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Everything posted by otolorin

  1. Plant Paradox

    Hi janey, is this all about diet?Any link ,where I can read about this?Would appreciate it.
  2. Good morning!!

    Hi,jb49- Good luck on your decision to go the DBS way.Have you considered other option like the du dopa pump?I know that some pwp on this forum have recommended the pump for people who are scared of brain surgery.If I may ask,what are your current symptoms,which defy medications,that makes you consider DBS?Just like LAD posted above,the whole PD journey is so scary.We can only continue to pray for a breakthrough miracle for a cure.It will happen in our life time,by the GRACE OF GOD! AMEN.
  3. Hi ShopGuy, it is good to know that some pwp on this forum have tried some of these repositioned medications and share their experiences,even when the final phase of the trials are not completed.I will be looking forward to discussing these medications with my MDs,during my next appoinment.Thanks for your response.lol....
  4. Good post ShopGuy.I am sure anyone with PD or any disease that doesn't have a cure wants a cure,some people might be more desperate than others If the drugs are really promising as the researchers claimed,some pwp wouldn't care about the price and will get them off label.I am thinking of participating in the nilotinib trials,but would have to check with my MDs first to know if I will qualify.I checked and found out that the price of nilotinib is outrageous without insurance coverage.Washington should do something about controlling the price of drugs. ShopGuy-how long were you on Isradipine? Was it beneficial?
  5. The drug exenatide is not yet approved by FDA for treating PD,will any doctor be willing to prescribe this for a pwp?I understand it still have to undergo more trials for effectiveness and safety in PWP.Exenatide and Nolitinib showed promising results from previous trials,but are not yet approved by FDA for PD.Some MDs, might be willing to experiment and prescribe them for PWP,but I don't know any.How I wish this medications can be available soon for treating PD.
  6. nativ

    Dear Pharmacist, thanks again for your insight.
  7. Untreatable Dyskinesia

    Dear doc, for some people who take C/L and have developed dyskinesia,what are the options left if amantadin and dose rescheduling does not work.If a pwp is unable to deal with side effects of other agonists and C/L is the only drug that works, except dyskinesia.Then what do you do,other than DBS?Does mucuna p cause less frequent dyskinesia as claimed compared to C/L? I would appreciate your insight.
  8. Insomnia

    EnC, you are welcome.
  9. nativ

    Dear Pharmacist, pwp on this website have claimed to have replaced parkinson meds with mucuna puriens effectively because they developed dyskinesia from sinemet.Are these false claims.Somebody stated that he takes amino acid with mucuna to enhance passage through the bloodbrain barrier.Do you think this works.And what is the best way to prevent dyskinesia,if you are on C/L?
  10. WBV- Since it looks like you are here to promote vibration machines and your post depicts you as an expert in this field.Can you explain the biomechanics behind whole body vibration therapy?
  11. Insomnia

    Some PD medications have insomnia as side effects too.They tend to change the sleep cycle.Magnesium,melatonin,and alprazolam helps.Some people benefit from antidepressant trazadon for sleep.
  12. Waruna01, I learnt mucuna causes dyskinesia and dystonia too.Then it is difficult to dose it.Sometimes you don't get the good quality to buy.
  13. Hi, everyone using C/L or Levodopa in any form,do you experience rigidity and stiffness of muscles when undermedicated or during wearing off periods,more than before you started using this medication?If so,this is termed secondary dystonia according to the link below.How do you deal with secondary dystonia,if you don't want to increase the dosage of medication?http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/secondary-dystonias/dystonia-caused-by-parkinsons-disease
  14. Need your opinion...on Retirement disability

    Nevergiveup, goodluck when you see your MD again.
  15. Hi, everyone.Our hopes on the horizon.Just for your information,if you were not aware of this already.Please read the following link. http://www.express.co.uk/life-style/health/836881/parkinsons-disease-symptoms-diabetes-drug-treatment.
  16. How did you talk to others?

    EAN-good response.I have learnt something. Melissab-we all need to try and stay strong.Before I was diagnosed,I used to encourage my patients alot,not to give up.Now I am in a similar situation.I just have to strive ahead.Let us hope in our life time,there will be a big breakthrough that will lead to a cure.Let's keep fighting.
  17. Restore Gold

    Musicman, you know what is confusing, the literature says, people developed dyskinesia after using sinemet for 5 to 7years.But I have noticed on this forum that some people developed it even less than a year after using sinemet.Now the question is, is it the quantity of sinemet taken that causes dyskinesia or the duration of using the drug?
  18. Restore Gold

    Italy52, how long did you take sinemet before you developed dyskinesia?And how do you dose it?
  19. longvida curcumin & nilotinib

    Dear Pharmacist, thanks for your detailed explanations.
  20. How did you talk to others?

    Hi, EAN how do you tell your patients if they suspect that something is not right with you?Like if you have tremor.I am in a situation now,that I am trying to go back to work,but would want to keep the HIPPA rules.I also work in a medical setting.I feel,I might be discriminated against if I tell my coworkers or the patients.My boss and HR already knows,due to my applying for temporary disability,which is fast running out.It is good to read your post and learn from your experience as a physician with PD.I supposed you are still working.This is highly inspiring.I was diagnosed last year as well.
  21. Neck & Shoulder Issues

    I have experienced these neck and shoulder issues,I think it is parkinson related,especially when the medications are wearing off,the pain is intense.I think it is due to dystonia of the neck and shoulder muscles.The pain is relieved with stretching and active exercises.
  22. longvida curcumin & nilotinib

    Dear Pharmacist and MarkB, Your discussion on Nilotinib arouse my interest.As this medication being approved for treating PD by FDA?I no there was a trial study on small group of pwp,which yielded a positive result.But currently there is a recruitment ongoing for a larger study.Does curcumin have the same beneficial effect like Nolitinib? MarcB, are you participating in the Nolitinib study? How long have you been taking this medication?Has is helped to slow down your PD? Dear Pharmacist, will any MD prescribe Nolitinib for me,despite not being approved by FDA for treating PD. Thanks for your anticipated response.

    Stem cell treatment for the knee maybe an easy fix,just to regenerate a worn cartilage.But the brain is a complex organ,and this is why it hasn't being easy for the experts to have a perfect breakthrough with stem cells treatment in PD.It might take a long time for them to figure this out eventually.
  24. Panic Attacks or Something Else?

    Hi,Patrick, doctor Okun is right,I have experienced similar symptoms with or without sinemet.I was told by my MD exactly what doctor Okun said.It helped to some extent,but wearing off of medications bring out all the symptoms you mentioned,anxiety,panic attacks,SOB,e.t.c.I just learned to live with these symptoms/side effects.
  25. Hi, anyone/everyone who has a physically demanding job with PD,please give your insights as regards how you are managIng to cope.on the job.My temporary disability insurance is running out,and I have not been assured of any type of accommodation on my job,when I informed my manager about my PD status.In fact,my boss doubted how I will be able to cope,while dealing with PD symptoms.I have not been fired either.I have always been a conscientious worker before my diagnosis.My other thought is switching to a less demanding job,but,that will mean a reduction in my income.Might consider switching career,but that would mean going back to school.And future cognitive decline is unpredictable.Please share your experiences,if any.How easy is it,applying for a new job/career,when you have PD?Do you have to inform your new employer about your PD status? I will appreciate your contributions.To some extent my symptoms are controlled by medication and exercise and don't want to retire early yet.