Young Onset Warriors
I am a Young Onset Parkinson's Warrior diagnosed at 54 after many years of doctors and tests, physical therapy and procedures, including 10 days in patient in Michigan. I started having tremors as a teenager, sleep disorder 20 years ago, severe neck pain and frozen shoulder a well as cognitive issues in 2019. All of these are symptoms of Parkinson's Disease but my neurologist said none of the doctors were putting it all together because I was too young. Awareness for this disease and its symptoms and affects are si very important. If you can help my friends and family in supporting me, fighting for me, and believing in me! Thank you so much in advance.
I may have Parkinson's but Parkinson's does not have me!
Parkinson's is a neurodegenerative disease resulting from loss of nerve cells in your brain which have stopped working or died.
Due to the loss of muscle control symptoms include rigidity of limbs, shuffling of feet, stiffness, pain, frozen shoulderr. Sometimes we experience hoarseness of our voice as if having a cold. I will eventually lose my ability to speak clearly with my voice becoming softer over time and the words more difficult to understand. Since muscle reactions are slowed there are instances of "freezing" and my legs will not move. Stiffness and pain in my hands cause me difficulty with buttons, opening items, writing, grasping.
When people think of Parkinson's they think of tremors but we are affected by the non-motor symptoms more than the motor symptoms. Cognitive impairment, including memory problems, issues with planning, thinking, paying attention. REM sleep disorder which is vivid haunting dreams which cause me to scream, yell, talk. Constipation because your body isn't told how to work properly. I am unable to control my body temperature so sometimes I am extremely hot and a few moments later very cold. PD causes a drop in blood pressure called neurocardiogenic hypotension, so I get extremely dizzy.
By the time you start showing symptoms you are already well into PD as the brain cells have already begun to die. I couldn't have done anything to prevent it. Knowing earlier would not have changed my treatment or helped me fight it off. There is no way to turn back time, only to live the best life I can.
There is no cure for Parkinson's! PD never goes into remission. PD is a progressive disease in which symptoms continue to worsen over time. It is not known what causes Parkinson's so there is no way to prevent it. There is no testing to try and catch it early. Treatment only helps with the tremors which I have had since I was a teenager.
Parkinson's does not define me. I will fight against it as hard as I can. I am a WARRIOR. I am UNBREAKABLE. I am INVINCIBLE. I am STRONG. Am I scared, of course I am! I don't know what my future holds, but then again none of us do. I just know I want to enjoy as many wonderful moments as I can. I want to spend time with friends and family making new memories.
I want to live, not just survive. I may encounter many defeats but will not be defeated. I will bring my own sunshine wherever I go and leave footprints of love and kindness.
"Life is not measured by the number of breaths you take but by the number of moments that take your breath away."
More testing and research is desperately needed so hopefully future generations will know more,know how to prevent and how to treat. I have participated in several research studies and will continue to do so in order to help with the advance of research and possibly a cure.There needs to be more awareness of what PD is. That it does not just affect an older generation. About 5% of cases are people under 60 years old.
I invite all of you to join our team to help in the awareness of PD. If you are able to I ask for you to donate towards our team. Many lives depend on it.
Thank you so much in advance,
Laura and Steve
Mama, Carol Sims, and Daddy, Welford Sims. Buggs the dog, Rocky the cat. And all my friends and family supporting me through the ups and downs