Filed under: MUSIC

LIGHTS UP WATERMELON SUGAR

​I don´t think anyone have missed out on the fact that Harry Styles was the host and guests at SNL yesterday. He is a true entertainer! His new song `Watermelon Sugar´ is a great tune. Give it a listen!!!

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Filed under: ME

FUN FACT

(Pictures from Pinterest)

1. My nickname since my childhood has been Pepsi within the fam. My mum started it, haha!

2. The nail on my right big toe is kinda weird/broken because a guy jumped on my foot in school. It´s at least 5 years ago, if not longer and I've lost the original toenail but this one grew out and looked rather strange. Thanks mate!!!

3. I don´t like the smell at the cinema. I haven't seen a movie in ages because of that.

4. I learn lyrics from start to finish after hearing a song once.

5. I'm both academic and creative. I wanted to be a neurologist as a kid but due to different aspects I decided to go for my artistic dreams instead.

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Filed under: PARKINSON´S

PARKINSON´S HAS BEEN A PART OF MY LIFE SINCE THE DAY I WAS BORN

My grandfather had Parkinson's. He was my father figure, safety and best friend since day one. My mum worked for him as a carer for the most of my childhood. I only grew up with one parent so it was quite natural for me to spend a lot of time at my grandparents house because that was were my mother worked. My grandfather treated me as his own daughter, he took on his role as my role model with everything he had. I've never met anyone with the same sense of humor as we two had and he was such an intelligent man, he knew much about everything.
Every time shows like `Jeopardy´ or `Who wants to be a Millionare?´ were on the telly we always found a reason to compete.
We shared the interest for the world in general and we always talked about the small and big things that happened around us. I've always been a girl with a lot of questions, my grandfather was the opposite, not quite as open as I was and am. But we got very much along, he understood me and I understood him.

A warm summer day 2012 my grandfather past away at the age of 73, at that time I was 14 years old.
He´d been placed at a nursing home after a hospital visit. He was driven by ambulance to the emergency and a couple days later they realized that they wasn't able to give us enough resources to be able to care for him in his own house. The "best" care would be given by professionals at the nursing home. We didn't want him to move in to that kind of home, he didn't want that himself either but we didn't have any choice. He was to hard to handle for my mum, he was heavy and strong and she was the only one who took care of him, there was no one to assist or give her a hand if she needed one.

A patient with Parkinson's needs his medication and food on the right time through out the entire day. And as we all know, that's not the reality of today, not at hospitals or at nursing homes of any kind. There's no room for being late, treating people with carelessness nor being nonchalant if you work with people. Especially if you care for humans with a diagnosis that requires medication on time. That's the key to a better everyday life. That was the reality of our life during the time he was at the nursing home. We tried to communicate with the nurses but they didn't have time in general so trying to get them to understad the importance of consistency was like talking to a brick wall.

During his time with the diagnosis at home he was pretty active, thanks to my mum. He was strong and steady. We went on long walks together but at the same moment he moved into the nursing home his day to day activities went out the window. At the end he sat in a wheelchair and due to that the blood circulation wasn't the best. He past away due to a blood clot in his heart that could have been avoided if he'd been more active.

I´ll never get my grandfather back but I want to spread awareness and teach the world about this. Enough people are diagnosed that it somehow will affect us all in a way that we either get it, know someone who got it or passes someone on the street that has Parkinson's. I've grown up close around it, seen it with my own eyes and experienced a few times when my grandfather's dose of his medication has been so wrong that he almost became another person. But I was lucky enough to have the right information from an early age regarding how the diagnose could progress and what the sideeffects might include, I was aware of these things so I wasn't that scared when it happened. He got bad hallucinations that made him think that there was monkeys on the couch, people in the bushes, trucks outside his garden and writning on the walls. I knew that when those episodes came it was time for him to go back to his neurologist and he could be hospitalized for weeks until they stabilized him and found out his right amount of medication.

My grandfather wasn't Parkinson's, he had Parkinson's!

When I wondered anything about it he answered as much as he could, just like the people closest around me did. We spoke and joked about anything and everything. I think that was the key to our relationship and everyday life.

With the knowledge I've got, the backstory I carry and the amount of experience I have, I´d love to share our story to people. There's more to Parkinson's than shaking, which is a common misconception by people in general. More people should get involved, media should speak more about it to fill in the knowledge gap, spread awareness so we one day can find a cure. Even though I am young on the paper, I´d say I have more experience in this field than a lot of other 21 year olds. Parkinson's has been a part of my life since the day I was born, it has shaped me to the young women I am today and the outlook I have on life.

I believe there is a cure, I also believe that you can live a beautiful life with the diagnosis. But more research and resources is needed.

My grandfather always told me that I made people listen, and I think it is about time to use that talent for a good cause.

​#BestOfNouw

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