How to Live a Happy Life with Parkinson’s Disease — 5 Tips for the Newly Diagnosed

I was diagnosed with Parkinson’s disease in 2016 at the age of 41. At that time, I was married, a father of two, and working as a graphic designer/photographer entrepreneur. I still am all that today. The diagnosis followed several years of vague symptoms. Especially in young Parkinson’s patients (known as YOPD or young-onset Parkinson’s disease), it is quite common that symptoms are not immediately linked to Parkinson’s disease.

“Being diagnosed with Parkinson’s disease at the age of 41 is statistically highly improbable.”

The symptoms of the disease can vary for everyone and may manifest in different order. Also, doctors often consider probabilities, and getting a Parkinson’s disease diagnosis at the age of 41 is statistically highly improbable.

During the seven years of my Parkinson’s disease, a lot has happened. The disease has progressed, and it hasn’t always been easy for myself or my loved ones. As I write this, however, I can honestly say that I am happy and living a good life. Here are some tips for those newly diagnosed and/or receiving the diagnosis.

“Any kind of secrecy is stressful, and hiding an incurable disease is extremely stressful.”

• You can run, but you can’t hide. Perhaps the most important aspect for me regarding this disease is that I have never tried to hide it. When you get sick in your forties, you will be sick for a long time. Hiding the illness from family, friends, acquaintances, colleagues, or anyone else is stressful. Any kind of secrecy is stressful, and hiding an incurable disease is extremely stressful. Stress makes Parkinson’s symptoms worse, so attempting to hide the disease can easily lead to a challenging cycle. Being publicly open about your illness will likely help you accept that you are — and will be — sick until the end of your life (unless there are significant advancements in medicine).
• Start looking for the right medication early. There are significant differences in how people tolerate and respond to Parkinson’s medications. If one drug works for one person, it may not work for another, and the same applies to side effects. It’s also essential to educate yourself about the medications used to treat Parkinson’s disease. Neurologists differ, and in my experience, they don’t always fully understand how different meds affect different individuals. Finding good medication can be a long run, so be prepared for that.
• Exercise, but don’t overexert yourself to the point of constant fatigue and physical strain. I have never been much of a sportsman myself, aside from skateboarding when I was younger. However, due to Parkinson’s disease, I have started engaging in various ball sports, such as badminton, soccer, and a ball game specifically designed for Parkinson’s patients. Through this activity, I have also met several fellow Parkinson’s patients. Exercise has a good effect on the progression of the disease; think of it as one of your medications.
• Connect with people in a similar situation, with emphasis on similar situation. For example, a recently diagnosed person may not necessarily benefit from spending too much time with those who have had Parkinson’s for a long time. Too much information can be harmful, and it may be better to live in the present with Parkinson’s rather than think about the future that much.
• Do things you enjoy and don’t demand too much of yourself. The more time you spend doing things you like, the less time you spend worrying.

“Life does not end with a Parkinson’s diagnosis, even though it may initially feel that way.”

Life does not end with a Parkinson’s diagnosis, even though it may initially feel that way. There are good things in every day, and although the disease is progressive, things can also improve. As an example, Parkinson’s has affected my ability to swallow for a long time already. This led to a few events where food got stuck in my throat uncomfortably, causing me to fear and avoid most solid foods. Eventually, I relied entirely on liquid nutrients from the pharmacy, which can be quite expensive.

However, with determination and the help of others, I have returned to eating solid foods, something I never expected to happen anymore. I genuinely believed that the next step would be the installation of a PEG feeding tube. Recently, I have even eaten full meals at restaurants. This is something I didn’t even dare to dream of about a year ago!