anticholinergic medication, muscle relaxant medication and painkillers.
Establish a daily routine
In these challenging and unusual times, having a daily routine is helpful as it creates a sense of normality. So, create a daily routine for yourself. Regularly engage in the self-care, cooking/eating, working, exercising, leisure activities, and social networking that will give your daily life a pattern of normality even when you are staying at home and self-isolating.
Stress and anxiety reduce the body’s immunity and ability to fight against viruses. While everyone is naturally worried about their own and their families’ safety during the pandemic, it is important to remain positive. Banish negative thoughts, and engage in positive self-talk, reassure yourself that you and your family will be fine. Think back about all the good times you had as a family and plan and imagine future pleasurable activities. Your mind’s eye allows you to travel in time and space, engage in pleasant visual imagery and imagine yourself in better times in exotic destinations. Laughter provides the body and mind relief from tension. Use the internet or your TV to watch comedy and to laugh out loud.
Stop obsessively tracking the news
While it is important to be uptodate with your government’s instructions about handwashing, social distancing and staying at home, but constant and obsessive tracking of the news about the impact of corona virus nationally and internationally may magnify the sense of ‘doom and gloom’. Be mindful of ‘overdosing’ on the corona virus news and limit yourself to one news programme every couple of days.
Keep in touch with friends and family
At challenging times, social support acts as a protection against the effects of stress on the body and the mind. Friends and family are a wonderful source of social support, allowing you to share and air your thoughts and feelings, to share memories, and to have a laugh. During this period of ‘staying at home’ and self-isolating, keeping in touch with your friends and family by telephone or Facetime/skype/zoom on a daily and weekly basis will also prevent a sense of loneliness for both you and them.
This will also pass. The pandemic is temporary and will end.