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I fineally accepted P.D.
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donnadee49 posted:
I am a 62 year old who has been treated for Parkinsons symptoms for about 4 years. Recently friends and family have noticed a facial change and speech garbling at times.I guess I'm relieved not to be guessing anymore. No Tremors. Just a bad gait in walking and now the face.I have a wonderful neuroligist, psychiatrist, and G.P. who all love and support me.I am scared. Any voices out there?
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JustMe284 responded:
Hi. I'm scared too. I am 50, diagnosed a few months ago. I am doing great on just Azilect, but I Get these creepy internal tremors and my voice is too soft, as you describe. And my lips feel quivery, but when I look in the mirror you can't see it. So, a hug from me to you. We can do this.
 
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lovedogs1955 responded:
Another cyber hug from me....I'm 56 years old and find that I am having a few more "bad" days than good ones now. When I am having a bad day, it's hard to get my muscles to cooperate, especially to speak and make sense. I almost sound like I am drunk. I also have very soft speech at times, so I have to almost yell to be heard. After almost 10 years of crappy health due to cancer and the treatments, now I have to deal with PD. Like you, I have a wonderful and loving support system of a husband, family and friends.

You aren't alone.....that's so important to remember!
 
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donnadee49 replied to lovedogs1955's response:
I sat with my G.P.and we discused my "changes" in the last 4 years. This all started with perefieral neuropathy and a mild stroke.The neurologist spotted the P.D. gaite and the stiffness of muscles. The G.P-- pulled out of me the following: Slow limited movement, very difficult to turn over in bed, Struggling to get off sofas in out of chairs, poor balance,Handwriting so tiny I can't read it,and "freezing often when I walk. I am on 4 doses of cinimet per day plus requip.I have begun muscle exercises. I live in an assisted living facility here in Fla.I have been in denial ,due to fear , for 4 years.My daughters are frightened. My parents (87yrs. old) are heartbroken. I just need helpful encouraging words.
 
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DUKE MEDICINE
Mark A Stacy, MD replied to donnadee49's response:
Dear donnadee49,
I am sorry to read how difficult things have become. I cannot imaging the feelings of a PD patient, so please do not take offense if my comments are off target. I will ask other readers (the real experts) to chime in and correct me, if I am needing correction.

Here are my thoughts. I think you will start feeling better after the denial and fear are tamed. I look at the diagnosis of PD to be similar in some respects to the diagnosis of cancer. The reason I do, is because a very important 1970s (?) book, On Death and Dying, explains stages of dealing with a serious diagnosis. They are Denial, Mourning, Anger, Bargaining and Acceptance. Michael J. Fox describes PD as "the gift that keeps on giving..." I think he means that he bargains - if it does not get any worse, I can live with this. And then it gets worse, and he starts over again. My hope for you is that now that you are past denial, and you may be mourning for your children and parents, that you get angry, and get back into your life. That would bring some acceptance. It is my experience that when patients get there, they improve, no matter how bad my doctoring may be.

Please take heart - and take action to help your daughters. They need their mom.
 
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donnadee49 replied to Mark A Stacy, MD's response:
Hi guys.
I just got back from a 2-day visit with my daughter who is very involved in my life....medical and otherwise. I had advised her to take an hour and go to medweb and learn about P.D.
Well, she did. AND...... she spent the whole time staring at me and watching for changes.After a bit I asked her what the hell was wrong!! She noticed a difference in the way I moved when talking. Shoulder movement, neck extending, leaning in close to food and then stretching up straight frequently. Garbled speech that I TRIED hard to eliminate...
Little things that she had never noticed going on. Then we talked. A GOOD talk..... and you folks and Dr, Stacy helped me get to the point where I could do that.I am not so angry any more... just determined!!! Thank you all! Donna Dee.


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