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amy2beth

Just diagnosed at age 40

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hi amy2beth

currently 63, diagnosed at 48.  imho exercise is #1 to try to slow progression and possibly make you feel better. there's lots of research on slowing progression and/or reversing pd so you should stay abreast of this research.  there might be a cure  in the  next 5 years.

 before i was   diagnosed i had 2 frozen shoulders and now when my medication wears off my left shoulder and right knee hurt.

if you qualify for social security disbility get familiar with  how to apply.    SSDI is a seperate  insurance system that straight SS and  you can really screw up if you don't have the doctor backing you up thru regular documentation of  your progression and if you wait too long to file after you  stopped working.  i  was denied for SSDI, being a 1 person company do no manageement describing how my pd interferred with my work, not seeing my neuro regularly, waiting to lo'ng to file killed my case.

 

bottom line is keep informed, exercise,  don't be afraid of sinemet, and stay in the best shape you can so you'll qualify for  the cure when it becomes available.

 

don't get suckered in by supplements, chelation  therapy,  alternative therapies mentioned on mesage boards, you don't know if the poster actually  has pd.

best of luck

 

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Hi, Fellow members I am also newly diagnosed October 2017 my symptoms have been going on since 2011 I am 52. A few years ago I spent a lot of time and money trying to find out what was wrong with me; saw many doctors and specialist and took many different medications was labeled a hypochondriac, drug seeker and was still feeling bad. My family thought I was doing something to myself because I was walking like a zombie ( I was having a problem with the left side of my body and a lot of pain and stiffness)  I was very depressed and discouraged I felt like I was going crazy. Finley I changed primary doctors and she sent me to a movement disorder specialist. Once I was diagnosed with PD and started reading about it; it all made since. I do not have a family history of PD and really didn't know that much about PD. I have been on carbidopa/levodopa since October when I fist started on it I would get sick every time I took it. I still have terrible pain-( like someone is standing on my shoulders) and 0 energy. They have given me a Rx for Vicoprofen and it helps a little. I am looking for any suggestions for the pain and how to get some energy some days its hard to get anything done.

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For me the most painful issue is the dystonia. I have never been one to take pain meds, but the dystonia had me asking for something.

I saw my MDS a few weeks later and she optimized, (upped) the C/L. And told me to optimize PD meds first then look for other causes. If you have just started the PD meds it can take a little time to get it all adjusted for your correct dose and even which meds work best for you.

 

Welcome to the club though, and remember what works for others doesn't work for everyone.

And nobody else has your PD, although we all share similarities.

This is one of the best places on the internet for information and suggestions.

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