Join Others in the Parkinson’s Chat Room

This Parkinson’s Chat Room is supported by Parkinsons Recovery which was founded in 2004 to provide support, resources and information to persons currently experiencing the neurological symptoms associated with a diagnosis of Parkinson’s Disease. The chat room is one of the many free services that is subsidized by Parkinsons Recovery.

Enter any user name in the space below to access the chat room. People come and go throughout the day so when you arrive, there may (or may not) be anyone hanging around.

You may need to update your JAVA software. The system will prompt you for an update if you need one.

Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease
www.parkinsonsdisease.me

43 thoughts on “Join Others in the Parkinson’s Chat Room”

    1. Wow really I always heard that it never starts out on both sides of the body but always on one side and then steadily moves to the other over a period of time! Is it a resting tremor?

    2. Good luck Maria.You have to try and remain upbeat. One of the hardest things is getting used to the very different feelings and emotions you will encounter everyday as your medicattion kicks in and out. How old are you.?

  1. Just checking this out. I’m a single person who needs to figure out how to manage my disorder, minimize limitations and live with both.

    1. hi, i was diagnosed pd 15 years ago at age 39, its not as bad as it first looks, its a bad one but it could be badder.
      Stay positive and don’t be ashamed to ask for suport.
      Phil

      1. Hi Phil, Sounds like you have lived with this for a while. I hate the shaking part and my specialist say they cant do anything for that.

    2. Hard to find people to chat with. Mostly doctors etc. I’m older-73 and got it 3 years ago. X big 10 foot ball play, veteran and business man semi retired. And don’t like it but I got it. Still in early stage. family doctors don’t know much and specialists don’t care much unless you are willing to cough up big money for the latest pill. Soooo.. howdy

      1. Curt, Your post sounds familiar. My husband, 78, was recently diagnosed, first with early stages PD, then I took him to Stanford, where the neurologist said vascular parkinsonism.
        She increased the sinimet to 4 times per day instead of the 3 he had been previously prescribed. To make a long story short,
        it isn’t working. I look on the internet and it says the meds used for PD do not work for VP. It’s so hard to know what to do. His problems are mostly mobile. He gets to walking too fast and falls down. Guess we’ll go back to doctor and try again. We’re getting so tired of it all. A friend of mine
        who has PD and has it under control tells us to keep trying different neurologist until we find one that knows what to do. He said he went to 6 different ones. He lives in Ark. so we can’t go to his. I hope you can find someone soon to help you.

    3. Hi Dixie,
      how old are? how long have you had Parkinson’s?
      What are your symptoms? What state do you live in?

      I have had Parkinosn’s for 6 years now and mine is m oving fast.
      I am59 and I live in MIchigan.
      contact me and we will write more.
      sandy

  2. Hello. I’ve had PD for approximately 15 years. Have been on Sinemet and amantadine the whole time. I’ve been treated for melanoma in one eye and am prone to skin cancers on my face. PD medications are strongly suspected to cause cancers. Have any of you dealt with similar problems?

  3. I was diagnosed three years ago with PD, has anyone else having these zone out time or frozen times. It seems I’m the only one with this symptom.

    1. my signs of PARKINSON’S STARTED WITH MY TONGUE SHAKING IN MY MOUTH CONSTANTLY, I could not wash my hair any more my hands would not ago back and forth. I punched AND kicked my husband in bed at night.
      I am now 59 and have been diagnosed for 6 years now. My doctors here said there was nothing wrong with me, so I went to Mayo Clinic in Rochester, MN

  4. Hello everybody! I have been reading your posts and I guess I fit in here someplace. I have been diagnosed with PD not three years ago but five years ago. My daughter put three years ago in error. I am having more difficulty walking. I break out in sweats. I am hot and then I am cold. I am taking a depression medication but still feel depressed most of the time. I cry for no reason. The only time I go out of the house is when my daughter takes me to an exercise class once a week or once a month and when she takes me shopping. I miss going to work (waitress) and seeing all my friends and customers I knew. There are times I have thoughts of leaving this world. My neurologist is the Chair of Neurology at Columbia Presbyterian Hospital in Manhattan and seems as though she can’t find a better way to treat my symptoms. I am reaching out to all of you who might have suggestions on how to deal with the way my PD is affecting me. God bless you all.

    1. Hello there, I very much suspect my husband has Parkinson’s disease. He has was diagnosed years ago in his 40’s with a sleep disorder at Mayo Clinic that sometimes preceded or even coincides with Parkinson’s disease. He acts out his dreams by kicking and punching me for one( I now sleep downstairs). He also tried to strangle our small dog as he thought there was an intruder in the house but she let out a peep and he woke up luckily. And he falls out of be quite often. he moves very, very, slowly. His joints are very stiff, he cries alot. and he won’t get out of bed for days. He pushes himself to go to work and and when he has a few days off he never leaves the bed. His memory is failing. He blames me for things. nd lately he has been in bed with cold and hot swets with no fever. He is not the man I married. I went into the hospital for an operation and had terrible problems and almost died. he came to see me once and never called. He won’t go to the doctor. What should I do?

      1. Get him to see a doctor so he can get help, tell him to quit work and collect disability, and he needs his family and understanding and help. I did the same t hing to my husband, kicked and punched him in bed, he has had his own room for 5 years now.
        I HAVE NOTWORKED SINCE I was diagnosed and can not drive, my husband had retired because he is older than i am and he had to go back t o work ,s o I could stay home.

        1. we do not like having Parkinson’s disease believe me, there is nothing we can do to turn it off, Do people understand all the things we cannot do any more, th e sheltered life we have to live now?
          WE need care, thougt fulness, understanding, and companionship so we do not feel like freeks!

    2. hi mary,
      i have had parkinson’s for going on 6 years now, I am discouraged too! I take meds every three hours during the day and my wear off time starts 1 hour before I take sinement and then it lasts for 1 hour after I take the medicine, so this means I am good for two hours bad two hours.
      Where off periods, i can not a talk very good, i drool, i get very weak, I cant even pull up my pants, i cant chew my food, then i get stronger after 1 hour and I can do anything.
      But Mary on the good hours I can do anything I want, I do have falling problems to. not when i am walking, when i stand or stop walking. I lean forward and down I go. But I am still alive and able to be with my two kids(26 and 30) and my hudsband. there are things to look forward to ! Don
      t give up!!???Keep fighting!!

  5. Hi everyone,
    Thanks for your shares, it’s nice to have support from others. I am caregiver to a family member with PD. There’s a new medication called Northera which is supposed to help level blood pressure drops (which can cause dizziness ). However I’ve noticed my family member becoming more irritable and anxious while on this medication. His toes are losing circulation and nails have turned white. Is anyone familiar with this drug??

  6. I was recently diagnosed with PD and am currently taking simenet I am 52 and am confused on whether or not to tell employer about my condition I work outside in a bucket truck and ladders on the comm lines I don’t want to lose my job I have a child still in high school any suggestions my symptom’s are tremors which are mostly controlled by MEDS it feels like other symptoms are starting too like slight dizziness

  7. I am 62 female told I have Parkinson, but none of the med help.
    someone ask if I was tested for Lyme disease. I said ‘no’. Apparently Lyme disease and Parkinson have similar symptoms.
    Should the Dr. rule out Lyme disease?
    I going to ask my Dr. about Lyme disease, does anyone know how they test for Lyme disease?

    1. Hi, I was first diagnosed with parkinson’s (pd) but only took meds for 6 weeks. Several months later was diagnosed with Lyme’s via Western Blot igenex test i think. i can check if you’re interested. This was in 2010 and regular doctors didn’t use very good measures. I went to a functional medicine doctor and he sent me to a specialist. I had quit seeing the neuro but saw the lyme dr for 2 years. He put me on pulsing antibiotics. The lyme seemed to clear up but the antibiotics were so toxic! The pd symptoms seemed to get worse. Then I stopped. You can read my story on my website. I just wanted to give you encouragement. I’m doing much better now. I’m interested in what meds you tried. http://www.lightheartedtherapy.com is a website dedicated to healing, especially, but not exclusively, parkinson’s

      1. Hi:

        What an interesting story. Would you like to be a guest on the radio show?

        Robert Rodgers PhD
        Parkinsons Recovery

  8. Hey…my name is Tiffany. I was diagnosed with parkinsons at 39. I am now 46 and have no one to talk to.

    1. Hi Tiffany, I am in the same boat. I just pasted 10 years since diagnoses. I was 52. Turn 63 in 1month. I am recently getting very frustrated with the progression of the disease. I’ am usually a fighter, but am I am beginning to fell like I’m stuck in the 15th round of a boxing match.
      I’d be happy to share with you. MikeMcM

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