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  1. Past hour
  2. New guy here - a journey I'd like to avoid

    I get the shakes when I wake up in the middle of the night too.
  3. Today
  4. Just diagnosed at age 40

    For me the most painful issue is the dystonia. I have never been one to take pain meds, but the dystonia had me asking for something. I saw my MDS a few weeks later and she optimized, (upped) the C/L. And told me to optimize PD meds first then look for other causes. If you have just started the PD meds it can take a little time to get it all adjusted for your correct dose and even which meds work best for you. Welcome to the club though, and remember what works for others doesn't work for everyone. And nobody else has your PD, although we all share similarities. This is one of the best places on the internet for information and suggestions.
  5. Yesterday
  6. Just diagnosed at age 40

    Hi, Fellow members I am also newly diagnosed October 2017 my symptoms have been going on since 2011 I am 52. A few years ago I spent a lot of time and money trying to find out what was wrong with me; saw many doctors and specialist and took many different medications was labeled a hypochondriac, drug seeker and was still feeling bad. My family thought I was doing something to myself because I was walking like a zombie ( I was having a problem with the left side of my body and a lot of pain and stiffness) I was very depressed and discouraged I felt like I was going crazy. Finley I changed primary doctors and she sent me to a movement disorder specialist. Once I was diagnosed with PD and started reading about it; it all made since. I do not have a family history of PD and really didn't know that much about PD. I have been on carbidopa/levodopa since October when I fist started on it I would get sick every time I took it. I still have terrible pain-( like someone is standing on my shoulders) and 0 energy. They have given me a Rx for Vicoprofen and it helps a little. I am looking for any suggestions for the pain and how to get some energy some days its hard to get anything done.
  7. Update to meds

    Sounds like some good changes, I know when I added a 50/200 C/L ER at night just before bed that helped me sleep better. I woke up with less stiffness and my feet hurt less in the morning. When you switched to the Rytary did you notice a big change from the regular Carb/Levo? Do you feel it is working better? Thanks for any responses.
  8. Just diagnosed at age 40

    hi amy2beth currently 63, diagnosed at 48. imho exercise is #1 to try to slow progression and possibly make you feel better. there's lots of research on slowing progression and/or reversing pd so you should stay abreast of this research. there might be a cure in the next 5 years. before i was diagnosed i had 2 frozen shoulders and now when my medication wears off my left shoulder and right knee hurt. if you qualify for social security disbility get familiar with how to apply. SSDI is a seperate insurance system that straight SS and you can really screw up if you don't have the doctor backing you up thru regular documentation of your progression and if you wait too long to file after you stopped working. i was denied for SSDI, being a 1 person company do no manageement describing how my pd interferred with my work, not seeing my neuro regularly, waiting to lo'ng to file killed my case. bottom line is keep informed, exercise, don't be afraid of sinemet, and stay in the best shape you can so you'll qualify for the cure when it becomes available. don't get suckered in by supplements, chelation therapy, alternative therapies mentioned on mesage boards, you don't know if the poster actually has pd. best of luck
  9. Good morning!!

    I feel so much love and support from you, dear friends. As I leave for another day at the hospital with my family I will take y'all with me. Love, Dianne
  10. Good morning!!

    So sorry-prayers to you and your family. LAD
  11. Good morning!!

    Dianne, I'm glad your cold and orthostatic hypotension are better. I'm sorry about your father. Remember to take care of yourself and listen to your body so that you can rest when it's needed. I'll be praying for you and your family. Peace
  12. Good morning!!

    jb, Thanks for letting us know how you are doing. Am sorry to hear of things becoming even harder, and off times happening more often. Same thing I'm going though. No energy and cognitively I'm getting more and more challenged. I've pulled back from posting and being online as much as I was and have also decided not to keep up with the political news except maybe twice a week. Too upsetting in almost every way to watch. Lies and scandals from every direction, with such a scandal-ridden president "leading" our country and a Congress that is so ineffective from being loyal to their supporters rather than the country. Now isn't this just the most cheerful post?!!?? Not. So let's see... Tomorrow is another day, as Scarlet once said. And a joyful one, being a day to give thanks to the Lord for all of the good things our country still holds. A time of being around the table of abundance with family and friends (with no smart phones allowed) talking and laughing together.
  13. Good morning!!

    Dianne, I know from your having shared with us previously that your family dynamics are very difficult. I'll be praying for you and your family and your dad.
  14. Good morning!!

    Dianne My thoughts and prayers are with you Bard
  15. Good morning!!

    Good morning, Just an update. Got my furnace fixed. Turns out a bird flew down the chimney and got stuck in the fan motor... super gross, but now Mrs. S and I are warm again. And, not all my vivid dreams are terrible. Today, I woke up laughing from dreaming about grandkids (i don't have any yet) but I get the feeling when I do, they will be very funny people. -S
  16. LAD,

    I tried to send you a message, but apparently your mailbox is full.

     

    -S

    1. LAD

      LAD

      I deleted some stuff... thanks for letting me know 

       

       

  17. Good morning!!

    Hi Dianne, So sorry that happened to your father. I will think of you in the coming days and will hope the best for your Dad. Once again Dianne you are in the center of a medical situation requiring your strength and faith to guide you and make you strong. I wish you well my friend. Hug you, jb.
  18. Good morning!!

    Good evening. Thanks for asking about me. My cold from last week is nearly gone, and my orthostatic hypotension is better controlled. Yesterday, my 87-year-old dad suffered a severe stroke. I spent most of the day and evening in the ED then in the critical care unit. The family gathered again today at the hospital to watch and wait. In some ways, Dad showed improvement; in the early afternoon, he developed and fever of 101. By the time I left to come home this evening the fever was down. Tomorrow we will wait again to see if he will improve. It's tiring so I must learn to budget the amount of time I spend at the hospital. The doctors say he has obvious brain activity. Only time will tell. Dianne
  19. BODY WIDE PARESTHESIA

    I (was) invisable, changed my name. My symptoms started in 2009. They have subsided greatly, although, not completely gone. I never did get a PD diagnosis; no PD motor symptoms developed. Do you experience internal tremor and body wide parathesia?
  20. BODY WIDE PARESTHESIA

    Hi Invisable, just read your thread here.Graflexmaster is right.I had similar experiences with non motor symptoms for many years since my early 20s,while different doctors were attributing these symptoms to anxiety and stress,until early last year before the dx of PD.I currently see a MDS .If I may ask anyone here,with symptoms of paresthesia,what gives you relief?Do you take any medication apart from PD medication for paresthesia?Your response would be appreciated please.
  21. Good morning!!

    Glad to help! Enjoy the little one! Happy almost Thanksgiving all!!! LAD
  22. Just diagnosed at age 40

    Amy2beth- Be present.... Eat the cake .... Buy the shoes...take the trip ....and my motto- dance like no one is watching!!! Stay strong & stay hopeful!! LAD
  23. Last week
  24. Just diagnosed at age 40

    Thanks everyone for the great advice! It's comforting to know there are others that are going through the same thing.
  25. What caused your Doc to suggest DBS?

    This awful experience serves as a good reminder : when traveling, I always carry a large part of my meds in my hand luggage and the rest in my suitcase (checked baggage). If my baggage is lost, I always have my meds in my hand luggage, and conversely. I always travel with more meds than necessary. And I always take a doctor's prescribtion just in case. Having dbs does not mean that you will be medsfree. Most people who had DBS still take medications but far less than prior surgery. Take good care, Mimi
  26. Good morning!!

    Thank you for the Crayola Color Wonder suggestion LAD. I just googled it and it looks like an excellent present. That is going on the Christmas shopping list for sure. And jb, I'm going to "plant" and egg with fresh straw in the hutches and hope it works because hunting for eggs isn't a winter activity.
  27. What caused your Doc to suggest DBS?

    Thank you Texas Tom, Good information and gives me an idea of things to keep in mind. So far I am doing good, just having some dystonia more often that is causing some issues. Most likely need an adjustment to pills. But it got me thinking what is it that gets people and doctors to start thinking about DBS. Hope you have had some good results so far. Blessings Adam
  28. Approved for DBS

    Scott, Warana likes to scare the hell out of anyone considering DBS. For those of use who still have a lot of living to do, and wish to reset that damn clock, then DBS is worth it. For me my limit for walking was to the mailbox and back (200 ft). After DBS, and with my faithful Golden Retriever at my side a 5K walk is not only possible, but fun.
  29. Infinity DBS system - issue

    I had the "honeymoon" for a few weeks after surgery. Brain swelling does something very odd where I just didn't seem to need my medication! Two weeks after the brain surgery, the simulator was turned on. I was still in the honeymoon period. Next four months I had monthly assessment and readjustment. Then every six weeks. Finally after at year I'm back to every three months for appointments. Still tweaking settings a little. Left side very stable, right side depends on taking Sinemet every four hours (one tablet). Couldn't get away from it completely, but still at 1/3 what I was taking prior to DBS. Much better bladder control! (yipee!) It's a journey, not a quick fix. EDIT: Two months since Deepek had surgery -- looking at his early post. Brain Swelling can take months, and everything is just off until that settles down. So give it time, but talk to your MDS. Mine would have me not take any medication for 12 hours (oh fun!) prior to my appointments. I'd have to remember my depends shields for those mornings (when I'm off, my bladder lets loose without warning. Sigh)
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