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

    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

    Question
    See full photo

    Are you Dis-abled? Are you Handicapped? How do you see yourself? How do you think others see you? How do you wish they would see you?

    I often think about how I see my situation, how to label myself…am I handicapped? Am I disabled? and what the reality is. To be honest I often worry about how others see me too. It takes a lot to process my limitations and how much my life is affected by my plethora of health challenges…

    …on any given day: I may have my feet & legs burning in pain due to the Neuropathy I got from my first HIV drugs; I may need to be in the dark with no sound due to an unrelenting migraine; I may stumble putting on my clothes or fall getting up out of a sofa due to my balance problems; I may drop food on the floor from a shaking fork due to my essential tremors; I may not be able to hear someone unless they are close and facing me … even with my hearing aids on; I may only see blurry images and words without may glasses on; I may find it very uncomfortable to sit in a normal chair due to pain from my back problems; I may get lost searching for words numerous times in a discussion due to brainfog; I may have to refer back to get spelling of a word, going back and forth writing every syllable due to my memory problems; I may be deeply depressed or have exaggerated feelings in what I call my Bipolar Brain; I may get incredibly nervous before being around other people due to my anxiety; I may find myself feeling the pull of my addiction.

    Whether it’s one of my multiple physical health problems and/or one of mental health struggles, they are all just part of my daily challenges. So have I “earned” the ability to park in a handicap parking spot? What do I think? Does it bother me when people stare? I have learned I have to do whatever it takes to take care of myself. I have learned to not worry what other people think. It might be a day dealing with one of my “invisible illnesses” or things I am struggling with inside. I look just fine on the outside with what you can see. (except when I’m walking with my trekking poles so I don’t fall), I may be dealing with challenges that they can’t see, can't be seen, and things they can’t even be aware of.

    So it's hard for others to know what it's like for me to live with such challenges! Because I am embarrassed and hide them so nobody can know about them, nobody can judge me because of them … but then nobody can understand, nobody can love and support me. I hide them all alone and it’s a very heavy load to carry!

    ———————————————————

    I just spent a whole weekend with my friends on vacation. They were kind and concerned and often offered a hand or reached out to help me …but I declined…

    ,.. because I have got to practice. I have got to be able to get myself off the floor if I fall when I am home alone. But I think it is also because having them support or assist me means I am unable to take care of my challenges myself, unable to do so because I’m dis-abled! A tough label to own and accept!

    #MentalHealth #Disability #Depression #Anxiety #Migraines #COVID19 #BipolarDisorder #RareDisease #MightyTogether #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #ChronicPain #ChronicIllness #TheMighty #mighty #Selfcare #Selflove #IfYouFeelHopeless #Hope #PTSD #HIVAIDS #BackPain #Addiction #AddictionRecovery #MemoryLoss #ParkinsonsDisease #Tremors #balance #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #DistractMe #PeripheralNeuropathy