ALS: the cage of my body

Surely you are all familiar with the disease ALS (Amyotrophic Lateral Sclerosis) or even have someone you know or a family member who looks like it. This sickness It began to gain visibility in the media through the Ice Bucket Challenge.. An awareness campaign that consisted of pouring a bucket of ice water over a person’s head.

The objective was to publicize the disease and raise awareness in search of a cure, through fundraising. Once the Ice Bucket Challenge was completed, you had to nominate another person to donate 10 euros and complete the challenge in less than 24 hours.

However, although this medium led to the recognition and fight against this disease, has not been enough to truly approach the psychosocial problems faced by these people. That is why in the next lines I will try to make a little clearer what ALS is, what challenges patients and families face and, finally, how we can contribute our grain of sand to advance its research and approach.

What is ALS?

ALS is a neurodegenerative disease that leads to muscle weakening, loss of mobility in arms and legs and difficulty speaking, breathing and swallowing. The name of the disease, described for the first time in 1869 by the French doctor Jean Martin Charcot (1825-1893), specifies its main characteristics:

“lateral sclerosis” indicates the loss of nerve fibers accompanied by “sclerosis” (from the Greek σκλήρωσις, ‘hardening’) or glial scarring in the lateral area of ​​the spinal cord, a region occupied by nerve fibers or axons that are ultimately responsible for the control of voluntary movements.“amyotrophic” (from the Greek, a: denial; mio: ‘muscle’; trophic: ‘nutrition’), for its part, indicates muscle atrophy that occurs due to chronic muscle inactivityas the muscles have stopped receiving nervous signals.

ALS symptoms

The main symptoms associated with ALS disease are:

Muscular weakness.Lack of coordination.Paralysis.Abnormal muscle movements: fasciculations, spasms, jerks, cramps. Abnormal loss of muscle mass or body weight. Asymmetric progression depending on the patient: slow and prolonged or fast and brief. Both intellectual functions and the five senses are preserved.

What interests us most from the point of view of psychology are the symptoms that emerge in some cases related to alterations in affectivity. Crying, inappropriate laughter or, in general, disproportionate emotional responses as a reaction to the physical affectation. They are called emotional lability, which does not in any case denote that there is a genuine psychiatric problem.

Prevalence of ALS

The disease especially affects people between the ages of 40 and 70. and it is more frequently in men and between 60 and 69 years of age, although there are many cases described in younger patients, also affecting more men than women.

In Spain, it is estimated that almost 900 new cases of ALS are diagnosed each year (2 to 3 new cases per day) and that the total number of people living with ALS is around 4,000, although these figures may vary. The prevalence tells us that Some 4,400 living Spaniards will develop ALS during their lifetime. The best job we can do in this regard is to be attentive to the signs of ALS to prevent and treat prematurely.

Possible causes of ALS

Regarding the excitotoxic mechanism in ALS, it would be involved the main neurotransmitter that neurons use to generate excitatory signals, glutamate. An excess concentration of this in the extracellular space of the brain implies lethal effects on neurons. We can also find this phenomenon in cases of: cerebral infarction, epilepsy, and, probably, in Alzheimer’s and other related diseases.

For these purposes, one of the drugs most used in the treatment of ALS, riluzole, limits glutamate-mediated exitotoxicity. As? This drug binds to the neuronal receptors of this neurotransmitter and, therefore, blocks its action.

Psychological effects of ALS

As I mentioned before, one of the most devastating effects of this and other degenerative diseases is emotional lability. It could be defined as a symptom that occurs with some frequency and consists of uncontrollable emotions of laughter or excessive shouting.

It can be frustrating for the person as it can be caused by something really unimportant and be misunderstood by people. However, over time many learn to modify these emotional outbursts and avoid the situations in which they occur. At the moment, The use of AVP – 923, Neurodex® is being investigated for the treatment of this alteration.

This is where the psychologist plays a fundamental role, both for the patient and the family. In the case of the patient, the following will be useful:

He coping skills training to manage the frustration caused by the progressive functional loss that he is observing in his body. guided practice in emotional management and control so that you can express in a clear and effective way how you feel. guided breathing and relaxation, that you can later incorporate into your daily life. Encourage self-determination and empowerment when making decisions about the disease.

On the other hand, this self-knowledge and understanding of the disease by the patient himself will facilitate the work of the family or main caregivers. However, it would be highly advisable that they also receive professional psychological support to understand the process, both physical and physiological, that the person with ALS is going through; as well as how to manage your own emotions and thoughts about it.

Alternative therapies for ALS

Before making a decision to undergo therapy or alternative medicine treatment, the patient should Evaluate what are its true advantages and disadvantages. Although they do not have any scientific rigor, many people affected by ALS take this route; They do so by not finding a cure or relief from their symptoms that satisfies them through traditional means.

Being diagnosed with ALS is a devastating experience, which can sometimes lead us to take the wrong path out of desperation or the need for answers.. However, a bad decision in this disease can lead to irreversible consequences. Today, ALS has no cure: therefore, do not trust miraculous remedies and trust those – not without questioning them first – that can alleviate the symptoms in a harmless way, without side effects.

Alternative therapy covers all types of substances, diets, food supplements, mental and physical exercises and changes in lifestyle. Alternative therapies come from many disciplines and traditions. They include acupuncture, aromatherapy, naturopathy, homeopathy, iridology, macrobiotic medicine, reflexology, relaxation techniques, yoga, traditional Chinese medicine, hypnosis, massage, etc.

Creatine supplements against ALS

Recent experiences carried out with mice suffering from ALS (by genetic manipulation) and published in the journal Nature Medicine show: Creatine supplement managed to prolong his life in 26 days, compared to those mice that did not receive the supplement. Clinical trials carried out with sick humans demonstrated an increase in muscle strength by 10 percent.

They were also detected some undesirable effects when ingesting this supplement, such as an increase in body weight due to fluid retention and not due to an increase in muscle mass. As a consequence of this retention, muscle cramps, dehydration and heat intolerance were observed. Therefore, it is considered advisable to maintain an adequate regimen that compensates for these effects.

Other supplements to alleviate ALS

A current study has shown significant advantages when high doses of Coenzyme Q 10 (CoQ10) were administered to patients with muscular dystrophies in doses of 100 mg, 3 times a day.

Selenium is a mineral that helps produce Glutathione which is an enzyme (enzymes are groups of proteins that catalyze and direct metabolism) that acts as a natural antioxidant. Vitamin E and Selenium have shown some effectiveness in helping to improve the symptoms of patients with muscular dystrophies, improving strength, gait, the ability to get up from a sitting position, etc.

Animal experimental studies have been carried out on the effects of Methyl Cobalamin – a neurologically active form of vitamin B 12 – on terminal motor neurons. Nerve regeneration was observed in users who received Methyl Cobalamin. It is considered that patients can take 5 to 30 mg of Methyl Cobalamin per day.

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