Turning Parkinson’s Disease into a Lifestyle Choice
My husband was diagnosed with Parkinson’s disease five years ago, and we have spent countless hours researching and speaking with experts to better understand the condition. It turns out that the picture is not as bleak as his doctor first described. There is substantial evidence coming from scientific research demonstrating that it is possible to stay in control of the symptoms and significantly slow down the progression of the disease.
Many people with Parkinson’s disease and their families can relate to the experience of receiving a devastating diagnosis from a doctor. We were told that my husband, Michel, had five years before he would need assistance with mobility. He was prescribed various medications and told to come back the following year for higher doses.
The experience was brutal, and it made us angry. We refused to accept it and decided to learn more and see if there was anything we could do to slow down the progression of his symptoms. Over the next few years, we delved into scientific research, consulted with neuroscientists, other neurologists, nutritionists, and physiotherapists, and most importantly, spoke with other people who have Parkinson’s disease. We discovered a wealth of knowledge beyond simply taking medication.
While gaining knowledge, we also gained optimism that there is a way for Michel to stay healthy for much longer. There are people with Parkinson’s who have managed to succeed and stay physically and mentally fit after 20+ years with the disease. They have accomplished this through the right mix of exercise regimen, diet, meditation, and medication. Additionally, the right mindset, mental health, and a healthy social life play a significant role.
Every person with Parkinson’s is unique and needs a tailored approach, but there are common things worth trying for everyone, such as supplements, physical and brain exercises, diet changes, journaling symptoms to adjust therapies, and social connections. Consistency and dedication are key to slowing down symptom progression. We’ve turned this holistic approach into a lifestyle for our whole family.
His daily routine includes 1 to 2 hours daily of physical exercise six days a week, which can be weights, cross-training, cycling, or walking, depending on the weather and other daily activities. Every morning, Michel has breakfast while doing 30 minutes of brain exercises using an app (he likes Elevate, but there are many others). Meditation has been a game changer for his mental health and anxiety since his diagnosis. Initially skeptical, he now meditates daily for 30 minute, and it’s become one of his favourite daily activities. He’s also learned autogenic, which he practices daily for 30 minutes to maintain his mental health.
We reached out to a speech therapist because his voice started weakening. Now, he does 15-20 minutes of daily voice and breathing exercises. He hates it and finds it boring but the results are amazing, so he sticks with it to keep his voice strong and clear. Hand rigidity is his biggest issue, so he does 20 minutes of exercises for dystonia daily. Unfortunately, his hands’ condition keeps deteriorating, but he keeps exercising!
Diet adjustments took a few months, and now the whole family enjoys a super healthy diet. We first eliminated alcohol completely, which was a great decision since alcohol is a poison for the brain. Following advice from nutritionists, we also switched to dairy- and gluten-free meals, we do not eat red meat, and only occasionally eat free-range chicken or turkey. We practice intermittent fasting (16/8 hours), coordinated with his medication schedule to avoid proteins around the time he takes levodopa based medications. We never eat junk or ultra-processed food. Our meals are mainly Mediterranean, plant-based, and home-cooked. I know it sounds like a lot, but once your whole family adjusts their eating habits, it becomes much easier to manage. Stay tuned for the next blog post where I will share my learnings and hacks from the past few years on Parkinson’s-friendly diet and cooking tips.
We also experiment with supplements. While I take them to complement my diet, my husband uses them to help with his symptoms. He’s tried many over the years, and we give each one 3–6 months to see if it works before deciding if to continue to take it. His most useful finds include vitamin B1, omega-3, THC (for insomnia), and recent experiment is nettle leaves (in oral solution). The whole family benefits from taking daily probiotic (we take Symprove, which is also conducting additional study on Parkinson’s). We always share his supplement list with his neurologists to ensure safety.
Inspired by our travels, we also explore Eastern medicine. Michel loves qigong and Golden Bowl, which he does daily for 20 minutes. We’re eager to learn more, especially about how Chinese medicine manages Parkinson’s, as half of the world’s Parkinson’s population is in China!
We’re also interested in technology. Michel tried Cue1, which didn’t work for him, but friends have had success with it. He tried hand massagers but gave up after six months without feeling any pain relief in his hands. He uses twice a day red light therapy and green laser from Symbex, and we still looking forward to see results of this therapy.
A brief mention about adjusting our lives to be more environmentally friendly and free of harsh chemicals. While there is some evidence suggesting that pollution and pesticides may contribute to developing Parkinson’s, we felt that making improvements in this area could be beneficial even after the diagnosis. Shortly after the diagnosis, we moved from hectic and polluted London to the much greener and more peaceful Oxfordshire countryside, which is perfect for long walks and offers healthier, more sustainable food.
We also minimised contact with harsh chemicals by replacing all cleaning and toiletry items in the house with organic, chemical-free products that are free of sulfates and parabens (in the UK, I favour Surcare products for laundry and small British brand SweetBee Organics for toiletry; their magnesium balm does wonders for Michel’s legs tremors). An additional benefit of chemical free house: our teenage kids stopped having spots! 😅 No doubts less chemicals better for everyone.
Lastly, compassion and helping others have healing benefits. Michel started a support group called No Silver Bullet 4 PD, which hosts monthly webinars with Parkinson’s experts on YouTube. It’s become one of the most popular channels for people with Parkinson’s and their caregivers, especially in the US and the UK, with over half a million views last year. Michel also supports others, especially those newly diagnosed, by sharing his experiences and providing support.
Five years after his diagnosis, Michel is not immobile as predicted. Some symptoms have improved, while others have appeared, but he feels in control of his symptoms thanks to his dedication and discipline. You have to be obsessed with the routine to make it successful. The whole family is involved in living with Parkinson’s — not just because someone in the house takes Sinemet, but because we all eat better, exercise, and meditate. I have no doubts we boosted all family wellbeing by joining Michel’s in his Parkinson’s journey. We refused to surrender to Parkinson’s and instead turned it into a lifestyle to live better.
Beatrice Zatorska is a passionate science communicator and technologist. She is also the Founder and CEO of the PD Buddy App, developed based on her husband’s daily routine to assist other people with Parkinson’s and their caregivers. The first version of the app is already available on the Apple and Google Play stores.
