Life after an ALS diagnosis: How patients can plan for their future

This is a disease that starts with Very mild or mild symptoms such as muscle cramps, cramps, stiffness or weakness. Over time, infected individuals may Slurred speech and difficulty swallowing or breathing.

After clinical observation, rule out other disorders and refer to some studies such as electromyography, a Neurologist A diagnosis can be made: Amyotrophic lateral sclerosis, better known by its initials: ALS. Today is And A new way to approach itwhat Greater respect for patients’ rights and preferences.

La ELA Caused by death of motor neurons Responsible for controlling voluntary muscles. leads to development A progressive muscle paralysis of the affected person. Although there is no cure for this disease yet, there are some treatments available to relieve the symptoms and lead to a better quality of life.

But the diagnosis can fall like a “bucket of cold water,” as noted in the ad challenge “”The Ice Bucket Challenge“ and circulated between 2014 and 2015 to raise awareness about ALS. The move saw 17 million people pour ice water over their heads and upload videos to Facebook after raising more than $115 million in support of the investigation.

Hey A new way of approaching ALS is being promoted When patients and their loved ones receive news of a diagnosis, it is usually a year after the onset of symptoms.

“We work so we get the benefits Shared Care Planning. “This means opening up a space for dialogue between patients, their families and healthcare teams from the moment of ALS diagnosis,” he said. infobae Wilma TripodoroWho is a part of Atlantic Global Palliative Care Observatory from University of NavarraIn Spain.

Along with information with scientific evidence and expert explanations, “Patients have additional tools to predetermine which medical procedures they want to receive and to express their desires and social and spiritual needs. It’s a dynamic process and results can change with the evolution of the disease,” said Tripodoro, chair of the department of palliative care. Alfredo Lanari Medical Research Institute from University of Buenos Aires (UBA) and a member of Ballium Latin America, who published study In a special issue ZEFQ Dedicated to evidence and quality in clinical care.

In ALS patients, problems with pronouncing words, swallowing, and breathing may develop. Although it usually does not affect the senses or the ability to think.

“Patients can decide what treatments and care they will receive. For example, if they want home care, the type of breathing assistance or if they want to be fed through a tube placed in their stomach. Everything can be discussed at length before the moment comes,” emphasized a member of the expert. A network of security, rights and decisions at the end of Coniset’s life.

Talking about the progress of the disease is not easy for anyone. But Tripodoro recommends: “Since many patients arrive in situations such as malnutrition or respiratory distress, it’s important to plan the care you want to receive because they don’t decide in advance what kind of procedures they will receive. In emergencies, decisions are sometimes taken without consulting them or procedures they prefer are stopped.

When talking about ALS from the planning of shared care, “people’s autonomy to make decisions about health care is encouraged and honest communication between patients, their families and health professionals is supported.” said the expert.

In Argentina, there are three standards in place that provide a framework for shared maintenance planning. One is the Patient’s Rights Act Guarantees that everyone has the right to know about their health and possible treatments. You can also decide whether or not to receive treatments that will artificially extend your life.

There is also the possibility of manufacturing Advance order, is a voluntary document in which a person makes full use of their mental faculties, leaving written instructions of what they want when they are unable to express their wishes. There is also the right to change the methods after the evolution of the disease.

Since July last year, this too has been allowed National Congress The Preventive Care ActA model of care that improves quality of life for patients and families facing life-limiting or life-threatening illnesses.

“From the medical community, we are trying to create a shared care plan for ALS patients,” the neurologist said. Gisella Gargiulo MonachelliInspector of Health at Coniset Semik in Buenos Aires and membership Argentine Neurological Society, In conversation with infobae. “We encourage patients to make important decisions at the right time, so they don’t have to face crises because they don’t have the right information at the right time.”

Patient care teams are multidisciplinary: they include specialists in neurology, speech therapy, pulmonology, nutrition, neurorehabilitation, psychiatry, psychology, and nursing.

“When an ALS diagnosis is made, when we have to communicate it, we try to do it with scientific rigor, empathy and sensitivity. Although it’s possible that we, as doctors, have not been taught to deliver bad news by degree,” he commented.

Many patients are aware of the disease before diagnosis. Some people seek a second opinion. What is difficult at the first visit is today to predict how each patient will develop, as there are many clinical variables between each patient. “We still don’t have a biomarker that can predict severity,” he commented.

Dr. For Cargiulo Monacelli, patients and their families should consult and receive advice from specialists trained in this disease. “It is common for them to be exposed to false beliefs and offers of unproven treatments that cost a lot of money,” he warned.

Another recommendation is that both the patient and their relatives can use it Psychosocial support for disease modification. “Care in advanced stages of the disease may involve aggressive measures and high turnover of the patient. Everything must be discussed in advance, so that the patient’s autonomy is taken into account and the voices of family members and caregivers are integrated”, Gargiulo Monacelli said.

while, Alexander RodriguezNeurologist and Head of Neuromuscular Unit Institute of Neurosciences of Buenos Aires (INEBA)“Many times an ALS diagnosis is more devastating to the relatives than the patient.

The expert advised patients to ask about various treatment and care options related to speech, diet and breathing. Some may ask for no resuscitation techniques.

“From our role as doctors, we must respect what the patient says when he is clear. What should be clear is that even though ALS is incurable today, healthcare professionals are trying to ensure that the patient has the best quality of life and is not unnecessarily invaded.

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