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NCFred

Recently diagnosed with PD advice welcome

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I was very sluggish mentally and physically, do not have tremors, and didn't know what problem was for about a year. Went to internist, and endocrinologist. because my senthroid had been reduced from 175 Mg daily to 125. endo wouldn't change my senthroid level.  Internist put me on prosac and thought that would help but I didn't see where it did any good. Wife insisted I go to a neurologist. Neurologist examined me and put me on carbo/levod immediately October 2017,age 65. which helped, and I later asked for an increase in dosage. . I am now at 1 and 1/2 pills of 10/100 carbo/levodopa 3 times a day. Mornings I am weak, it takes a while for the levedopa to rev  me up.Current neuro gave me requip to take at night as a extended release, because levodopa has a 4 hour half life. , but it kept me awake all night and gave me bad dreams. Tried taking it in the morning but still had bad dreams at night. Pharmacist says many prescriptions are given  for timed release levodopa at night, but neurologist is hesitant. Neuro prescribed azilect  but it is very expensive and I didn't try it, is it worth it? PD foundation says I need to find a neurologist who has a fellowship in movement disorders.  Current Neurologist does not have movement disorder speciality.   Sister wants me to go to a teaching hospital for treatment. what advice do you you give as to medications? exercise? and other treatments, and other doctors?

Thanks,

Fred

Edited by NCFred

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Absolutely see a Movement Disorders Specialist. The Hopeline can refer you to a PD Center of Excellence near you. Treating PD is about so much more than medication.

Dianne 

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7 hours ago, Beau's Mom said:

Absolutely see a Movement Disorders Specialist. The Hopeline can refer you to a PD Center of Excellence near you. Treating PD is about so much more than medication.

Dianne 

Well said !! 

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From where I sit (husband, sister, and best friend from childhood all have PD), here are my thoughts:

  • Run, don't walk, to the best Movement Disorder Specialist you can find (listen to your sister!)
  • Start a Parkinson's-specific exercise program (like BIG, PWR! Moves, Dance for Parkinson's, etc.)
  • Find a Registered Dietitian Nutrition who specializes in Parkinson's and get an individualized assessment and recommendations
  • Learn all you can about PD

I'd suggest skipping posts from Dr. Hinz as the posts appear to be spam on this forum. Take a look at other threads for more info. 

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Golden, thanks for the feedback. Yesterday, changed to carbo/levedopa ER  from regular carbo/levedopa, much better.

Edited by NCFred

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