Because of the visibility of his symptoms, Céline G.'s husband no longer enjoys company, which is also difficult for her.

A causa della visibilità dei suoi sintomi, il marito di Céline G. non ama più la compagnia, il che è difficile anche per lei.

Céline G.: Sì, lui non voleva che si vedesse e che si sapesse. Non si divertiva più così tanto quando era in compagnia.
Intervistatore:  E poi? 
Céline G.: Poi subentrò la stanchezza e non aveva più voglia di fare niente, ma non per un po.

Visibilità dei sintomi

En raison de la visibilité de ses symptômes, le mari de Céline G. n'apprécie plus la compagnie, ce qui est également difficile pour elle.

Céline G. : Voilà, du fait qu'il ne voulait pas que ça se voie et que ça se sache, donc qu'il avait déjà perdu un peu du plaisir d'être en compagnie.
Intervieweuse: E puis?
Céline G.: Et puis moi aussi, du fait que la fatigue s'installe. Et puis, plus envie de rien faire,  mais pas un temps.

Visibilité des symptômes

Wegen der Sichtbarkeit seiner Symptome ist Céline G.s Mann nicht mehr gerne in Gesellschaft, was auch für sie schwierig ist.

Céline G.: Ja, weil er nicht wollte, dass man es sieht und weiß, also hatte er schon ein bisschen den Spaß an der Gesellschaft verloren.
Interviewerin: Und dann?
Céline G.: Und dann ich auch, weil die Müdigkeit einsetzt. Und dann wollte ich nichts mehr tun, aber für eine Weile nicht.

Sichtbarkeit der Symptome

Corine

Céline G.: That's it, because he didn't want it to be seen and known, so he had already lost some of the pleasure of being in society.
Interviewer: And then?
Céline G.: And then me too, because, fatigue sets in. And then, I don't feel like doing anything for a while.

Symptom visibility

Affected persons and relatives consider it fortunate when the disease progresses slowly and the usual life can be largely maintained for the time being. The increase in impairing symptoms (e.g. restlessness, severe forgetfulness), for example when the effect of medication wears off or when new symptoms are added over time, is a drastic moment that often requires or triggers adjustments (e.g. at work, in therapy, in the personal environment). Relatives report hoping that the condition of the ill family member will remain good for a long time and are concerned when it becomes apparent that this is not the case.

The progression of the disease

Parkinson's disease is a progressive neurodegenerative disease affecting both the central and peripheral nervous system. Symptoms are very heterogenous and include motor (e.g., tremor, slow movements, muscle rigidity) and non-motor symptoms (e.g., depression, sleep disturbances, anosmia). Parkinson's disease can lead to a loss of autonomy and self-esteem, altered relationships and social isolation.Communication impairment is also common and is associated with both motor and cognitive disturbances. Many people who suffer from Parkinson's disease increasingly lose their ability to work and their mobility is more and more restricted. Parkinson's disease is a challenge not only for the patients, but also for family caregivers, who must balance their own needs with caregiving responsibilities. Two important treatment options for Parkinson's disease in the advanced stage are deep brain stimulation and the Duodopa® pump. Deep brain stimulation is a brain modulation technique that works like a heart pacemaker and requires neurosurgical intervention. The Duodopa® pump consists of a continuous infusion of levodopa-carbidopa gel via a pump across the intestinal wall into the intestine.
For the DIPEx module on Parkinson's, we conducted 32 interviews with people with Parkinson's disease and family caregivers. Interview excerpts in the form of texts, video or audio clips, as well as drawings, make it possible to experience how the disease and its therapy affect the daily lives of those affected and their relatives.

La malattia di Parkinson è una malattia neurodegenerativa progressiva che colpisce il sistema nervoso centrale e periferico. I sintomi sono vari e comprendono sintomi motori (ad esempio tremore, movimenti lenti, rigidità muscolare) e non motori (ad esempio depressione, disturbi del sonno, anosmia). Il morbo di Parkinson può comportare una perdita di autonomia e di autostima, alterazione delle relazioni e isolamento sociale. Anche i disturbi della comunicazione sono comuni e sono associati a disturbi motori e cognitivi. Molte persone con malattia di Parkinson sono sempre più limitate nella loro capacità di lavorare e nella loro mobilità con il progredire della malattia. La malattia di Parkinson rappresenta una sfida non solo per la persona affetta, ma anche per i familiari che la assistono e che devono trovare un equilibrio tra le proprie esigenze e quelle del paziente.
Due importanti trattamenti clinici attuali per la malattia di Parkinson avanzata sono la stimolazione cerebrale profonda e la pompa Duodopa®. La stimolazione cerebrale profonda è una tecnica di modulazione dell'attività cerebrale che funziona in modo simile a un pacemaker e richiede un intervento neurochirurgico. Con la pompa Duodopa® , un'infusione continua di un gel di levodopa-carbidopa viene erogata tramite una pompa attraverso la parete intestinale nell'intestino tenue.
Per il modulo DIPEx sulla malattia di Parkinson, abbiamo condotto interviste con 32 persone affette da Parkinson in fase avanzata e con i loro familiari. Gli estratti delle interviste, sotto forma di testi, video o clip audio e disegni, mostrano come la malattia e la sua terapia influenzino la vita quotidiana delle persone colpite e dei loro familiari.

Malattia di Parkinson: stimolazione cerebrale profonda e pompa Duodopa

La maladie de Parkinson est une maladie neurodégénérative progressive touchant plusieurs régions du système nerveux central et périphérique. Les symptômes divers comprennent des symptômes moteurs (p. ex. tremblements, mouvements lents, rigidité) et non moteurs (p. ex. dépression, troubles du sommeil, anosmie). La maladie de Parkinson peut entraîner une perte d'autonomie et d'estime de soi, une modification des relations et un isolement social. Les difficultés de communication sont également fréquentes et sont associés à la fois aux troubles moteurs et cognitifs. De nombreuses personnes atteintes de la maladie de Parkinson se voient restreintes dans leur mesure de travailler ainsi que dans leur mobilité au fur et à mesure que la maladie progresse. La maladie de Parkinson présente un défi non seulement pour les patient·e·s, mais aussi pour les proches aidants, qui doivent concilier leurs propres besoins et leurs responsabilités en matière de soins. Pour les formes graves de la maladie de Parkinson, les deux principaux traitements sont actuellement la stimulation cérébrale profonde et la pompe Duodopa®. La stimulation cérébrale profonde consiste à moduler l'activité cérérbrale tel le ferait un pacemaker pour le cerveau, impliquant une intervention neurochirurgicale. La pompe Duodopa® consiste en une perfusion intrajunale continue de gel de lévodopa-carbidopa via une pompe traversant la paroi intestinale.
Le module DIPEx sur la maladie de Parkinson rapporte les expériences de 32 personnes qui soit sont atteintes de la maladie de Parkinson et ont été traitées par stimulation cérébrale profonde ou par la pompe Duodopa®, soit sont des proches aidants. Des extraits d'entretiens sous forme de texte, de vidéo ou de clip audio, ainsi que des dessins donnent un aperçu de la façon dont la maladie et son traitement affectent le quotidien des personnes atteintes de la maladie de Parkinson ainsi que celui de leurs proches.

Maladie de Parkinson : stimulation cérébrale profonde et pompe Duodopa

Morbus Parkinson ist eine fortschreitende neurodegenerative Erkrankung, die das zentrale und periphere Nervensystem betrifft. Die Symptome sind vielfältig und umfassen motorische (z.B. Tremor, langsame Bewegungen, Muskelstarre) und nicht-motorische Symptome (z. B. Depression, Schlafstörungen, Anosmie). Morbus Parkinson kann zu einem Verlust an Autonomie und Selbstwertgefühl, veränderten Beziehungen und sozialer Isolation führen. Kommunikationsstörungen sind ebenfalls häufig und sowohl mit motorischen als auch mit kognitiven Störungen verbunden. Viele Menschen mit Parkinson sind im Verlauf der Krankheit zunehmend in ihrer Arbeitsfähigkeit und ihrer Mobilität eingeschränkt. Eine Parkinson-Erkrankung ist nicht nur für die Betroffenen selbst eine Herausforderung, sondern auch für betreuende Angehörige, die ein Gleichgewicht zwischen eigenen Bedürfnissen und den Bedürfnissen der Patienten finden müssen.
Zwei wichtige aktuelle klinische Behandlungen der fortgeschrittenen Parkinson-Krankheit sind die tiefe Hirnstimulation und die Duodopa®-Pumpe. Die tiefe Hirnstimulation ist eine Technik zur Modulation der Hirnaktivität, die ähnlich wie ein Herzschrittmacher funktioniert und eine neurochirurgische Intervention voraussetzt. Bei der Duodopa®-Pumpe erfolgt eine kontinuierliche Infusion eines Levodopa-Carbidopa-Gels via eine Pumpe über die Darmwand in den Dünndarm.
Für das DIPEx Modul zu Parkinson haben wir Interviews mit 32  Menschen, die in einem fortgeschrittenen Stadium an Parkinson erkrankt sind und betreuenden Familienangehörigen geführt. In Interviewausschnitten wird in Form von Texten, Video- oder Audioclips sowie anhand von Zeichnungen erfahrbar, wie sich die Krankheit und deren Therapie auf das tägliche Leben der Betroffenen und deren Angehörigen auswirkt.

Parkinson-Erkrankung: Tiefenhirnstimulation und Duodopa-Pumpe

Parkinson's disease: deep brain stimulation and duodopa pump

Kristina

Yolanda

Only after several months does a SPECT provide Céline G. and her husband with certainty about the diagnosis.

Céline G.: So at the beginning, it took a long time to get the final diagnosis because there was this presumption of Parkinson's disease. But until the PET scan was done, we weren't really sure that this was it. So there was no treatment that was put in place. And so it lasted a few months. It was during the summer, so it was quite difficult.
Interviewer: What was difficult?
Céline G.: We don't know if that's what it is. There's no treatment that's being put in place, so you have to carry on living knowing that, well, the ceiling is already falling in when you're told the diagnosis. And then, in fact, there is no treatment in place. So you continue to live with these symptoms without any treatment that actually starts?
Interviewer: And when was the diagnosis formally made?
Céline G.: The disease was declared in April and we spent the whole summer. I think it was September or October. When we did it, we got the results of the PET scan.
Interviewer: What did they tell you?
Céline G.: They were able to certify that it was really that. Because at the very beginning before the neurologist said it was Parkinson's, we had done MRT. There had been MRTs done, and then, it's true, everything was positive, so there were no symptoms. So we thought, well, it's nothing serious. In the end, positive ? normal ?
But then, negative, everything was negative. I don't know how to say. There was nothing alarming on the MRTs, so he had done a cervical, I think, and then a cerebral. Everything was good. No symptoms. We thought, well, I'm fine. It's not something serious. We thought of many things. He fell on his arm, so he thought it was just from that fall.
Interviewer: Was it during the summer or before?
Céline G.: This was before, at the very beginning. That's it. And then afterwards, there was this diagnosis, but we weren't sure, as there was no PET scan and as there had no PET scan been done. So there were days when we said yes, that's it, that's the disease, and then other days when we said no, that's not it. There was a lot of denial during that time.
Also where he was saying no, no, it's due to the fall. It's just something in my arm or shoulder. It's the fall I took on the ice.
Interviewer: Was it during the summer or even after, when the PET scan had been done?
Céline G.: That was when he hadn't had the PET scan yet. Afterwards, when the diagnosis is confirmed with the PET scan, then everything is turned upside down again.

Imaging techniques

The diagnosis of Parkinson's disease is made on the basis of the neurological examination findings and, if necessary, by means of imaging procedures (e.g. SPECT). A positive L-dopa test also indicates a typical Parkinson's disease. For those affected, the path from noticing the first signs to an official diagnosis of Parkinson's varies. Although, according to the literature, the first formulated diagnosis is correct in the majority of cases, patients and relatives in the early stages of the disease also report medical misjudgements, misdiagnoses and mistreatments. A prolonged uncertainty about the cause of the symptoms is experienced as difficult and the receipt of the diagnosis of PD on the one hand as devastating, but on the other hand also as a relief that there is clarity. Disputes with cost units about the assumption of diagnostic examinations are also reported.

The path to diagnosis

Céline G. describes the uncertainty during the time until the official diagnosis of Parkinson's disease, which was also accompanied by difficulties on the part of the health insurance company.

Céline G.: And then after that, as long as the initial exams were normal. So you tell yourself it's nothing bad. And then it took a very long time before we could do this PET scan. It was a question of insurance and then just a question of administration. The administration is very cumbersome.
There are a lot of things that don't work. That's quite normal, because there's the fight against the disease, for one thing. It's something that comes at you, and you really have to tame it and then put it into action. It's an upheaval, and on top of that there's all this administrative harassment that I find equally burdensome. 
Interviewer: And the bureaucratic hurdles, was that before the diagnosis or after?
Céline G.: Then it was already bad from the beginning because just to be able to really make this Parkinson's diagnosis, due to the fact that he was young, that there was no family history. There were some doctors who told us, "No, this is not Parkinson's" [Molson]. So, we were really like one day that's it and the other day it's not. So, even my husband, he finally said no, no, it's not. And then we were told that we could really confirm with this PET scan whether it really was or not. And finally the insurance companies refused to pay for the test. So that was the only option we had to get that answer. And then that was it. 
Interviewer: Despite the indication of a neurologist?
Céline G.: And it was necessary for a professor to write and challenge it and say that it was really the only way that we needed this test for it to be accepted. And that was really several months later. So that's that time period that's also very, very difficult.                                                             
Interviewer: Or do you not really know where you are going?
Céline G.: You don't know if there is a disease, if there is no disease, if it is serious, if it is not serious, so you are a little bit in stand-by mode. So, that's the beginning of the administrative harassment.

Waiting for diagnosis and financial uncertainty

For Céline G., a world collapses when her husband's diagnosis is confirmed.

Interviewer: And as you say, it's turned you upside down. How did you feel about this diagnosis?
Céline G.: Like the ceiling is coming down, like a storm. I don't know, it's hard to live with. Especially since he had seen these MRIs, which were normal. So we said to ourselves, well, there's nothing serious. Even my husband said to himself, there's nothing wrong [...]. It all started with this fall, he had a fall on the ice. And then, following that, he had his shoulder and arm problems.
At one point, we said to ourselves, it's really due to the fall. It's nothing. It's nothing serious. Even the MRI was normal. So there you have it, we said to ourselves, it's nothing serious, so we're not too confident.
[...]
Céline G.: Yes, when the diagnosis was made, we asked ourselves, what happens next? It's true that it's scary. And then you go on, think about everything, settle in, sit down and never move again. Then you say life is over. Or you try to be positive.

First hope, then shock

Receiving a diagnosis of Parkinson's disease is a drastic moment. Affected people and relatives report that it pulls the rug out from under their feet and that they need time to process the news of the diagnosis. The fact that the disease is progressive can lead to an initial relief when one does not yet notice much of the symptoms and they develop slowly. In the same way, however, the fact of progression is also perceived as threatening because it is hopeless and the future is unknown. An approachable and open way of medical communication and detailed information about the disease and its treatment options are important, but do not take place for everyone.

Getting the diagnosis

The fact that Céline G.'s husband registers early with the IV helps him later.

Céline G.: And then what improved a bit afterwards was that there was a disability file that had been set up from the beginning. But just a little. It's very slow. These are procedures that take a long time. And then it was actually the case that he was still working 100 % at the beginning. And then he could go down to 80 %. But he still worked, it was 80 %, but at least on five days, so he still had to be happy. 
It was a loss of profitability, which was recognized, but he still had to be there 100 %. So his fatigue was always there. And then, as the disease progressed, he was able to go down to 50 %. His quality of life improved significantly because he was able to rest for a while.

Early registration with the IV

The symptoms of Parkinson's disease also affect the working life of the person with the disease. Depending on when the first limiting symptoms appear and on the demands of the respective occupation, the effects vary. While some sufferers can continue to work as before for a few years after receiving the diagnosis, others have to reduce the workload, adapt the range of tasks or even stop working prematurely. Making the necessary arrangements for registering with the IV in good time can relieve the burden later on. Being open about one's illness is helpful, but not everyone handles it in the same way. In general, help and support from colleagues as well as the employer's understanding of one's situation are important, especially if certain activities become difficult or can no longer be done to the same extent or at the same pace.

Work

Céline G. and her husband need time to think before he agrees to the operation.

Céline G.: And then they said yes. So if you agree, we can meet in January and then in February, we can operate on you. I remember. I said, ah no, ah no, no, that's not possible. Because for me it was very sudden. It was too quick, too abrupt. No. I had to think, even though I knew we were going to do it. But it was too quick. I said to myself, I don't know, but maybe we had plans for a vacation. And then I said to myself, it's before the vacations. That was something that happened before [...] yeah, that was too, too fast. So I said, but that's too soon. And then we discuss it. At the beginning of the year you let the summer go by, then you do it in the fall, that's what we did.
Interviewer: Did your husband convince you? Or the neurologist?
Céline G.: I think it was just necessary that we had a bit of time to talk about all this. And then because I basically knew that we were going to do it. I was positive about doing it, but it was just that, first of all, it was too fast. But then when we let some time pass, when we discussed it again, when we repeated the consultations that were going to include all the tests that were going to be done. Then it started slowly. And then it was good.

Cooling-off period

The reasons why people decide to have deep brain stimulation are usually related to the heavy burden of the symptoms of Parkinson's disease and the hope that these will become less severe after the procedure and that the quality of life will improve. Before agreeing to have the surgery, people need time to think about the risks, also together with their family, and also get a second opinion.

Decision making

Céline G.'s husband has more appetite again.

After that, things started to improve again. The stimulation gave him an appetite again, as he stopped taking the medication that had caused him to lose his sense of taste. So he enjoyed eating and within a few months he put on weight again. He has put the kilos back on, so that is already an improvement.

Appetite

Patients who have experienced a significant improvement in their symptoms describe the time immediately after the surgical intervention for deep brain stimulation as a flight of fancy, similar to the feeling of being reborn. How quickly the improvement of symptoms through deep brain stimulation sets in, how long it lasts and whether there is any improvement at all varies from individual to individual. The reported effects are varied and include improved mobility, a decrease in tremors, improved speech expression or even improved facial expressions. On the other hand, a slight, short-lasting or complete lack of improvement in symptoms often leads to feelings of disappointment among those affected and also their relatives. While some patients do not need to take any or less medication, others continue to take the same amount of medication as before the deep brain stimulation.

Céline G.

Symptom visibility

Video Interview

Related experiences

Other experiences by Céline G.

Céline G.