Stephanie Freidberg, a 37-year old American/Belgian clinical psychologist living in Brussels agreed to talk about her father Stephen, his experiences of living with Parkinson’s Disease; the impact that his illness had on her; how it changed their relationship; her regrets; cherished memories and how caring for him has made her more empathetic.
She hopes that by being so honest about such a deeply emotional subject, others might feel more able to speak about their own experiences of Parkinson’s Disease, whether as a patient, family member or friend.
Can you tell us about your father and your relationship?
My father was diagnosed with Parkinson’s Disease in 2001. He passed away in 2012. He was a wonderful man. He had it all. One word in particular comes to mind to describe him (and others have said it of him too): ‘decent’. He was an extremely decent, fair and moral person. He was also brilliant and extremely good looking. He had a great sense of humour as well. As I say, he had it all. I loved him very much and feel that he was a rock in my life. He died when I was 29 and pregnant with my first child.
How did your father react initially to his diagnosis and how did this change over time?
We all knew something was going on. He kept saying that he didn’t feel like he could do things the way he used to, and he was only 60. It became difficult for him to drive, walk, work and concentrate and, with his incredible mind and intelligence, it was just unbelievable. I was 18 when he was diagnosed and just starting college far away, so I wasn’t there. He tried to protect my sisters, brother and me from the reality of his condition by continuing to joke around and not really talk about what he was experiencing. I felt he was overwhelmed, but also relieved to have my mom by his side as she took very good care of him from beginning to end.
When and how were you told you that he had Parkinson’s Disease? What was your initial reaction? And, how did you come to terms with the news (if you did)?
When my mom told us, me and my sister, I didn’t fully understand. I mean I had an idea of what Parkinson’s Disease was but I didn’t fully comprehend the magnitude of what it meant. I also think that I was somewhat in denial, and still being a teenager I just kept thinking that he was strong and extremely smart and medicine would help. I don’t know if I ever really came to terms with the disease. I somehow never associated the term Parkinson’s Disease with him. It was more the individual symptoms that I had to come to accept.
What Parkinson’s Disease symptom did you discover that you hadn’t known about before? How would you explain it to people who aren’t familiar with Parkinson’s Disease?
Eight years after his Parkinson’s Disease diagnosis, the doctors said he might also (or perhaps instead) have another condition, Lewy Body Dementia. It was never confirmed. But the aspect of dementia and the way the disease slowly but surely deteriorates a human being, in terms of body and spirit, came as a surprise to me.
What did you observe as being the most difficult aspect for your father of living with Parkinson’s Disease?
That he was not able to be the person he was before: to go on trips; to keep up both physically and mentally; and, also that he sometimes felt that he was a burden on us. He couldn’t stand that. I know that he also felt ‘emasculated’ in a way.
What was the impact of his illness on your life? What did you miss?
The most difficult for me was to watch my father deteriorate over the course of 11 years. We lived apart, but I would come home as often as possible.I tried to speak with him on the phone when I could but it became increasingly difficult for him to communicate, in part because of the neurological problems he had, but also because none of us (his family) could fully understand what he was experiencing and he knew that. He struggled so much in the end just to get up or to have a conversation and sometimes we would get frustrated. That frustration would sometimes make me react very strongly towards him. I felt that I was mean and then I would regret it so much and feel guilty. But it was impossible to understand what he was going through. I missed the ease of how our relationship had been. In the end, everything was a struggle.
How did your relationship with your father change after his diagnosis? Why?
Initially, our relationship changed because there was this unspoken truth that no one could address. Then it changed because that truth became unavoidable. I ended up taking care of him several times and I think that even though he was grateful, he was also embarrassed and angry with himself for needing me to help him. Our roles flipped: the child was now taking care of the parent.
How did you try to support your father?
I tried to be there for my dad by telling him about my life and trying to be happy and do the best I could. That’s what he always wanted: for his children to be happy, healthy and independent. A lot of the support I gave was also for my mom so that she could be there for him. So indirectly, I helped him a lot. I spent several weeks with my Dad while my mom, his primary caretaker, took a trip in order to “breathe”. These times were sometimes difficult but I am so thankful for them now. (Stephanie’s parents: Elisabeth and Stephen)
What has been an important learning for you? Can you give an example? What, if anything, is something positive that PD has taught/ given/ shown you?
It’s difficult to say how this has affected me positively. Perhaps it has made me extremely sensitive and attentive to people with Parkinson’s Disease and other neurological conditions. I hope I can help families and primary caregivers to feel less guilty because they most likely also feel that they are not doing enough. I am a clinical psychologist and I know that my experience with my dad has shaped me professionally as well because I feel a great deal of empathy for people who are unwell.
What do you wish other people would understand better about PD?
I think that something that helped my father very much was when a psychologist told him: Mr. Freidberg, you are not a ‘Parkinsonian’, you are a man, still the same, who has Parkinson’s Disease. It’s important to remember this because during the first years of the disease, he continued to enjoy many activities he liked.
I would like people to be more sensitive and to know that Parkinson’s Disease is not just someone who shakes and needs help to walk. (I still remember how angry I was to hear that one of my sister’s friends had jokingly sung ‘Shake, Rattle and Roll’ when told about our father’s diagnosis!) People often don’t know how to react to the disease because it’s scary and there is a real lack of understanding. For example, many don’t realize that in addition to the more visible motor skill symptoms, such as tremors, there are other cognitive symptoms of the illness, such as dementia.
What advice would you give to somebody who has just learned that a friend or family member has Parkinson’s Disease?
I would advise them to be patient. Looking back, I wish I had had more patience with my father. He was always there, he was always present, but in our hectic lives and fast paced daily lives, I didn’t always give him time to express himself. It’s important to remember that a person with Parkinson’s disease takes more time to do everything. This disease is extremely debilitating for the patient but also destabilizing for those around them. I wish I had taken the time to let him be who he was with Parkinson’s Disease and not try to get him back to what he was before. Because that was an impossible hope.
What motto do you try to live by?
Happiness is a choice, not a given. Nothing or nobody will make you happy until you choose to be happy. Happiness will not come to you, it can only come from you.
And, well, I’m just adding my favorite quote here as well. My dad loved all things Space related. He loved Star Trek and I remember often watching the film and series with him. He was a business man but he was so interested in planets and stars that I think, if he could, he would have taken the first-available commercialrocketship to the moon. I chose this quote to be printed on the memorial cards we sent to all his friends and family around the world. It comes from my favorite movie Gattaca, which in itself is relevant as it deals with genetic manipulation aiming at eradicating diseases… something I have always been very interested in. (My extended essay from my IB was called “Genetic Perfection”.) Anyway, here is the quote:
“Of course, they say every atom in our bodies was once part of a star. Maybe I’m not leaving this world… maybe I’m going home.”
(Photos: Stephanie, her father Stephen and husband Thijs. At her wedding, Stephanie was amazed that her father walked her down the aisle rather than use his wheelchair.)