{"id":1915,"date":"2024-03-30T17:13:30","date_gmt":"2024-03-30T16:13:30","guid":{"rendered":"https:\/\/demoucelle.sites-stag.agency\/uncategorized\/i-had-to-learn-to-listen-anne-marie-shares-lessons-she-has-learned-since-patricks-parkinsons-diagnosis\/"},"modified":"2026-04-04T08:43:29","modified_gmt":"2026-04-04T06:43:29","slug":"i-had-to-learn-to-listen-anne-marie-shares-lessons-she-has-learned-since-patricks-parkinsons-diagnosis","status":"publish","type":"post","link":"https:\/\/demoucelle.sites-stag.agency\/fr\/uncategorized\/i-had-to-learn-to-listen-anne-marie-shares-lessons-she-has-learned-since-patricks-parkinsons-diagnosis\/","title":{"rendered":"\u2018 J\u2019ai d\u00fb apprendre \u00e0 \u00e9couter. \u2019 Anne-Marie nous fait part des le\u00e7ons qu\u2019elle a tir\u00e9es depuis le diagnostic de la maladie de Parkinson de Patrick."},"content":{"rendered":"
\"-<\/figure>\n\n\n\n

<\/a>Anne-Marie and Patrick <\/span>were married in 2000. Patrick\u2019s Parkinson\u2019s diagnosis came 19 years ago on his 40<\/span>e<\/span> birthday when their children were just four<\/span> and two-and-a-half years old.\u00a0<\/span><\/em><\/p>\n\n\n\n

Since co-founding the Demoucelle Parkinson Charity in 2011 to help accelerate research to find a cure for Parkinson\u2019s disease, the couple often talk openly about the disease, its symptoms, the importance of supporting scientific research and how they approach life with a positive attitude. Anne-Marie has however rarely spoken about her role as a caregiver.\u00a0<\/span><\/em><\/p>\n\n\n\n

This Parkinson\u2019s awareness month, Anne-Marie has decided to share some of her experiences in the hope that it might help others<\/em>.\u00a0<\/span><\/p>\n\n\n\n

Why did you agree to do an interview about being a caregiver?\u00a0<\/b><\/h5>\n\n\n\n

In the Q&A session following a talk that Patrick and I gave recently, I was asked about my experience as a caregiver and heard afterwards that what I had said had resonated with quite a few people. That\u2019s when I realised that sharing my own experiences might help others, whether they care for someone with Parkinson\u2019s or any other condition. I’m not saying that I have all the answers, but I have learned some things along the way that might be useful to other people in a similar situation.\u00a0<\/span><\/p>\n\n\n\n

And there’s another reason why I want to share my experience as a caregiver. Over the years, I’ve heard some people say \u2018Anne-Marie is so strong. What’s wrong with me? How come I’m not as strong as she is?\u2019<\/em>\u00a0 I don\u2019t think that is true. It is difficult for each of us that are in this position but perhaps by sharing we can help each other.\u00a0<\/span><\/p>\n\n\n\n

Let\u2019s start at the beginning. How did you react to Patrick\u2019s diagnosis?\u00a0<\/b><\/h5>\n\n\n\n

Almost a year went by between the first time Patrick went to see a doctor almost 20 years ago now and the moment he got the final diagnosis. Initially they didn’t know what Patrick had, and then the Mutuelle health insurance always had to approve additional tests (DaTSCAN, PET scan etc.). It doesn\u2019t always take so long before people are diagnosed with Parkinson\u2019s. It can be much quicker, depending on the progression rate, the presence of typical symptoms and the thoroughness of the diagnostic process. Personally, I did not mind the wait because, in truth, it helped me to get used to the idea that something might be wrong. A year is too long, but in retrospect I preferred the delay to being confronted with an immediate diagnosis.\u00a0<\/span><\/p>\n\n\n\n

\"-<\/a>How did you react when you finally got the diagnosis?<\/b><\/h5>\n\n\n\n

There was a long period of denial: \u2018It cannot be true\u2019, \u2018They are wrong\u2019, and so on. I waited a further two years before even telling my sisters that Patrick had Parkinson\u2019s. And it took five years before I told my colleagues at Allianz. In part, because I didn\u2019t want to accept the diagnosis. But also, and I feel quite embarrassed about this now, because I was worried that people would see us differently, as less strong. I hated the idea that people would feel sorry for me.\u00a0<\/span><\/p>\n\n\n\n

During those years, I also very much downplayed the gravity of the disease vis-\u00e0-vis Patrick. I thought my role was to make him feel more positive. So, when Patrick was showing symptoms, I would say \u2018Oh, but it’s not that bad. Honestly, you barely see it. It’s okay\u2019.<\/em> I wanted to \u2018lead by example\u2019 and be positive. But I realised later that this had exactly the opposite effect. Patrick didn’t feel understood. He didn’t feel \u2018seen\u2019. He felt that I was completely oblivious to what was going on. And in fact, I was making things worse for him. So that is one lesson I want to share with other caregivers: <\/span>being positive won\u2019t help if the patient doesn\u2019t feel understood.\u00a0<\/strong><\/p>\n\n\n\n

What has been most difficult about the disease?\u00a0<\/b><\/h5>\n\n\n\n

What\u2019s most difficult is seeing Patrick struggle with everyday things, like getting into bed, going to the toilet, eating, speaking. That’s tough. It’s also difficult to see the disease evolve and wonder what’s next. It’s difficult to see people staring in the street. It\u2019s difficult to accept that we’re not in control. It\u2019s difficult to lose most of our social life. I can still do things on my own, and I do, but even though Patrick finds it important that I go out, I know it\u2019s so tough for him because he cannot anymore. Which leads to another major challenge I struggle with: finding the balance between being there for Patrick, being a couple and taking care of myself.\u00a0<\/span><\/p>\n\n\n\n

What did you learn?\u00a0<\/b><\/h5>\n\n\n\n

As already mentioned, I had to learn to <\/span>acknowledge the disease<\/span>. But that was not easy. I first thought that my role was to tell Patrick how to think, feel and what he needed. But that didn\u2019t work at all. He didn\u2019t feel understood. I had to <\/strong><\/span>learn to listen. To listen, without thinking that I knew it all.<\/strong><\/p>\n\n\n\n

I also needed to <\/span>develop more empathy<\/span>. For example, sometimes Patrick could be quite difficult, telling me that everything I did was wrong. I took this very personally until I heard the phrase: \u2018hurt people hurt people\u2019 i.e. that people who experience pain are likely to pass it on. That\u2019s when I realised that of course he experiences difficult emotions and of course he has to be able to express them! <\/span>\u00a0It isn\u2019t about me or directed at me. I\u2019m just the sounding board.<\/strong><\/p>\n\n\n\n

Learning about the disease<\/strong> proved helpful as well. At some point, for example, Patrick was quite apathetic. I didn\u2019t recognise him anymore, and I found this very difficult. Until I learned that apathy is one of the symptoms of Parkinson\u2019s. Once I knew it was a symptom, I stopped fighting it. There was nothing to fight. It is part of the disease. And all I could do was accept it. Luckily, the apathy disappeared again later on.<\/span><\/p>\n\n\n\n

I also learnt that Patrick is not weak, but incredibly strong. And that he can take it when I talk about what I need, and about what I don\u2019t like. Just like I can take it when he talks about what he needs and what he doesn\u2019t like. So that was yet another lesson. <\/span>Patients are not weak!\u00a0<\/strong><\/p>\n\n\n\n

The beautiful thing is that all these lessons have made me a more \u2018complete\u2019 person. In addition, I think they have not only been helpful for myself \u2013 but also for Patrick. Because they turned us into \u2018true partners\u2019 in the disease.\u00a0<\/span><\/p>\n\n\n\n

\"-<\/a>How do you take care of yourself?\u00a0<\/b><\/h5>\n\n\n\n

One of the things I do every morning is journaling. There are days where I write about all the positive things in my life, and there are days when I feel the need to dwell on everything that\u2019s going wrong. This process of writing down my feelings has been extremely important to me. I must acknowledge what’s happening to Patrick, but I also have to acknowledge what’s happening to me \u2013 and that\u2019s what I do by journaling.\u00a0<\/span><\/p>\n\n\n\n

A second element I pay attention to is doing things that energise me. Like seeing friends. Or doing fun things. Last year, for example, I sang in a musical. And more recently I\u2019ve joined a group of Toastmasters, just because it gives me a lot of positive energy.\u00a0<\/span><\/p>\n\n\n\n

I don\u2019t want to be a victim of our circumstances. I want to be an agent of change. So, when I feel like a victim, which happens often enough, I ask myself: \u2018What do I want? And if that\u2019s what I want, what’s the best thing I can do right now to make it happen?\u2019 It\u2019s important to allow oneself to be sad and down sometimes, but I find it important not to remain stuck in the negativity, and instead work towards the future that I want.\u00a0<\/span><\/p>\n\n\n\n

Creating the Demoucelle Parkinson Charity came out of that concept: let\u2019s not sit back and hope a cure will be found. Let\u2019s do something about it! Becoming an agent of change rather than a victim has been a very effective \u2018therapy\u2019 for me.<\/span><\/p>\n\n\n\n

In summary: personal development techniques such as journaling; doing things that energize me, and; taking an active role rather than that of a victim, are three coping mechanisms that have helped me very much \u2013 and that perhaps might help other caregivers too<\/strong>.\u00a0<\/span><\/p>\n\n\n\n

How do you think about the future?\u00a0<\/b><\/h5>\n\n\n\n

I no longer think further ahead than one year. Contrary to when I was in my twenties, I don’t seem to be able to project myself much further ahead. In fact, as soon as Patrick was diagnosed, I preferred not to think any more about possible futures.<\/span><\/p>\n\n\n\n

This being said, I do have a very strong vision of getting to a cure for Parkinson\u2019s. And I do have a strong purpose, which is to help others thrive while also having a good life myself. Those are my goals. Each day, I reflect on what I can do to get closer to that vision and that purpose. One step at a time. We\u2019ll see where it brings us \u2026\u00a0<\/span><\/p>\n\n\n\n

Looking back, how would you describe the past 19 years?\u00a0<\/b><\/h5>\n\n\n\n

A degenerative, and currently incurable disease, in the family is not what I had dreamt of. Then again, who has the life they dreamt of? I\u2019m grateful for the wonderful relationship that I have with Patrick and with our kids. My life has more purpose, and I have become a more \u2018complete\u2019 person. Having Parkinson\u2019s disease affect your family is tough, but I still have so many beautiful moments. I would certainly call it \u2018a good life\u2019.\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"

Find out how journaling, boosting her own energy and helping find a cure are just some of the ways Anne-Marie copes with the impact of her husband\u2019s Parkinson\u2019s disease.<\/p>","protected":false},"author":1,"featured_media":1916,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1915","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts\/1915","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/comments?post=1915"}],"version-history":[{"count":1,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts\/1915\/revisions"}],"predecessor-version":[{"id":1919,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/posts\/1915\/revisions\/1919"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/media\/1916"}],"wp:attachment":[{"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/media?parent=1915"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/categories?post=1915"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/demoucelle.sites-stag.agency\/fr\/wp-json\/wp\/v2\/tags?post=1915"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}