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  1. Today
  2. Silent55: I have been told that if I don't take care of myself, I can't take care of someone else. It is hard to do. Don't feel guilty for taking care of your needs and your husband's needs. We have to prioritize because we aren't capable of doing everything. I am sorry you are feeling so exhausted. Do the best you can and don't beat yourself up over what you can't do. Sounds to me like you are doing everything you can for your mother. Miracleseeker: I am so sorry you are having health issues. Get the ultrasound. Don't cross any bridges before you need to. You may not need surgery, so no need to worry unnecessarily. I wish you the very best. Please take care of yourself.
  3. Yesterday
  4. My hubby takes Tradazone at a specific time, about fifteen minutes before bed. He had gone through so many sleep prescriptions, trying to find one that was a good fit it was so frustrating. Tradazone doesn't leave him groggy, and he has no other side effect from it. His FP writes the script for up to two tabs daily, he has never had to take but one tab. hopefully you will find a solution that works as well for you!
  5. Wow Miracleseeker! Thanks for verifying my theory! Hubby doesn't even know he does it either.
  6. Before going all in on meds, I'd highly recommend all the usual sleep improving things like no caffeine after noon, exercise regularly and intensely, eat a good balanced diet, stay off electronics (phone, tablet, computers) within an hour of bed time, and so on. If you're already doing those things look into melatonin. The few times I've used it the efficacy was good for helping with sleep. Benzos, Xanax and whatnot lose effectiveness over time. If you can manage without them that is probably best, but if you really do need them I'd not say anything against them. MMJ helps some, but I've not tried it. From my reading it will depend heavily in the strains you use as to whether it helps you sleep or revs you up. There are liquid extracts you can get if you don't want to smoke it.
  7. Hi Dianne and LAD..first of all yes Dianne to the deep belly breaths as same here with stress issues, dyskinesia etc...i am at present attending mindfulness,meditation classes which include deep breathing exercises which do help somewhat just a suggestion LAD as everybody is different may help .. em
  8. For ten years after my bad med reaction I slept no more than 3 hours a night. Medical marijuana would give me Another hour or two. But after about a year of starting tai chi again I started sleeping regularly and deeply for 6 to 7 hours of sleep - which was normal for me way back when....
  9. I know this subject has been discussed but wanted to get a fresh view on the subject with current situations. I'm having a difficult time sleeping. I know this is PD related because I've never had issues before. This has just started and been going on for about a week or so and feels like it will probably continue. Just not being able to get a deep sleep. Feels like I'm awake most of the night or wake up and just lay there with my eyes closed but not sleeping. Sometimes i just feel really restless. I know others have had difficulty for a very long time. I'm out of Xanax but would normally take .25 mg. I've tried Clonazepam and Lorazepam each only taking .25mg but they seem to make me jittery. I took the Lorazepam last evening and it did help some but still jittery at first. I'm really paranoid about taking too much meds. Actually I'm paranoid about taking anything but know i have to have something. I'm currently on 2 c/l - 25/100 3 times daily. I'm interested in knowing what others have used or how it's been dealt with. Thanks
  10. It's dyskinesia of the mouth for my mom. She grinds her remaining 4 teeth after her partials are removed.
  11. Silent55, I totally understand you post, sorry you are in this position. As miracleseeker says, keep posting. We are here to lift you up. We know the cost of PD to our loved ones only too well. Take care of your health especially. Hope to see you on here again!
  12. My hubby does those same snake like tongue movements. He curls his tongue, then it constantly moves in and out. Interesting enough he only does this in the evening before bed after he has removed his dental partials. It's as if the tongue is freed and the movement begins! His medication is spot on as he rarely has tremors now. Interesting!
  13. I forgot one little detail. NONE of these "cuts" are cuts at all. They are cuts in the anticipated increases in these programs. For example, Medicare will nearly double over the next ten years under Trump. Likewise, Medicaid spending will also dramatically increase under Trump. Only in Washington D.C. are dramatic increases in spending called a "cut".
  14. Here's my major quandary of the day (and other days, too): Unexpectedly, only 90 minutes after a dose of Rytary 145, I felt the telltale rumbling of an "off" period coming on. (Rumble typically starts in my feet, especially my right foot.) Had no choice but to do a fast grind of one-half Sinemet tablet, drop the particles into some apple sauce and wait for it to work. Which it did, thank God, within 30 minutes. But my question is, should I now DELAY my next scheduled Rytary 145, which would follow so closely the Sinemet fix. My great fear is over-medication, which fogs my head, slows my steps and leaves me feeling like a dish rag.
  15. SNAP (food stamps) is one of the most abused programs in this country. Many people receiving SNAP sell their card and then pickup their food at the food bank. Cutting 30% isn't nearly enough. Yes, it's acceptable to me. A huge percentage of people on Medicaid are just plain lazy. I see it every day. CUT IT! People like Trump that are in real estate often pay little or no income tax. However, they pay huge property taxes that hourly workers don't pay.
  16. When I was younger this never occurred to me that my mom would get old and sick and I would be taking care of her. I'm the youngest of 4 children so I always thought my older siblings would do most of the work. I feel like an only child but never had the expectations of doing the work as if I am. My sister said she felt guilty for neglecting her husband during a stressful time for him at work. I don't know what she isn't doing for him being that she is not here with us, does not have to work,and her kids are grown and out of her big house. I finally went to my doctor yesterday to get a refill of xanax for calming my nerves. She felt a growth in my abdomen and told me to get an ultrasound right away. Well if she feels it then it's probably there. Now what? Surgery?? Who will take care of my mom during recovery? I can't count on family to help me so the burden is on me. Yes being a caregiver is the ultimate sacrifice of our existence in this world. Was I born to have no life and do this job until I'm disabled and alone? I get so angry when new forum members who are recently diagnosed post that we don't know what we are talking about and we should basically shut up and go away. Who will spoon feed you and change your diaper when the time comes? Again this may not happen for most people for a very long time to come but when it does someone will have to do it. CG's do this and then who returns the favor to us? Silent55 - please keep posting. We feel your pain and we are here to listen. Vent vent vent. Take care.
  17. I feel each and everyone's pain as I am going through it with my mother for the last three years and it feels like forever and am desperate as am the only child and her primary caregiver. She developed symptoms around the time of my father passing away but were not conclusive until she had a fall. Fortunately she was diagnosed with early stage and is on 1/2 tablet Syndopa TD but has over the last year developed mood changes, paranoia and a form of dementia making it difficult to talk with her and she is very stubborn which is the total opposite of her before. Am married and my husband has been diagnosed with CLL which is at zero stage. He is retired now and both of us spending most of my time in Asia with my mother and have to fly back for about four months annually for my husbands tests to be done. This is tough as when am with her am already drained at the end of the day and am aware of neglecting my husband and myself in the process. So for over an year now have a nurse aide with her 24 hours daily to take care of her needs and exercises which she is very reluctant to follow. I find that I am neglecting myself though I now that I need to take care of myself and getting annoyed and feel drained by afternoon. Am worried that I may miss out on doing stuff for her and feel guilty that by going out of the country am neglecting her.
  18. Happy to help.
  19. Thanks you so much for your response. I need to be able to describe better the tightening or collapsing of lips that I am feeling and its timing vis a vis when I have been taking my meds. I will be back on this topic with more questions probably next week. Many thanks again!! Ntam
  20. Ndayitund, For me, the snakelike tongue movements were finally resolved by taking donepezil, a medication used for Alzheimer's. An MDS in Seattle diagnosed it as dyskinesia caused by the Sinemet. Dianne
  21. Maybe this is where I should have directed my post of a few days ago, hoping this topic is still of interest: Posted Monday at 11:54 AM · Report post Although recently (June 2015) diagnosed with "early parkinsonism", and after being introduced to Thinking Loud and Working Out Big therapies, my meds consist now of Sinemet (25-100 mg, 2/2/1.5 per day) and Azilect (1 mg per day, from June 2015 to December 2016) or Rasagiline (1 mg per day, January 2017-now), in addition to my on-going Lipitor/Atorvstatin (20 mg/day), Aspirin (325 mg/day), Plavix (75 mg/day) and Vitamin D3 (2,000 IU/day). My major symptoms: Moderately to Severely Affected Speech/Moderately Impaired Speech; Severely Affected Handwriting;Slow Walking, Requiring No Assistance, Experiencing Some Inreased Festination, Short Steps or Propulsion; etc. I am getting the hang of what's going on in my treatment, except for the lips tightening most of the time when I am not thinking about my mouth and on-going speech challenges. Is this a med side effect or PD symptom? Has this been discussed here on this forum? I have taken to chewing gum as way of controlling what's going on in my mouth. Any other suggestion and as a way of getting ready on how to express this challenge when I go to my doctor's appointment in July 2017? Quote Edit
  22. Thank you!
  23. Stress makes all my symptoms worse. I get more dyskinesia watching an intense movie. What works best for me is deep belly breaths. Abdominal Breathing Technique How it’s done: With one hand on the chest and the other on the belly, take a deep breath in through the nose, ensuring the diaphragm (not the chest) inflates with enough air to create a stretch in the lungs. The goal: Six to 10 deep, slow breaths per minute for 10 minutes each day to experience immediate reductions to heart rate and blood pressure, McConnell says. Keep at it for six to eight weeks, and those benefits might stick around even longer. Dianne
  24. Thank you! I will give that a try. I appreciate your response. Best, John
  25. As hard as I try....I cannot control my symptoms when I'm in an anxious situation. Why is that? Even after the issue is resolved I'm still in a total panic attack and tremors get worse. Not good for a mom of boys... One called home after an incident while driving... Everyone is fine and I'm still a mess. I hate it and it makes me so angry. Ugh! Sorry to vent but no one really gets it. I hope it's ok in this thread to just put it out there. LAD
  26. Hello John I had issues with nausea as well. For sensitive people like us I suspect part of the problem is the half life of carbidopa (average is around 2 hours but it is different for everyone). On a 3x daily schedule, by the time you get to your next dose, the carbidopa has washed out too much - especially taking 2 pills at once. The other problem is that the time it takes for the carbidopa concentration to peak in the bloodstream is longer than the time it takes levodopa to peak. What this means is that even though you have, on paper, a "good" amount of carbidopa in your "sinemet diet", it's not getting to you at the right time. I solved this problem by taking carbidopa alone in the morning 30 min - 1 hr before the first sinemet dose, and using a 4x daily schedule of 1.5 pills of sinemet 25/100 (I have entacapone as well but that's another story). For me this mostly gets the job done in terms of nausea but again everyone is different. If I run out of carbidopa I am nauseated all day, just from the nausea from the first dose that stays with me. You can ask your doc to prescribe a bunch of carbidopa and figure out the best schedule yourself. The other thing you can do in the short term is to try to ease into the morning dose by splitting it in to a few sub-doses separated by 30 minutes, but beware I have found that this can make my usually calm dyskinesia way worse. I have also tried a 6X daily schedule which was way better than 3X daily in terms of nausea. In terms of how long for the nausea to go away, although you should acclimate somewhat over a month or so, don't sit around and wait if you haven't tried adding carbidopa. Again the key is take the carbidopa before sinemet, not at the same time. Good luck Ed
  27. Last week
  28. The problem is all this righteous anger over freeloaders does not solve the problem of cutting 30% of all SNAP. Not looking and getting rid of fraudlent claims, just throwing 30% of all recipients off SNAP. Is that acceptable to you? Cutting Medicaid in order to give the top 1% a huge tax break runs into the problem of old folks, sick folks, and very young folks. Is that acceptable to you? And yes, foerthought is great. Mt DH paid for private disability insurance for 37 years. 37 years. Do you know what we got? the ability to pay the D*** insurance company back the 5 months of payments once SSDI came through. We were allowed to keep $330 dollars a month. Nifty huh? But thankfully the Hartford goes on making great dividends from collecting 37 years of monthly payments. I should have just started a Roth IRA 37 years ago. We would have been far ahead. As for the billionaires? Sorry, their actual tax rate in under 17% with all the pass throughs they get on investment income. That's why Trump paid himself $5,000 a year from all 220 of his companies. Hence no taxes except the one year that he took a regular salary, 2005, (coincidentaly the year he and his wife had to be above board to get her citizenship). Look, I am not denigrating Trump. He said himself not paying taxes means he's smart. I just am asking do you find cutting SNAP and throwing old folks out into the street from nursing homes acceptable. If not, what are your suggestions?
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