Science
Let me first say I am amazed by all the people around the world who are dedicated to finding a cure for Parkinson’s. There are so many ongoing projects that it can be hard to keep up. Some are working on improving medication while others are looking for a permanent cure, there are ongoing trials for new treatment methods, stem cell therapy, improved deep brain stimulation therapy, neuroprotective drugs, genetic studies, studies looking into ways to detect, treat or prevent PD and research on the role of exercise.
You could say now is probably the best time to get PD, as there is really hope for the future and scientists are making progress faster than ever before. But as we know, clinical trials and scientific research does take a lot of time, so even if and when a new treatment method is discovered it can take years before it becomes available to the patients. Raising awareness is important because all these projects need funding and the more attention they get the more likely it is they will be successful.
About 6 months before my diagnosis in 2019 I stumbled upon a BBC documentary called “The Parkinson’s drug trial - A Miracle Cure?” Where 42 participants were filmed over a period of 6 years during a groundbreaking medical trial. I remember watching it and being even more convinced I had Parkinson’s myself, even through I had just weeks before been told by the first Neurologist that I did not. The results of the drug being tested in the trial were astonishing - several of the participants experienced amazing improvements in their symptoms, but despite that the trial was not successful and further research was stopped, disappointing the whole Parkinson’s community and especially the participants who had their lives changed with this treatment that was later taken away. It was frustrating to watch, and I learned a lot about how complicated these projects are. For many years since the failed trial both participants and researchers have been seeking a path forward to doing a new trial. And it’s now happening! Thanks to Parkinsons UK. You can read more about the ongoing project here.
Sleep
I have written about insomnia, and for the last few days I have been struggling with this more than ever, leading to some really rough days with more symptoms, less energy, and some really dark moments and emotional issues. But I wanted to explore another really mysterious phenomenon called Sleep Benefit. Many PD patients wake in the morning in “off” state, meaning their symptoms are worse, they may need to stay in bed until their meds kick in, some are very stiff and slow and some find it hard to move at all. Patients with sleep benefit wake “on” in the morning. I belong to this group. It is quite fascinating, I can go to bed being very symptomatic if it’s been a while since my last dose. But when I wake up in the morning it is as if I don’t have PD for the first 30-60 minutes. This is my favourite time of day. People with Young onset are more likely to have sleep benefit a study shows. I have also found that if I take a short nap in the day in off state, I can feel a lot better when I wake up. This phenomenon makes me even more convinced that sleep is really important for people with Parkinsons, which makes it even more frustrating when you can’t sleep.
Stress
Stress - what is it? To me it has always been an annoying word. I don’t get stressed easily, at least I don’t feel like I do. I like to be effective, I like to do many things at once, I like working under pressure and I feel I perform better when I have more to do. I think many people, especially women - have heard “stress” being mentioned as a possible cause for all kinds of symptoms, and that was also suggested by the first neurologist who did not believe PD was causing mine. But as I have gotten to know this disease I have also learned more about myself and how stress can affect me. People with PD commonly report that acute stress worsens their motor symptoms, and that chronic stress worsens their non-motor symptoms. I hate to admit it, but I now know this is true also for me. Mice studies have even shown that chronic stress can accelerate disease progression. This can make any PD patient stressed (pun intended) and it is a good idea for anyone in general and anyone with PD in particular to do what they can to reduce stress.
In a recent study published in he journal, Parkinson’s Disease, “Stress and mindfulness in Parkinson's disease - a survey in 5,000 patients” the findings were pretty clear:
People with PD scored significantly worse than those without PD in nearly every category
Stress worsened all PD symptoms measured in the survey
The PD symptom with the strongest stress effect was tremor — experienced by 81.8% of patients.
People with PD under higher levels of stress reported worse disease severity on a daily basis.
They study also suggests that there are several self-management strategies one can incorporate to reduce stress, particularly mindfullness and physical exercise. I think that stress definitely can be a bigger problem for Young onset patients as many have additional responsibilities in their lives that can be stressful for anyone, like raising children and pursuing a career.
Silvia
I wanted to include a little shout-out to my very first PD friend, Silvia. In the weeks leading up to my diagnosis I was doing a lot of online research on PD and I found this woman my age, living in Oslo, who was openly sharing her experience living with PD. I spent a few weeks building up the courage to contact her, it was scary at first, but once I did I wish I had done it sooner. Getting to know Silvia was really helpful - she took me in with open arms, shared her experience and gave advice, and was (and still is) an amazing support in this journey, and also a friend who I really value. We try to meet once in a while and it’s always nice to talk to Silvia. She is an inspiration - always positive and optimistic, but also realistic and down to earth. I feel lucky to have such a good friend, one more benefit of having PD.
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