#ThisIsMyJourney Chapter 3

What should society/your loved ones/your caregivers/your friends do to make life easier for a PWP (person with Parkinson’s)? 

We should not be seen as patients but as regular, healthy people. I think love, compassion, and attention can prevent disease progression.

When I'm sad and depressed, I cannot stop focusing on myself too much. That’s when socializing, being embraced, and even having an occupation helps me live comfortably.

It’s valuable to be a member of a Parkinson's Foundation for a person with Parkinson's to come together with other PwP. That’s why I would like volunteer philanthropists to pay more attention to this issue.

Caregivers and loved ones need to be very patient and close to the PWP. The common areas at home should be designed with the PwP in mind.

What would be your first suggestion to a newly diagnosed PD patient?

Firstly, this PWP should receive immediate psychological support to accept this situation.

A cornerstone of successful treatment is a good doctor-patient relationship. By expressing warmth, empathy, and motivation, doctors can help PwP feel like they have been heard, and they are not alone.

Painting, music, sports (especially table tennis and swimming), and being engaged in horticulture make you forget the disease. Following a balanced diet improves general well-being and boosts your ability to deal with symptoms of the disease. Eating plenty of whole foods, such as fruits and vegetables, lean protein, beans, legumes, and whole grains, and staying hydrated are key ways to stay energized and healthy overall.

Have you ever felt like you cannot express yourself enough to your doctors, caregivers, or loved ones?

More than it should be. People think I am drunk until I say I am a PwP.

Each PwP’s journey is unique and requires creative solutions to cope with daily routines. Would you like to share a creative solution that can help other PwP?

I have a small, soft ball that makes my life easier. This ball is tied to one end of a string and the other end of the string is for holding. In the moments of my freeze of gait, I hold the ball in my pocket by the rope and hang the ball towards my feet. When I aim for the ball and try to hit it with my foot, I can walk again.

Attaching the apparatus around the bed is also useful which makes me move better. You can put the string on the ceiling, which makes it easy to get up while holding on.

The cane helps me walk more comfortably. Sometimes, I walk by hitting my cane which makes me stronger. Also, I strongly recommend rubbing the bottom of the feet for 15 minutes before going to bed with a massage tool to sleep comfortably.