Sandvika (Netavisen): In 2018, 32-year-old Liv Olin Nordby Philbeam suddenly noticed that her legs were behaving strangely. She wanted to lie down and rest but her legs didn't.
Philbeam was pregnant at the time, so was reassured by doctors that what she experienced was normal and pregnancy-related. But the restlessness in the body did not disappear.
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Hanne (47) diagnosed with Parkinson's disease: – It gave me the spark of life again
In 2021, the mother of two received a chronic diagnosis that doctors tried to rule out two and three times. She had Parkinson's disease.
– I think I went into “fight mode”. I lost a lot of weight, more than 10 kg, did not sleep and ended up in the district mental health center in Doian. They were scared because I couldn't sleep and rest and I was clearly stressed.
However, psychiatrists were able to establish that Philbeam could not help the situation. Her illness is the problem, not her mental illness. She knows her first period after diagnosis was difficult to deal with.
– I was very scared. I'm still scared, but it's getting better, thanks to you, Philbeam says, and visits his friends at the Parkinson's Association in Oslo and Akershus.
Facts about Parkinson's disease:
Parkinson's disease is a neurodegenerative disease that affects, among other things, the brain's ability to control movements. The disease is chronic and develops gradually. The first symptoms are often insidious. ¨
Neurogenerative diseases are diseases of the brain in which nerve cells gradually die over time. Another common neurodegenerative disease, for example, is Alzheimer's disease.
About 8,000 people in Norway have Parkinson's disease, with 100-150 new cases per 100,000 people per year. The disease usually begins between the ages of 50 and 70, and the incidence increases with age. Store Norske Lexicon writes that men are affected more often than women.
Source: The Big Norwegian Lexicon
A strong encounter with the TV profile
One of the people at Philbeam's side when Netavisen meets her is longtime NRK profiler and cultural figure Ivar Dyrhaug.
Dyrhaug first opened up about his Parkinson's disease in 2017. After completing boxing training, he vividly remembers a powerful encounter with Philbeam, which they both attend weekly.
– Her tears were very clear, and when I went to talk to her, she thought that it was terrible to think that her children would not remember her as she is now, but that she would turn out to be a disabled person. Children will remember, Dirac tells Netavichen.
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Ivar Dyrhaug with new disease update: This is how he lives now
Also continues:
– It's a terrible picture to paint. It really showed how little she had read up to that point.
As Philbeam learns more about the disease, she describes it as terrifying, but she now knows she can slow the progression with the help of a good support device and exercise.
– It's not about sitting back and taking care of what little dopamine you still have left or taking pills. He says you can practice, you can do things, and it will actually change your situation.
Created a survey – and then they took action
Philbeam and Dirac volunteer for the Parkinson's Association in Oslo and Akershus. In this work, they are accompanied by Ingun Aimjellen, who suffers from Parkinson's disease.
Together the three have created a poster, which they have named “Neurologist's Home Board”. The board lists ten points on how neurologists and healthcare workers can better follow up with patients.
Clear communication, focus on training, follow-up and proper use of time are some of the points listed.
The House board came about after conducting a pre-poll survey on a Philbeam Facebook group for people with Parkinson's disease. The survey received hundreds of responses in a short period of time.
– From the survey, I took it that we need a slightly more elaborate system. He says things shouldn't depend on which country you live in or which neurologist you go to.
As for Ingunn Eimhjellen, she was not allowed to record her conversation with the doctor when she received the Parkinson's notice. So, this is also a wish listed on the notice board.
– I don't remember much of what I said after that. I sat there and thought, “Parkinson's? Hi, so.” By the way, I don't think I even told the neurologist. I just went to the woods, Eemjellen tells Netavisen.
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Pål Espen noticed that something was not right. People around him have seen it for a long time: – I hope my openness will help others
He credits the doctor for advising him on boxing training, but there should have been more follow-up.
– In the middle of the chaos, I felt left out as I walked out the door with a couple of prescriptions in my pocket and a new appointment in six months. I felt the support and care I needed came from my friends when I told them about the diagnosis.
She feared she would end up “right in the basement” after receiving sick leave.
– but it didn't happen. I took the medicine and after two weeks I felt better again. I felt normal again and then my mood improved. I didn't really notice it myself, but people around me did.
Kristine Gjendemsjø is a medical specialist and neurologist at the private clinic Sandvika Nevrosenter.
He says that Parkinson's disease usually develops slowly over many years, and that early onset Parkinson's disease can develop very slowly.
– You can live well with Parkinson's disease for many years. I usually tell my patients that they can live very stable for the next six, seven, eight years and even longer, says Gjendemsjø to Netavisen.
Parkinson's is a disease you don't usually die from, but rather live with for the rest of your life, he insists. Bodywork such as Philbeam, Dirac and Eamgellen are highly recommended in boxing.
– I often find that Parkinson's patients are some of the best patients I have. They cycle, run, play golf and tennis and are really active.
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It is only when suffering enters our living rooms that we become obsessed
Gjendemsjø praises the trio for taking the time to create a house board with points for neurologists.
– I think it's very positive. We like to provide good follow-up and treatment here and recommend the first follow-up check after four to six weeks, then every six months or more often if needed. We occasionally hear from patients who have gone elsewhere and received very little follow-up initially.”
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