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johnny

Are you happy with your PD healthcare

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There have been many mentions of organizations being devoted to better care for PD.Here where I live you would think being close to a Center Of Excellence and many Movement Specialists there wouldn't be a problem.The priority here is the group not the patient The myoclonus I have been struggling with for over three years has never been taken seriously and now the only advice is to seek counseling..LOLIve tried changing doctors so I don't have to go out of town with little avail.I also have tried patient advocates with little success

The flip side of this problem is my self management and listening to other patients has given great rewards.many people have helped me and they also had good doctors who cared for them.Unfortunately not everyone has made this effort and some have paid a dear price for it.I feel for those people and do what I can but not everyone is going to listen .What I have found is the less medication you can get by with the better you are going to be along with a healthy lifestyle.For what we pay for healthcare insurance you would think we would get a decent product,lol

Organizations who talk better care for us should act on it

Happy Holidays

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So far I have been pleased with my care and the Doctors I have worked with. I to am having some issues with Myoclonus and it is proving troublesome to get rid of. We recently change my timing of meds and it has helped some. There has also been other symptoms popping up that called or a med change.

Thankfully I am part of a study so I currently see my doctor more than normal and I get paid to see her instead of paying.

Blessings

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It is what it is. There's no cure for PD, so it comes down to managing your disease the best you can.

Here's the real problem.....Doctors in the USA want to make $250,000 a year (at least), so to do that, they need to see LOTS of patients........for as little time each as possible. A doctor can't spend TOO much time cradling each patient......they need to move on to the next patient. So, you are just not going to get lots of hands on care and concern for your condition.

That's just the way it is.

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Hi Johnny,

I haven't been able to find a MDS who I am comfortable with.  The options are few where we live.  I also have myoclonus jerks, mainly in my jaw.  Sinemet does seem to help but I need to stay on a high dose and maintain a strict schedule.  My doctor thinks that I'm taking too much but when I try to scale back the stiffness in my legs and back is more than I want to deal with.  So far, dyskinesia hasn't been an issue.  I'm in my 7th year since dx and managing fairly well.  Gardener

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Hi Otolorin,

I started one year after diagnosis.  I tried Amantadine, Mirapex and Azilect my first year.  The Amantadine was not effective, I had compulsive issues with Mirapex and intolerable side effects with Azilect.   I tolerate Sinemet very well.  How are you doing?  Gardener

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My mom has a great movement disorder doctor, he recommended Duopa pump, she decided to give it a try. She gets her Carbidopa thru the pump,  for sleep 1 Tylenol PM   and   0.5 mg Mirapex  twice a day  to help the  rigidity. She has  the pump for 2 years already and doing great. She is 73 years old ,diagnosed when she was 60.     We live in Miami  and  tried many doctors  until we found one that really cares for his patients. 

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Hi Gardener,

I appreciate your response,after dx,initial monotherapy was with Azilect,worked only for 3months.Tried Miraplex as well,couldn't tolerate it.Then decided to go with sinemet after some hesitation,due to fear of dyskinesia.It's been good so far.Thank God and the pwp on this forum for all the support.Being dxed for roughly two years.I was curious about your mentioning of dyskinesia in your previous post.Thanks again.

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