Stories

Julie1

From Autism to Parkinson's

Diagnosed at 41

On August 18, 2000, my life would be forever changed but for the better. I just didn’t realize it at the time. My youngest child Sam was born into respiratory distress and placed in a neonatal ICU for 2 weeks. As I gazed in marvel at this beautiful child, I realized that my life would never be the same but to what extent or how, I didn’t know.

As Sam suffered with sickness the first two years and, after consultations, with many doctors with different specialties, we received a diagnosis of Autism for Sam. We’ve worked hard. Sam has had the right doctors, the right therapies, and the right school. He is now on a path to college and a full normal life. He recently shared his testimony in front of 1000 people at our church! Julie2

During the time of Sam’s baptism, little did I know that my own life would radically change once more. Several years prior to this, I suffered from extreme fatigue, muscle cramps, and anxiety. A month before Sam’s baptism in November of 2012, I noticed a muscle twitch in my right thumb, and then it stopped. Then I felt as if I was developing arthritis, but all blood work came back normal for this. As tremors developed in my right hand, and I started losing my balance, I knew something was terribly wrong. Tremors were constant at that point when I wasn’t doing activities that required activity with those limbs. Doctors such as rheumatologists and neurologists couldn’t figure out what was wrong with me. I was screened for Multiple Sclerosis, had many other blood tests done, was misdiagnosed with Fibromyalgia, and was also hospitalized twice. Walking assistance with either a walker or a cane was necessary since the early part of November due to the fear of falling and severe pain. 

In December, I developed more unusual symptoms such as involuntary limb movements and extreme slowness in daily activities. I was currently reading a book on fibromyalgia since I had the diagnosis of it at that time. As I opened the book, my eyes went directly to a misdiagnosis scenario about a woman that had been diagnosed with fibromyalgia but really had Parkinson’s because tremors were not a symptom of fibromyalgia. I then researched Parkinson’s and then highly suspected had it. I typed up a detailed list of symptoms and shared them with a friend in our Sunday school class that has Parkinson’s. He suspected Parkinson’s as well.

After this, I immediately saw a brilliant neurologist in Houston, and he also suspected Young Onset Parkinson’s Disease after the physical examination, but he suggested a trial of L-Dopa to help confirm the diagnosis. The night before I tried the first dose in January, I couldn’t walk down the street to our community mailbox without a walker. After the first two doses, I finally could walk without assistance and all shaking stopped for the first time in three months. I knew without a doubt that I had Parkinson’s Disease at that point. A few days later, the neurologist in Houston confirmed a diagnosis of Parkinson’s and so did a local neurologist soon after that. I’m now feeling close to how I did before due to my medications, but I know I need to exercise, eat properly, take my medication, and attend support groups. It's just the beginning of a new road in life.

I believe that trials in life are intended to be used for good. I’ve witnessed this truth time and time again through Sam’s upbringing. I believe this will happen through my Parkinson ’s disease as well.

5 Comments

How many of you had a very quick and somewhat violent onset of PD?

Julie, Mar 25, 2013

reply

THAT'S A VERY GOOD QUESTION. AS A YOUNGSTER, WELL YOUNGER THAN I AM NOW, MY NICK NAME WAS 'FLASH'. FREEZING THOUGH I LAUGH ABOUT IT WITH MY INTERNAL MEDICINE DOCTORS AND NEUROLOGISTS; ATAXIA; APHASIA. I NOTICED THAT THERE MAY HAVE BEEN SIGNS FROM CHILDHOOD

JAMES SHOWERS JR, Apr 4, 2013

Hello my english isn't very good but I try to post a comment here because I like APDA'site and appreciate that this association has created a center for young people with parkinson's disease.
I'm 55 and have parkinson's disease since 14 ans : I was 41 years old ... and my first symptoms (tremors) begin after a violent professionnal discord (in relation with my private wife). I was very affraid.

Corinne Belmudes FRANCE, Jun 19, 2013

reply

I'm sorry you went through this these difficult trials. I think it's the trials in life that make us stronger. Take care and God bless, Julie Nichols, diagnosed at 41

Julie Nichols, Sep 28, 2013

I was "normal" one day during a very busy time in our lives when I had pushed myself to work and attend each child's extracurricular functions. The next day I had such severe pain in my legs that I could barely walk and was diagnosed with fibromyalgia like Julie. I didn't receive the PD diagnosis until six years later after a tremor started in my thumb and I'd seen four different specialists. I was 49, although I believe the loss of my sense of smell started 10-15 years earlier.

Patricia Hoon, Jan 28, 2014

reply

Participate in the discussion and share your insights

In reply to:

cancel