“Greetings to all people with Parkinson’s disease in Spain and to all the countries participating in this project.” E.G.V
Monday 11th April 2021 marks World Parkinson’s Day– an annual coming together to raise awareness and funds to improve life with Parkinson’s. As part of the month’s awareness raising activities, project partners and Madrid Pilot site Parkinson Madrid held an interview with E.G.V, pictured who lives with the condition.
11th April is World Parkinson’s Day, what is it like to live with this disease?
Obviously it depends on the degree of affectation, the way you accept it and the people around you.
In all cases, it is hard because it is one of the many diseases that have no cure and we don’t know how and when it will develop and get worse.
In a way it “forces” you to do therapies, which other people do for entertainment, which leads to spending this time when you could use it for other things. Socially, it still causes amazement when you say you have Parkinson’s disease.
Which symptoms do you consider to affect your life the most?
Pessimism, memory disturbances or loss, muscle aches, stiffness in the limbs, sleep disturbances, difficulty in performing some manual tasks due to tremor, writing, reading, and difficulty in expressing any comments in person or over the phone, difficulty in speech..
Have your preferences changed as a result of the disease?
Yes, they have. For example, I feel the need to sleep more even if I don’t sleep afterwards. Now I feel the need to eat sweets more frequently but I reject of spicy food.. Above all, I want to live life a little “faster” and more intensely than before..
Do you think technology could help you to improve your quality of life?
Yes. Well-developed technology that is easy to understand, uncomplicated to install, and with results that can be communicated to the patient’s environment, helps for sure.
How long do you know PROCare4Life system for?
On 4 April 2021 I became a member of Asociación Parkinson Madrid and they showed me the system that was being used at that time in physiotherapy sessions.
I have participated once with PROCare4Life for a week and I am currently doing the same for a longer period of time at home.
And what do you think about it so far?
It is positive. I am looking forward to the further development especially the interaction between patient, health professional and caregiver, both on the street and at home in case of emergency. I don’t know what data and how it is stored in physiotherapy sessions. I look forward to the potential it seems to have.
Do you think it is useful? Why?
Yes it is useful now and may be more useful in the future when it is fully developed.
Knowing certain factors such as sleep, heartbeat, calories, and many others that can be known helps us, our caregiver and the professional, to see the situation and be able to make a decision if necessary.
How you see yourself using the system in your real life?
Do you want to continue using it / would you recommend it?
Yes, I want to continue using it, and yes I would recommend it!