I leave here a copy of a reflextion i posted on my FB
Sorry for the english, i'm not a native speaker
"January 13, 2023
Exactly 2 years ago today my life changed radically. Exactly 2 years ago today I was in the city of Solothurn, in central Switzerland, undergoing an innovative surgery, in the hands of a fantastic medical team, with the hope of improving my quality of life. A “clean” surgery, without cuts, holes, scalpels or scissors, in which the surgeons were not even in the room, but in the next room, in front of a huge lot of screens and other equipment. It's been exactly two years since I regained some of my essence, with brain surgery that gave me back control of the left half of my body, control that had been stolen from me by Parkinson's, or rather, that was being taken away by the disease, in a painful process, inexorably slow, in which the body loses faculties, which are manifested through an endless collection of symptoms that add up, in a more or less intense degree, some more visible, others practically invisible, but not for that reason less felt, less limiting or less painful. Yes, because this is a painful disease, but more than the physical pain, it hurts the pain of the inability, of the limitation, of slowly watching small things get out of our reach, like buttoning a shirt button or taking out a coin or a key out of the pocket, go for a walk or stay focused on a particular subject.
That's why the intervention I did 2 years ago, whose acronym is called PTT FUS, made such a big difference. It is not a cure, there is no cure for Parkinson's, but it has given me a quality of life by reducing some symptoms, some less, others more, especially on the side that was operated on. While that side remains stable, the symptoms began to be more noticeable on the other side, in a natural evolution of the disease, with the tremor being more difficult to control now (on the treated side it is practically non-existent), as well as the dyskinesias, which had completely disappeared, now randomly and almost imperceptibly are reappearing.
But even so, with the help of more than 15 daily doses, between medications and supplements, the exercise that I'm still able to do, conditioned by low back pain that has limited me a lot in that regard, a diet that I try to keep as specific as possible, and an effort to maintain a lively and active social life, with integration into work and maintaining activities that allow me to maintain group relationships. Obviously, the fact of keeping several symptoms minimally controlled helps to facilitate the management of all these points, as well as the opposite is also true.
I always had a positive attitude towards the disease, less at the beginning, more resilient as it evolved, and from the moment I accepted the situation and no longer tried to hide it, it became a little lighter. However, over the years, with the worsening of the symptoms, I entered a dilemma, does my effort and the attitude that I have shown towards the disease not give me the right to feel sick? I feel that people look at me as a fighter, and in a way I feel the same way, after all it's been 15 years, 15 years of an adventure that has been managing this disease, and although my life is now a shadow of normality, I continue to think that I have no right to complain, compared to so many cases that I have encountered who are completely disabled after half a dozen years. However, although I don't feel incapacitated, I am quite limited, I have my rhythm, it takes me three times as long to do any task, cooking a meal is three hours in the kitchen, getting ready in the morning is an eternity, which then goes on cascade throughout the day, so I needed 3 times longer days to manage a normal life, which is further aggravated by some off periods throughout the day, when my productivity plummets, my energy fades and I don't I rarely have to occupy the sofa in the teachers' lounge for 20 to 30 minutes waiting for the levodopa to take effect. More than administrative schedules, like any Parkinsonian, I have my medicinal schedules. I live like a drug addict, waiting for the next dose to take effect. I currently have 4 daily doses of levodopa, with a coverage of 2 to 4 hours each, which is never the same in terms of effectiveness, in an attempt to keep the dopamine levels more or less stable in the brain, so that the body has more movements fluids, manage to move in a minimally normal way, and manage to control the tremors that start, now mainly on the right side, the side that was not surgically treated. However, maintaining these doses of about 500 mg of levodopa daily with this time of illness continues to be a victory, as my neurologist says, I carry medication samples, especially compared to other people who take up to 200 mg every 2 hours from waking up to going to sleep. In addition to movement management, dopamine is essential in the brain's reward circuit, that is, it is necessary for us to feel pleasure, such as when we eat chocolate, learn something new or enjoy a kiss, which is intrinsically linked to the motivation, and to the ability to work, and I have all this mixed up.
But life, which destined this for me, fortunately gave me the ability to react and the luck of having made the right choices and options, and it has placed fantastic people in my path, starting with my children, my company and companion, Elsa, my street family who are my running mates, whom I have already accompanied today on the usual 10 km of the Hora do Galo by bicycle (me, not them, they ran), just as I am lucky with my work partners who do an effort to understand my difficulties and are constantly offering help, whether from the school board, fellow teachers and operational assistants. Also recently, a series of people with the same problem as me, to a sharing space provided by Young Parkies Portugal, driven by Carminho, where Early Onset Parkinson's patients found a place to share, vent, of enlightenment, conviviality, integration, so necessary for people in our condition, and where fighting and special people can be found, accompanied by other people as special as Josefa and Joana.
I think the disease has made me a better person, more attentive, more capable of putting on the other's skin, more critical as well. I hope that it will continue to allow, even though I know that with ever-increasing difficulties, to continue to savor this very special thing that is life."
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