Parkinson's Disease

Join the Conversation on
Parkinson's Disease
4.4K people
0 stories
2.1K posts
  • About Parkinson's Disease
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Parkinson's Disease
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    I'm new here!

    Hi, my name is JRokk. I've been diagnosed with Parkinson's Disease.
    #MightyTogether

    Post

    Grieving a diagnosis?

    I've been having a hard time lately. There has been a problem with one of my direct reports and its always hard to have those conversations. My supervisor sat in on the meeting and said I was firm but not mean but my direct report does not understand that she did anything wrong. I can't help but thinking I failed. I keep reminding myself that I can't control the behavior of others but my heart won't listen.

    I had a confirmed diagnosis of early Parkinson's disease a month ago. There is a tremor in my right hand and muscle rigidity. But I can't help but thinking that this is not going to improve. And there is no cure. Is there such a thing as grief over a medical diagnosis?

    I already suffer from depression and anxiety and all of this is not helping. Also, it gets dark earlier and I can't get out and walk. And to top it off, 2 rapid c*vid tests came out as positive. So I am alone for the holiday. The only saving grace is that I've had 3 boosters and this just feels like a really bad head cold.

    I'm having trouble seeing anything positive. #Depression #ParkinsonsDisease

    Post

    I'm struggling

    I feel alone. I have no close friends. I am isolated. I just work and then spend time alone. I have to talk to a team member about her tone with colleagues. I dont have enough staff. My supervisor is busy with other people so I'm floating without support. I have also been recently diagnosed with early Parkinson's disease. I have not had time to come to terms with it. And money is so tight. I feel like giving up. I'm so alone. #Depression

    Question
    See full photo

    Would you rather have magic powers or super speed & strength? Or something else? See the new article I just posted above w/ a great survey to answer

    This question was posed someplace else on The Mighty and got great answers with insight, reflection and many coming from a place of wanting or needing. I started saying I would want a great healthy and durable body and stable mental health ….but read somebody else’s response and realized if I had magic powers I could make myself cured of my mental health challenges and grant myself a great new body and then do even more… I got to thinking of what else I could do with magic powers…and thought big like I could eradicate all suffering and diseases and create empty hospitals and bored doctors and of course …World Peace and no war and all people would get along and respect each other… but then thought small like I myself would have no financial worries and with my stable health have a great job I can flourish in with my healthy body and mind…and be able to make more of a difference in the world.

    What would you do with magic powers? Or what else would you like to have (think big!)

    #MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicPain #ChronicIllness #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #HIVAIDS #longtermsurvivor #Fibromyalgia #IfYouFeelHopeless #Hope #DistractMe #TheMighty #MightyMinute #MightyTogether #mentalhealthwarrior #Addiction #AddictionRecovery #Cancer #ParkinsonsDisease #EssentialTremors

    Post

    I'm new here!

    Hi, my name is Blessedannie. I'm here because I have Parkinson's and advanced fibromyalgis.

    #MightyTogether #Anxiety #Depression #Fibromyalgia

    Post
    See full photo

    THANK YOU SO MUCH... WE HAVE REACHED 1,500 members … and counting! If you haven’t joined us yet we welcome you to join our community!

    Thank you for joining us as we support each other with our multiple health challenges! We appreciate you being a part of our community. This group was started with the intention of being a place where members can empathize with each other, find support and offer support to others. We love watching as this has been happening, but we think we can get even stronger! Please consider commenting or responding to other’s posts and responses even more. Even if it’s just a ❤️ or a 👍... or respond with a comment. This really helps us to feel supported and encourages people to post more.

    Thank you for joining us on our journey so far and we look forward to getting to know you all better in the future.

    Your Multiple Health Challenges Leaders! 💜❤️👍

    #MentalHealth #Depression #Anxiety #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #PTSD #COVID19 #Migraine #ChronicDailyHeadache #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #RareDisease #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #Cancer #IfYouFeelHopeless #Hope #TheMighty #MightyTogether #MightyMinute #mentalhealthwarrior #Grief #Headache
    #RareDisease #Asthma #Suicide #Trauma #DistractMe #CeliacDisease #FunctionalNeurologicalDisorder #EhlersDanlosSyndrome #ParkinsonsDisease #Autism #AlzheimersDisease #Dementia #BrainInjury

    Post

    Something worked for me, please read on

    I had BMS for a good 20+ years. I questioned my general dentist, periodontist, oral surgeon, pcp,
    endocrinologist, and anyone else who I could ask if they knew anything about it.

    I my case, it only affected the left sideof my mouth, lips, tongue and upper palate. Right to the midline. Odd.

    I was told by different medical professionals that it was psychological, it was due to a combination of the medications that I was on, it was food intolerances and more. I tried " miracle mouthwash" and .05 mg clonazepam 3 x day. No change.

    I eliminated different foods and food groups for weeks at a time. Nothing.

    Sometimes wearing my bite guard during the day would lessen it, but only a bit.

    As I was in the process of getting diagnosed for a genetic disease, I had reason to see Neuromuscular Speciaist/Neurologist/Psychiatrist (all one physician) at Mass General in Boston. Along with being diagnosed with Mitochondrial disease (muscle biopsy then Genetic testing) I was also diagnosed with small fiber neuropathy (skin biopsy) and autonomic dysfunction (lots of tests).

    I figured that this is the person who can help me with BMS! He discusses things with colleagues at Mass General and other Boston hospitals. He trialed me on Gabapentin and Lyrica but they really affect my mood. Trialed some Parkinsons drugs (off label, I don't have Parkinsons). Finally landed on a drug called Pramipexole (another Parkinsons drug). My pain went from a 10 to a 1 with some time and dosage adjustment, if I have any at all.

    Your mileage may vary. Be well!
    My Neurologist- Dr. Michael Bowley
    Mass General Hospital

    #BMS #SmallFiberNeuropathy #neuromuscular #mouthpain