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  2. Parkinson's Disease & Dementia

    I'm very sorry for your loss.
  3. Parkinson's Disease & Dementia

    She has had over 10 + UTI tests in the past year. All of which show no UTI. I don;t think dementia happens over night either.
  4. Hi all, I guess I am just frustrated. My sister and I have been dealing with my mother's decline for the past 10 months and it has been intense. It's as though she can never catch a break and there's always a new curve ball being thrown our way. We are in a constant cycle of dealing with inaccuracies from the pharmacy, fighting with insurance to continue PT/OT, to then have changes in her meds cause bizarre side effects. I feel like we are always trying to make the decision whether or not to go to the ER. Every time we end up in the hospital we come back with less answers and more test results that have no conclusion. Each time she is there it only just make my mom feel disoriented and sad. I can't believe this is her new normal. Any advice would be appreciated here.
  5. I am wondering if anyone has input on this issue. My wife has not been diagnosed (not for lack of trying) but has symptoms similar to Parkinson's and also some possible dementia. She will turn 65 in a couple of months and we have a one-time open enrollment and can choose any insurance plan to go with her medicare without questions. The way I see it, we could choose a comprehensive supplement such as plan F or a Medicare Advantage plan. She can have a MA plan from her former employer that looks pretty good. It is a plan I know because I am already on it. The MA network is not restrictive at all and out of pocket is $3500, about as low as I have seen. My only concern is over tests or procedures that might be required that they might not approve, whereas the plan F would approve anything allowed by Medicare. I think these would have to be pretty special procedures, beyond normal imaging and other things that have become routine. So what say you? Are there any procedures that may be common in PD or dementia that would possibly raise a flag with an insurance company? Any experiences good or bad with either type of plan?
  6. Does this seem normal? Sleep attacks?

    Thanks so much for the list! That was super helpfu! Wish her doctors provided something like that at the start of it all! We are trying to reduce her off of Mirapex. It's not going so well. We have been trying to figure out why her neuro gave Mirapex to begin with too.
  7. Hello, I posted a while ago about sleep attacks for my mom. In that time they have reduced her Mirapex. She was taking .25mg at 6am, 12pm, and 6pm along with Sinemet. While at the hospital they dropped her morning dose. In the past week we tried to drop her 6pm dose as advised by her neuro. Maybe this was too close together in a reduction? In the past week she has had 3-4 "episodes" that involve crying, disassociation, depression, and suicidal ideation that last for 3 hours. When it is over it's like she can't recall what happened and is back to her self. It's awful to watch. Yesterday she had 3 episodes. We are hoping to hear back from her neuro today. We are unsure if we should add back in a dosage to see if she stabilizes and then try to reduce her more slowly. Does this sound like DAWS? If so, is there treatment for it or does it sound like she should go back up on her Mirapex dose? I also posted in "ask the doctor" Thanks,
  8. Today
  9. Bright side I guess

    Good one Stump. That's the first time I've ever seen one of these bright side of PD posts that really is a bright side!!! Not being able to smell vomit - the bright side of PD. LOL!
  10. Trying Sinemet

    To begin with, you should have started out on half a pill 3x per day. Then over the course of 3-4 weeks worked up to a higher dose every 4-5 days or so until you got relief or reached some predetermined max (likely something around 12 pills total per day). With good communication with your doc in case there were bad side effects. It's quite possible you just never got to a sufficient dose, for you, to be therapeutic. Though, as mentioned, it's also possible you are one of the unlucky group that doesn't ever respond to Sinemet. If I were you I'd look at giving it another go, but with a slower, and longer ramp up. For some people it can take up to 2 weeks just to see any effect anyway.
  11. Trying Sinemet

    I started out with 25/100 3x per day. One week later my Dr. doubled the dosage to 2 pills 3x per day. Seemed to me the tremors worsened. For sure didn't help. I only stayed on sinemet for a total of 2 weeks. Dr. now put me on Amantadene. No help here either.
  12. Bright side I guess

    I'm letting DW sleep. It's almost 3AM. Just finished cleaning up after my almost 5 year old daughter threw up for the 5th time tonight since going to bed. I guess that's one bright side to PD effects like insomnia and a poor sense of smell. Poor kid. Just hope she feels better tomorrow.
  13. Trying Sinemet

    Can't speak for PatriotM, but in my case (I'm also tremor dominant) the effect was nearly instantaneous. However, I've read that there is some percentage (I want to say around 20%, but that might be way off) of tremor dominant PD patients that never respond to Sinemet. That said, some folks only see relief after titrating to a fairly high dose. What doses have you tried, and how long did you take to work up to them?
  14. Neil Diamond joins our little party

    ^^^ Yeah, that.
  15. care article

    https://www.everydayhealth.com/parkinsons-disease/ten-things-your-doctor-wont-tell-you-about-parkinsons-disease/
  16. Yesterday
  17. Parkinson's Disease & Dementia

    Hi Tom My wife is ambivalent of my PD.Another case of outer environment we cant control.People don't know the reason who other people lack empathy or any other positive emotion is they don't take the time to practice it.I myself never experienced it much till I made a habit of visiting others at our VA hosptial.
  18. Good morning!!

    Is it already time to hang the sap buckets? Spring can't be far away! Dianne
  19. Good morning!!

    JB...you are right about having a strong family structure... "Family is not an important thing. It's everything." Michael J. Fox LAD
  20. estudios clinicos

    Que estudios estan activos para preservar las neuronas y atrasar el progreso de pd ?
  21. Good morning!!

    Last nite at 12 30 I got into my bed. I squirmed around a bit to get comfy, turned off my bedside light and fell asleep easily annd I stayed like that until 6 am. Went to the bathroom, came back to bed and slept till about 8. |That was the best sleep I have had in a longgg time. Last evening I rode with my sister and bro in law that live just up the road from me. We went to my sisters house in Kingston because it was her birthday. Her daughters were throwing the party and had other friends of her mom there. My sister and her husband from Kingston are really good at staying in touch with friends from University and old neighbours. Eventually over the years, birthdays, weddings and new babies, they sorta become everyones friends. I am lucky to be in a strong family structure. And today I will hang some sap buckets. Gotta run, jb
  22. This & that!

    That is a good one LADy. Back about 8 years ago we used to brainstorm parkinson slogans to put onto t shirts. Fun it was! that was about ten years ago.
  23. Trying Sinemet

    PatriotM, you say sinemet does a surprisingly good job on your tremors. How long did you have to take sinemet before you first saw results? I'm tremor dominant, and so far nothing is working.
  24. This & that!

    You have to let bridges that lead to nowhere burn. Life is too precious to spend it traveling aimlessly.
  25. Last week
  26. Trying Sinemet

    C/L reduces my tremor, relaxes my muscles, eliminates my anxiety, keeps me from chocking on my saliva when I nap. Pretty much makes me feel better.
  27. Parkinson's Disease & Dementia

    This is good advice, but I am a little wary of the herbs. what does your doctor think of the herbs? thx!
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