We hear from Monika Rudow about her experience of deep brain stimulation – from how she initially felt “ashamed” by her Parkinson’s disease diagnosis, to how the therapy has impacted her symptoms
“The first time it started was in 2006. I was sitting in church – my parents had a golden wedding anniversary – and my leg started shaking.”
Monika Rudow, from Ochtendung, Germany, is recalling the first time she experienced uncontrollable movement – known as tremor.
“It just started shaking – I couldn’t keep it still,” she says. “I was very stiff. My legs felt heavy every time I went out.”
What Monika didn’t know at the time is that the symptom is a hallmark of Parkinson’s disease and around 70% of people with the condition are thought to experience it.
Getting the right diagnosis
Monika sought the help of experts to find out what was wrong with her leg – but none of the doctors she saw gave her a Parkinson’s diagnosis.
Situations like these are “very typical”, says Professor Sergiu Groppa, head of movement disorders and neurostimulation at the Johannes Gutenberg University of Mainz, Germany: “A lot of patients need time and consult different specialists before an admission to a movement disorder centre is done.”
When Monika found out she had Parkinson’s disease in 2007, she decided to keep her diagnosis private. “I felt ashamed that I have Parkinson’s,” she says. “I didn’t tell anyone, except my husband, my son and my mother. And I asked them not to talk about it.
“I did that for 10 years. And then the moment came when I thought, ‘No, this can’t be it.’”
In 2009, Monika’s mother handed her a newspaper with an article about deep brain stimulation (DBS) – a type of surgery in which electrodes are placed in specific areas of the brain to help manage and treat symptoms of Parkinson’s disease.
Monika decided that the surgery could be a treatment option for her in the future, when her symptoms worsened. She told her husband and son: “Let this DBS system be implanted, because it’s just good and it will help me. I don’t want to always take medications like levodopa or through pumps and tubes.”
When is the right time to consider DBS?
“Deep brain stimulation is a medical technology that was developed in the last 25 years to efficiently modulate and improve movement disorders, like Parkinson’s disease, tremor, dystonia,” explains Professor Groppa.
Often in Parkinson’s disease, medication can only “partially improve” motor symptoms, says Professor Groppa. “If there is no improvement in daily living with medication, the option of deep brain stimulation should be considered.”
Before recommending DBS treatment, Professor Groppa says it’s important for healthcare professionals to “intensively inform the patients about the hardware, about the available systems”.
Patients at his clinic are able to see the device and leads identical to the ones that are used during the procedure. This, he says, gives people with Parkinson’s “a better feeling about what happens during the surgery”.
An “indescribable” change
For Monika, who underwent her surgery in 2018 because of fluctuating motor symptoms, DBS hugely improved her tremor.
“After the surgery, the professor came and said: ‘So, now we turn on the device,’” Monika says. “He activated it and [there was] no shaking at all. My hand was completely calm. It was just a happy feeling.”
Her husband, Heinz, adds that “the difference between before and after is actually indescribable. What she could do before, or what she only could do with tremors and other restrictions, versus everything she could do after the operation – anyone who wasn’t there to witness it wouldn’t understand it,” he says.
Now, four years after the procedure, Monika explains that her quality of life is “much better”.
“I feel really good,” she says. “I can do everything again.”
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Parkinson’s Europe is sharing this article for information purposes only; it does not represent Parkinson’s Europe’s views and is not an endorsement by Parkinson’s Europe of any particular treatments, therapies or products.
