Paola aka @wonderpaoletta and I met randomly, you know good things happen without plan them.
I’ll shortly explain how did it go: both of us are on a Facebook group of moms living in another country. Paola lives in Texas and I live in Tennessee.
We talked, and we immediately found complicity since we are leaving the same situation… I don’t remember how nor when we got our phone numbers because it’s been totally natural.
But why an interview? Because Paola aka @wonderpaoletta is facing a big personal challenge and she’s doing it with a big smile on her face. What’s her secret? Let’s find out. If doctors are reading, hope they can help… Enjoy it!
What happened to you about 10 years ago?
P. Everything started when I was 20. I gradually started to feel tired and anxious, but I thought that was because I was working and studying at the same time. The next few years, always gradually, I started to have shoulders and arms pain, but I was working as a masseur, so I thought that was because of that, I couldn’t stop myself because of my pathological enthusiasm. I applied for college and a little after I met the man that became my husband, my heart was blowing more and more, but the tiredness didn’t leave me fortunately not even the enthusiasm. My mom and sister were worried, they saw me changing, I was tripping while walking and the pain wasn’t leaving me alone so while my boyfriend went outside the country for work I split myself between work and study and at the same time I started to investigate: I did tests, visits, visits and more visits until, after horrible tests I’ve been told something that I couldn’t imagine even though I was prepare for the worst… I got diagnosed young-onset Parkinson.
How did you react to the news? And your family?
P. My relatives were shocked. I was more worried about not being able to realize my dream anymore, including be a mom.
Could you explain what the disease is about?
P. Parkinson is a neurodegenerative disease of the nervous system. It manifests differently from person to person. I, for example, have a lightly shiver and my deambulation is compromised, my brain doesn’t produce enough dopamine. If you check parkinson.it you’ll get more details.
Which important decisions did you make for the treatment?
P. For the first two years I did the standard treatment because they let me think (I have any problems to use this expression) that without that pills I would have been worst, and I couldn’t stand on my feet anymore. The collateral effects were terrible. I constantly had hallucinations, I couldn’t sleep more than three hours per night and I had horrible nightmares, panic attacks, anger attacks, lot of hyperactivity, embarrassing perspiration. I remember when I went for a visit and I told the neurologist about the nightmares, he told me that was one of the most difficult aspects of the disease. I was without words. I came back home anxious. My life was going on, I wanted to get my degree and live with my boyfriend. I told him about my disease by phone, he was in Turkmenistan, I just remember the silence of that moment… fortunately the feelings were true and one night while we were chatting on messenger he asked me to marry him. We got married pretty fast and we moved to Brazil together. I left my job and the change caused a mix of incredible emotions.
Despite everything, you decided to get married and have a baby: how did the disease influence your private life?
P. We both wanted to be parents so a year before leave I got all the possible tests to understand if there would have been risks of transmission and fortunately it turned out that the genetic mutation isn’t transmittable. When we decided to have a baby, my preoccupation were the antibiotics. My gynecologist suggested to use a opposite procedure to stop the cure so a little at the time I decreased the dose until I was clean. The tiredness came back, but magically all the bad aspect disappeared, I started sleeping again, nightmares and hallucinations disappeared. Leo came, with him lot of work, alone in Brazil wasn’t easy but I started to feel a super hero! Since I was breastfeeding I didn’t start taking antibiotics and one morning while I was walking with Leo and with the sound of the ocean, I told myself: “Why should I start the therapy again?” I understood that the antibiotics weren’t slowing down the disease and I was so scared to live that moments again. So, I choose to find another way harder believe me, physiotherapy, physical exercises and at home I was doing all alone, grocery, cooking and take care of the baby now six years old… Even though at the end of the day I’m dead tired I’m happy and fulfilled! I’m so glad I had Leo, he is my biggest satisfaction. Another reason why I’m not taking antibiotics is because after 10/12 years they have no effect anymore, though is a continuous increase of dose and often I must take more antibiotics to counteracts the collateral effects like sleep disorders. I honestly know that there won’t be a cure and sooner or later I will have to assume medicines again, hopefully as late as possible.
I follow you on social networks especially Instagram, I know you have an account you particularly care. What is it about?
P. My Instagram account is @wonderpaoletta, is not long that I created it, though it gives me lot of satisfactions and I met so many extraordinary people with Parkinson of which two young guys that are not taking medicines. My goal is to send positivity to people that are fighting this disease and at the same time compare with them and see if the researches are really working.
Your pictures and smile send positivity: what’s your secret?
P. I’m enthusiastic about everything, maybe that’s my secret.
Paola, how are you now? How are you feeling?
P. Every day is different: sometimes I feel exhausted, sometimes full of energy. I feel good during these days!
What do you enjoy doing in life (beside delight yourself in the kitchen)?
P. I like when I feel good because I feel happier and everything seems easier. My favorite hobby, now I’m doing it less and will sound a bit weird, is lay important tables. In USA I use placemats, but I think that with the right details can look elegant as well. At some point in my life I wanted to be a wedding planner, me that I did my reception wedding in my mom garden (very well cared and pretty) with Fiorentina barbeque and grilled vegetables lol. Ah once I put make up on spouses, yeah, I should have been a wedding planner 😉. And I love shopping, shame on me!!
If you could make an appeal…
P. I’d do it to the researchers, for me the solution is on the stamina cells. We need to find a real cure!
What’s your dream?
P. My dream is, might sound selfish, being contact by a team of researchers that tell me: “we got it, we know how to do it!”. It would be amazing know that I can be as strong as I was before again.
Thank you, sweet Paola aka @wonderpaoletta for your availability and your pictures. I wish you a lot of luck <3
Post translated by Alice Perego.