Ulli F. parla apertamente della sua malattia.

Dove lavoravo, dicevo sempre: "Se mi chiedete qualcosa, vi dirò cosa ho". Perché, prima di tutto, mi porta più lontano e, in secondo luogo, non mi chiedono più nulla.
[...]
La gente lo sapeva. Beh, non ero più il più veloce e sì, forse a volte si accorgevano con la voce che c'era qualcosa che non andava. Ma l'ho detto a tutti e quindi ero aperto. E credo che questa sia la cosa migliore, dire apertamente: questo e quello.

Comunicare la malattia

Là où j'ai travaillé, j'ai toujours dit "si vous me demandez, je dis ce que j'ai". Parce que, premièrement, ça me fait avancer et, deuxièmement, ils ne me demandent plus ensuite.
[...]
Les gens le savaient. Bon, je n'étais plus le plus rapide et oui, peut-être qu'ils ont parfois remarqué avec la voix qu'il y avait quelque chose qui n'allait pas. Mais je l'ai dit à tout le monde et c'est comme ça que j'ai été ouvert. Et je pense que c'est la meilleure chose à faire quand on dit ouvertement que c'est ceci ou cela.

Annoncer la maladie

Ulli F. geht offen mit seiner Erkrankung um.

Ich habe dort, wo ich gearbeitet habe, habe ich immer gesagt, "wenn sie mich fragen oder so, dann sage ich was ich habe". Denn das bringt erstens mich weiter und zweitens fragen sie nicht mehr.
[...]
Die Leute wussten es. Gut, ich war nicht mehr der Schnellste und ja, vielleicht haben die manchmal auch mit der Stimme bemerkt, dass da etwas nicht in Ordnung ist. Aber ich habe es allen gesagt und so war ich offen. Und ich glaube, das ist das Beste, wenn man ganz offen sagt, das ist das und das.

Mitteilen der Erkrankung

Yolanda

Where I worked, I always said, "if you ask me or something, I'll tell you what I have". Because first of all, that gets me further and secondly, they don't ask any more.
[...]
People knew. Well, I wasn't the fastest anymore and yes, maybe sometimes they noticed with the voice that there was something wrong. But I told everyone and so I was open. And I think that's the best thing, to say quite openly, that's this and that.

Communicating the disease

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

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

Ulli F.: I didn't notice that much either, I have to say, at the beginning it was still a very small tremor. And another aspect, why I also felt this disease, or thought that something could be, is that I also went jogging a lot. And I always practiced that and tried to stay on the ball, and this jogging, I also did three, four runs every year. 
Interviewer: Do you still do that? 
Ulli F.: That was the B [place] run. No, no, I don't do that now. Around 2010 I did the last runs, that was the G [place] run, they have one like that through the city of G [place] or also in B [place] in the canton of Fribourg, is such a run. And there I suddenly just had - I didn't know why - just five to ten minutes more. I didn't actually run any worse, I had the feeling. And that was also one of the reasons why I reported it. Or also when I was swimming, I noticed that when I swim, I always suddenly get to the right side.

Changes in sport

Parkinson's disease begins insidiously and often shows only very mild symptoms at the beginning. Initial symptoms are often still vague and unspecific. Those affected report the first impression that something is wrong and the difficulty in classifying this, but also more obvious symptoms. Relatives talk about seeing the disorder from their perspective and also about how they have experienced communicating their perceptions to family members with the disorder.  Early signs include difficulty seeing, difficulty concentrating, or fatigue. More obvious symptoms include tremors or limitations in mobility, such as not being able to walk at the usual pace. The symptoms are often noticed by sudden difficulties in doing everyday things. The first changes are also noticed during sports. Relatives observe the first changes in motor skills or behavior.

First signs of change

In Uli F.'s case, the effect of the medication wears off and he can no longer walk well.

And then I was always treated with these pills. And so in 2012, 2013 and 2014, the symptoms just became very noticeable again, striking. And I myself sometimes didn't even notice it, and I'm amazed when today people come and say, yes, that's insane, how that went. Now there is actually nothing left, almost nothing. And at that time I could no longer walk properly and so on.

The effect of the medication wears off

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

Interviewer: Do you feel that Parkinson's disease has changed your life?
Ulli F.: Yes. Well, of course it has. I just think that when I go on my little excursions again in spring, I notice that I am slow [...]. After retirement [...] I would like to maybe do some hiking again, that I can't do any more, big hikes. That is already a limitation. And I regret [that], but I have to accept it. Yes, that's the way it is. But life doesn't change Parkinson's disease in principle. Well, you just have to try to get certain things back into your head.

Movement activities

People with Parkinson's disease often experience restrictions in their usual activities as the disease progresses. Depending on the progression of the symptoms, some things, for example, can only be done slowly, no longer to the usual extent (e.g. sport, work, social contacts) or not at all, or no longer without help (e.g. writing by hand, getting dressed). Accepting the changes in everyday life is not always easy and is sometimes accompanied by feelings of missing and loss.

Limitations

Ulli F. can no longer type so quickly and sometimes makes mistakes.

The symptoms have already manifested themselves. Also writing on the keyboard. Yes, that was already evident at that time. It wasn't so good any more. For example, that's something I've noticed more and more recently. Because when I send certain programmes with the computer, for example, and I want to write them quickly, firstly it's slow and secondly [...] I sometimes miss or something. And if it's really stupid, I suddenly press a button and the text is gone. That's something that irritates me at the moment. And with the writing, I'm trying to write more again, but on the other hand, there's also this tendency among people with Parkinson's that their writing becomes so illegible.

Keyboarding

Uli F. reaches the point where increasing the medication no longer helps.

Then I actually, received the therapies, or rather they always said, now these pills and then this dose and so on. At first it was always the XXXX and then others were added. And so I did quite well in this phase.
[...]
Over time, it increases and then the end of the line comes, you can't take any more pills.

Increase in dose and number of medicines

The symptoms of Parkinson's disease can be alleviated by drug therapy with various groups of drugs (e.g. levodopa, dopamine antagonists). At the beginning of the disease, the effect of the medication is usually good and leads to an improvement of the symptoms in many people (e.g. better mobility, reduction of muscle stiffness). However, as Parkinson's disease progresses, the effect wears off and the symptoms of the disease reappear. The subsequent intake of additional medication or increased doses often causes difficulties for those affected because of the increasing side effects and interactions (e.g. uncontrolled movements, hallucinations) and is also perceived as too much per se. Which medication is taken in which dose varies and depends on various factors (e.g. age, stage of disease, side effects).

Effects and side effects

Ulli F. describes the stages of the operation.

Interviewer: Did you notice any differences between the back surgery and the brain surgery? Was it a different experience?
Ulli F.: Yes, it was a bit different. Although I was almost less positive about the back than the brain.
Interviewer: So, brain surgery was better?
Ulli F.: Brain surgery, I just let it wash over me. That was clear. And what should also be said is that "there is not just nothing wrong with the head". But I didn't see that as negative. [...] I almost fell asleep there too. But that probably still happens to people a lot. You heard the first part, and you were often awake during the first part of the operation. And the second day was actually a normal operation, where they packed the wiring of the transmitter and the energy source.
Interviewer: Yes. And that was one day after the brain surgery?
Ulli F.: Yes, one.
Interviewer: Okay, great.
Ulli F.: I don't know if there are hospitals that do the whole thing in one day, but others do it in two [days].

Procedure

The surgical procedure to implant the electrodes in the brain as well as the pacemaker in the upper part of the body usually takes between five to six hours and is partly done while the patient is awake. Some centres perform the surgery as a two-stage procedure, where the stimulator itself is implanted in a second surgery. Those affected remember certain situations and impressions during this part of the operation (e.g. being asked to count out loud; noises), some of which were unpleasant (e.g. having a steel ring put on; jaw clenched). Relatives report that the time of waiting until the operation is over is nerve-wracking for them and the relief is great when it is over. For relatives, the first sight of the newly operated person can also be frightening, as the external appearance of the head has changed (e.g. shaved skull).

The surgery

Ulli F. sometimes remembers a sound he heard during the operation.

Ulli F.: What I remember from the operation is the sound when this ceiling [skullcap] is sawn open. It sounds so bad, worse than a power saw.
Interviewer: So you mean during the operation?
Ulli F.: Yes.
[...]
Interviewer: And you think about this sound from time to time?
Ulli F.: Yes, when I hear a saw.

Noises during the operation

Ulli F. reports that there is a small group of those who have been treated with Deep Brain Stimulation.

So there are just two groups. There is this small group of those affected who are equipped with this "power plant" [meaning deep brain stimulation]. There are just a few. And in the other group [...] there are about 20 to 30 people, maybe one or two people who were treated with deep brain stimulation, that's it.

Different groups

Participating in a self-help group can help sufferers and relatives alike to no longer feel alone with their own difficulties and challenges. Sharing knowledge and experiences about specific topics of concern (e.g. deep brain stimulation) is also valued. While the exchange about Parkinson's disease is helpful for some affected persons and relatives, for others it is just the opposite, and the discussion with others about the disease and "living with it" is experienced as "too much".

Uli F.

Communicating the disease

Video Interview

Related experiences

Other experiences by Uli F.

Uli F.