Nearly 150,000 people in Spain alone live with Parkinson’s, the second neurodegenerative disease in the world and the one whose incidence is increasing at the highest rate today. According to data from the Spanish Society of Neurology, the prevalence of this pathology has doubled in the last 25 years, and many cases could still remain undiagnosed.
One of these patients is Rufino, 56, a member of the Spanish Parkinson’s Federation (FEP). He received the diagnosis about five years ago, in 2018, after experiencing difficulties in one of his favorite activities: play the guitar.
“My son came to ask me if it was his fault?
In fact, Rufino, as he explains to 20minutos, experience a good part of the symptom range of the condition. “I have rigidity and motor symptoms (bradykinesia, tremor, postural disturbance), which are the ones most people know about Parkinson’s. Then there are the lesser-known non-motor ones; Sleep disorders (I fall asleep anywhere), confusion in memory…”.
Thus, when he went to the neurologist with these signs, he says, “they tested my hand movement, tremor, balance, gait…”. Then came the diagnosis: “I got it wrong. It hit me like a jug of cold water, because I didn’t expect it. In my case there was no family history, no one had had it.”
“My family was hurt. They went through a moment of depression. My son came to tell me that it was his fault, for playing soccer with him so much. Now they know what the disease is and they have more or less assimilated it,” he adds.
“Music for me is very positive”
“In my case,” he describes, “the main thing is rigidity. Now I’m medicated, we have more or less found the right medication, but I have moments that we call ‘on’ when I’m good and ‘off’ when I’m bad. In the afternoon I end up ‘off’ a bit; When I have this problem, we talk to the neurologist and the medication is adjusted”.
“When I manage to sleep four hours straight it’s a miracle”
“There is also sleep disorder. When I manage to sleep for four hours straight it’s a miracle, I hit a ridge in my teeth,” she adds.
“I have always played the guitar as a hobby, and my arm doesn’t work the same anymore. Also, since Parkinson’s has affected my memory, before I knew thousands of songs and now I’m barely able to play a whole one”, he exposes. “But hey, I keep doing it my way: in fact, music helps me a lot, for me it’s very positive in this disease”.
“And I loved going to play soccer with my kids. We played soccer a lot, and we had to leave it”confess.
“I am assimilating my pathology well”
Fortunately, there are currently several options for treatment with the potential to significantly improve the quality of life of people affected by Parkinson’s.
Precisely, Rufino receives several of these therapeutic strategies: “Of course, we have pharmacological measures; And thanks to the Association, we have other lines such as physiotherapy, hydrotherapy, occupational therapy, speech therapy, music therapy, cognitive stimulation, and yoga, tai-chi, theater workshops”.
“I’m looking forward to the association. It alleviates the symptoms, and I want to because I need it and it helps me. Cognitive stimulation helps me a lot with memory, and physiotherapy, physical exercise is always good for us (especially walking, without overdoing it)”.
“I see what tomorrow holds for me and I accept it quite well”
A fundamental aspect is understanding the disease and feeling in contact with others affected: “I am assimilating my pathology well. The Association helps me a lot; I see in other members what tomorrow holds for me and I accept it quite well“Precisely, in this sense, he emphasizes to other people who receive diagnoses like his the support that this type of organization can provide: “The associations have a lot of help to give us.”
“They make comments about whether I’m high or drunk”
Despite the fact that neurodegenerative diseases such as Alzheimer’s or Parkinson’s are conditions well known to the common people, those affected still have to face difficult situations and unpleasant on a daily basis.
Rufino exemplifies this with some comments he has received. “Once I was passing a pedestrian crossing and a driver told me ‘if you want I’ll get off and help you pass’. Or because of the issue of sleep, people see you asleep and make comments that you will be drunk or high; I was even robbed nearby once.”
“There have also been cases to the contrary,” he adds. “Have I ever been asked if I have Parkinson’s and they gave me the seat On the bus, for example. That time, the person explained to me that his father had had Parkinson’s and that he had recognized it when he saw me walk.
“I do not hide, and many times I answer that I have Parkinson’s. They ask for your forgiveness, they ask for a thousand apologies, but they have already released it to you.”
Regarding the reason for these signs of incomprehension, Rufino believes that it is “because they only relate it to the tremor. They don’t see anything else about Parkinson’s; sometimes when I say that I have the disease they tell me that I do not tremble. There is still a lot of unknown.”
“A role that public health does not cover”
In fact, the problem goes beyond a lack of awareness. As Estefanía Roselló, head of Communication at the FEP, explains, “many times associations play a role that public health does not cover”.
“Many people with Parkinson’s go to public health and are cared for by a general neurologist. And it is not the same for a person with Parkinson’s to be treated by a general neurologist, who does not know the disease well, than to be treated by a specialized one,” he continues.
“Y there is the problem of time. Already before, but especially since the pandemic, the time it takes to give you a diagnosis, the time it takes to give you a first appointment or the time it can take to give you medication often means a worsening in the quality of life of people. It is important that times are respected in society but also from health care, because in the end everything has an impact on the person “, he concludes.