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swva

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Everything posted by swva

  1. 23 and Me update

    https://www.wired.com/story/23andme-is-digging-through-your-data-for-a-parkinsons-cure/
  2. Insomnia

    I get the 3 am wake up most nights, but I can usually fall asleep again until I get up at 5:30. Some nights are tougher than others depending on the tremors. Some nights I have to lay on my affected side to reduce the tremors. CPAP. Has helped some. I normally get 7 hours of sleep now. I don't function well on less than that.
  3. Diagnosed 2.5 years ago at 45. My finger tremor had progressed to my entire hand in the two months before I was diagnosed. Never stopped taking Sinemet after my Sinemet trial for diagnosis. I have had to increase my meds to 6 - 25/100's per day. Never really tried to keep my diagnosis a secret or had any regrets starting meds. I really can't concentrate on my work when the tremors and stiffness kick in.
  4. STEMCELL TREATMENT

    Because none of the treatments have been proven to help PD. Any that claim to help are snake oil salesmen and are only out to get your money.
  5. I uploaded my results to https://promethease.com/ It had a lot more information than 23& me and from what I remember, it was fairly cheap and I got my reports within minutes.
  6. Hand tremor when nervous, anyone else?

    Nervous, cold, using other hand, working out. They all make my tremors worse. My tremors are mostly in my hand, but a couple of times when presenting to a board meeting, I could feel my backside shaking. Bet the audience behind me got quite a show!
  7. Morning Stiffness?

    For years I couldn't sleep late because my mid and low back would be too stiff to stay in bed. Haven't had as much problem since starting Sinemet, until the last couple of weeks. I slept wrong, woke up with a stiff neck and have been sore in my neck ad mid back ever since. It seems to take forever for things to get better on my PD side.
  8. tensing of muscles

    Arm, hip, and calf muscles for me. Usually when the meds wear off.
  9. https://www.nytimes.com/interactive/2017/06/06/well/patient-voices-parkinsons.html?_r=0
  10. Anyone else have this issue?

    I get an electric like feeling in my arm near my elbow some mornings. It doesn't cause my arm to move or anything, but it feels like current running through my muscles.
  11. Scared about meds

    I think taking drugs really depends on whether the symptoms are affecting your daily life. My tremor and "off" feeling we're bad enough to make me feel like I wouldn't be able to work very long after my diagnosis. I have had to double my Levodopa dosage to 600 mg recently to take care of my symptoms.
  12. Sinemet Duration

    Thanks so much. I will discuss increasing my dose at my next appointment.
  13. Sinemet Duration

    When adjusting a patients dosage, do you try to increase the dosage to completely eliminate tremor, or do you only increase it enough to make the tremor manageable? My first dose of the day is 1 25/100 Sinemet CR with a half 25/100 Sinemet, and the remaining 3 doses are 1 pill every four hours with the last dose at 5:30 pm. I have almost no tremor during the first dose, but my tremor increases for the rest of the day, but most times it is manageable. I sometimes take an extra half dose if it becomes bothersome at work. Would you suggest to try an increased dosage to 1.5 pills for each dose? I will need to discuss with my neurologist at my next appointment in order to adjust my prescription if I do try an increased dosage. Thank you for your help.
  14. Question about Loss of Smell

    Same here. I can smell some things and others that should have a strong smell I cannot.
  15. Scared, confused, in pain - young onset

    I think most doctors probably say essential tremor initially because it is more prevalent than PD, especially for young onset patients. I was pretty open with my family during the whole diagnosis period. I personally believe that knowledge is the best coping mechanism.
  16. Follow the DBS Road

    Scott and Murray, I hate that you guys both ended up with infections. It almost seemed that DBS was getting to be a routine surgery and then two people on this forum have major complications within a couple of months. Hope both of you recover quickly and the next DBS goes great.
  17. View New Content Not Working

    I cannot even find the view new contact button. I always use my phone to check activity on the forums and a couple of days ago it seems to have switched to a mobile version rather than the online version. Still trying to find out how to switch back.
  18. Isradipine trials and sinemet

    The ketogenic diet has also shown some benefit for PD. I try to stay in ketosis, but it is really difficult to stay away from chocolate and ice cream for a long time.
  19. Question About Bedtime Dosage

    I don't take any at night, but I would think that one 25/100 would be sufficient either at bedtime or when you wake at night. There have been a few times that I have taken a half a dose to fall back to sleep.
  20. Isradipine trials and sinemet

    I have been on Sinemet since my diagnosis about 2 years ago and switched to Isradipine for my BP soon after. I have increased my Sinemet to 4.5 25/100's per day to manage tremor and stiffness. I am not sure if the Isradipine is helping, but I plan on staying on it until the trials are complete. If it doesn't show any benefit in the trial, I will probably stop taking it due to it causing leg edema.
  21. I always try to take my meds at least 30 minutes prior to eating and at least a couple hours after eating, but to be honest, I really haven't noticed a big difference if I eat right before or after taking my C/L.
  22. I agree with Adam. Try to get the meds dialed in before you decide you can't work. I know that I was talking with a co-worker with PD at the time of my diagnosis, and I said I didn't think I could keep working if I progressed as fast as I did the two months prior to my diagnosis. He said not to write myself off too quickly, because he had been working for about 13 years since his diagnosis. After a couple of months on C/L, I began to feel better and even though I have had to increase my dosage a little, I feel almost as good as I did prior to my diagnosis.
  23. Sinemet CR

    I am sure that I have read that people take both, but one may affect the other, so you would need to monitor your response when adding the other.
  24. Sinemet CR

    Good info about CR dosage. https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=69e575b9-f8a5-494f-b736-2520ef505cb0
  25. Sinemet CR

    No idea why he chose ER. There are several posts about the difference in the Pharmacist forum.
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