Anne-Marie and Patrick know from their own family’s experience that Parkinson’s disease not only affects the individual diagnosed with the neurodegenerative condition, but also their partner, children, wider family and friends. They wanted to shine a light on the impact of the disease on children – whether adult or still young – and were very touched when several people responded to their request for testimonies.

Thank you to everyone who shared their experience!

NOTE: Since the vast majority of respondents requested that we keep their answers anonymous, we have decided to do so for everyone.

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Seeing a parent struggle with a degenerative disease for which there is no cure has, unsurprisingly, been a source of stress and anxiety for all respondents.   

  • “My father’s illness gave me a certain amount of anxiety. When my father was still living at home, I was constantly on the alert, listening for the slightest noise that might indicate that he had fallen or hurt himself.”
  • “During the course of my dad’s illness, there were many concerns about him (because of both mental and physical problems) but also about my mum, his main carer.”

  • “My mother’s illness when my brother and I were still at primary school had a big impact on us. The atmosphere at home became much heavier. I have images of our mother’s visit to the Citadelle hospital in Liège after a major operation on her brain.”

  • “When my father’s Parkinson’s disease was only visible due to his hands trembling, it didn’t have much impact. But when it impacted his mobility, he suddenly became very old.”
  • “From time to time, I have to cheer up my mum.”

Many respondents described feeling a sense of helplessness, wishing for more support from the medical community, and feeling ashamed or embarrassed about their parent. Caring for their parent is often a heavy burden.

  • “My father fell many times, particularly at home. The last time was the most shocking for me. My mother and I were at home when we heard a loud crash. We found my father unconscious in his bedroom, his head lying in a pool of blood.”

  • “At one point, my father’s medication was not quite right, causing him to have many delusions and making it incredibly difficult and dangerous to care for him at home. We assumed it was part of the disease. Only after we had a follow-up conversation with the doctor, months later, did we realise that this was largely resolvable with the right medication. Actually, we should have sought help sooner.”

  • “There were many difficult moments. As a teenager, I was often ashamed of the constant gaze of others when we went for walks or out to eat. Mum was often lost in thought or the illness would take over. I sometimes lost patience with her because she became clumsy and distracted. She would arrive late to pick us up from school… Sometimes she forgot all about us… We had a few car accidents too, fortunately minor ones… When I started work, I quickly decided to live with my girlfriend, because I have to admit that I needed to breathe and was suffering from living with the slow deterioration of her condition on a daily basis.”
  • “We have to help her push open a door, open a jar of mayonnaise, she needs a little help in her everyday life.”

Depending on the particularities of the parent’s disease – the speed of its progression, the age at which it was diagnosed, the symptoms experienced – respondents shared that their relationship had changed to greater or lesser degrees.  

  • “Unfortunately, the illness did not enrich my relationship with my father. He very quickly found it hard to communicate or stay focused. Because we had to take care of him, the father-daughter dynamic was reversed.”

  • “The illness didn’t really change our relationship. There are certain activities that we can no longer do together. The disease progresses slowly. There were no sudden changes, which meant that we gradually got used to its presence and the consequences.”
  • “(It is) very difficult to find anything positive. The process and progress (of the disease) was so tough and so intensely painful for him and my mum.”

  • “I think I talk to my mum a lot. She confides in me a lot.  We have a lot of discussions about life. About how to live it in a positive way.” 

Many respondents also related ways in which their parent’s determination and resilience or the care provided by their other parent had been an inspiration to them.

  • “It made my appreciation for informal carers grow enormously. … The respect for my mum as a carer is very high because of what she went through and how she dealt with it.”

  • “Our parents were courageous and a great example. Their courage and ‘joie de vivre’ continue to inspire me. … Dad was remarkably courageous and patient right up to the end.”
  • “She tries to do her best despite her illness. … There are the times when we see her fighting, and that’s a great example for us.”

For some respondents, the experience of being raised by a parent with a chronic health condition, or supporting their parent through illness as an adult child has forever changed their outlook on life – positively and negatively.

  • “(It has) increased my awareness of the importance of good health and growing old with dignity, yet also somewhat increased the fear of getting Parkinson’s – given the genetic predisposition in the family.”

  • “I realised at a very young age that life was short and that anything could happen, which explains my enthusiasm and my thirst for to discover new things. … Mum taught me that happiness is made up of simple things.”

Many respondents valued the opportunity to talk about their concerns and share their experiences with others going through something similar, but also the opportunity to have time away.

  • “As far as I know, there were no major gestures (of support from others), just constant support from those around me. Some people had similar experiences to mine and, thanks to them, I felt heard and understood.”
  • “Understanding your grief and difficult experiences and being able to talk about it makes it much more bearable. Often understanding comes from people who have also experienced similar grief and with whom you therefore feel a connection: a burden shared is a burden halved.”

  • “(My mum) had a lot of support from fellow sufferers and their partners in Parkinson’s groups. She remains a loyal member of the Parkinson’s Association after 14 years.”

  • “My uncle … and aunt invited me and my cousins to go skiing when I was 14. I didn’t realise it until later, but the aim was to get us out of the house and make us happy.”

All respondents agreed on the need to continue to support research to help find a cure for Parkinson’s disease.

  • “Yes, this research remains important to me. When my father had an operation to place electrodes to regulate the disease, his condition clearly improved in the first few months, even years. I can only hope that similar results are possible with other treatments.”

  • “Absolutely. Parkinson’s is a rapidly growing condition worldwide and affects young and old alike. It is often accompanied by a severe deterioration process that is experienced very consciously by the patient.”

  • “This is obviously very important because it can affect us all. I hope that treatments will continue to evolve rapidly.”

  • “Yes, especially if the disease affects younger people!”
  • “Yes, it’s important for me. It gives hope to my mum and other people with Parkinson’s, and for future generations. “

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If you have been affected by Parkinson’s disease, whether as a patient, carer or child there are support groups available that can provide practical and emotional support via Association Parkinson, Action Parkinson and Vlaamse Parkinson Liga

For two further very personal testimonies by children of a parent with Parkinson’s disease, please check the interviews with Stephanie and Kristien on our website.