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    I was recently diagnosed with Parkinson's and decided to get a second opinion, so as of now I'm on a waiting list. My diagnoses is early onset, I am only 34 yrs old and am having at times fairly severe symptoms. Of course I'm still in the denial stage, am wanting to join this forum in hopes of getting advice, and hear other people's symptoms and to gain any insight into what this diagnosis entails and how much of an impact it will possibly effect my everyday life. I've been constantly worried about what to expect and how to inform my family and friends. Any advice or help would be greatly appreciated.
    Thanks

    #2
    ((((((Luck211)))))) ~

    TO BRAINTALK!

    I am glad that you found us, but I'm very sorry that you need us because of your diagnosis of Parkinson's. I'm sure that this is an earth shattering diagnosis for anyone, but at your very young age, it must be quite alarming.

    Unfortunately, our Parkinson's forum is not as active as it once was. For the purposes of research for you, we do have available the archives to the Parkinson's forum, when it was active. While you can't post there, it does contain many posts, which will provide you with some understanding of the condition and how folks coped with it.

    Only registered and activated users can see links., Click Here To Register...

    I would imagine that there is a plethora of resources about Parkinson's on the internet, so you might begin by researching the latest advancement in treatments, as well as information about Parkinson's, as to its mechanics, its effects, its stages, just everything you can learn about it. Information is power, and the more you know, the better able you will be to communicate with your physician.

    For any drugs suggested for you, we have a link at the top of each page on the far right hand side: Drug Info. All drugs can be found there, and you can learn about side effects and precautions.

    Only registered and activated users can see links., Click Here To Register...

    And while you're researching, perhaps you could explore natural alternatives to treating Parkinson's, including diet, vitamins, and exercises.

    You will learn to become your own advocate, and it's best to be prepared.

    The more you know about Parkinson's, the better equipped you will be to tell your family and friends about your diagnosis. They will have many questions, as you have now, so it might help them and you, if you have gathered facts and information to share with them.

    Michael J. Fox ("Back to the Future" movies) was 30, when he was diagnosed with Parkinson's. He is now 54, and he has a foundation for research to cure the disease.

    Only registered and activated users can see links., Click Here To Register...

    Being in denial now is absolutely normal, I feel. But as you follow this journey, you will learn to accept it and work toward living the fullest life possible with it. Always remember that You are You; you are not your condition. You will find strength that you never dreamed you had. You will learn coping skills and "work arounds" to maximize your abilities.

    Please stay with us. We may not be experts on Parkinson's, but we are all experts on some type of neurological condition, and there is a universality in the challenges we all face.

    Sending a prayer of healing and strength for you ~

    Love & Light,

    Rose
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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      #3
      Hi Luck211, and

      I know you are among a small group of people diagnosed with Parkinson's at a young age. You ask about what to expect from family and friends. A lot depends on how you present yourself to them.

      Many people with chronic neurological problems choose not to mention their disorder unless they feel it's absolutely necessary. If you go that route, you might be bluffing with people, trying to cover up signs of problems you're having, but IMO that's better than constantly bringing it into the conversation.

      People usually don't want to hear about other people's ailments even though people do seem to enjoy talking about them.

      If you have to beg off when you've been invited somewhere because you know you'll get too tired, for instance, you can simply say you're sorry but you can't make it. Most people will accept that and not poke around for the "real" reason.

      If they insist on poking around, that might be the time to give a few brief details about the Parkinson's.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

      Comment


        #4
        Welcome to Braintalk, Luck211. I hope you will stay around and find the help you need.

        take care, Julia
        Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
        'cause you are the wind beneath my wings

        for my brother Ben

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          #5
          welcome.. i do not have what you have but pain is pain and not feeling up to par hits a lot of people. I post mostly on the forum called "Emotional Support Forum". ther you can rant and rave, whatever and no one minds. It helps to get it out of your system at times. I hope you have plenty of good days yet. And that you will stick around and let us all know how yu are doing. lots of good luck to you.

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            #6
            Welcome to Braintalk. We are a group of good & friendly empathetic people.

            Peace to you my friend
            The early bird catches the worms~~~~~that means, I wake up early and have worms. lol

            That's my son's words of wisdom to me! ! lol

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              #7
              I'm just seeing this post now. I'm sorry. My advice to you is to just flat out tell your family and friends. Don't be afraid. They are likely scared too so knowing exactly what your condition is may allay those fears. They will be patient when you are unable to do something. I fully respect what agate said(to each's own!) but I think people who hide their neurologic conditions have a lot of mis understandings and awkward moments when they do not reveal their condition. People will sometimes hear stuff like "I'm busy or can't make it" as "[so and so] does not care". Whereas if you say "I don't feel well because of [inset condition]" they will not take it personally. Trust me on this. I have seen it a million times. Honesty and openness is WAY better especially if these are real friends. If they love you they will know you are still you. Just like Rose said. Don't use false excuses or your family and friends will pick up on that. If your friends and family have questions remember that questions are better than assumptions! All my best to you!
              Last edited by funnylegs4; 01-14-2016, 04:12 PM.
              Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
              My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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