Salome G.I.'s husband has a slow progression and can join in with childcare.

Il marito di Salome G.I. ha una progressione lenta e può partecipare alla cura dei bambini.

Avendo un percorso lento, ha potuto aiutare nei primi anni, quando c'è sempre bisogno di molte mani quando si hanno dei figli. Fare il pannolino, allacciare le scarpe o vestirsi. So che molto spesso ho pensato: "Per fortuna ha un percorso lento". Per fortuna ora i bambini stanno crescendo rapidamente e possono vivere in modo più indipendente", perché in quegli anni era ancora in grado di fare tutto questo. Per i primi dieci anni dopo la diagnosi, in realtà ha avuto pochissime limitazioni.

Assistenza all'infanzia

Le mari de Salome G.I. a une évolution lente et peut participer à la garde des enfants.

Comme il a eu une évolution lente, il a pu aider pendant les premières années, une période où on a toujours besoin de coups de mains quand on a des enfants. Changer les couches, lacer les chaussures ou les habiller. Je sais que j'ai très souvent pensé : "Heureusement qu'il a une évolution lente. Heureusement que maintenant les enfants grandissent vite et peuvent ensuite vivre de manière plus autonome", parce qu'il pouvait encore faire tout cela pendant ces années. Les dix premières années après le diagnostic, il n'avait en fait que très peu de restrictions.

Garde d'enfants

Salome G.I.s Mann hat einen langsamen Verlauf und kann bei der Kinderbetreuung mitmachen.

Da er einen langsamen Verlauf hatte, konnte er in den ersten Jahren, wenn immer sehr viele Hände gefragt sind, wenn man Kinder hat, helfen. Wickeln, Schuhe binden oder anziehen. Ich weiss, dass ich sehr häufig gedacht habe, "zum Glück hat er einen langsamen Verlauf. Zum Glück werden jetzt die Kinder schnell älter und können nachher selbstständiger leben", weil er in diesen Jahren das alles noch machen konnte. Die ersten zehn Jahre nach der Diagnose hatte er eigentlich ganz wenige Einschränkungen.

Kinderbetreuung

Yolanda

Since he had a slow course, he was able to help in the early years when a lot of hands are always needed when you have children. Diapering, tying shoes or getting dressed. I know that very often I thought, "Luckily he has a slow course. Luckily now the children are getting older quickly and can live more independently afterwards," because he was still able to do all these things back then. For the first ten years after the diagnosis, he actually had very few limitations.

Childcare

The diagnosis of Parkinson's affects many areas of life and also influences life and everyday life in the family. Despite the many restrictions and burdens that the disease usually brings with it, it is also reported that the cohesion and closeness within the family have increased due to the diagnosis. The physical proximity of other relatives is equally important and relieving for those affected and family members providing care. Depending on when the disease breaks out and whether or not there are children or grandchildren, other challenges arise (e.g. care, explaining the disease).

Family life

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

Salome G.-I. tells that her husband was stressed and as a result his muscles stiffened.

We were on a canoe trip with friends and then it was a matter of going from the canoes to another boat and you had to change. There was a time limit. I can still remember that everyone had to wait for us and because of that, my husband was stressed and couldn't get dressed. Then I had to dress him and help. Then I got stressed again and said, "You, the others all have to wait now." And it just didn't work anymore because he was very stiff. These are such social situations with other people and that happened about two or three times. But you have to say, yes, it wasn't that bad. The others just had to wait. But it stressed me out and it stressed him out. A stressful situation naturally blocks a Parkinson's patient even more.

Stiffness

The motor symptoms of Parkinson's disease include a slowing of movements, which can be noticeable in all parts of the body (e.g. legs, arms and hands, face). Sufferers report how the pace of walking decreases and how, later in the course, sudden blockages occur that also lead to falls. In addition to tremors, muscle stiffness is another symptom that sufferers and relatives describe, which is painful and can also intensify depending on the situation, for example during stress. Those affected also report over-movements in the advanced stages, which are particularly unpleasant for some.

Motor symptoms

Salome G.-I. reports that her husband wants to do everything himself, but he is increasingly reaching his limits.

He still worked part-time 40%, or he still works 40%. That means that on working days he could do everything on his own, for example go to M [place] and do the work. He could do all that. He told me that it just took more and more strength. It took a lot of effort, but he could do everything himself. He always wanted to do it, even difficult things like putting on shirts, although he was already worse, he never wanted to accept help. He rarely did that. He could still work independently, but he had more and more trouble, for example with walking. He told me that he used to drag himself from the train station to the office in M [town], because it was getting more and more difficult to walk. That started about two to three years before the deep brain stimulation. Then he still did a lot of sport, kayaking, hiking. And then, of course, there were some restrictions because he suddenly could no longer move.

Want to regulate everyday life themselves

Parkinson's disease is accompanied by changes in everyday life that vary according to the type and extent of the symptoms. Maintaining routines and certain habits, such as getting up at the same time in the morning, or physical activity, is important. At the same time, it is also essential for those affected to recognise their own limits, for example, when getting around is no longer possible to the usual extent, to schedule more time, or to organise themselves differently when everyday tasks can no longer be performed to the same extent (e.g. housework). Learning new forms of employment and enlisting the help of others are also important.

Daily routines

Salome G.-I. finds her husband to be more withdrawn.

Salome G.-I.: Well, you don't know what will happen when you get older, do you? There are developments anyway and you change. But actually he's more of a cheerful, upbeat person who's always in a good mood. That was like a personality change. And [...] there are also personality changes with age, you change.
Interviewer: Yes, of course. We develop as a person.

Salome G.-I.: We develop. But with Parkinson's you never know whether it is a personality change due to the disease or whether it is just the normal course of life of getting older.

Interviewer: But then you would say that your husband's personality changed somehow during the disease.

Salome G.-I.: I would say yes.

Interviewer: Can you give an example?

Salome G.-I.: That is still a bit difficult for me. Yes, in the last few years I had the feeling that he was somehow isolating himself. That he is like in a cage with his illness. That I somehow have the feeling that I can't get as close to him as I used to. That there's like a Parkinson's wall between us.

Closure

People with Parkinson's disease and their relatives report that the changes that occur as the disease progresses also have an impact on the personality of the person affected over time. The impression of "no longer being the same" as before is expressed by relatives and affected persons alike. What exactly this means for the individual varies. While some perceive themselves as more unfriendly or anxious, others report changes in the perception of their own emotionality, the loss of humour or increasing withdrawal (e.g. when impulse control disorders exist).

Personality

Salome G.-I. sometimes finds it difficult to assess whether she should express concerns.

And if you are still very active, like us, and you want to do different things and you do them, then there was the situation where I was alone with him and I thought, "OK, are we going to do this? But actually, he was able to decide a lot of things very well. For example, last year we were still in the 4000 and 5000 metre high mountains in Kyrgyzstan. We did a trekking tour and a mountain tour. Then I went with our friends to this 5000-metre mountain. He then returned with the mountain guide from 4500 metres because he realised, yes, now it's no longer possible. That means he was still able to judge what was possible and what was not. [...] But sometimes, as a partner, you always have to think about "what is it now?" or "should I say something or should I say nothing?

Responsibility

Parkinson's disease often has an influence on a couple's relationship. Changes are noticed by sufferers and also by partners of sufferers. In the area of communication, those affected report that conversations and talks have become more difficult, for example because the person with Parkinson's speaks in a quiet voice and is more difficult to understand, or when memory is impaired. Changes in the couple dynamics and in the respective roles are also reported, for example when the ill partner is increasingly unable or unwilling to make decisions, when questions of responsibility arise or when expectations of the partner change (e.g. on the subject of support). While for some people something unifying comes to the fore (e.g. being dependent on each other) and leads to the experience of more closeness, for others suffering - their own and their partner's - is a central issue that weighs on them.  Many of those affected also report that physical closeness and sexuality change.

Relationship

Salome G.-I. reports changes in sexuality.

Of course, there are also problems in the sexual relationship, because Parkinson's patients can no longer move so well and that is of course also difficult.

Sexuality

Salome G.-I. is glad that her husband decided to have the operation, but was also afraid that something would go wrong.

Salome G.-I.: And for that I am very grateful to my husband that he did this deep brain stimulation and that he didn't say, "oh, I'm so scared. Why the brain! And what happens to me then?"
Interviewer: As a family member, did you have any fears before the operation?
Salome G.-I.: Yes, of course. Yes, I was very afraid, because something could go wrong.
Interviewer: Yes, of course.
Salome G.-I.: I mean every operation and obviously also operations on the brain can go wrong. But I was already stressed. I was very scared and of course it was also a bit stressful, because you never know what will happen afterwards. Certain things had to be taken care of. There's a lot to do.
Interviewer: And what fears did you have?
Salome G.-I.: That something could go wrong during the operation. But they said that the risk was 99.9% [or 0.1%], so very, very, very small. But in the end it was clear to me that the risks of this operation, if it turned out well, would outweigh what would happen if the disease continued without stimulation. Because in the last six months, he felt very bad. My husband is also a sportsman and if a sportsman can no longer move or if we could no longer devote ourselves to our activities together, then I knew it would be a disaster.

Complications

The non-everyday and long surgical procedure required for the treatment of deep brain stimulation triggers fears among those affected and their relatives. The fact that the operation takes place on such an important organ as the brain, where possible complications or mistakes can lead to momentous consequences in the lives of those affected, causes concern for those affected and their relatives. Another aspect that causes concern is the fact that the operation is partly performed while the patient is awake. Concerns are also expressed about the deep brain stimulation itself (e.g. its effect on behaviour).

Fears

Salome G.-I. is glad that her husband has facial expressions again and can move.

Of course, I also hoped to get my husband back the way he really is. Movements and facial expressions, that's what makes a person and that's what I had hoped for. That also happened. Yes.

Movement and facial expression

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.

Salome G.-I.

Childcare

Video Interview

Related experiences

Other experiences by Salome G.-I.

Salome G.-I.