My Story

Who would have thought that at age 46, I would have been diagnosed with Young Onset Parkinson’s Disease? This was how it all started…

In November of 2015, I started experiencing different symptoms that finally sent me to a neurologist in February 2016. I was having tremors(shaking) all on the right side, the sensation on my right side was different, aches on the right shoulder, arm and leg, right side overall just heavier.  I had two different MRI’s on my brain and neck.  They wanted to rule out MS.  I did not have any lesions which was a good thing. So it was not MS.  I had numerous blood tests to rule out a few different diseases that mimic my symptoms.  They all turned up negative.  My neurologist then wanted to consider Parkinson’s Disease.  This disease is very difficult to diagnose.  One way is to try medication that only works for Parkinson’s Disease.  I started on on my first round of medicine the middle of March.  Over the next few months they increased the dose as I was seeing some improvement in my symptoms.  The only disadvantage were the side effects of nausea, dizziness, and being tired.  He then started me on my second meds which had no side effects but didn’t work as well.  While on this second medication, I realized  how much the first medication was working since most of my shaking came back. He then started me on my third medication which worked great and not many side effects.  He diagnosed me in June with Parkinson’s but wanted me to see another neurologist who specializes in Movement Disorders (Parkinson’s) to confirm the diagnosis.  In July of 2016, I saw a neurologist with Loyola University.  Jere and I were really impressed by this doctor.  He asked a ton of questions and did many little tests.  He did confirm that I have Young Onset Parkinson’s Disease.  It is rare for someone 46 years old to have this. (5% of Parkinson’s patients are younger than 60)  I am in the early stages of Parkinson’s.  I have no history of Parkinson’s in my family but it is genetic and there are no answers of why it has started so early for me.  

What does this mean for me?  Like any disease, we don’t know the actual prognosis and every person progresses differently.  I have begun my own research and have learned so much.  My favorite site is Michael J Fox’s Foundation for Parkinson’s Research. This site has many answers to questions I have had.  Everything we went through with our sweet Luke, I learned we have to advocate for ourselves.  Even though the doctors have been great and have answered many questions, there is so much to still learn.  Hearing other people’s stories have really encouraged me.  There is no cure for this disease but we know there is someone GREATER than a cure. During those first few months it was difficult. Trying to process this diagnosis was emotional and uncertain.

I know the plans I have for you declares the Lord, plans to prosper and not to harm you, plans to give you a hope and future.  Jeremiah 29:11  This verse has meant different things to me in the past, but in the beginning the Lord gave me this verse in a new light.  I know the Lord knows His plan for my future and I might not.  But what I do know is I have HOPE through Jesus.  I have to continue to cling to that each and every day.  This last verse was a verse Jere and held tight to with Luke and even more after we lost him because we knew he was running and playing without getting tired or in pain.  Isaiah 40:30-31 Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait (hope) for the Lord will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.  I know in time, I might not be running or walking steady, I might be weary or in pain, I might not remember well, I might be shaking uncontrollably, but what I do know is that I will continue to gain new strength with the hope in the Lord.  I know there will be tough days ahead, but through prayer, my family and friends, I will come out on the other side much stronger than I started.  Jere and I experienced this with our sweet Luke and we wouldn’t have traded any of those days we had with him.  There might not be a cure of Parkinson’s but with God all things are possible. (Matthew 19:26)