“Parkinson’s? No, it is not that — you are far too young!”
That is what I was told, at the age of 38, when I went to the healthcare centre about five years ago. I sought help because I felt shaky in a different way, a bit like when you are extremely hungry or completely exhausted after a hard workout. I was sent home with beta blockers to see if they might help. At that point, stress or essential tremor was suspected. Essential tremor is a diagnosis where you shake without a known cause. The difference is that with essential tremor, the shaking mainly occurs during movement, whereas in Parkinson’s it is mainly at rest, known as resting tremor.
After a few months, I went back to the healthcare centre because I still had the same feeling that something was not quite right. The doctor asked me what I thought it might be. I answered that I had considered diagnoses such as ALS, MS, a brain tumour and Parkinson’s. The doctor then replied firmly: “Parkinson’s? No, it is not that — you are far too young.” She wrote a referral to a neurologist just to rule out various diagnoses, and then we would see how to proceed. The appointment with the neurologist came, and I went there. The neurologist could not see any abnormalities, and once again I was told that it was not Parkinson’s because I was too young. I was referred to Sahlgrenska for a DaTSCAN, again only to rule out diseases. A DaTSCAN is an examination that shows the levels of dopamine in the brain. After it, various diagnoses can be ruled out, and it can also show with high probability whether it is Parkinson’s disease. There are no tests today that can show with complete certainty whether or not you have the diagnosis; instead, you receive the diagnosis “with high probability”.
I had my DaTSCAN, and a week or so later I received an appointment with my neurologist. I understood that I would be given some kind of answer this time, and I was not completely surprised when I was told that I most likely had Parkinson’s disease. Many thoughts about the future arose right there and then. The neurologist took time, and we talked for quite a while. We booked a new appointment for a few weeks later so that my husband and I could have some time to let it sink in and then come back with any questions that had arisen.
My way of processing the news was to read a great deal about what Parkinson’s meant, and I read a lot about research and treatments. I also searched for other people’s stories about how they lived with Parkinson’s, but it was difficult to find people my age with the diagnosis. What I found comforting to read was that Parkinson’s is an individual disease, and everyone has their own unique course and their own unique symptoms. No one has all the symptoms either; that also varies. I thought that younger people who are otherwise healthy hopefully have more “resistance” to the symptoms. The stronger the body, the better. Younger people who work and live active lives usually have better physiological conditions than older people.
Today, it is about four years since I received the diagnosis, and I live exactly the same now as I did then. The difference is that I take medication a few times a day, but that is not something that worries me. I function just as usual with the medication and have very few side effects, for which I am grateful. I have a husband and two children of younger school age, and I work as a nurse. Work is going really well, and I am thinking about specialising, perhaps in neurology, so that I can use my experiences to help others.
Everyday life is often fast-paced here, with everything that comes with having a family, but I enjoy it, and I am happy that I feel well and can keep up just as before. It is important to get to know your disease and understand how the medication works. When you learn how you function and are careful about how you take your medication, it helps a great deal. It is a common misconception that the medication only helps for a few years, which is not true. The medication always helps, although it may become a little more difficult to dose during certain periods. During those periods, you have to try different adjustments until you find what works again.
Today the weather has been beautiful and sunny here. I have had a much-needed day off after a few tough days at work. I went out with the children and bought soil and plants for the garden, which we then planted. We had a simple lunch on the patio, and then the neighbour’s children came over to play. When my husband came home from work, we had coffee in the garden and made some plans for an upcoming birthday in the family.
I try to go for walks as often as I can. While my husband sorted out the barbecue, I went for a brisk walk with good music in my headphones. Walks with music or a podcast in my ears feel like a great energy boost.
All the best!
/Maria
Maria is 42 years old and works as a nurse on the West Coast. In 2019, Maria was diagnosed with Parkinson’s disease.