Friday, September 29

Parkinson’s in first person

On April 11, World Parkinson’s Day is celebrated, a disease caused by the death of neurons that produce dopamine, known as the molecule of happiness.

Beatriz Valles-Gonzalez

BEATRIZ VALLES-GONZÁLEZ Director of the Degree in Speech Therapy, International University of Valencia

A few days ago I interviewed a patient I’ll call AL, a 58-year-old man who was diagnosed with Parkinson’s at 36. Too young, perhaps. Since the onset of the disease, his daily activities and professional work have been limited. In addition to the fact that his family life was completely transformed.

It stands to reason that everything in AL’s life turned upside down. Parkinson’s disease (PD) is a chronic and progressive neurodegenerative disease, with alterations in the function of the basal ganglia that cause a deficit in motor control. Its cause is unknown, which is why it is said to be idiopathic. The evolution of symptoms is generally slow, characterized by tremors, muscle rigidity, slowness of movement, difficulty swallowing and changes in posture.

But the thing does not end there. Added to the aforementioned motor symptoms are perceptual disorders, cognitive impairment, language limitations and affective behavioral changes (anxiety, depression, apathy). As a consequence, suffering from Parkinson’s has a significant impact on communication. That is why caring for these patients properly implies having an interprofessional team, in which the speech therapist is essential.

Faced with this reality, a couple of years ago the Spanish Federation of Parkinson’s and the Parkinson’s Observatory promoted the development of different care protocols, including the Protocol for Speech Therapy in Parkinson’s disease. The objective? As simple as it is ambitious: help the patient reach the best possible level of functioning in their communication and maintain the highest degree of autonomy possible.

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Deep brain stimulator and other therapies

Far from sinking living with Parkinson’s, AL admits that the years facing the different symptoms of the disease have allowed him to change for the better. She even admits: “I’m happier now, because Parkinson’s has helped me to be more organized, to value important things and to live more fully.”

However, for many people the onset of Parkinson’s can represent a strong impact that requires timely psychological support.

AL considers that his quality of life has benefited from the use of deep brain stimulation, since by achieving better tremor control, he has been able to continue driving his car, riding a motorcycle, traveling, enjoying the beach and playing golf .

The sooner the better

What is clear is that we should not make the mistake of thinking that care should only be initiated in the presence of certain symptoms. Today we know that the sooner a comprehensive care program is started that includes physical exercise, psychological support, diet, cognitive and language stimulation, the better quality of life patients will have.

AL has been attending speech therapy since 2014, where he has addressed various aspects: breathing, production of speech sounds, qualities of the voice and, more recently, linguistic-cognitive functions, such as the understanding of indirect language.

When we ask him about his experience, he assures us that the quality and quantity of the sessions of this type of therapy have allowed him to communicate better, which for AL is decisive in his quality of life. He admits that he has good days and other very complicated ones. But he is optimistic, and trusts that the team that cares for him (made up of doctors, psychologist, speech therapist, physiotherapist, among others) will continue to “pave the way for him”.

This article has been published in ‘The Conversation‘.

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