Stories

Tonya's Story

I've Got a Life to Live

Diagnosed at 34

When I was 7 months pregnant with my third child, I started to notice some difficulty writing. The letters were crowded and small, and my fingers felt weak. My first thoughts were, “Was this pregnancy related? Maybe water retention was making my fingers stiff?” “Was it carpal tunnel syndrome?” After all, I had been a data enterer for the past six years. Being a full-time working mom of two young boys, I put this symptom on the back burner and concentrated on my busy life.

After my daughter was born, I went back to work and immediately became aware of the writing problem. I notified my boss who made arrangements for me to see a workers compensation doctor affiliated with my employer. After weeks of exams and physical therapy, there was no improvement. Over the next several months I continued to seek out answers. I consulted neurologists, rheumatologists, internal medicine specialists, and started a physical therapy program. My symptoms now included nerve and muscle pain in my wrists, elbow and shoulder on my right side. I was told I had everything from tendonitis to lupus. My neurologist at the time agreed to put me on temporary disability from my job while I tried to get an answer that made sense.

Finally one doctor suggested I make an appointment with the neurology department at UCLA for a consultation. After two and a half years of frustration, I was diagnosed in less than 15 minutes with early onset Parkinson’s disease. I had an answer, but what did this all mean? I drove home in tears wondering how I was going to break the news to my husband and mother.

Now looking back, 8 years later, I am in a much different place. After going through bouts of depression, experimenting with a variety of prescription drugs, and struggling with destructive side effects, I’ve connected with other PD patients, and have learned to live with something I have little control over. What I do have control over is my attitude and outlook. There are many things I can still do, although maybe in a different way. It’s still difficult to button a shirt, brush my teeth or keep up with my kids, but it’s not impossible. It would be easy to curl up in a ball and feel sorry for myself but that would be giving up. I’m a mom, a daughter, a sister, and a friend, and there are people who love me and depend on me. I've got a life to live.

5 Comments

Love ya girl!!! :)

Krystin Radke, Dec 10, 2011

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My heart goes out to you. I was diagnosed at 42. I am now 52. The mental stuff is the hardest for me- meaning not feeling sorry for myself , etc. It's a tricky illness but there is much love and compassion out there.

Joan, Mar 6, 2012

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just make strong your faith as i am doing with parkinson

mir golbaz, Jun 3, 2012

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Thanks everyone for your comments and support. Since I posted my story I've had DBS surgery. My experience couldn't have been more positive. When I realized that my meds weren't working as effectively as they had been I decided to look into the procedure. My neurologist referred me to a neurosurgeon at UCLA for a consult. After I was deemed qualified to have surgery I had an MRI, neuropsychological testing, and general pre-op tests performed. The entire timeline from start to finish was only about 2 1/2 months. Now, 5 weeks post surgery, I am almost completely symptom free. My dystonia (foot cramps) has gone away, the bradykinesia has virtually disappeared, and my energy level is through the roof. I haven't smiled so much in years. If you or anyone you know is considering DBS, please don't be afraid to research it and ask questions. I would be happy to share more about my experience. It may be the best decision you've ever made.

Tonya , Aug 6, 2012

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I was just diagnosed yesterday 8/20/12. I took almost a year
and a half. I am a little confused as to what to think. I
have been through most of the symptoms, moments of sadness
and depression is the worse. My faith is strong, it keeps me going. I am looking into natural medicine and chelation
therapy. You inspire me! You are very courageous.

zinora, Aug 21, 2012

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