Stories

Nicole

DIAGNOSIS: STEP BY STEP

Diagnosed at 27

Things in life couldn’t be better! My husband worked at GM, I have 4 beautiful kids and a nice home. Yup, content and happy!

Then, in the Summer of 2007 we went camping on an 11-day adventure. I had just developed a small tremor in my right hand and a twitch in my eyelid. At the time, we took it as stress and thought nothing else of it, but I started to walk strange. My neck was so stiff, and the tremor was already starting on my right side. So I went to my doctor. He said you have Essential Tremor and put me on medication. I was at the highest dose of the medication, was pale, almost grey, and couldn’t do a thing but lay on the couch. The next step was to a local neurologist who said I was causing the shaking and it was all in my head. Then to the shrink that didn’t help. About a year passed, and I saw a Movement Disorders Specialist, and I was diagnosed with YOPD at 27. Now I am 31 and and my husband has been my caretaker. I have mobility issues: tremors, speech (mumbling). Thankfully, my family gives us great support. Parkinson’s can be really lonely. If you wanna talk or if I can try to answer some questions, write me at nicole.l.silver@gmail.com. I look forward to talking with you.

7 Comments

Sending positive prayers your way. Glad to hear that you have a great support system to assist you.

Debbie Fourcand, Dec 1, 2012

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Im 34 diagnosed at 31. my email is marciabruchmann@yahoo.com
I would email you know but Im curently at a work computer

marcia, Dec 22, 2012

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Nicole,
The greatest step you've taken since your diagnosis was to communicate with your peers. We are on a journey together- join a support group and talk about "the way having PD makes you feel" with your husband annd kids. PD hasn't changed who you are. VERY important to stay public and not to slip into a "why me" state.
It's NOT fair to be diagnosed with any disease but stay optimistic and involved. None of us did anything to deserve this fate but we hcan't lie down. I recommend Michael J.'s Roundtable event(s). Michael is a very humble real guy. His staff are all very courteous and generous with their time. Information is your friend. Keep the faith..smile especially when you don't want to. :)
D.-

David Dorsey, Feb 12, 2013

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TRULY AMAZING TESTIMONY..BEST TO YOU AND YOUR CAREGIVER NETWORK.

JAMES SHOWERS JR, Jun 9, 2013

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Thank You so much Nicole. My story is also on this site but I would love to communicate for support. Parkinson's is with us everyday, and no matter how good your caretaker, every once in awhile we are all alone with our thoughts, fears, and sadness. I am so happy you have a supportive family, as mine is always there for me but I have to ask for what I need. It almost seems like they, and I don't blame them, but have moved on from the initial shock.
I drew great strength this morning from your story, and it made me feal okay with my own demons. Such as those inner questions all of us have, such as "am I doing enough" "should I be me getting out more" "should I be being more active" But honestly, on certain days I can only do the bare minimum
It is so hard explaining to people why I can do something one day and not the next. I guess some people just dont understand us, escept us. But I thank you and would love to talk. mattbennett13@outlook.com

Matty Bennett, Aug 23, 2013

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Thanks matt wow this is the first time i have read my comments ty to everybody for your support.matt is it ok to look for u on facebook?

nicole, Aug 23, 2013

I was told I had essential tremors from the time I was 18 till the age of 28. My neurologist at the time was convinced I did not have YOPD, even though I was taking Sinemet and it masked my tremor. It wasn't until shortly after I gave birth to my third child that I had a mental breakdown from post partum depression and over using my Sinemet. I was hospitalized and taken off all my meds, and was told I had a conversion disorder. I was completely immobile, couldn't walk stand or do anything on my own and also shook constantly until I fell asleep. I lived like that for 5 months. My neurologist wouldn't even see me, told me I should go to a psych ward.
I did check myself in at St. Marys in their psych med ward. That is where I was introduced to my current neurologist, whom put me back on sinemet. I was walking and functioning soon thereafter and was diagnosed with YOPD.
My brother, who is 15 months older than me, also has YOPD. He was diagnosed at the same age as me. I am 30 yrs old now and am still learning how to live happily with PD. My husband is my main caretaker also.

This site is one of my first real attempts at finding support and help with dealing with PD. Your story caught my attention bc of the age you were diagnosed, you being a mother and your misdiagnosis of Essential Tremors. I hope we can help each other.

Katie Acker, Jan 22, 2014

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