Every year around this time (my birthday), I have a recurring thought. How will I be in a year? Will I still be functional? Will I be autonomous? Will I be able to continue enjoying life? Will I be able to continue to support my children?
Life has been a test, difficult, but a test.
As I enter the 15 years of Parkinson's disease, despite all the constraints, all the difficulties, I still haven't let myself be caught by it, I mean, the energy I use to try to manage and control the disease, for now, is not yet superior to the energy I have available everyday to live. I believe that the various changes I have made in my lifestyle have contributed significantly to me not being currently in a position of disability, which would bring back so many situations of anxiety, depression, and in the end, becoming an endless spiral. I am proud of my choices and options, many of them the result of constant research, as well as some intuition. Thus, changes in the way of eating, supplementation, incorporation of physical exercise, especially running, and the conscious attempt to maintain social hygiene and accurate stress management have made the management of this disease the adventure of a lifetime. One of the options I took a year and a half ago has turned out to be the choice of a lifetime, the focused ultrasound surgery I did in Switzerland, which treated some of the symptoms, especially on the operated side, leaving me clearly more functional than I was before. It treated the symptoms, unfortunately not the disease, which continues to evolve, especially now on the non-intervened side. A neuropathy that has worsened makes, especially in the phases when the medication is having less effect, something like taking a key out of your pocket becomes an almost impossible task, opening a bottle, tightening a screw, writing a text on the mobile phone are equally Herculean. Constant limping, foot and leg dragging, makes life a little more complicated for me. Adding to all this, the classic symptoms of Parkinson's, tremor, dystonia, lack of strength, intestinal dysregulation, urinary urgency, slow movement, make each task, no matter how simple, interminable and take three times longer than normal. The medication is still helping, with increasingly reduced times of effect, with increasingly shorter windows of effectiveness, but it starts to be little, very little.
However, I face the future with hope and positivity, I have no other option. I know that I am in a position that few can be in situations identical to mine. Just two weeks ago I managed to run 4 kilometers straight. I just can't do it anymore because the pain I have in my lower back, which started about 3 months ago, doesn't allow me to walk more than 500 meters without it starting to bother me, some days it bothers me, other days it barely lets me walk. I've already passed the osteopath phase, I've been to the doctor, I've had injections, nothing works. Now it's time to do the MR and try to understand what needs to be done, to try to find a more definitive solution. Running is essential for me, for my health, to help control the progression of the disease, to clear my head, to maintain my social hygiene, to socialize, to be in the midst of my street family, of people I love so much., Due to this circumstances, I haven't been able to be as present as I would like. I managed to be present at the celebration of the sixth anniversary of Hora do Galo, I failed the race, but I kept the spirit. And this cake Dina, topped it off again, it was so good… 312 uninterrupted weekly 10 kms runs are something, and a part of them are on my curriculum and in my heart. These are the things that help me to face the future, to escape a wheelchair or a bed. Despite all the limitations, I make a point in continuing to work, I miss it, it gives me something to do, and I know that, although not as effectively as a few years ago, my work at school continues to be valid as a member of the technological support team. As I have been able to take other projects forward. It's been exactly one year since, together with Elsa Valente, my partner and company, we opened “Essência”, the hairdressing and aesthetic space where she now develops her profession. I wrote a book, in order to be able to help and give some clues to people in situations similar to mine, and also as a way of motivating physical activity, which was promptly embraced by the Évora City Council, as well as by the researcher and neuroscientist Rita Guerreiro , who, together with her husband, run a world-renowned research center in the area of neurodegenerative diseases, and who kindly wrote the preface, but who continues to be dragged along by Cordel d'Prata, the publisher with whom I agreed to work.
This year, I launched another project with Elsa again, The Sketchers House, a local accommodation in the center of the city, with an artistic way, in a partnership with Évora Urban Sketchers, in a concept of Private Art Gallery, and which until now has had fantastic feedback from our guests.
We have other ideas in the pipeline,as long there is time, will, capacity and so the disease allows, to continue to resist and especially to continue this adventure that has been to enjoy life, especially to accompany the growth of Carolina, Miguel and my little rebel João.
How will I be a year from now? I don't know, I just know that the ones that passed have been well worth it!
FUS in Switzerland
Brief PTT FUS update
