Antes de hablar de lo ocurrido desde que en enero de 2014 me diagnosticaron esta enfermedad, creo que es necesaria una cierta mirada hacia atrás. Un ejercicio difícil de «desnudarme» como vengo haciendo a lo largo y ancho de este blog, un blog que estoy viendo que se va a convertir también en mi biografía, en la explicación de lo más importante de la historia de mi vida.  Vida que siento que probablemente se verá acortada por la aparición y los efectos de esta maldita enfermedad.  Y es que, como leí hace poco en un artículo internacional, los síntomas de la misma podrían contribuir al «acortamiento de la «vida útil» » de nuestra «maquinaria» (de nuestro cuerpo, de nuestros órganos).  No lo sabemos, pero suena coherente…ojalá no sea así.  Como todos los que estamos afectados, lucharé a fondo para ello.

Soy y siempre he sido una persona muy «emocional». Casi siempre he vivido con mucha intensidad todo lo que me ha ido ocurriendo a lo largo de mi vida y esto ahora me tranquiliza, me relaja y me enorgullece.  Prefiero haberlo vivido con intensidad aún y con los desgastes que me ha producido, que haberlo vivido con una cierta distancia.  Me gusta tenerlo todo bajo control y en este sentido mi gran enemigo siempre ha sido la gestión de la incertidumbre.  Ese miedo (seguro que en muchas ocasiones infundado) a perder el control es lo que probablemente siempre me ha generado problemas, un desgaste psíquico y físico que quizás, quien sabe, ha acelerado la aparición de esta enfermedad. Nunca lo sabré.

La preocupación por minimizar las incertidumbres normales de la aventura de la vida recuerdo que hizo que casi siempre se hablara de mi diciendo «está nervioso», «sufre demasiado», «se lo toma todo demasiado en serio», es «sufridor». Pienso que es cierto en gran parte y que quizás es el resultado o la consecuencia de como mínimo tres factores: un factor genético o de predisposición a ello, una buena educación pero con un grado de sobreprotección materno posiblemente un tanto excesivo, y a que he crecido ganándome a pulso cualquier pequeño avance o mejora (en lo académico, profesional, social) y con cada avance y la satisfacción del mismo aparecía un miedo a perderlo, a desandar el camino andado…

Con el paso del tiempo y la asunción normal de mayores responsabilidades, por estudiar en una escuela de negocios muy exigente, por empezar y desarrollar una carrera profesional en una Firma líder en su sector de actividad, por formar una familia y posteriormente tener hijos, ese nerviosismo anteriormente mencionado fue tomando cada vez más cuerpo y entonces fue cuando llegó la ansiedad.   Yo entiendo la ansiedad como la anticipación mental negativa de determinados acontecimientos futuros.  La entiendo como el tener un miedo excesivo a lo que puede ocurrir, en un ánimo inicial de controlar los acontecimientos futuros minimizando la incertidumbre, pero viendo más el vaso «medio vacío» que «medio lleno».

Con el fallecimiento repentino de un familiar muy cercano en febrero de 2002 y con el fallecimiento de mi padre en diciembre de ese mismo año, el grado de ansiedad recurrente se disparó, inicié un estado de angustia continuado y un riesgo claro de entrar en una depresión y tuve que recurrir a la ayuda de un profesional.   La somatización de esa ansiedad y angustia continuada me provocó problemas físicos relevantes durante tiempo (taquicardias, sudoración, dolores abdominales, migrañas etc) que se redujeron con medicación y con terapia psicológica.

En 2014, cuando me diagnosticaron, mi nivel de ansiedad era elevado pero soportable y gestionable, debido a que conscientemente lo asociaba al estrés consecuencia de mi responsabilidad profesional y a que la ayuda psicológica recibida años atrás me sirvió para conocer los múltiples síntomas de la ansiedad y, por tanto, a poder identificarlos y a poder (casi siempre) aislarlos cuando aparecían.  Esto se torció con el diagnóstico; imaginaros, ponerse a pensar en cómo controlar la incertidumbre de un proceso degenerativo, incurable y distinto para cada afectado…

El diagnóstico en sí me produjo una fuerte sacudida por lo inesperado del mismo, pero mi incredulidad y negación junto con la relativización de la gravedad del asunto (no implicaba un desenlace fatal a corto plazo, se trataba de algo más bien lento, con medicación para irlo soportando, una especie de cronicidad..) me permitieron pasar un 2014 razonablemente correcto en relación al estado de ánimo.

En 2015 cambiaron las cosas; la reducción de la carga de trabajo me ayudó pero aún y con ello los síntomas seguían con dureza y eso me producía un agotamiento psicológico.  No encontraba argumentos sólidos para compensar la tristeza y la ansiedad y la angustia que me producía ver que cada día dormía mal, me levantaba muy cansado, con sensación de mareo, muchas veces con fuertes dolores musculares y otros síntomas en los que no me voy a extender.

El mes de junio de 2015 supone un punto de inflexión por el empeoramiento relevante de muchos de los síntomas, la visita con el especialista y la introducción de la Levodopa en mi menú de medicamentos.  A partir de entonces, experimenté una mejora como consecuencia de nueva medicación que compensó parcialmente ese empeoramiento, pero no lo suficiente debido a la intensidad del agravamiento de los síntomas y a no poder descansar lo suficiente ni física ni mentalmente.   Vinieron las bajas médicas y lo que ya he ido explicando en otros posts en relación con la durísima realidad de tener que reconocerse uno mismo como incapaz desde la óptica profesional, el proceso de solicitar su reconocimiento formal, etc.

Durante 2015 y 2016 he tomado y estoy tomando medicación para tratar la ansiedad y he recibido y de vez en cuando estoy recibiendo ayuda de profesionales (psicólogos). Desde el reconocimiento de mi incapacidad laboral, como ya me he referido en otros posts, me encuentro en lo que yo llamó «fase de transición» en la que estoy redefiniendo mi vida y encontrándole un nuevo sentido, con nuevas motivaciones a pesar de las dificultades crecientes que voy teniendo.

Yo diría que mi estado de ánimo es muy variable, íntimamente ligado a cómo me siento físicamente al levantarme cada día; los episodios de tristeza repentina son numerosos y frecuentes y los gestiono como puedo, pensando en todas las cosas positivas que hago, que tengo, con ayuda de los que me quieren y me aprecian.

Cuando anteriormente describía que la ansiedad excesiva interviene en las actividades cotidianas, y en concreto generando episodios de congelación de la marcha, me he visto reflejado en dicha descripción debido a que ya me ha ocurrido en no menos de 5 o 6 ocasiones. Y por mi experiencia personal también estoy de acuerdo en que los esfuerzos infructuosos realizados para superar estas situaciones pueden generar sentimientos de rabia, tensión y pensamientos negativos, lo que a su vez alimenta el nivel de ansiedad.

En fin, la ansiedad como tal sigue ahí pero creo que cada vez convivo mejor con ella porque cada vez «le hago menos caso», debido a que estoy más centrado en la sintomatología motora, en intentar cuidarme y en la medida de lo posible, de disfrutar lo que pueda del día a día. Y también estoy centrado en tratar de aceptar algún día lo que me está ocurriendo…….

Y es que como decía al inicio del post, el estado de ánimo es un estado que muta y es algo muy cualitativo y, por tanto, es difícil hacer medias aritméticas de los últimos días, semanas o meses.

Justo hoy un blogger y compañero de viaje en la enfermedad de Parkinson, en redes sociales nos recomienda un artículo de prensa sobre el running, un artículo titulado «Adictos al running: ¿Cómo ayuda correr a las emociones y al estado psíquico?».  Para aquellos que podáis, queráis y vuestro médico os lo permita y aconseje, es una (otra) medida a tener en cuenta, dado que según dicho artículo correr reduce el estrés y mejora la autoestima. Yo en lugar de correr, hago pequeñas «caminatas» y efectivamente, cuando movemos nuestra «maquinaria» casi siempre nos sentimos mejor.

Para finalizar este post, dado que he incluido teoría en relación a los trastornos del sueño, como mera curiosidad ilustrativa y nunca para pretender sacar conclusiones, a continuación voy a indicar mis horas de sueño nocturno (total de cada barra), de sueño reparador (color más oscuro) y de sueño intranquilo (parte más clara de cada barra vertical) a partir de lo que me indica un dispositivo que me he puesto al acostarme durante 9 noches de este mes de octubre ( vertical son número de horas y horizontal son los días de octubre hasta el día 11 inclusive):

A partir de la información sincronizada de dicho aplicativo, a continuación detallo a efectos meramente ilustrativos (y nunca para sacar conclusiones de ningún tipo), los datos de los últimos 3 meses:

MES		OCTUBRE		SEPTIEMBRE		AGOSTO
DIAS DE OBSERVACIÓN:		9		20		15
MEDIA DEL SUEÑO NOCTURNO:		6:00		6:44		6:12
MEDIA DEL SUEÑO REPARADOR:		4:50		5:16		4:46
PORCENTAJE REPARADOR /TOTAL		80%		78%		76%

En mi opinión, no está tan mal, el Parkinson me hace dormir menos que antes, y por tanto, vivir más tiempo «despierto».  Viendo el vaso medio lleno…!!!

Hasta pronto !!!!

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 Hi friends,

This is a biographical post and a difficult post to write because a mood is just that, a state. And a state consider it an emotional feeling at a given time, that I think that form a multitude of experiences and small details, tangible and intangible (qualitative) time. When I refer to a state is an emotional feeling at a given moment of time I mean it is variable, and its variability will depend, among other factors, strong psychologically we are and the events and experiences that have experienced during the last hours, in recent days. And we are strong psychologically dependent, as humans we are all, of our life history and a multitude of factors; among others, will depend on the amount or number of issues that concern us and which we have no control and therefore its evolution not only depend on what we can do to solve them.

Let us first with some introductory theory that I consider essential to focus best concept and its problems, and then as at other times I will now comment on my personal experience. The information described below, until the section of my personal experience, is either a literal reproduction or summary of various sections included in the two sources of information cited (in bold) in it.

In previous posts I explained that Parkinson’s disease can present a set of motor symptoms and a set of non-motor symptoms.

As the White paper describes Parkinson in Spain, symptoms of Parkinson’s disease that do not directly affect motor skills are:

1. autonomic disorders (constipation, salivation, hypotension, incontinence, erectile dysfunction, sweating, sexual disorders, swallowing disorders, etc.).

2. neuropsychiatric and cognitive disorders (hallucinations, delusions, delusional, dementia, difficulty concentrating, to perform complex cognitive tasks or perform several tasks at once, etc.).

3. affective, emotional and volitional disorders (depression, apathy, anxiety, sexual dysfunction, etc.).

4. sleep disorders (sleep disturbances in REM sleep, insomnia, excessive daytime sleepiness, etc.).

5. disorders of other organs outside the central nervous system (osteoporosis, backache, respiratory problems etc.).

On the other hand, the document «The situation of patients suffering from Parkinson’s disease, their needs and demands,» edited by IMSERSO, outlined the main psychological effects associated with Parkinson’s disease, as well as the main issues to stress :

The Depression

«… When asked when were diagnosed with Parkinson’s is often say that one or two years before they already noticed something, or had gone through a difficult situation: separation, death of a child, a depression … a stressful trigger very strong … «(Psychologist).

Clinical manifestations of depressive syndrome more features in Parkinson’s disease are: the difficulties in controlling the crying, sadness and pessimism, accompanied by high levels of anxiety.

They may also be observed weight loss, inability to express pleasure, increased physical discomfort, low self-esteem and feelings of helplessness and worthlessness. worse execution of movement and intellectual performance is also observed.

«Depression can be difficult to detect Parkinson’s disease because some of these symptoms may overlap with the symptoms of the disease. That is, those affected by Parkinson’s disease but are not depressed may have psychomotor retardation and mental, lack of energy and fatigue, decreased initiative and activity, social isolation, indecision and attitude of excessive dependence, or sleep disturbance . Loss of interest and motivation is present in a significant number of sufferers of Parkinson’s disease without depression, in which mentally retardation is also observed «(Counsels on Psychology for patients with Parkinson’s disease and their families. Spanish Federation of Parkinson) .

• Depression is one of the most common psychological disorders in Parkinson’s disease. In fact, it is estimated that between 30 and 50% of those affected by the disease reaches this disorder.

• Suffering depression is associated with a greater rate of deterioration of cognitive and motor functions.

• They have been able to identify certain characteristics with respect to those affected who suffer. Women are more likely than men to suffer.

• On the other hand, those who had gone through depressive periods before having the disease are more likely to repeat this type of episodes.

• People who start their disease at an early age are also more likely to be exposed.

• they are also more likely people in the symptoms of the disease predominate on the right side.

• a higher incidence It is also detected in those with symptoms of stiffness and difficulty initiating movement.

The anxiety

«… And as go through a situation of nerves, they were note immediately Motor level: begin to tremble, stiffen, paralyzed …» (Psychologist)

Often people affected by Parkinson’s disease experience feelings of anxiety, tension and nervousness. In fact, one in three people affected may suffer bouts of anxiety of varying intensity: from anxiety, even panic attacks. Panic attacks are sudden manifestations of the disease. Such statements are equally intense, and develop over a specified period of time. They may come to suffer from one in five patients.

• Panic attacks can also come generated by the onset of motor symptoms, such as freezing of gait.

• Another possible manifestations of anxiety is felt by people in their social relations.

• Thus, the person may feel anxious when forced to receive help from others.

• You can also experienced anxiety as a result of insecurity with which the person lives his social relations, resulting, at this point, vital to the projected social image.

• Sometimes this anxiety becomes social phobia, which prevents the affected by the disease live their lives normally, avoiding going outside or perform other activities, as well as anticipating exaggerated fear and excessive fear development possible symptoms (such as locks) or negative reactions from other people.

• In short, excessive anxiety involved in daily activities:

– In their communication relations: speech problems.
– Mobility: episodes of freezing of gait.
– In fact, the unsuccessful efforts of the person to overcome these situations can create feelings of anger, tension and negative thoughts, which in turn feeds the anxiety level.
– Anxiety and distress usually occur together.

Factors that generate depression and anxiety in people affected by Parkinson’s disease are varied:

• Changes in the neurotransmitters serotonin and norepinephrine, chemicals that transmit information between cells and are involved in regulating mood.
• Effects of medication.
• Psychosocial factors such as the acceptance that makes the person of the disease and how it faces the future; or successive changes of life experienced as a result of the disease. Changes involving stress and due to its extension in time generate high levels of emotional stress at home, and serious interference in social, family, work and emotional life of the person, with the consequent deterioration of health and worsening quality of life.
• Sometimes on a combination of all these factors.

Psychotic

«… What we do have are hallucinations and delusions of persecution, jealousy, fear, see things, but reason perfectly, those who have this dementia is subcortical, typical of Parkinson type, always know who you are, never lose their identity and maintain the episodic semantic memory … «(Psychologist).

About 6 out of every hundred people affected by Parkinson’s disease have some kind of psychotic symptoms. Although it is not a very high proportion, such condition is more prevalent than in the rest of the population. Sometimes, understanding these kinds of symptoms is very difficult for people living in the home with the person affected by the disease, which can lead to problems of coexistence.

• The most frequent and early manifestations are visual hallucinations, consisting of perceptual disturbances without a real stimulus (but, however, the person perceives it).
• Another possible manifestation are delusions, consisting of a false belief that the person has with conviction despite arguments or explanations of others.

These symptoms may be caused by:

• The anti-Parkinsonian drugs.
• They can also be due to the disease itself.
• As a consequence of such items as:
– An advanced age,
– A greater severity of illness,
– The presence of severe depression,
– The deterioration of intellectual abilities.

Sexual dysfunctions

«… Another totally different profile, especially in the case of young people: inability to control impulses, problems of pathological gambling, hypersexuality, malpractices, draw attention interrupt to talk …» (Psychologist)

Two out of three people affected by Parkinson’s disease may suffer some form of sexual dysfunction. These malfunctions may include:

• Decreased sexual activity: lack of sexual desire, impotence or frigidity.
• hypersexuality and also behaviors may appear, behaviors that also generate special discomfort in personal life, the couple, family.

The causes of these dysfunctions are also diverse:

• As a result of drug therapy.
• Changes in the autonomic nervous system.
• emotional factors and communication problems with the couple; united, sometimes to depression and anxiety problems.

Sleep disorders

«… The behavior by the patient is highly variable; You can also sleep badly, sleep interruptions, haywire at night … «(Psychologist)

Sleep disorders can also cause psychological disorders. Two out of three people affected by Parkinson’s disease suffer from sleep disorders. initially consist of a rhythm disturbance, but later in insomnia that is due to different causes: lack of mobility, depression, nocturnal myoclonus (jerking) or restless legs syndrome.

The most frequent alterations are referred to beat insomnia to catch the first dream, or have a very fragmented sleep, or waking up too early and not go back to sleep. Another sleep problems afflicting the 15% of people affected by Parkinson’s disease is excessive daytime sleepiness as a result of not getting enough rest at night, but also because of the drugs. They are also common problems such as vivid nightmares, night and night screaming vocalizations. Sometimes these problems are related to medication, especially vivid dreams and nightmares.

The treatment of emotional problems

«… The intervention is to listen demand, redirecting demand towards something reasonable and depending on demand, make an assessment of mood, anxiety, depression, and see coping with the disease, their personal situation, see a little his life journey, see your goals and work your expectations and coping with the disease and family relations … «(Psychologist)

• Upon detection of any of the above-defined symptoms is important consultation with the neurologist; thus, the specialist will determine if necessary adjust medication or analyze whether there is other problems that must be addressed. Sometimes consultation with the neurologist possible solve emotional problems that generate serious problems of coexistence with the person affected by the disease.

• In other cases, these disorders to be treated by psychiatric treatment with specific medications for these problems.

• Psychological therapies are especially recommended when the emotional disorder has a psychological basis.

By supporting and psychological treatment helps the affected person to accept and understand their illness person, providing resources to enable responses to emerging issues in her daily life. Psychological treatment can be both individual and group-groups of mutually support the latter being of particular interest to generate a shared experience and personal enrichment space.

The importance of age

«… The impact tends to be higher among young people, many of them still have small children and are developing an important professional stage …». (Representative Association)

Age also is a factor in weight when taking the disease.

• People who have been found to have the disease at a young age, usually facing the diagnosis of the disease more dramatically because the whole series of plans and personal projects, professional, economic … they were developing at that time or they thought to develop over the coming years. However, young people affected have a much more marked than the older, when search and apply resources sociosanitary nature trend as being more related to the active life require a range of support.

• However, when the disease is diagnosed in older people tend to assume greater resignation, because at this age is normal that a person will develop a disease, «are things of the age.»

My experience in relation to the mood

Before we talk about what happened since January 2014 I was diagnosed with this disease, I think a certain look is needed back. A difficult exercise of «undressing» before you as I have been doing throughout this blog, a blog I’m seeing it will also become my biography, in explaining the most important story of my life. I feel that life will likely be shortened by the appearance and effects of this damn disease. And, as I read recently in an international article, the symptoms of it can easily contribute to «shortened» the useful life «» our «machinery» (our body, our organs). We do not know, but it sounds consistent … hopefully not so.   I will fight for it thoroughly.

I am and have always been a very «emotional» person. I have almost always lived with great intensity all that has been happening to me throughout my life and this now reassures me, relaxes me and I’m proud. I prefer having lived intensely still and scuffs that has occurred to me that having lived with a certain distance. I like to have everything under control and in this sense my great enemy has always been managing uncertainty. That fear has (surely in many unfounded times) to lose control is what has probably always generated me many problems, a psychic and physical wear that perhaps, who knows, accelerated the onset of this disease. I will never know.

Concern for minimizing the normal uncertainties of adventure remember life that made almost always talk about me,  saying «he is nervous», «suffers too», «takes everything too seriously,» is «suffering». I think it is true to a large extent and that perhaps is the result or consequence of at least three factors: a genetic factor or predisposition to it, a good education but with a degree of possibly excessive maternal overprotection, as I have grown earning a pulse any small progress or improvement (in the academic, professional, social) and with each advance and satisfaction of it appeared a fear of losing it, to retrace the path taken …

With the passage of time and the normal assumption of greater responsibilities to study at a bussinessmschool in very demanding efforts to start and develop a career in a leading firm in its industry, to start a family and then have children, that above nervousness was taking more body and then when anxiety came. I understand the anxiety as a negative mental anticipation of certain future events. I understand it as having an excessive fear of what might happen in an initial mood of controlling future events minimizing uncertainty, but seeing the glass «half empty» more than «half full».

With the sudden death of a close relative in February 2002 and the death of my father in December of that same year, the degree of recurring anxiety skyrocketed, I began a state of continued anguish and a clear risk entering a depression and I had to resort to the help of a professional. Somatization of that anxiety and continued anguish caused me physical problems during relevant time (rapid heartbeat, sweating, abdominal pain, migraine etc) were reduced with medication and psychological therapy.

In 2014, when I was diagnosed, my anxiety level was high but bearable and manageable, because consciously associated with stress because of my professional responsibility as psychological aid received years ago helped me to understand the multiple symptoms of anxiety and therefore able to identify and power (almost always) isolate when they appeared. This twisted with the diagnosis; imagine, start thinking about how to handle the uncertainty of a degenerative, incurable and different for each affected process …

The diagnosis itself gave me some shaken by the unexpected, but my disbelief and denial along with the relativization of the seriousness of the case (not involving a fatal short-term outcome, it was something rather slow, with medication Irlo supporting a kind of chronicity ..) allowed me to spend a reasonably correct 2014 in relation to mood.

In 2015 things changed; reducing workload but still helped me and thus symptoms were harshly and that gave me a psychological exhaustion. Found no strong arguments to offset the sadness and anxiety and anguish that caused me to see that every day slept badly, I woke up very tired, feeling dizzy, often with severe muscle pain and other symptoms in which I will not to extend. June 2015 represents a turning point for the relevant worsening of many of the symptoms, a visit to the specialist and the introduction of Levodopa drugs in my menu. From then on, I experienced an improvement as a result of new medication that partially offset this decline, but not enough because of the intensity of the worsening of symptoms and not be able to get enough rest physically or mentally. They came sick leave and have already been explained in other posts regarding the harsh reality of having to recognize oneself as incapable from the professional point of view, the process of requesting recognition, etc.

During 2015 and 2016 I have taken and I am taking medication to treat anxiety and I have received and occasionally I am getting help from professionals. Since the recognition of my work incapacity, as I have already mentioned in other posts, I am in what I called «transition phase» in which’m redefining my life and finding him a new direction with new motivations despite the difficulties I’m having increasing.

I would say my mood is very variable, closely linked to how I physically feel when I wake up every day; sudden episodes of sadness are numerous and frequent and I manage as I can, thinking about all the positive things I do, I have, with the help of those who love me and appreciate me.

When previously I described that excessive anxiety involved in daily activities, in particular generating episodes of freezing of gait, I have been reflected in this description because it has already happened to me in no less than 5 or 6 times. And my personal experience I also agree that the unsuccessful efforts to overcome these situations can create feelings of anger, tension and negative thoughts, which in turn feeds the anxiety level.

Finally, anxiety as such is still there but I think increasingly survive better with her because every time «I make less case» because I’m more focused on the motor symptoms, in trying to take care of myself and as far as possible, you can enjoy the day.

And as I said at the beginning of the post, the mood is a state that mutates and is very qualitative and therefore it is difficult to arithmetic mean of the last days, weeks or months.

To finish this post, because I have included theory in relation to sleep disorders,  as merely illustrative curiosity and never to pretend to draw any  conclusions, then I will tell my hours (total of each bar) Night sleep, sleep ( darker) and restless sleep (lighter of each vertical bar part) from indicating me a device that I’ve put to bed for 9 nights this October (vertical are number of sleep hours and landscape are the October days until day 11 inclusive):

From synced information from this application, then I detail for illustrative purposes (and never to draw conclusions of any kind), data from the last 3 months:

 

2016 MONTH	October	September	August
NUMBER OF DAYS OBSERVATION	9	20	15
NIGHT SLEEP HOURS AVERAGE (A)	6:00	6:44	6:12
SLEEP HOURS AVERAGE (B)	4:50	5:16	4:46
PERCENTATGE AS (A/B)	80%	78%	76%

In my opinion, it is not so bad, Parkinson makes me sleep less than before and therefore live longer, «awake». Seeing the glass «half full» … !!!

Many thanks !!