As part of HEREDITARY’s commitment to citizen participation, OBSERVA conducted this interview to explore how people living with neurodegenerative diseases experience care and technology in their daily lives, under Work Package 6 activities. In this second part of a three-part full interview, prof. Dolores Ayala Velázquez reflects on the role of caregivers and the impact of different technologies in managing symptoms, offering a unique perspective that bridges lived experience and scientific understanding.
How would you describe the role of caregivers (family members or professionals), and what do you think are their main needs today?
Caregivers must be approachable, prosocial, and empathetic individuals willing to accompany the patient, listen to them, make them laugh, and help them feel good most of the time, without neglecting their caregiving responsibilities. These include assisting with daily activities, administering medications and meals on schedule, always with the patient’s consent and after consulting them, so they feel that things are being done on their own initiative, without any imposition. Caregivers should avoid any attitude of superiority, authority, or vanity, and always strive for the patient’s peace, tranquility, and physical, mental, and emotional comfort.
I would like to share an anecdote. When my daughter suggested hiring a nurse for the days she was busy teaching, I agreed, though not entirely convinced. I felt it would restrict my freedom and independence, and, in other words, make me feel more vulnerable. This led me to avoid speaking to the nurse during the first few sessions and to appear as serious as possible. I felt increasingly uncomfortable with this attitude until I realized the nurse wasn’t to blame. We had hired her to ensure I had everything I needed: food, medication, supplements, exercise, and, most importantly, companionship. So, I couldn’t be ungrateful and needed to change my approach. Two or three sessions later the nurse told me that I had scared her because I was so organized, perfectionist and rigid and that she had thought she was not going to continue treating me, but since the other people around me treated me so well and I them, she thought, “maybe she will treat me well too.” I apologized and told her I had noticed her fear around me. Since then, when she comes to give me my medicine or food, she says, “I know fear makes me make mistakes, but I know they don’t make you angry and that they make you laugh, so I’m not worried about making mistakes anymore.” Sometimes we have deep conversations; she’s patient with me and interested in what I think and feel. We appreciate each other; she says she’s always learning from me, and I, for my part, am grateful for the lesson in humanity she gave me by showing up and putting up with my indifference.
From your experience, what technologies have had a real positive impact on the lives of patients with neurodegenerative diseases?
I can talk about the work my swallowing therapist and I are doing. She’s a true specialist in swallowing, phonation, speech, and articulation therapies. She frequently attends conferences, seminars, and workshops to stay up-to-date. As for me, being unfamiliar with neurodegenerative diseases, I’m eager to read everything I can find on the subject, and I also conduct ongoing documentary research, even using artificial intelligence, though I consult carefully to avoid low-quality materials. This is the context of our interaction. Now I’ll move on to the technology we’ve been implementing.
First, I used TENS to stimulate (either tense or relax) some of the muscles in my mouth (especially my tongue), face, and neck. Knowing the correct mode, frequency, and intensity to use, we achieved excellent results, both in relaxing (I like to say untying knots) the muscles and in providing them with the necessary tension to function correctly. It’s a slow and gradual process that doesn’t leave a permanent effect because there’s always the progressivity of PBP, which moves regardless of our efforts to stop it. However, I can say that although we haven’t managed to overcome it, we have managed to contain it, so that some muscles in my face and mouth have remembered what they should do and perform it after a small stimulus.
Another very useful tool is ultrasound, which prepares a muscle area so that the muscles respond on their own or to stimulation from another instrument, facilitating the production of sounds and the appropriate swallowing action.
The VitalStim is a device with several functions that essentially assists swallowing to make it more efficient, as well as the production of sounds, suction, and airflow, all aimed at facilitating swallowing and supporting the movement of the muscles involved in speech sound production.
We also use low-frequency laser to stimulate different areas of the brain, strengthen the development of healthy motor neurons, and promote their connection with specific muscles, such as the vagus nerve, which has numerous connections in the face, limbs, and digestive system. When the laser is used in an upward motion on the motor area, I noticeably reduce saliva production in my mouth. However, when it’s used in a downward motion, saliva spurts from all the salivary glands, and I have to employ certain strategies to control and manage it. On the other hand, when used on my forehead, it gives me a feeling of well-being and tranquility that lasts for a couple of days.
To remove some of the phlegm and saliva during the day, I use a device that suctions it out (aspirator). At night, I also use a CIPAP that continuously provides me with air to prevent sleep apnea, which could damage my brain.
I forgot to mention that we also use simpler mechanical instruments like hot or cold massagers, which have had a very positive impact on the responses of my soft palate and tongue, loosening it from the tight, hard, and contracted state it has at the beginning of some sessions. This has allowed it to extend laterally, touch and move beyond my upper and lower teeth, and even reach my lips—a remarkable feat considering it was paralyzed and seemed impossible to move. Among these tools are also the resistance bands we use to exercise my neck muscles, keeping them active and able to properly support my head. They also help move phlegm in my throat, making it easier to swallow and articulate some phonemes that are very difficult for me.
In my opinion, PBP and ALS in general deserve more attention from neuroscientists, not only to declare that what they do is right, but also to deepen the knowledge of these neurodegenerative diseases and the contributions of technology to the management and control of symptoms and even to the control of the disease itself.
I recently met a neurologist who uses Repetitive Transcranial Magnetic Stimulation Neuromodulation (there are two or three other methods), who claims it can be effective in modifying nerve activity in specific areas to relieve pain or restore brain function. He gave me a preliminary test and found responses to the device’s high intensity. We are going to continue the treatment with four weekly sessions for a total of four weeks. I don’t yet have experimental evidence of its benefits, but I expect to have it next February.
Therefore, I can affirm that the knowledge, use, and objective analysis of the results of employing different technologies for the care of neurodegenerative diseases is an important path to advance in their treatment, with a view to slowing them down and controlling them.
Are there any risks or limitations in the use of the technology that, as a patient and scientist, you consider important to point out?
Yes, there are, especially if the person applying it is not aware of the optimal conditions of use, such as its calibration, optimal range of its variables as well as the duration of each application, errors can be made such as tiring the patient or subjecting them to excessive tension, and what is worse, applying it incorrectly, causing some irreversible damage.
These risks may be more frequent because some therapists and doctors, despite claiming to be specialists, are unfamiliar with the physics and operation of some of the devices they use. For example, when we began working with deaf children at Oirá y Hablará, we discovered that many were using hearing aids so poorly adjusted that the intense, low-frequency sound bothered them. Instead of helping them hear, these devices were actually increasing their hearing loss. Having the devices at full volume, without considering the frequency range and maximum intensity required to help them hear speech sounds, was causing greater and irreversible damage to their auditory nerve. The brain has a very difficult time weaning itself off receiving bombardments of sound that are completely useless for auditory rehabilitation.
Another example I experienced: a lab technician and a speech therapist were suffocating me, and instead of realizing the difficulty they were putting me in and attending to my requests for help, they complained that I was “not cooperating”.
I believe the most advisable course of action is to conduct a formal, collaborative investigation, with the participation of the entire team of specialists supporting the patient, including the patient, their caregivers, and family members. This investigation should include a precise account of the patient’s initial condition and any adverse factors that may influence the outcome, in order to monitor and address them continuously and promptly. The patient must be the priority, followed by the disease, the technology, and the specialist.
Furthermore, the evaluation of procedures and results at each stage of the research process is essential.
In order to obtain reliable results that can be extended to other cases with similar situations, it is essential to have sufficient high-quality, objective and subjective (we are dealing with people) and positive data on the cases studied, taking into account the age, physical, mental and psychological condition of each person with whom we have worked, as well as the optimal conditions for using the equipment, without trying to reach areas closer or further away from the previously studied intervals and in which there is a guarantee that new users will not be harmed by the use of the technology.
How do you experience the issue of privacy and the management of personal and health data in the context of research and new technologies?
In the case of a formal research project, I assume that the privacy and management of personal and health data will be handled with absolute discretion, so I haven’t worried about that aspect. However, there is a risk that the data could be used for non-scientific purposes, for example, to highlight the benefits of a particular procedure, a technological device, or to promote personal or brand prestige. In that case, I would be concerned and would view everything with caution, demanding that the agreed-upon conditions for conducting the research be met.
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