Early onset Parkinson's and dystonia, the true story

My sister has Early Onset Parkinson's disease, diagnosed over 10 years ago. This week she was admitted to hospital with complications,  a disease called Dystonia is often accompanied with the diagnosis of Parkinson's. With dystonia, your muscles in your body contract, causing uncontrollable pain, with Chrissy, her whole body, from head to toe are affected, including respiratory distress.

My sister is my hero, someone who I admire, look up too, my advocate, my sounding board, and my best friend. She's an R.N, who advocates for her patients, a friend who will do anything for you, an Aunt who adores her nieces and nephews, a sister, a daughter, and a mother of 5 outstanding children. This disease had taken so much from her, the life that she once knew is changing. She is the same welcoming, social, active person, helping others with Parkinson's through a support group that she leads, she has written a book called "The Other Side" due to release next month, and still supports me through my depression, and the overwhelming concern for my husband who has cancer.

I am her call to person, the one who usually accompanies her to the hospital emergency room when her husband is working. The most common statements that we here are "She so young, we've never treated someone of this age" to "We don't know how to treat you", and the best one yet "Next time you have an attack, go to Toronto, we just don't know what to do with you". However, that being said, she doesn't have time to go to Toronto, the dystonia hits her all at once, she can't move, her hands and feet curl up, her muscles are so contracted that she often cries quietly, knowing that the pain will last anywhere from forty five minutes to six hours, depending on how fast they see her.


                                                          

Like Parkinson's, there is no cure for dystonia, there are medications for temporary relief, but they don't usually last.   She is usually treated with heavy narcotics, which leaves her restless and confused, that's when the dyskinesia kicks in, usually form the Levodopa.  Dyskinesia is characterized by involuntary muscle movements, and diminished voluntary movements. Dyskinesia can be anything from a slight tremor of the hands to an uncontrollable movement of the upper body or lower extremities. https://en.wikipedia.org/wiki/Dyskinesia

While she was admitted to hospital this week, she has since been transferred to Toronto by ambulance, where her neurologist practices, we are hoping and praying that they will introduce newer medications, take away some of the others, and treat this the best way possible. To allow her to continue to make a difference to those also suffering from this disease, to continue on her second book, to be a wife, mother, and someone who plays an active role in her community.

I want to sincerely thank the nurses and doctors who cared for her, with the respect and love she deserves. They advocated for her, sympathized with her continued pain, and did everything in there power to get her to the hospital in Toronto. My only prayer now, is for her continued care, and a possible remission.