Email sent to Family and Friends about my Parkinson's

Dear Family and Friends,

The short version: I have some news to share with you. On November 2, 2004 I was diagnosed with Young Onset Parkinson's Disease. Before gasping in horror, read on. The news, while not good, is not as bad as it sounds. Certainly not as bad as it would have been just a few years ago.

The longer version: In Sept 2004, I went for my annual physical. It was with a new doctor (Dr. B) so I was put through the whole battery of tests. While there, at the insisting of my husband I mentioned this tremor I had in my right hand. It wasn't that big of a deal to me. It didn't do it all the time, just sometimes when I was sitting still watching TV. But, it had been going on since January of 2002. I had mentioned it before to my Dr. at the time (Dr. G) and she had sent me for an MRI on my hand & shoulder and they found nothing wrong. So, I just chalked it up to being work related since it seemed to flair up when my work load increased. (I now know that my stress level increasing was the real culprit)

So, back to Dr. B...I mentioned the hand tremor to her in passing and she said we would have it looked at. Included in the other tests she sent me for (EKG, blood work for cholesterol, blood sugar) she also referred me to a neurologist. The day the referral came I thought it was a mistake. I had forgotten that I mentioned the tremor to her. I called the Neurologist's office to tell them it had been sent to me in error and they informed me that Dr. B had called it in.

On Oct 22, 2005 I entered the office doors of Dr. R. I went by myself because I honestly thought that they would take one look at me and tell me to get the hell out of there office because I was completely wasting their time. I couldn't have been more off base.

I met first with a young neurologist fellow (UMass Memorial is a teaching hospital) named Dr. A. He was very nice. Spoke to me at length about my family history and the history of my symptom. I told him I had this tremor in my right hand and demonstrated it for him. I told him that I thought it was nothing and that it really didn't bother me but my husband wanted me to have it checked out. I mentioned that Paul noticed it more than I did. The Dr. seemed intrigued. He then started doing a bunch of tests on me. Of the "touch your nose and then my finger" variety. He then started doing things to test the strength of my right & left side. It was here that I first noticed that my right side was significantly weaker than my left. Of note, since I am right handed.

After a few more tests, walking up and down the hallway etc. he told me to have a seat. He said that I would now need to see the Dr. who was above him. "The Head Honcho" as he put it. After a bit of time Dr. R came in to see me. She looks like Lucille Ball and is very down to earth. She ran me through all the same tests that Dr. A did. Then had me sit down to talk to me.

I remember her saying that it was definitely neurological but she couldn't say what. She said that she was leaning towards Young Onset Parkinson’s but that she couldn't rule out MS. I said, "So it's not just nerve damage?". She smiled and said no. After this I don't remember much of what happened except being told that I needed a bunch of tests to rule out the possibility of MS or something else. I made the appointments and left the doctor's office in shock.

I called my husband P from my cell and told him what happened. He asked me exactly what the doctor said and I couldn't remember. This is why the tell you to bring someone with you when you are going to get bad news. But, I thought they were going to take one look and me and laugh. They were suppose to tell me that I was wasting their time. This is not what was suppose to happen....

Over the course of the next two weeks I had an MRI, EMG (lovely test where they sent small volts of electricity up and down your arms) and blood tests.

On Tuesday, November 2nd P and I made the trip back to the neurologists office. Here Dr. R confirmed her original diagnosis and told me that I most likely had Young Onset Parkinson's. The reason for the "most likely" is because there is not "test" that they give you to diagnose Parkinson's. They basically, rule everything else out.

Our world got even more surreal when the very next morning, after 6 plus years of trying, I found out that I was pregnant. Now, before you get too excited, the pregnancy ended four weeks later when I had surgery to have what turned out to be an ectopic pregnancy. (I recovered just fine from the surgery with all my parts still intact! Call me if you want the gory details...this email is already long enough)

It was at this point P and I had determined that we were now living in Bizzaro World. Within a weeks time, the Red Sox win the World Series, I am diagnosed with Parkinson's and we find out I am pregnant. It was on hell of a week!

So, you may be wondering, how am I doing now? I am doing good considering everything. P and I are facing this together. One day at a time. I have had my good days & my not so good days. I’ve been sad, angry, depressed and I think now I am finally at a stage of acceptance.

The one great thing the doctor pointed out to me was that if there was ever a time you were going to have Parkinson's disease there was no better time than now to have it. She anticipates that they will find a cure for this within my lifetime.

As for now, I am not taking any medication. My symptoms are not to the point where the interfere with my life. If you are curious to find out more about exactly what Parkinson's is there are some great websites out there. I recommend: www.parkinsons.org and www.michaeljfox.org

The symptoms that I am presenting with right now are a tremor in my right hand, stiffness in my knees, elbows, wrists & shoulders, extreme tiredness, difficulty rising from a seated position, and a "hitch" in my gait when I walk. Feel free to call or email me with any questions. I am more than happy to talk about it.

To do something positive with all this, P and I are going to participate in the annual Parkinson's Unity Walk (PUW) in NYC this April.16th. I'll be sending you an email soon looking for support. I hope you can contribute. 100% of all money raised goes for research to find a cure!

Love you all!


P.S. I just had a second opinion with a doctor from Massachusetts General Hospital yesterday and he confirmed the diagnosis. When he first met me he was convinced that Dr. R had been wrong. I was too young and my symptoms were not obvious to him. But, after running all the tests, he concurred with Dr. R. He also told me that if I was going to have a neurological disease, this was a good one to pick because he believes there will be a cure in the next 5 to 10 years. Or, at least a way of slowing or stopping the progression on symptoms!