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.

Click on the icon in the lower right side of your screen to enter the free chat room. Then, enter a name and create a password to enter the chat room. People come and go throughout the day so when you arrive, there may (or may not) be anyone hanging around.

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

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

      1. I am new. Have had PD stage one for 5 years and have made a full time job of trying to beat it —seminars, donations, sponsoring research, diet, exercise( running, cycling, boxing), deep massage,yoga, meditation, functional meds, stem cell treatment with StemGenics that didn’t do anything. Looking for anything new ( including any other stem cell recommendations.)
        My main symptom is anxiety and anxiety, a slight left hand tremor.

      2. Hello. I am new. I have had Parkinson’s for 1p years and had continued to work full time as a teacher until now. I am trying to decide whether to apply for early retirement. So scared!

        1. I just quit work the end of 2015-best thing I have ever did. time for myself and learning/excercise/relaxation..Lowered my stress. It was scary but is the best in the long run

    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.?

    3. Hello. My name is Mike F. I was dx in April of this year. I am currently taking 2 and a half tabs of carbadopa/levodopa 25/100 4 times daily and 1 tab of carbadopa/levodopa at 3am as needed and 80 mg of propranolol. I have right hand tremors, some right foot tremors, masking, slowness of gait and some swallowing and speech problems. I could use any kind of information that any of you might be able to give me. Thank you!

    4. Hi Maria, I was diagnosed 12th December 2014. I don’t have a tremor. I am quite slow in everything that I do, I can’t write (which was my first sign), I have no energy at all but suffer with apathy…

    5. Hi Maria, I was diagnosed 12th December 2014. I don’t have a tremor. I am quite slow in everything that I do, I can’t write (which was my first sign), I have no energy at all but suffer with apathy…

  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.

        1. I take pramipexole 0.5, entacapone 200 mg and carbidopa/levodopa 25-100mg tabs with good results I have shaking on my left side only.

      2. hi I was diagnosed about 2 years, I have a tremor on right hand and leg a very noticeable stiffening of joints . had to pack in work last july

    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?

    1. YES I had melanoma within a year of diagnosis,treated effectively but I get regular appt.with dermatologist.. Does anyone have autonomic problems like excessive sweating shortness of breath.

  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

    2. I have these zone out times everyday and some days all day! I hate them. I’ve had Parkinson’s for 7 years now! And i have had these zone out times almost right from the beginning. I cannot swallow, eat ,drink, talk ,move…..etc….while in these zone out times. It starts any wheres from 1 hour before medicine time till1 to 2 hours past my me d times. It’s getting worse.

  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!!

    3. I was diagnosis last Sept 2 weeks before my retirement day as a nurse w/the gov’t. I had dx myself 1 1/2 prior but kept quite. I thought I could control it but now it controls me. I shatter my right upper arm in April 2015 & June broke a bone in my foot. Everything on right side. Still consider early stage but seeing therapist on my own. I became a recluse and depressed. Cried at everything. My arm has left me w/a disability. I’m slowly getting back into a retirement routine. I have no hobbies or activities but always worked 2 jobs to have a good retirement. Now will I be able to enjoy it. dianne

    4. When my doctor asks me if I feel depressed, I answer ‘what kind of person wouldn’t feel depressed when they have PD’?
      I was diagnosed 21 years ago and have been in a slow but definite decline. Just keep trying different drugs and exercise. It’s like one big chemistry experiment. I hit a plateau every now and then when things are stable, but it never lasts long and another symptom rears it;s ugly head. I found Rock Steady Boxing helpful. See if there is a chapter in your area.

  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

    1. My 71 year mother was diagnosed 2 weeks ago with PD after she fell down and hit the back of her head on the concrete tile floor. Thats when all the problems began. Last week she tried to take her life by taking 25 colonopin pills at one time. The hospital just released her to go home with us after 72 hours in the icu. She has a very severe tremmor in her jaw which dosent stop driving her crazy and frightens her even more as she is now on new medication as she continues to go through strong withdrawl symptoms she is asking me for help and what to do cuz she can barely walk and talk. She is depressed and has a blank stare without expression. her bladder is out of control and has no tase for food. she weighs 94 lbs. because of all of this. Can someone please help us. were scared too.

  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

      1. Hey Mike,

        I feel the same way. Its so frustrating to not be able to do the things I used to. I tried playing the Wii with my daughter and could not control my movements. I really hate this! I know there are worse off people out there but lately ive really been feeling sorry for myself.

    2. Hi Tiffany my name is Lynne and I have had Parkinson’s for 4 years I haven’t used a chat room before and would like to chat to other PD folk. you can reply here if you want to.

    3. Hi tiffany I noticed your post was back in june so don’t know if u still check the room. Im much older but will be happy to chat if you would like. My biggest prob is anxiety about every day happenings. While on my meds I don’t shake too much.

  9. I am new to this never have used a chat room before. I have been living with Parkinson’s now for 4years and I would like to talk to other folk with PD.

    1. Hey Lynne

      I am trying to find an actual chat room to talk to people in real time and also at night because im up alot at night. The parkinsons is now really affecting me and I feel bad having to ask for help. Im suppose to start physical therapy but had to fight with insurance first.

      1. Hi ::

        This is it! Click on the link below and enter the chat room where you can connect to people in real time. If no one is in the chat
        room come back later. People come and go.

        Robert Rodgers PhD
        Road to Recovery from Parkinsons Disease

        1. Hi Robert I cann’t see the link to click on to enter the chat room. It looks like some others are also having a problem.

          1. Hi:

            I submitted a problem report to the programmers this morning. The problem should be fixed soon with a little bit of luck.
            Robert

      2. Hi Tiffany, I am new to this so forgive me if I make a mistake, my spelling can be a bit off sometimes. I was happy when I saw your reply. Sorry to see that you have had trouble with insurance because when you start your Physical Therapy you will find it will help you mentally and physically. I have had PD for 4 years now and I have found exercise has slowed my PD symptoms. My tremor has lessened. I am usually up until 11pm. Our time lines may differ but we can try to chat if you would like.

    1. Hi:

      Yes – just enter a name on the panel that appears here on the website and you will enter into the chat room. Sometimes no one is there. Sometimes there are people chatting in the room.

  10. Diagnosed 6 weeks ago……55 years old and very active. Had RLS all my life, wondering if any studies exist that prove or disprove a connection with PD.

  11. I was diagnosed in march 2015. Im on meds that work well for the most part but the biggest prob I have is anxiety always worrying about money. I have adult children youngest is 51 alcoholic had surgery to bypass liver. Every so often he eats the wrong foods and I have to take him to the hospital and there goes my anxiety sky high.should I ask my doc for a stronger med or is there even one stronger. Or should I take additional pill. I fight the anxiety every day. Im not depressed doesn’t bother me that I have pd shaking is not that bad just the anxiety drives me nuts

  12. There is recent research on FDA approved drug called chloroquine which excites Nurr1 protein. Nurr1 is thought to heal inflamed cells in substantia miagra which cause PD symptoms when they die. Research was conducted by McClean Harvard Med School. PD rats were helped by this malaria fighting drug. Researcher is Kwang-Soo Kim PhD. Google Nurr1 and you will find the announcement. Has anyone heard or thought about this. It seems revolutionary.

  13. Hi. Happy New Year to all of you. I am Gopal from Mumbai, India. I am 78 years old. Diagnosed with pd 3 years back.
    I would like to share my experience with you all and would
    like to receive your comments. This is the first time I am coming for chat. Thanks and good luck to every one.

  14. Hi everyone, is there a place we go to talk or do we all talk here there use to be a place where we all went and talked daily . I really liked that. I wan t to g e tback into this again. le t me know! Please 1
    sandy

    1. Well – you are at the right place to chat every day! This is precisely why I support this chat
      room through Parkinsons Recovery. I suggest that everyone connect into the chat room at
      11:00 AM pacific time every day this week (2:00 pm Eastern time). Once you connect with others
      you can set a time that is convenient to everyone.

      Robert Rodgers PhD
      Road to Recovery from Parkinsons Disease

  15. my password won’t work all of a sudden, i asked for a new
    one tonight and it won’t work either/????will you ask if people will come back again to talk. i missedn the 10thof January.please

    sandy

  16. I have fairly recently been diagnosed with either Multiple System Atrophy or Neurodegenerative Basal disease. I would be kidding if I said this was not devastating, I am on disability and social security. I had and have excellent benefits from my past employer. I am almost 59 hrs. old and am or have recovered some of my speech and walk. I did not have a hard time getting disability and social security benefits were expedited, and I am grateful. I go to numerous doctors and am well treated. I guess what I am trying to say, I discussed it with my family. I want to get away from everyday treatment and do somethings I want to do, while I am still able to do so.

    1. hi,
      i was diagnosed 6 yrs ago with PD. then diagnosed with lyme. have been to 3 lyme doctors. was on 2 yrs of IV antibiotics and also oral ones. sometimes i felt better but had bad herxs. i had a DAT scan which showed depleted dopamine. my symptoms have gotten worse. they are shaking in both hands, sometimes lips shake, whole body will shake, stiff body, off balance, sometimes can’t move, can’t write, hard to hold utinsels, stopped driving. in the morning when waking, it sometimes feels like electricity going thru my body and my whole body shakes uncontrollably with pain everywhere. i’ve been on detox treatments, nutrient supplements, bio feedback, now on heavy metal detox treatment. i’ve had the works. i still think it was lyme caused.
      there is a company called M3 Biotechnology out of seattle. they are working on a drug “stem cell” called MM-201 that has cured animals of PD. In March of 2015, a female pharmacist by the name of Leen Kawas was on the news and said with this drug they could probably have a cure for PD within two years if they could get the funding. there’s the magic word “funding”. i know i’m being sarcastic when i say,
      i guess funding Iran is more important” but unfortunately true. i truly think that if we all wrote to our congressmen about how important funding is for PD research, it could make a difference. check out; http://www.m3bio.com
      sending all of you positive energy. hang in there. we’ll get through this together. : )
      Rainbow

  17. Hi, I was diagnosed with pd in September 2007. I also have rls (restless leg syndrome) and I shake a lot in spite of my medications. The feeling of being stuck to the floor (legs won’t move) is the worst part for me. I am 82 years old so don’t know how much is aging and how much is the pd. Was always busy until 2 years ago when my husband passed away–then things started going down hill fast. We were married 62 years and don’t know how much that loss has affected the pd. Have always been upbeat but starting to wish for the end to come. It has become more than I can handle but will try to think positive. Hope the MM-201 comes into production soon for you younger ones.

  18. (MUST READ: HOW I GOT CURED FROM PARKINSON’S DISEASE)
    My name is Claudia Kosa I thought i should share this here as someone may need this information; I was diagnosed of Parkinson’s disease in February 2015, my doctor told me it has no permanent cure, i was given monoamine oxidase (MAO)-B inhibitors and other medications to ease the situation, this continued till a friend of mine told me about Dr Mapipa from South Africa who cured her father of parkinson’s disease and Glaucoma. I contacted this herbal doctor and bought the herbal medicine from him, i received it within 6 days and applied it as prescribed and was totally cured within 19 days of usage. my life is back again! Contact this herbal doctor via his email mapipaherbalclinic(at)gmail(dot)com or call/whatsapp +27617403481 (Write email in right format)

  19. Hi, I am 43 and an ex-boxer, I was just diagnosed with PD, not sure if it was from boxing or chemical exposure, either way I have it was looking for a blog or chat room that I could talk with others about the disease, since it seems I am having a very hard time dealing with this and not many seem to understand.

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