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  2. MComes RPH

    Sinemet

    Divi, I do agree with your Doctor on the dosing of your Sinemet. from previous conversations it sounds like you have a good handle on when your off times are. It sounds like you may not be receiving enough Sinemet to have greater control over the off periods. I have a couple of suggestions One suggestion may be to add a Sinemet CR in the early to later morning. Many people will start the day with regular Sinemet to get a jump start on covering the symptoms because the regular Sinemet can have a faster release than the CR. If Sinemet Cr is added, I would advise taking the Sinemet CR about 60-90 minutes after taking the regular Sinemet. If the regular Sinemet morning dose lasts longer than 2 hours, I would recommend taking the Sinemet Cr about 90-120 minutes after the regular Sinemet. Sinemet CR can be taken 3 times a day so you will have a little wiggle room in dosing. My second suggestion would be to increase the daily dosages of regular Sinemet. An increase of as low as 1/2 tablet can have a great impact on symptoms. As always, the dose should be started low and slowly increased to avoid any side effects. The dosage should optimally be taken about 30-45 minutes prior to off symptoms coming on. I know this may differ throughout the day, but keeping a journal may help narrow down the time range. I hope this helps and please keep me posted.
  3. MComes RPH

    Sinemet

    Super, I 100% agree with your MDS and that is how i recommend dosing be handled. We first like to start with a standard dosing schedule, like 3 times a day, and then work towards symptom relief. Your 3 times a day may be different than someone else's, but this is a starting point that we can use as a baseline for further fine tuning of your overall dosing regime I hope this helps and please keep me posted.
  4. Today
  5. Dr. Okun

    Reaction to Protein

    This is an effect that can occur in Parkinson....many experts believe it is the protein disrupting absorption of the meds but there may be more to it than that... We recommend giving your meds a 1/2 to 1 hour head start before eating (especially protein).
  6. Dr. Okun

    Ropinirole vs c-i levedopa

    Tough question. If there is room to maximize one drug without causing a side effect (e.g. impulse control disorder) then that route is appealing....
  7. Dr. Okun

    Neuroscience 2018 San Diego

    My pleasure.
  8. Dr. Okun

    Neupro patch on time

    Yes, you have to be careful. Also, in our practice we use plain sinemet and not agonists (in general) in the setting of dementia.
  9. Dr. Okun

    Steerable DBS

    There are no objective measures at this time however whether the lead is steerable or not is less important than if it is in general well placed. We use imaging (MRI-CT) plus thresholds at each contact to determine the location. Ask your doc about this approach.
  10. miracleseeker

    Loss of confidence

    Thanks Coach. I do treat this forum like my journal so I can always refer back to what I was feeling at a certain time of my life. It's also good to see what meds my mom was on and what happened then. Most of all it's good to know there are people who can relate and know what I'm talking about. I hope more people will contribute and share.
  11. coacht

    Loss of confidence

    MiracleSeeker, I think most of those days. Many days I have not wanted to go home and deal with my DW's attitude. I have been dealing with another situation and this week she has been kind and considerate. What a relief. I know she can be this way now, but how long will it last? Do what you can, don't worry about the others, they will get their reward in different ways for what they have and haven't done. Keep posting as that is a good way to let off steam. Coachj T
  12. miracleseeker

    Loss of confidence

    Thanks for your kind words. I do have breaks which is when I have the time to think too much and feel sorry for myself. My mom's oldest brother passed away in Sept and then 3 weeks later her youngest brother's wife passed away. My mom is still hanging on despite being hospitalized twice since July. She is well as can be for someone in her condition but she has definitely declined since a few years back. I had a 3 hour lunch with a good friend recently. She is in her late 60's but still very active and healthy. She told me she does not want to burden her kids to take care of her when the time comes. I told her no one does but the kids should want to do it because it is the right thing to do. She resisted and said we have a difference of opinions on this. I think she feels this way because she did not take care of her own mother when she was ill and passed away so she won't expect that from her children. I know a lot of people are not close to their parents so to see what I go through for my mom is foreign to them. I do not regret the years I've spent caring for my mom while not having a life but I do have a lot of resentment for my siblings for not pitching in as much as they should. It's just much harder to face what's coming when I do not have the support I need. It shouldn't be this way. I'm tired of hiring strangers to help me take care of my mom and wondering when that person will quit and leave me stranded until the next one comes around. People that are just here for money and does not give a damn about my mom. The lack of TLC is very obvious. When will I have to quit my job at a moment's notice because no one wants this kind of responsibility for low pay? It's all on my shoulders and I hate it. Sorry to be such a stick in the mud but it's just one of those days.
  13. genden69

    Loss of confidence

    Miracleseeker, look back at the last year and see all the acts of kindness you have given to your mother. No one is ever sorry for being kind. You do what you do because you love your mother. I know it is hard. I have been there, but there will be no regrets. Please take some time for yourself if you can. A little break does wonders.
  14. LAD

    "Levodopa Phobia" Case Studies

    Meds are a personal decision. Educate yourself and do what works for you. Exercise is the best medicine without side effects! LAD
  15. Yesterday
  16. Gardener

    Loss of confidence

    Dear Miracleseeker, You have contributed so much to this forum and all of us have benefited from your kindness and experience. Believe me when I say that no parent wants their child to sacrifice their best years as their caregiver. Your mom is fortunate to have such a devoted daughter and as hard as it is to see her through this journey please know that some day you will be able to look back on all those years knowing that you did everything you could to make her life worthwhile. Your Mom, though she may not be able to say this, wants you to take care of yourself so please try to do this for her. Take care, Gardener
  17. https://wcyb.com/sports/nascar/still-sterling-tennessee-native-sterling-marlin-shows-no-signs-of-slowing-down
  18. Linda Garren

    Good morning!!

    Whew! 20 degrees F is COLD!! (But isn't it nice? No more of that overly hot weather that we had for so long.) Thanks job, Dianne and Scoop for the welcome back, and thanks Lori, for that perfect quote that your friend sent you. jb, I had to look up the "Golden Bear State." Had never heard CA called that before!
  19. Linda Garren

    Good morning!!

    Whew! 20 degrees F is COLD!! (But isn't it nice? No more of that overly hot weather that we had for so long.) Thanks job, Dianne and Scoop for the welcome back, and thanks Lori, for that perfect quote that your friend sent you.
  20. jb49

    Good morning!!

    Hi to all,, Glad that you are back keeping us posted Linda. We all missed you! Cold here today, well, colder than it should be. At about -6 C or 20 F it sends you scrambling for gloves, long underwear and the winter coats. Brr. Canada.. YOu all have a good day and say a word for the Golden Bear State. All the best to all of you. jb
  21. miracleseeker

    Loss of confidence

    It's now more than 2 years later from when I started this thread and things have gotten worse. As the year ends I reflect and say this has been a crappy year and I'm glad it's ending. Well.. I say that every year because I have very little to be thankful for. Why does life have to be so hard? People who have it all just keep thriving while the rest of us struggle. I can count at least 5 ex CG's from this forum that have lost their loved ones and it really saddens me. I re-read some of the previous posts as if it was just yesterday and can't believe how life has changed.
  22. miracleseeker

    "Levodopa Phobia" Case Studies

    My mom has a new doctor and he added Neupro in addition to Mirapex she already takes along with Stalevo. I asked him why not increase Stalevo instead and he shook his head and said c/l has a lot of side effects that he didn't want to get into if he increases it for my mom. I think it's just a matter of what's the lesser of 2 evils and I suppose he's basing this on feedback from his patients. Time will tell.
  23. imce

    Reaction to Protein

    Hi I am new to the forum, but hopefully my question is relevant. I have been diagnosed with Parkinson's disease (main symptoms are stiffness and rigidity) for over three years and have also been diagnosed with Central Pain. I have found over the last year, through trial and error that removing protein from my diet has greatly improved my symptoms. I seem to be becoming more sensitized to this and if I eat meat, my Parkinsons symptoms and central pain are much worse and the effect can last for a day. My medication (Madopar) is also ineffective for at least a couple of doses afterwards.. I also have the same problem with dairy, eggs and nuts. Pulses and beans have a small effect, but this is getting more noticeable. My question is if anyone has come across this before. I obviously need to eat protein to survive, but my doctors and Parkinson's nurse have never come across this before and are at a bit of a loss as to what to do with me. I am wondering if I am having an auto-immune reaction to protein and have been misdiagnosed for three years. I have read that gluten ataxia can cause symptoms similar to Parkinson's. I am at a loss for where to turn and any advice would be greatly appreciated. Many thanks Iain
  24. LAD

    Good morning!!

    A friend sent me this yesterday! LAD ps Superdcooper- did you see my DC was memorial picture ?
  25. swva

    "Levodopa Phobia" Case Studies

    I believe that Dr. Okun and others have said that dyskinesia is not caused by long term levodopa usage, but rather disease progression and the use of levodopa. People have wrongly assumed that levodopa only worked for a certain amount of time and they would avoid beginning levodopa in hopes that it would extend benefits and delay dyskinesia. Studies now have shown that people that begin levodopa therapy rather than agonists typically score better on the UPDRS over time than those that either delay treatment or use agonists. Also the time between diagnosis and dyskinesia is negligible between the different treatments.
  26. Last week
  27. Beau's Mom

    Good morning!!

    Linda, I'm glad you are back. Living alone with PD is difficult, lonely, and downright scary at times. Now that you're back online and healing from your medical emergency, we'll look forward to sharing the PD journey with you. Dianne
  28. Superdecooper

    Good morning!!

    Hey Linda, get well soon. -S
  29. Linda Garren

    Good morning!!

    Hi, sweet friend. Thanks so much for your concern and prayers. I've enjoyed hearing of all you are are doing, and I think it's wonderful!
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