Organización del Mal de Parkinson

Fuente de inspiración, educación, apoyo y esperanza. ___________________________________________Inspiration, education, support and hope.
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PD: A Family View
 
These are short tales of how life is and how my family members handled Parkinson's disease.
 
They all take a major part on my life.
 
If you want to ask questions to any of them, please write to them on the botton form.
 
 
 
 
 

Tiffany Olivera-

 Memories of my childhood

 Oct. 2008

 

            As I was washing the dishes after a delicious home cooked meal, I was wondering how I got to this point in my life. My responsibilities seemed to be second nature, and I have never really given much thought of how I learned them. As a young adult in college, I feel that I handle my tasks at hand pretty well.

When I was a child, I remember feeling overwhelmed. I grew up with a mother who was diagnosed with Parkinson’s disease at the age of twenty eight. Having a mother who couldn’t take care of herself was challenging, but it had a positive impact on the kind of person it made me become and learn how to deal with problems that I faced.  As a child, my responsibilities were anew.

 

Every weekend my grandparents came to visit us to  ease the burden of my mother’s illness. They would take us  to the movies, shopping for food, and just enjoy life. It was our tradition on Sunday mornings before church to enjoy a homemade  breakfast. I could still smell the pancakes while they were cooking on the hot, buttery griddle. It was a taste of the easy life. The easy life I did not have day to day.

 During the week was a different story. My mother was constantly shaking and was unable to do the simplest of tasks. I not only had to feed my mother, but I also had to help her change her clothes, help her walk, and give her medicine and among other things of that nature.

 I would pretend that we were in the “Wizard of Oz” linked arm in arm walking down the yellow brick road. It was the only way she was able to walk.

As I was putting the dishes away, I realized how full I felt. I had made lasagna that night and it rested heavily in my stomach. I know that if it wasn’t for my mother’s inability to cook most of the time, I wouldn’t have learned how to cook at a very young age. . My mother was in no condition to drive so I had to walk two miles to a grocery store, get the bare necessities and walk another two miles back home with my hands filled with bags of food. Sometimes I’d even have to go when it was raining or snowing. Our stomachs weren’t going to wait for the weather to turn for the better.

My mother did not work because of her disability so money was a constant trouble. We lived on child support, which came rarely, and social security checks. As soon as I turned the legal age to work, I went out and looked for a job.I passed it onto my mother to help with the bills. It felt rewarding to help my mother any which way I could.

Since sleeping was the only time my mother would not shake and actually feel better, she spent a lot of time in her bed. I never blamed my mother because I could never even imagine having no control over your own body movements.

 My task at hand now is college. If I want a better future for myself I have to take full accountability for all the actions I make.  As a child, I never pushed my responsibilities aside and I shouldn’t have had such a huge load on my shoulders but I kept my head up high and embraced them and I am a much better person because of it.

 
 
 

 
 
 
 
 
 
My sister and PD
 
In the beginning, it was really difficult to understand what was PD and what to expect. I was a just 13 years old and always, to this day, looked up to my older sister. I went with my mom and her everywhere to help her, hospitals and doctors. I saw a woman turn from a strong daring person to what I thought at the time a helpless being. I thought I would lose her forever. I was wrong and I didn't lose her at all. She is a textbook case today of one of the few first young PD patients and being pregnant with PD.
I would always see her on the weekends because she lived far from my home in New York. When I would walk in the house, it would be ice cold! Like walking into a ice box. My sister would be shaking and crawling around the floor with a tank top and mini shorts on. She would say that it wasn't cold, it was hot! Her kids, my nieces, were used to this temperature so they thought it was normal as well. It was not!!!!!!!! I used to grab all the blankets in the house, including theirs because they did not need it, and wrap them around me to sleep warm. My sister would shake so much that she was so thin! She sweated constantly because her body shaked whether she would want it or not. It was very difficult for her to eat as well, her jaw movement made it difficult for her to chew. She barely left the house because it would be so much for her to do so. She used to use the scooter, but even that was hard for her to manuever because of her hand shaking.
                           
I still can't believe as I type all of this that it all happened. My sister is now an artist and a founder of the organization Maldeparkinson.com. She had DBS surgery and since then our lives changed. Especially hers of course. She drives, travels, dates, and is a mother/daughter/sister again. She has been in several bike races to raise funds for Parkinson's. She was invited to Washington, DC for several conferences regarding PD. My sister has been cited in several newspapers, in television news, and in several art shows! Just google her, you'll see for yourself! My sister has also volunteered in the Parkinson's Disease Unity Walk and has had her organiztion as a sponsor as well. In addition, she was able to be a mother of two beautiful girls again. Lastly, she is my sister that I have always had, but even stronger.
 
My sister was with me when I was in labor. All the way until the my baby Sofia was born. She gave me the courage to hold off going to the hospital until I just couldn't anymore! She had
me walk up and down stairs and all! Today, my Sofia is her biggest fan. When she looks at a painting my sister composed that is hung up in my living room........she smiles. I am very thankful
for this because it would calm her down when she was fussy!
 
 
My sister proved to me and my family that she was still the same person I knew as I was a teenager. Just with a condition, and she dealt with it. She is still that same strong daring person I always saw in her, but even better. She decided to try several sorts of treatment to relieve her condition, even implantation of embyotic stem cells! She was fearless and had hope. My sister is Elena Tuero, an artist and founder of Maldeparkinson.com. I love you!

 
 
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