Stories

S2

Challenged...Not Defeated!

Diagnosed at 39

My name is Stacy I am a mother of four healthy seven year olds (yes 4!) They are my surviving sextuplets and my utmost joy. One of my sweet boys has autism and I have been very active in the autism community.

I work as a cardiac nurse practitioner. One day in March 2010 I was using my hands to demonstrate the structure of the heart when I noticed my left hand shaking. I brushed it off as probably having too much caffiene (although I hadn't had any) and went about my day. The tremor never went away. Over the next year and a half the tremors progressed and the stiffness set in. With my medical background I had a pretty good idea about what was going on. Being firmly planted in denial, I refused to seek medical care. After all, without a diagnosis, it wasn't real. I had managed to hide my symptoms largely from everyone...even my husband. He noticed my tremor and gently encouraged me to seek care.

Finally, I was attempting to put my white coat on to see my hospitalized patients one day and I could no longer put my arm in my jacket. I called my primary care and made an appointment. After an MRI to rule out MS I went to a neurologist. She diagnosed my almost immediately and placed me on a dopamine agonist challenge. This was 11/21/12 - right before Thanksgiving. I allowed myself to cry for exactally seven minutes before I pulled myself together and drove home. My husband was sick with worry and fear, so was I.

I took the medicine faithfully and prayed it would not work. If it worked, the diagnosis would be confirmed. Much to my chagrin, it worked. My tremors were less and I could put my jacket on without a problem. I was both relieved and crushed.

I immediately sought out medical journals to arm myself with information and set my plan in place for facing this. When I found that there was a great "unknown" when it comes to the course of the disease I found that hard to accept. I am a planner, I need to know I can work for x number of years, the progression of symptoms will follow x pattern etc.

I have read so many inspirational stories on here of people doing great things after their diagnosis. I would love to say I am one of those doing great things. My accomplishment, simple as it is, is to get through a day. Take care of my kids, don't scare them to death by acting "sick". Take care of my patients. Be a good friend, a good wife. Defeat something (5k mud run in August). While I may not be moving mountains, I have Parkinson's it does not have me....and I fight to remember that every day. I am living in the moment, learning to take things one day at a time. Plan for the future, but don't be so obsessed with when I become disabled that I forget I am not disabled now! I am doing all those things I have been putting off, and I love it!

13 Comments

Stacy you're my hero. Love you sister.

Joseph Hardin, Jun 21, 2013

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You serve as an inspiration to everybody who knows you. I love you Stacy and I'm proud to be your friend

James Richmond RN., Jun 21, 2013

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What a blessing you are to everyone who crosses your path! I know that I am a better person because you are my friend! Love you girl!!!

Jeni Gray, Jun 21, 2013

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How were you diagnosed? Did they do a Datscan test to make sure?

Annonamous, Jun 21, 2013

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I am saddened by your diagnosis but not at all surprised by your incredible strength ... You have always been this amazing. I love you, my friend, and you are in my prayers.

Melanie Williams-Irby, Jun 22, 2013

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Stac....you are a true inspiration to me....you are such a strong woman, and an even stronger friend....I am so blessed to have you in my life! Go trophy wife's!!!! Love you!

Becky McCormick, Jun 22, 2013

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What an inspirational article. You are truly amazing and we are lucky to have you in our life!

Fancy, Jun 24, 2013

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Beautifully written...God bless :)

Holly DeKiep, Jun 25, 2013

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Stacy, you are a very inspiring person. In the short time that I have known you I am in awe of your incredible strength, and your uplifting attitude of making the most of "right now". I share your attitude that I have this disease, but it doesn't have me! I am here for any support that you may need, because I may need that support in return.

Jen Schuette, Jun 26, 2013

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THANK GOD, THAT IT DIDN'T PROGRESS RAPIDLY. I WOULD HAVE TO AGREE WITH SOME OF THE COMMENTS ABOVE, YOU ARE TRULY AMAZING. HOPEFULLY THAT FAMILY OF YOURS IS THE EDGE YOU NEED!!

JAMES SHOWERS JR, Jun 28, 2013

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Stacy, you go girl! I am glad I know someone with your strength and grace.

Cheryl Pasewald , Jul 8, 2013

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I am with ya Stacy, (Jason Diagnosed age 32 in 2010) One day at a time and work closely with a Movement Disorder Neuro specialist!

Jason STCLAIR, Dec 12, 2013

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Hello!!!! It has been so good to read these stories. I am now 43. Guess its been about 10 years since I've been Dx'd. I was a union Ironworker/Welder for many years. I became sick from the fumes of welding and have a form of Parkinson's called Manganism. I took sinemet till I really didn't even feel it was helping anymore. I went for all this time with my good days and bad days to mostly being in bed with rotten pain, constant muscle contractions, and now my arms feel like they are wrapped at the biceps and I'm getting spasms thru my chest. Is anyone else dealing with what I guess is dystonia. My muscles are so darn tight and they twist me around and put me in uncomfortable positions. I take Soma for muscle contractions and the dr wants to restart me on sinemet. I just don't know. I'm a single mother of three kids, who are a huge help to me. It's so hard to accept even today, that they are caring for me. I'm the mom, and I've always taken care of them. I need help and a good movement disorder specialist that's dealt with manganism. Sure would like to talk to anyone with similarities. I've lived a whole lotta life in the last ten years, I'm getting scared. Truth is, I've been virtually fearless. I've worked at a trade that many men didn't care for but I loved. Somehow , it's still so hard to let go of who I was and accept this person that I am now. It's an Inspiration to meet all of you. Thank u

Aimee Leed Lucas. , Jan 11, 2014

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