How to cope with Coronavirus' restrictions. Psychologists’ advice for Huntington's disease and every families
The containment measures to control the spread of coronavirus have changed everyone's habits, including those of Huntington's families. The extension of the restrictive measures has determined huge changes in our daily lives and the difficulty reached balance risks now to fall apart . It is necessary to think about the consequences that a prolonged isolation can have on fragile people.
Anger, obsessive requests or greater sadness and self-closure are just some of the difficulties that family members and patients have to face every day. It is not simple to find fast effective solutions, but we can at least try to clarify some points and provide some advice that could be useful in solving the most frequent daily problems.
Stress is a physiological adaptation reaction to the environment: its often associated negative value depends a lot on the way we evaluate events. At this moment, for example, we can’t leave the house, , except for special needs. This is a situation that we cannot change, but we can choose how to use our time. In doing so, we could “rediscover” our time instead of “loosing” it.
In this period we are forced to live a different routine from the one we were used to. Now more than ever, it is important to keep some 'rituals' in our daily lives : having breakfast, taking care of our body, enjoying a good coffee, listening to the news and so on. In this way, we can alleviate that sense of unease and fear towards a different routine and restore dignity over our time.
Some practical advice
Use a clearly visible blackboard and place it in a central part of the house, divide it by days of the week and by different times of the day (e.g. morning / breakfast; noon / lunch; afternoon /snack; evening / dinner).
Plan the activities to carry on for each of these moments.
This will slowly help you create a new routine and decrease the discomfort associated with change and home restriction. Furthermore, the benefit deriving from this organization can become useful even after the end of quarantine.
Cook with other family members, remember that each task can be divided into single gestures and be adapted to all motor and cognitive needs.
Look at old pictures and relive the memories connected to it (where was it taken? With whom? Where? Etc ..) This moment is also an important cognitive exercise for everyone.
Board games or cards can be a great way to pleasantly spend part of the day, with a positive impact on the social relationship that is created during the game.
Listen to music or dance.
Perform manual activities, such as DIY or gardening.
It is important to keep in mind that the way of thinking can change a lot depending on the basic emotion, for example when we are afraid or anxious our perception of the risk greatly increases, it is a normal process, common to all human beings .
Let's remember not to under evaluate ours and others emotions : telling others "don’t be anxious" generally does not reduce anxiety and can make them feel misunderstood or even "inadequate". Emotions depend on our thoughts: we do not choose whether to be happy or sad, or to be angry or afraid. Emotions are never "wrong", but we can try to investigate the thoughts behind them: if I am afraid I probably feel threatened, if I am angry I probably think someone has done something wrong to me. In this way, if I am able to recognize the thought behind that emotion and I can validate it, I will be able to better manage my emotions.
Taking one's own spaces and respecting the other's spaces, let's not forget that we can have a different character, more or less sociable or reserved, let’s learn to respect the silences and moments of solitude, especially at this time, when forced coexistence can generate some inconveniences .
If a family member shows a lot of anger, you can readjust the strategies you were already using: first of all evaluate the situation: are you safe? If the answer is no, move away and possibly do not hesitate to ask for help. If the answer is yes, remember to keep a calm tone, maybe you can sit down to avoid to unintentionally contribute to the escalation of the situation. Try to understand the causes or if you know to get it away, it is not always easy for us to understand what causes a certain reactivity, what we can do and make the other understand that we understood how he feels at that moment.
Obsessive symptoms and perseveration: sometimes they can be incessant and cause tiredness and frustration in family members who feel tired and helpless towards the incessant and constant requests. In this case, it is important to keep in mind that we must choose the battles to fight, we decide what can be indulged and what cannot. In this, it is important to be strict, if after persistent requests you give up, the person understands that by insisting they can always achieve what they want and the request will become even more difficult to manage. Again, a useful strategy is to shift the focus on how the family members feel and involve them in some activity.
In these days the indications on the right and safe behaviours to keep, change in a few hours and if you are home you will easily keep the TV on and constantly listen to the news. Furthermore, we often try to find reassurance by overexposing ourselves to information, but by doing so we expose ourselves to uncontrollable dangers. The advice is to use this period of abnormality to get into the habit of applying a "balanced media diet": it is right to keep informed, it is good to do it through official sources and it is good to also choose a time of the day when to do it, for example you could decide to watch the evening news together and balance the exposure to the news.
Certainly the news on the evolution of the situation are important, but we have to learn to stop thinking about them constantly, let's concentrate instead on pleasant activities, thus feeding positive feelings.
It is important to explain the situation to our children without lying, by filtering the information without causing panic and make them understandable to them. Avoid exposing them to the news where the tones are often alarming. This can be the opportunity to teach them to consider the reliability of the sources and they can learn the importance of consulting the official ones.
Remember that children always have adults as a reference point and they recognize if we are concerned by the tone of our voice, the fluidity in gestures and many other small details to which they pay a lot of attention. If you are worried, your state will certainly affect their emotions, train yourself to remain silent for few minutes every day, this exercise will help you find some quiet and lucidity.
Routine is also good for them, it helps them to rebuild that sense of predictability that in this moment of change can be lacking; routine gives them the tools to increase their sense of safety. Discomfort is often communicated differently than adults, listen to them and make them feel that you are interested in how they feel and what they think. Whenever we talk about the emergency, let’s also talk about the future in a positive way, this is the only way to face any possible obstacle. We are all learning to find a new meaning out of this new difficult time, let's not live this time passively but let’s use our emergency and see this situation as a possibility for growth and improvement.
We can replace the walk in the park to which we are used, with some simple exercises of stretching and, perhaps with music. Many gyms are putting online videos with workouts or exercises, available for free, that can be done together with our family members.
Doing stretching regularly or coordination and balance exercises (here some advices) could make up for the temporary suspension of physiotherapy activities and have a positive impact on our psychological state.
On the cognitive side , we can continue to train ourselves both through the non-specific activities listed above but also through more structured and easily available exercises:
- A gym for the mind, book available on Amazon: https://www.amazon.it/palestra-Stimulation-cognitive-linv aging-cerebrale/dp/886137123X;
- Brain HQ, application available for smartphones and tablets. You can choose the training areas (Attention, Speed, Memory, Sociality, Intelligence, Navigation); some areas are free, others are accessible by subscription.
- www.brainzone.it - simple and stimulating information site on brain structure and functioning, with many interesting ideas on cognitive training.
-Some movements exercise: Video 1, Video 2
Remember that the decree of the Prime Minister provide for those with a mental fragilty and for children the opportunity to take short walks near home. With the recommendation, of course, to limit them to what it is strictly necessary.
-Contribution by Dr. Simone Migliore and Dr. Sabrina Maffi for the Italian League for Research on Huntington’s disease Foundation