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Everything posted by otolorin

  1. Good morning!!

    Best of luck for Debbie.I''ll remember her in my prayer.
  2. Welcome to the club

    Hi Superdecooper, it is funny you call it sleep jealousy.It's like we are now in a kind of sleep competition with our dw.I see it differently,because of our situation.I doubt if any pwp ever gets 8hrs of sleep without sleep aids.If you get 6hrs of sleep with Azilect,that is a big deal.I know that if you stop any PD meds the symptoms will reappear,and unfortunately we are in this for a long run,unless there is a breakthrough for a cure one day.I understand the "why me"question still lingers in the minds of most parkies,because acceptance is a difficult struggle,especially as a young pwp.I guess the earlier one accepts this new journey,the better.It is tough on everyone including the families.Hope is on the horizon,they say.May the major breakthrough happen in our lifetime.Stay positive!
  3. Welcome to the club

    Hi cldm, my symptoms are similar to yours and I am on sinimet as a monotherapy.I was good with Azilect only for two months and have tried some agonist,but couldn't cope with side effects.It is good you are still working,considering how hard it is to joggle work with drugs side effect.My most troublesome symptoms are the wearing off symptoms like,stiffness,numbness and tingling of the mostly affected Lt arm and balance problems.I would say my off symptoms before I started the medications were tolerable than now that I am on meds.Dealing with symptoms fluctuations as regards your dopamine needs could be a big deal as you stated.According to Dr Okun and my MDS,good timing and close spacing of medication are the best way to manage symptoms fluctuations with C/L.Do you have issues with sleeping?If so,how are yu coping?

    Dear Pharmacist, we all appreciate you here.Good luck with your foot surgery.
  5. Please read the link that follows: http://www.bbc.com/news/science-environment-43388870 I was wondering if the chemical in plastic-VINYL CHLORIDE might have contributed to triggering PD in people that drink a lot of bottled water.Since it is an idiopathic disease.An accumulation of microplastics in the body may be hazardous to the central nervous system.
  6. Dear Doc Okun, I very much appreciate your soothing advice,anytime you answer my questions concerning PD and medications.I am currently on 1/2 tab 25/100mg sinemet x 3/day every four hours, for rughly a year.I am not tremor dominant,no resting tremor,but postural and it increases with physical or emotional stress.I also have balance issues.The balance issues has become much more pronouced since I started medication.I have tried Azilect,which worked for a short period and miraplex which I couldn't tolerate.Before I started sinemet,Iwas somewhat reluctant,due to the fear of dykinesia.And I have read on the members forum and online that postural sway is a precusor of dyskinesia.I usually have the balance issues when the sinemet wears off and it continues before the next dose.Also when I am off,I have some anxiety,numbness on my left mostly affect side and tendency for my Lt arm to tremor at rest,but it doesn;t actually tremor.Also I feel the tendency for my neck to rotate on a saggital plane.My questions are: 1)Have I already developed a mild form of dyskinesia,considering my wearing off symptoms. 2)Is it the progression of the PD that manifest as pronounced balance problems(postural sway),or am I having a symptom that is a precursor to dyskinesia? Please help,because I won;t be seeing my MDS until 3months time and I want to know if an adjustment in my medication or dosing will help.I really don;t want to develop dyskinesia. Thank you sir and God bless.
  7. Are these laws being enforced effectively?If they are,there would be decrease in the numbers of people being diagnosed with idiopathic diseases every year.Only God can save us.
  8. You are welcome Beau's Mom, we are what we put in our mouth,they say,but I am surprise that it took this long before they carry out tests on the safety of drinking bottled water.What is the FDA doing?We are so exposed to all kinds of health hazards.
  9. Akathesia, is this present in your off?

    Thanks again Sherrie,it is more obvious during my "on"when standing.And during my "off" after fast walking or jogging exercise.
  10. Akathesia, is this present in your off?

    Thanks Sherrie,if the swaying is a precursor to dyskinesia,I bet this is most dreaded side effect of C/L and would also bring it up during my next MDS visit.To anyone who is treating dyskinesia,or has prevented it,what is the solution?Please provide your insight.
  11. Johnny, commanding your muscles to move one step at a time,is a good fighting spirit.I think all PWP at early stages has to continue to fight this disease and don;t give up.Keep fighting!
  12. Hi everyone, With the current winter conditions and heavy snow storm,has any pwp ever being caught in a snow storm driving?If so would you share your experience please?I have had no problem driving in the snow before PD dx.But after,I have to rethink this.Your input will be appreciated.
  13. Akathesia, is this present in your off?

    Is the swaying at stance called Akathesia?If so I think I do experience this a lot after fast walking exercise or jogging and stopping.I have always been thinking that sinemet was worsening my balance problems.I have posted this on ask the Doctor's forum to see if Dr Okun has an insight as to the solution to this problem.I hope someone can help.

    Thanks Kaypeech, I already use an elliptical for exercises.I was wondering if anybody using C/L do experience worse balance problems now, compared to before starting to use the edication.
  15. Hi members, I need your support on this particular topic,if you have been on Levodopa for up to a year or more.Did you have balance problems as one of your symptoms before you started medication,especially Levodopa?If so,do you think,it made your balance worse?I have read various studies and article online that says,it does not improve balance,So from your experience with this drug,could you share?Also how do you manage this problem?I do daily aerobic and anaerobic exercises.But aerobic exercises like running and fast walking increases the tendency to fall,after stopping the exercises,I mean when stationary.So please help with your opinions.Below is a link related to this problem. https://www.apdm.com/levodopa-is-a-double-edged-sword-for-balance-and-gait-in-people-with-parkinsons-disease/ Thank you for your kind response.
  16. Tremor when nervous?

    It is better not to think about it,because that is when it really gives you more anxiety.So try to be as calm as possible and avoid stressful situations.
  17. Questions for next Neuro visit

    Some of your symptoms relates to PD,better still ask the doctor.Take care.
  18. Doctor says symptoms 'consistent with' PD

    Hi, you are welcome.Keep exercising according to LAD, You are not defined by PD.Hope for a cure,they say is on the horizon. LOl.
  19. Mono Medication

    Hi Mr Bode, happy New Year. I see you've got the mucuna seeds.How will you be able to process the seeds to get the right concentration of Levodopa and the right dosage for use?
  20. Dear Doc, Kindly provide your insight to this problem of postural instability,which as been bothersome lately.I am currently only on sinemet 25/100mg,half tablet, x 3/day.I have had short success with Azilect,Ropinirole was intolerable,and sinemet has been good for 7 months,with a schedule of one tablet,every 5hrs,until last December,when my MDS suggested that I should change my dose/schedule to half tab every 4hrs and then increase dose,with decreased interval,if there is no positive response.But so far,I have been having unexpected off periods,despite following the new schedule.And during this off periods,I seem to experience more balance problems,especially festination.The postural instability tend to also increase,after a jogging exercise,while standing at rest,or after fast walking for like half a mile.I also noticed that before I started medication,the postural instability was mild and occasional,but now it is becoming more frequent.I am roughly 2yrs post PD diagnosis,with no resting tremor,but occasional ambulatory tremor in the LT side.I also have all other typical non motor and motor syptoms.I currently do daily exercises.So my questions are; !)Could it be that the medication induced dystonia is the cause of worsening of postural inbalance,or disease progression? 2)Could the medication timing management help with improving the balance problem,or adding another medication" 3)Can I infer anything in the folloiwing study to justify my suspicion?Please see this link below. https://academic.oup.com/brain/article/125/9/2100/268484 Thank you for your time .May God almighty reward your efforts sir.

    Thanks Hiker, can you share your experience if any, concerning,the effect of Sinemet on balance?
  22. FDA Approves Osmolex ER

    Dear Pharmacist, I want to thank you again for your usual support on this forum,but why can't the big pharmas manufacture PD drugs with less scary side effects.It is high time researchers come up with drugs that has minimal side effects.If only this could be attained,life would be much easier for pwp.
  23. dyskinesia free l-dopa

    Hi Hercules, would you say it is the Dr Hinz therapy that helps in preventing dyskinesia or the Mucuna puriens,which you are taking?
  24. Parkinson's Disease & Dementia

    @marral77, please stay strong.May the Lord be with you.Accept my heartfelt condolence for the loss of your dh.Hello Texas Tom,I don't understand why some spouses behave the way you described in your posting.I thought it is for better for worse,according to the wedding vows taken,when you got married.I have read on several PD forums how married people got divorced when there is a debilitating illness affecting one party.Some spouses react due to fear of what the future holds.I am really proud that you still work,thanks to your thoughful employer.@Linda ,you suggested counseling,what if dw refuse to go for counseling.What do you do in a situation like that?Probably rely on other family members who are willing to give support and dear friends on this forum.I wish and I pray that,all PWPD on this forum,who are still active,continue to be active till we appear in paradise.And those who are not ,get some relief.Overall,I pray,that cure be discovered in our lifetime.Amen.