Results 1 to 7 of 7

Thread: New member

  1. #1

    Default New member

    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. The following 4 users say "thanks"


  3. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((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.

    http://www.braintalkcommunities.org/...play.php?f=214

    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.

    https://www.nlm.nih.gov/medlineplus/...formation.html

    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.

    https://www.michaeljfox.org/

    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, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. The following 4 users say "thanks"


  5. #3
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,714
    Blog Entries
    11

    Default

    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.


  6. #4
    Distinguished Community Member Jo6's Avatar
    Join Date
    Nov 2006
    Location
    South Carolina
    Posts
    914

    Default

    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

  7. The following 4 users say "thanks"


  8. #5
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    912

    Default

    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.

  9. The following 3 users say "thanks"


  10. #6
    Distinguished Community Member
    Join Date
    Jan 2016
    Location
    between a rock & a hard place
    Posts
    187

    Default

    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

  11. #7
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    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 at 04:12 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

Similar Threads

  1. former member gone
    By Cherie in forum Multiple Sclerosis
    Replies: 4
    Last Post: 12-21-2014, 12:24 PM
  2. New member
    By em8569 in forum New member introductions
    Replies: 3
    Last Post: 10-10-2012, 08:00 AM
  3. I'm a new member
    By tgcasey in forum New member introductions
    Replies: 1
    Last Post: 09-17-2012, 06:24 PM
  4. Registered user vs Community Member vs Distinguished Community Member
    By Mike Weins in forum BrainTalk's feedback forum
    Replies: 2
    Last Post: 04-25-2012, 02:36 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.