Young Onset Parkinson's disease with dystonia and Dyskinesia

     Life was so easy back then, back when we were little girls, thinking about our crowns of daisies. We would go out each day, the suns warmth hitting our skin, searching for daisies that grew throughout the silky grass. This is one of the memories I have from visiting Germany with my Mom, little sister, and brother. Mom must have taught us how to chain the daisies, but I don't really remember that part, but I do remember sitting there, waiting for our doll clothes to dry on the line, chaining daisies.  Our grandmother bought us each a doll, and each day, my sister and I would wash their cloths, hang them with pride, play ring around the rosy, while our Oma checked on us through her kitchen window. By the end of the day, our dolls clothing smelled like summers rain, so fresh, while each of us wore our crown of daisies with such joy.  Such simple things, but some of my fondest memories.

     Today I got a call at 9:30 a.m., my sister asking me to come down so I could go to the hospital with her. She has YOPD (young onset Parkinson's disease), and suffers from Dystonia. The only way she explains the pain is like a Charlie horse cramp that doesn't stop. It can start anywhere in the body, and often goes from her feet all the way to her neck. Her hands and feet literally curl up, and stay that way for hours! Can you imagine that? You can actually see the muscles in her body contracting, the pain is excruciating to say the least, and often treated with narcotics. She goes hours with extreme pain, that is difficult to witness. I've posted two pictures with her permission, just to give you an idea of what it looks like. 

There are no medications to prevent dystonia, or stop it's progression, although we are hopeful for a cure, treatment continues to be difficult.

 

I'm not a doctor, or educated in this field, everything I'm writing is based on personal experience.

                      This is what I've learned so far................

• One doctor said that she is the worst case he's ever witnessed, and that the pain is indescribable.
• Today the doctor and I spoke privately while she was being treated, he said that he's never treated a patient so young with this debilitating disease.
• Many people believe that Parkinson's is a shaking disease that affects the elderly, through Michael J Fox, he brought to light the severity of this disease with media attention, the foundation, and books he's written. 
•  No one talks about Dyskinesia or Dystonia, which is often part of this disease too.
• There are lots of medications to treat Parkinson's disease, but I'm not educated enough to speak of them. Yet.

Dystonia is painful, muscular cramping throughout the body.
Dyskinesia is involuntary movement.

Both are difficult to treat, both cause extreme stress to the body.



I love my sister so much, and will always be there for her, to advocate for her, and to do everything in my power, to support her with unconditional love.

To read her blog, just click on the link, as you'll learn first hand, the day to day struggles from a real person, living a life with YOPD.

http://chrisgontayopd.blogspot.ca/2015/04/staying-positive.htmlhttp://chrisgontayopd.blogspot.ca/2015/04/staying-positive.html