What to do about Frequency for those of us with Parkinsons

I'm Bev Appleby and have had PD for 6 yrs. I take LDN, sinamet just half a tab at 11 am and half at 5 pm and I also take Azilect. I'm doing well. Very little shakiness. But I do run to the bathroom alot. I was wondering if anyone knows what I should do about frequency?

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  • hi bev well i have tried sinamet it dont suit me as there are 2 types of sinamet one a slow release ,i do take 1 azilect per day 1 mg im not sure were you are from i take madopar 5 times a day 3 at 250/50.. 2 at 100/25 from a time period 9am to 8.30 pm..plus i exercise 7 days a week..as for going to the toilet im normal.i think you need to take one more sinamet a day..sinamet dont really work taking it late at night as when you sleep the sinamet dont seam to work when you sleep..maybe take your last one about 9 pm i have had parkinsons for about 5 or 6 years now..i also take Q 10 every day..not sure if it helps BUT WHO KNOWS,,my name is john hope this helps.

  • Thanks John for your interesting words. I'm very concerned about taking too much sinamet. It works for about 5 yrs then you have to increase the dosage. Then you get the terrible side affect which is called dyskinesia. It's worse than PD. Wish I could find a natural remedy for frequency rather than more medication

  • Taking cranberry supplements has helped me some.

  • Thank you!

  • Hi Bev

    I'm currently using Atromorin ànf from the first day I have been noticing àn overall better attitude ànd I have much more energy. Thrtrt

  • I just started to take Atre Morine a How much do u take and how often?

  • Thankyou for all your help

  • At first I started with 2 scoops upon rising and approx 10-12 hrs later took 2 more. I began using yogurt to mix. I later found it more effective to take one scoop in the morning and 4 hrs later another.Changing my doses to approx every 4 hrs.That seemed to work better for me. I later found using sweet potato instead of yogurt worked much better. I also began doing Tai chi and chi gong meditationd and exercises.The results have been encouraging to say the least.I hope this helps you and don't hesitate to contact me anytime if any of my experience so far can help!

  • I love what you r doing. I'll try Atremorine in yogurt as I donot like it much. I do Tai chi and walk/run 5 evenings a week. I'm in pretty good shape. Just a slight tremor ,frequency and difficulty sleeping

  • Just wondering if you take sinamet as I tried the atre morine at 10 AM and then I didn’t need my 11 am sinamet until 2 pm. I'd love to eliminate sinamet completely

  • Yes I currently am prescribed for sinemet 2@4 times a day with Miirapec 2 tabs 3 times a day and so far have been able to reduce my need for them most of the time.altho I still take some. I started using yogurt to mix it with but found sweet potato better to use.After that I found applesauce works best.The delivery and absorption seems the best with applesauce.I hope this is helpful for you

  • PLEASE TELL ME HOW TO ORDER IT

  • hi rodrick i dont want to burst your bubble but i bought 2 lots of this revolting stuff,,its cost me a lot of money.theses peope are nothing but scammers.preying on people like up.they even followed me on face book and said i never mixed it right, when i said its no good,,its rubbish.. but one day soon it will happen and they will say on t v they can cure it,john.

  • good afternoon bev..yes i know that can happen..its all about how much pain you can handle..i understand every thing about how things work with parkinsons and the people who have it..you can only do your best..try different things..exercise more..when you walk breathe through your nose deeply and out through your mouth..in hale out hale..try dancing..anything you can think of..try push ups on your kitchen bench..stand a meter back from your kitchen bench put your arms forward on the bench and do push ups that way,,good for the arms.

  • I guess I touched the wrong button. Anyway I don't have pain

  • I guess exercise is the best treatment so far. I'm so concerned about side affects of the meds..especially sinamet as dyskinesia is terrible

  • you are very lucky bev that you dont have pain.phew it can be very painful..so count your blessings..

  • What kind of pain? Location of pain?

  • well just the usual type of pain in the right arm and leg and toes,,sometimes good sometimes bad..u just learn to live with it.

  • Thankyou foe your great suggestions

  • Doc. Stanley Fahn

    World-famous leader in movement disorders, Dr. Stanley Fahn was the keynote speaker discussing myths and misconceptions in PD, and several members of the University of Florida Center for Movement Disorders and Neurorestoration also spoke and participated.

    video

    healthunlocked.com/parkinso...

    37:20

    Myth 4. “No response to Sinemet 25/100 three times a day is considered a non-responder.”

    a.Each person should be treated individually and each may require a different dosage of Sinemet to get a response.

    b.Some physicians fail to push the dose after it reaches 300 or 600 mg/day.

    c.My “limit” is 2,000 mg/day.

  • Bev

    If you have been diagnosed for 6 years sounds like you are doing well. I guess you dont want drugs to treat your urgency, i dont know any other effective method. Maybe someone here does.

    I wonder who told you about terrible dyskenesia after 5 yrs of sinimet, i have mild after 8 yrs -, some do some dont. dyskenesia depends alot on age, it affects young onset the most.

  • I guess I've seen it in patients in my nuerologists office and Michael J Fox has it

  • Hi Hikoi. Thanks for your suggestions. You sound like you've done alot of research yourself. I feel like sinamet is just a bandaid with the real problem simmering underneath. I want to get to the base of the problem and correct it.. May sound impossible but I believe there is a solution or cure for every disease. We just haven't found it yet. And I'm going to try everything that won't hurt me to get better. So if you have any good ideas please let me know and thanks

  • Bev

    Best of luck with your search. There are many claims on line but I have never actually met anyone who has reversed or cured PD. Many people who make that claim were misdiagnosed or never diagnosed and claim their symptoms as PD when they were not. It is notoriously difficult to diagnose.

    I say this not to be discouraging. There are lots of things people can do to help themselves live the best life. Exercise is the main one - there is an interesting thread on here about cycling. Nutrition / diet can also be important. Some people take supplements, often there effectiveness is difficult to measure.

  • Beverly2017

    There will be a webinar on bladder problems Thursday April 20

    the link is below...

    I hope it can help

    Best regards

    michaeljfox.org/webinars

  • Thankyou I'll watch it!

  • @Beverly20 What did u take away from the seminar on bladder control/frequency? Anything workIng (4 mos ago)?

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