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  2. Medical Questions

    1. Ask The Doctor

      Michael Okun, M.D. and Daniel Martinez, M.D. answer medical questions regarding Parkinson's disease and related matters. All posts in this forum are anonymous.Without seeing you and examining you the doctor cannot make specific diagnoses and recommendations. The suggestions given in this forum are for general information only.

    2. Ask The Surgical Team

      Kelly D. Foote, M.D. and Michael Okun, M.D. answer questions about surgical matters and Parkinson's disease. All posts in this forum are anonymous. Without seeing you and examining you the doctor cannot make specific diagnoses and recommendations. The suggestions given in this forum are for general information only.

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      This forum is an archive about nutrition and Parkinson’s and is not accepting new posts. The suggestions given in this archived forum are for general information only. If you have a question about nutrition, you may post it in the Ask the Doctor Forum.

    4. Ask the Pharmacist

      Mark R. Comes, R.Ph., answers questions on the subject of medication management in controlling Parkinson's disease symptoms.

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    6. Talk To A Speech Clinician

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      A place where all those newly diagnosed with Parkinson’s disease can share their feelings and opinions. Post in this forum are NOT anonymous.

    3. Caregivers Forum

      A place where caregivers of people with Parkinson's disease can converse and address their unique concerns. Posts in this forum are NOT anonymous.

    4. Young Onset Forum

      A place to connect with other people diagnosed with young-onset Parkinson's disease.

    5. DBS Forum

      A place for those with Parkinson's looking into having DBS surgery, or connecting with those that already have had it done.

  • Posts

    • I have been on time-release sinemet (Rytary) now for about 6 months.  It's working excellent me.  For a long time I"ve noted that my diet has huge impact on my symptoms so I'm seeing if anyone else has much experience with Rytary and diet factors.   Let me give some background on my case of PD then further explain my diet question.   BACKGROUND - PD:   i was.diagnosed March 2003,  Symptoms have been slowness of movement, rigidity, dystonia, fatigue and brain fog.  By 2011 I had bad dystonia and dyskinesia.  Further complicating things I had a nightmare reaction to a dopamine agonist,. Requip (personality change, crazy impulsiveness).  I had DBS (first side Oct 2011, second side Jan 2014)...which reduced my meds by close to 70%.  Huge benefit to get much of the meds out of my system.  I had an MRI for my lower back 6 months ago and both stimulators were turned off for the procedure for 45 minutes.  Unbelievable.....I could hardly move a muscle in my entire body.  I've been told by my programmer at the Cleveland Clinic that there's only one other person in their system that gets as rigid as me when turned off.   About 2 years ago my lower back started hurting from stenosis.  This helped prompt "freezing of gait".  The worse the pain, more problem walking. Have had radiofrequency ablation done twice, still waiting for a good result from second time.  Freezing is my most troublesome symptom currently.   BENEFIT OF RYTARY:  Going to Rytary has virtualiy eliminated "offs" for me and exteneded time between doses.  My current med schedule is: 6 am        1 3/4 -Rytary 23.75 mg / 95 mg        1 amantadine  100 mg       (Started with 2 Rytary, gave me dyskinesia, use gelcap to reduce to 1 3/4 and works great. Not hard to do).  12 noon          1-Rytary 23.75 mg / 95 mg         1- amantadine  100 mg         6 pm                1-Rytary 23.75 mg / 95 mg         1 - Azilect 1 mg 10-11pm         1-Rytary 23.75 mg / 95 mg MY EXPERIENCE WITH DIET SO FAR:     On regular sinemet I was very sensitive to protein intake, needing to avoid med time by 1 hr before and 1 hr after to be effective.  In addition....for both regular sinemet and now on Rytary...if I totally eliminate protein for a period of time I feel fantastic.   No freezing of gait, clearer mind, higher energy, less fatigue, and I need less sleep.  I use 100% fruit juice (V8-Fusion) and cut it with 50% water.  Drinking 2 bottles per day  (equivalent of 1 bottle uncut juice = 27 grams carbohydrate, 0 grams protein).  I've done this for 5 days before and, again, unbelievable how  much less my symptoms are.  Of course, I know I can't go with no protein forever!!!  One more complication...I know I have a food sensitivity to at least potatoes (a nightshade).  Eat lot of potatoes and the next day I have stiffness, joint pain, and fatigue.  So, I don't know yet if some of my problem is "exactly what all I'm negatively sensitive to" or "protein sensitive".  I know of at least 1 other person with PD who had the same impact of removing all protein for a period of time. Does anyone have experience with how much protein, impact of different types of protein, and best time of day to eat it! Sorry for the long message!            
    • Hello,    I have had major GI issues as well. It's very frustrating. I want to warn of long term use of acid blockers. They caused kidney damage in my son. What we have moved to is  tbs of diluted apple cider vinegar daily for reflux. Benefiber helps a lot. As far as major reactions to food, I haven't figured out. Some days I'm fine next, it's awful. 😓 I hope you get some relief soon. 
    • Hey Bobbi Another forum member (Adam, i think)  posted this elsewhere  Before you need to refill your Azilect prescription next year try applying here. https://tafcares.org/  They covered all my $1100 out of pocket each time I refill. All I had to pay was a $10 copay. The coverage is good for one year then you can renew.
    • Hi Super! I'm giving "Az" more time. Problem is I have to find a less expensive pharmacist. My insurance increased it to 275. per month this year. Has anyone used NW Pharmacy out of Canada? It is about 100.+ less and not restricted to just 30 tablets at a time.  
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