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What is happening to me?
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debspigz posted:
Two days ago I was diagnosed with Parkinson's after dealing with some of the symptoms for years. I'm glad I now know why I feel the way I do and I don't have to doubt myself anymore, but I have a problem.......
I know little or nothing about this disease at all. The neurologist that saw me wasn't even the same guy that I was scheduled to see. All he did was confirm that I had it, he asked me if I had any questions which I was just too floored to think of any, and that was it. I've used WEB MD for other things so I thought I would check but I'm still confused, VERY uninformed, and I have to tell you, very scared at this point. I'm totally on my own here so please forgive my asking so many questions......but I need help FAST.......
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DUKE MEDICINE
Mark A Stacy, MD responded:
Dear DEBSPIGZ,
Thank you for your note. We have many people here to support you, and share there strategies for dealing with the worries that have been handed to you about a diagnosis of Parkinson's Disease. I am sorry that the doctor did not spend enough time with you.

Here are some basics. Parkinson's disease is an illness that causes motor and non-motor symptoms, but everybody has a unique combination of these signs. When making the diagnosis, I look for a resting tremor and slowness of movement when performing finger tapping or foot tapping. It usually affects one side of the body first - and so one side is often worse than the other. Other early symptoms may be vivid dreaming or depression.

Please know that this is not a 5 year or even a 20 year road. We have many good medicines for PD, and I think you would feel better with medicines like levodopa, pramipexole, rasagiline, ropinirole, rotigotine, or selegiline. Please consider looking at these websites for more information:

American Parkinson's Disease Association (APDA)
National Parkinson Foundation (NPF)
Parkinson's Disease Foundation (PDF)
 
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njladyluck responded:
Hi Deb, I'm a Deb too. I was diagnosed with PD in July of 2010 but feel I had it much longer than that. I am now soon to be 64. The best thing I did was read all that I could on the disease - I know there is so much on the disease now. But the web sites that Dr. Stacy mentioned are very helpful. I also find a lot on YouTube - a lot is posted about exercise and PD and a lot of lectures by Movement Specialists are posted. Another thing that I did which I balked at first was to tell my job and to not hide the the fact that I had PD from everyone. I didn't want anyone to know. I didn't want people to think I was a defective person. When I would tremor I told people I had essential tremors because I didn't think that was as bad as PD. I can now be honest with people. I like it better that way. I try to not let my PD make me any different than anyone else. The decision about medicine is a whole new ball game - should I or should I not - if so, what kind, it is all so much at first. Scary too!!!! When I first started going to my neuro, I read that I should take a list of my newest symptoms and any questions I had and make sure I went through my list and wrote her answers so I would remember them. I cried from July when diagnosed until November of 2010. My neuro wanted me to see a therapist then and the therapist helped me come to come to terms with having a progressive disease. Through her urging I told my job and others. And if I have a question it is always good to come here and other PD forums and hopefully get some understanding of this very complicated disease. Best wishes to you. My first neuro told me something that I always like to remember. She said you can either die with pd or live with pd. I chose to live with pd.
 
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worn1 responded:
DEBSPIGZ I have just one thing to add. Make sure the neurologist you see specializes in Parkinson's.
just a note about telling your co workers and management.Tell them. One of the problems with Parkinson it can cause a delay in memory. Since I have explained the problem my co-workers no longer try to hide there memory lapses. ie sometimes i forget names. My co-workes use to hide the fact that they could not remember a persons name now they come out and ask what is his/her name again. So Parkinson's actually has helped at work. I have encourgaged people to ask questions. Most think it it just involves movement. They do not realize it affects speach,memory,ability to learn, sex drive. I can not think of one thing it does not affect. It even causes personality change. The one thing with Parkinson's if you do not use it you will loose it. Make sure you exercise both body and mind.
w
There are none so blind as those that will not see
 
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debspigz responded:
First off, I would like to extent my sincere thanks to Dr. Stacy, njladyluck and WOM 1 for replying to my post!!!!!!! I was so shocked that someone actually took the time to write bacl! I'm shaking like crazy and it's not the PD that's doing it........I've spent a good 10 years be-bopping from one doctor to the next, countless testing and with nearly nothing to show for it. I find it extremely hard now to trust any doctor for anything.......even the important stuff. If anyone of you has had that experience of being scoffed at and dumped in the lap of the next doctor to take care of you know how I've felt for that 10 years.
njladyluck, I hit 60 in January of this year so I'm right up there with you. I was a licensed group home daycare provider for over 30 years and I was good at my job. My career was always my strength, my kids all a part of my heart and soul. When these symptoms started it didn't take long for me to lose my daycare business because I was not longer strong. This was nearly that 10 years ago and it still breaks my heart.
WOM1, I had no idea about this disease to start with so I never even thought that there would be a neurologist who would specialize in it. The neuro guy I have now seems to be very friendly all right, but when he said PARKINSON'S DISEASE my mind froze and I couldn't think of a thing to ask about it. You can darn will bet I'm going to be checking into PD as much as I can and I will check out the websites.
Thanks to you folks for making my day a little easier to get through, bless you for your courage and willingness to help a stranger........!
 
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lovedogs1955 replied to debspigz's response:
Hi DEBSPIGZ---I also had several years of symptoms that didn't seem to fit togetther and it was SO frustrating. I kept telling all of my doctors through the years and finally, FINALLY, my neurologist noted the way I walked and then asked me to write a sentence. Things rapidly fell into place after that day and then I received confirmation of PD at at university movement disorder clinic.

What i continue to find frustrating is the huge lack of knowledge people in health care about PD. I will be the first to admit that I really didn't know much more than patients have tremors and some get dementia. I am a RN (disabled since '06) and I have learned so much. I have had bad GI effects; so bad that I have required several surgeries to handle them. Shortness of breath, chest pain, esophogeal strictures/spasms, continual muscle pain/tightness, and just recently found out that I now have problems with the muscles in my eyes not receiving instructions properly from my brain which means I now have diifficulties with vision accommodation. My short term memory is awful. Oh, I could go on and on, but I won't.

I have learned so much from this community...I know you will, too. We are always here for each other!
 
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njladyluck replied to lovedogs1955's response:
Lovedog - I like how you say: "Oh, I could go on and on,but I won't." I know that feeling. So many symptoms, so little time to explain. No one knows except someone else with PD. I could go on and on, but I won't.
 
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lovedogs1955 replied to njladyluck's response:
njladyluck---I was browsing through our discussions and was reminded of you. How are things going?
 
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njladyluck replied to lovedogs1955's response:
Hi Lovedogs, Thank you for your post!!! I am doing ok. Grandkids have been up here from NC and had them last weekend. They are 14 and 12. We went from winter right into a rainy hot summer. Trying to stay on my job until at least next June when the Medicare kicks in. The worst things going on for me right now with the PD is blurred vision and losing focus because I read documents all day and look at the screen. I am also having more problems with balance. I also get dizzy from low BP but I do what Dr. Stacy says and drink lots of water - always have a bottle with me. I work in NYC and going up and down the stairs at the two Penn stations cause me to get dizzy. How are you doing? How is the summer treating you? Have a great weekend!!!


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