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  1. Today
  2. Hello Linda and all other people who may happen to look here. I sorta had a busy week so I never got posting anything. One may think that I must of accomplished many great things but I didn't. Merely carried on. Hope you all had a good week. jb
  3. Tom, im so thankful my vivid dreams and sleep problems are intermittent and are controlled with L-dopa and exercise. I totally understand what you’re going through. One of the best parts of life is waking up and holding Mrs Supes. I’d feel pretty upset if I had to sleep in a room with no furniture by myself. John, I’m glad that exercise, meds and maintaining a positive attitude seems to be working for you. If thinking works to control your attitude about living with PD, then more power to you. Enjoy your picnic today. Thanks.
  4. PD now rarely ever gets me down.All I have to do is remember others many with PD who have it much worse off. Most of them suffer not from PD but from poor care. Mornings I often get up holding both railings to go and let my dog out.By the time Im heading upstairs I'm much better and often can make it without the rails.Then my morning small dose and Im off to whatever leaving PD behind.I only take 2 small doses now after 10 years of PD. Dr.low said often moods are thoughts.Controlling our thinking (attitude)is a key ingredient living well with PD Now off to a picnic.have a nice day john
  5. Superdecooper It is odd how when we actually get moving enough to awaken how we remember what we were dreaming. I have never been to Europe but always wanted to go there. Well I was in Germany waiting for a train sitting on a bench. Then 4 men came up to me criminal type. My Dad raised me to be street smart. With that when being out numbered you strike out first. A blue eyed blond man was attempting to situate himself behind me. So with my left foot I went for a body shot. The noise hitting the door got my wife up to check. It is very hard to tell reality from dream. Many times you are out of breath and your heart is pounding. So needless to say you know what I am explaining. Our family members hear us scream in fear, curse like a drunken sailor, laugh out loud, and fall out of bed jumping off a clift to escape a conflick. Those that don't have Rem Sleep Disorder are lucky. We do get injured. We wake up with bruises, sore shoulders or scrapes. I hate the meds we take to try to prevent the injury. It doesn't always work. And every morning it takes awhile to come out of the foggy feeling. There is no one size fits all with Parkinson's. Ya just have to deal with it. And what ever comes. Like I said there are those with worse. So we must be thankful. Heck i'm 64. I feel really sad to see children with difficulty. So what I have is nothing. Tom
  6. Superdecooper,

    I await the day when everyone with Parkinson’s Disease goes outside and at 6:00pm we all howl at the top of our voices.  The combined vibrational energy breaks up the Parkinson’s.  It is like a sheet of ice breaking free from a glacier, sliding down its side into the sea.  A second howl erupts.  This one is a cheer of joy as the Parkinson’s Disease breaks into a billion pieces, never again to afflict anyone. 


  7. I don't see an attachment icon, so here it  is:



    Lean on me when you're not strong and I'll be your friend, 

     I’ll help you carry on 

                                                                                     Lyrics by Bill Withers 


    1. Listen/talk hold a hand, give your heart.  If someone is down or upset, express concern or if happy, rejoice with them. 

    1. Meet, greet and eat.  Welcome a new person, introduce yourself, offer to escort them to the dining room for lunch or dinner.  give tips that are helpful.  Point out things of interest. 

    1. Line Dancing:  Lesson are on YOU TUBE.  Make friends, exercise and have fun, all at the same time. 

    1. Watch TV together.  There is a lot of alone time, especially at night.  Pick a night, a recurring program and make some popcorn. 2 or more people. 

    1. For the night owls: Scheduled or Last-Minute games.  Cards, Dominoes, Yahtzee, Wii bowling or golf or just chit-chat.  Just don’t sit alone, get together and have fun.  9pm to 10pm 

    1. Help find lost remote control or eye glasses.  No crawling on the floor.  Use a “grab it” stick. 

    1. Remind a friend.  Call or knock on a door to remind someone of a planned activity.  

    1. Canasta or bridge club.  Schedule at a time that allows club to eat lunch together, before or after game. 

    1. Welcome Back Visit.  When someone returns home from the hospital or rehab, let them know they were missed and thought about and people are glad they are back. 

    1. Devotional Read scripture, pray, discuss or whatever suits your belief system. (may need more than one group) 




    Create and/or solidify friendships 

    Gives a sense of purpose, thereby decreasing depression 

    Scheduled activities and self-motivated tasks relieve boredom 


  8. How do I attach a word document to a post?
  9. Edie, There is no documented interaction between Skullcap and Carbidopa/Levodopa, but since Skullcap is over-the-counter many of the interactions may not be recognized. Just to make sure there is no interaction I recommend that you take the Skullcap one hour before or one hour after prescription medication. Either way, one will be absorbed before the other gets into the system. I hope this helps and please keep me posted.
  10. Otolorin, That is up to the Doctor to decide. In my experience though, I have seen patients go back on the CR at a dose they were on prior to Rytary without having any dyskensia. I hope this helps and please keep me posted.
  11. Yesterday
  12. Tom, poor closet door. What did it ever do to deserve being kicked by you? Last night I dreamed I was part of a coven trying to stop some warlock from casting some sorta spell. It went terribly wrong and I ended up in a Runaway driverless car. Dream ended just before the crash. I just got up outta bed and went and used the bathroom and didn’t look back! No kicking though and I didn’t wake up Mr’s Supes, so I figure I came out okay Ughhh I successfully forgot last weeks dream already -S
  13. I am happy to share the list with you.  I will type it tonight and send it to you.  Is this a PD support group or something else?

  14. Superdecooper we have moved me to a room with no furniture other than a recliner I sleep in. The Rem continues even the klonipin (misspelled) doesn't stop it. Well the recliner was to close to the closet. I dreamed of being attacked and kicked the attacker. Knocked the sliding closet door off the rollers. Oh well .😃
  15. Yes,thanks. Part of this disease fight is remaining strong for other people... if loved ones see you panicking, it just makes it worse for them -- and then you..
  16. @So Curious Would you be willing to share your list? We have just started a support group at a care center in our town and such a list could be very helpful. And good luck with getting your group started.
  17. Thanks for your words of wisdom, Kevin. Dianne
  18. Venting is good. It relieves some of the pressure rather than letting it build up to explosive levels. And while it's good to look at our problems with some perspective and be thankful that it isn't worse, it's also okay to acknowledge your problems and the unique way in which they affect you. I, personally, have found that even a mild pain that goes on consistently for weeks on end begins to feel more like severe pain. So never let your perceived size of a problem prevent you from sharing it with us. I say this for all those who are reading this as much as I am for you. Kevin
  19. I just get so tired of being in pain, the bad dreams and insomnia, the unwanted movements in my hand and foot, the body stiffness and slow memory recall. The PD meds and muscle relaxer and gabepentin make the pain bearable, but it still sits there in the background, waiting to pounce. For the longest time I took opioid pain meds, and now PD meds are keeping things in check - most of the time. I get upset when I'm just going about my day doing whatever and then I notice that my big toe has been moving for about 15 or 20 seconds and I didn't realize it had even started. Or I'm typing and my finger keeps on trying to tap the mouse button. Just ignore that, nobody noticed...keep it moving nothing to see here. And now I'm having slight balance problem of not being able to stop and change directions smoothly - like out of control inertia. I wonder If I paid more attention to my body movements, would I be able to move better...(I'm sorry but I've never had to pay attention before, in fact I excelled at instinctively knowing how my body was doing.). I exercise and get massages and try to eat right and take medicine and for the most part I can tolerate it all, but . .. . sometimes I just don't want to be bothered with PD and I just wanna it to disappear. I'm venting, I realize that my problems are smaller than what others are facing, but I just want them to stop.
  20. The extract you're seeing is from industrial hemp plants, those legally grown for things like rope and paper and have been bred to contain very little THC (so little no one would waste time smoking it.) Since CBD outside of cannabis isn't illegal in the US, and extractions of it aren't illegal if it's produced from legal sources, it's currently in a mostly legal grey area.
  21. When you received your 1st disability check, you should also have received a lump sum check for the time between being declared disabled and benefit start date.  Probably that 6month waiting period.

    1. RNwithPD


      I went back to work a few months after filing for disability, and then left work a week before my disability hearing. So my listed date of disability was just a few days before I was approved. Consequently, I didn't get any back pay.

    2. So Curious

      So Curious

      That a tough break.  Maybe you will win the lottery.  That would make up for it!

  22. Thank you!  I admire your positive attitude.

    I wonder if you are familiar with my Paris - based cousin, Skip Sempe' and his classical orchestra, "Capriccio Stravagante"?

  23. Afroney,

    I am not diagnosing your condition.  I am not recommending treatment.  I am not prescribing medication.

    I am voicing some thoughts.

    Do you realize that your symptoms are side effects of Fentanyl/opiate use?  Add Benzodiazepines into the mix and you have a deadly combination.  I urge you to discuss this possibility with your physicians ASAP, while you are in the hospital.  You may have been unintentionally prescribed too high of a dose of pain medication, especially considering a 40# weight loss. I pray this is not the case.

    Please look up "Breaking The Pain Spasm Cycle" and consider replacing pain med with Turmeric, 2000 mg AM and PM. with your Dr's consent.

    I will pray that God sends a special angel to watch over you.

    1. afroney


      XThank you for your kind words. 

      The hospital uses the tranquilizers and pain meds to stabilize my condition. My blood pressure and pulse were at crisis levels.  The ER doc explained to me that if they don't get the pain under control, it is likely I'll suffer a stroke or heart attack.  

      I was released this morning and will be resting for a few days.  The pain is OK now, so I don't need my pain pills for now.  I believe what I experienced was a violent Dystonia spasm. 

      Unfortunately, I've had to take the Clonazeapam for REM disorder.  Without it, I break bones, furniture, and windows thrashing in my sleep.  Tried melatonin first, but to no effect.  

      I will mention your suggestion to my doc Monday. He is very open to alternative medicine and got me into CBD oil to try. 

    2. So Curious

      So Curious

      For dystonia, I get relief from Zanaflex, generic is Tizanidine) 4mg every 6 hours.  I also rub in DE-STRESS Muscle Gel by Aromatherapy Associates.  This combination really keeps Dystonia in check.

  24. That's exactly the way to go. We need to focus on something else and lay aside our PD problems for a while. Good luck with your "Lean on me Club". Regards, Mireille
  25. They had suspected something similar with me. All tests ruled out auto-immune causes. I'm in the hospital now and they are doing a bunch of tests. Went in with horrible chest pain. Not sure what's going on, but the frequent Fentynal injections have provided a wonderful break from the pain. I'm going to catch up on some sleep.
  26. Hi jm, Just checking on how you are doing. I hope that the depression has lifted some by now. I have a few suggestions for you to try. They help me tremendously. #1 make yourself smile, even if you sit in a room alone, just smile. #2 Get an index card and write on it what you want to accomplish. Example: I am always happy and in a good mood. I bring joy to other people and people like me. Good things always happen to me. God loves me and I glorify God. (if that's appropriate to your religious beliefs) I think you get the idea of what to write on the index card. Carry this index card in your pocket and whenever you have a chance, read it, say It, expect it to be true. #3 Everyday look up on the internet a joke that makes you laugh and send this “joke of the day” to someone. (I send 2 jokes 3 X a week to a fireman & it brightens his stressful day). Do these three things every day. They should help lift that depression. After a month, send me a post and let me know if any of this has helped you. I am just curious. No, I'm So Curious hee hee! Wishing you lots of luck, joy and happiness and no more depression.
  27. And the sad part is Parkinson's only lowers life expectancy by one year.(according to what I was told)  My PCP said I am going to live a long time.  Oh joy!  Something to look forward to.
    I posted this response earlier by hitting reply.  It went to the Forum Administrator, so it may pop up again.
    1. Superdecooper


      I've never heard the 1 year figure. but I hope its not true. i need all the time i can get...

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