Parkinson's Disease

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Parkinson's Disease
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    I'm new here!

    Hi, my name is NancyJo10. I'm here because I want to learn more about working with/friendships with persons with developmental disabilities. I am also here because my husband has Parkinson's and I am his primary caregiver.

    3 reactions 2 comments

    I'm new here!

    Hi, my name is absolutelymelanie. I'm here because I have been advocating for people with rare neuromuscular diseases for a decade and caregiving for family with Parkinson's Disease, and now I'm a bit of medical mystery myself and I. am. so. tired.

    #MightyTogether #Anxiety #Depression #Migraine #RheumatoidArthritis #Hyperparathyroidism

    13 reactions 12 comments
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    “When I Said I Had Plans...I Lied. What It's Really Like To Have Social Anxiety…” great article with link below - towards bottom - worth checking out

    “Many people get excited when they receive an invitation to an event; I get nauseous.
    “I’m having some girlfriend over for wine and cheese evening. Would you like to come?”

    I was touched to be included in this recent texted invite from a client. Part of me really wanted to go, especially since she’s a lovely person and the majority of my social interaction right now is with my preschooler. But the thought of walking into a group of people I didn’t know and making small talk was overwhelming.

    “Thank you so much for the invitation, but I have plans that night,” I fibbed. At the time I justified it to myself (she didn’t need to know my plans were watching Netflix ― alone), but I still feel terrible about lying. I’m convinced the guilt will be written across my face the next time I see her.

    Many people get excited when they receive an invitation to an event; I get nauseous. Not because of the people involved (usually), but because there are people involved. Although I didn’t learn to identify it as such until the past several years, I have suffered from social anxiety my entire life…”

    Read whole article by Kelly McQuillan from Huntington Post:


    I never knew I suffered from social anxiety til one day my shrink mentioned it, he prescribed me a med for anxiety but I usually don’t remember to take it. Instead I often decline invitations or worse cancel at the last moment. I have even gone to the parking lot at a event, battled my fears and finally lost and turned around and gone home. I try to give myself grace and accept that it really is good self care to avoid situations that really stress me out and make me feel uncomfortable. But then I feel weak, my self judgment can creep in…”If they only knew…?” These days I try to be gentle with myself and honor that I am listening to my overwhelming emotions and taking care of myself. I don’t owe these people anything…I have to take care of myself, be gentle on myself and listen to how I am feeling!

    Moshe Adler


    #MentalHealth #Anxiety #Depression #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #Disability #ADHD #ObsessiveCompulsiveDisorder #ChronicPain #ChronicIllness #Selflove #Selfcare #IfYouFeelHopeless #Hope #TheMighty #MightyTogether #MightyMinute #DistractMe #CheckInWithMe #SocialAnxiety #Addiction #ParkinsonsDisease #Agoraphobia #PanicDisorder

    24 reactions 3 comments
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    The article below is full of great ideas on how to find a good new doctor…please add your own experiences, tips and suggestions

    Great article that talks about the importance of good bedside manner, doctors that listen, checking your insurance at the start of your search, asking good questions and do your homework of course! It has lots of good ideas especially at the end under “Finding a good fit”…like…

    “…During that first visit, think about how the doctor and office staff make you feel, HHS advises. If the doctor doesn’t make you feel comfortable, show respect for what you have to say, know your medical history, and spend enough time with you, then they might not be the one for you.”

    #MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicIlless #ChronicPain #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #COVID19 #Migraine #Headache #PeripheralNeuropathy #Concussion #BrainFog #ParkinsonsDisease #balance #EssentialTremors #Memory #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #ADHD #RareDisease #ChronicFatigue #IfYouFeelHopeless #Hope #Faith #FuriouslyHappy #Belief #Love #help #GettingHelp #InsideTheMighty #TheMighty #MightyTogether #DistractMe

    17 reactions 7 comments

    Parkinson's Journey

    I can learn many things about how others live with Parkinson's that help me and I can share my Parkinson's journey in the hope it helps others.

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    Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

    (PART ONE) Please send me prayers, good vibes, healing energy and keep me in your thoughts. It would really be appreciated. It is very hard for me to ask for help…but bedrudgundly I have been parking in handicap parking spaces and recently began using a walker. To be honest I’ve had to! I had four falls at the end of December and I am constantly catching myself from falling over and having to regain my balance and re-direct myself. It is very challenging in my apartment where I have no support and very often find myself leaning against walls and always being very conscious to make slow turns part by part like a clock, and get up from a sitting position very carefully the special way I was taught.

    Just this past February I was diagnosed with Parkinson’s with Essential Tremors and balance problems, and had to stop a med I took before bed for over 10 years that may have been causing it and then without it I didn’t get a good night’s sleep for over a month and woke up 3-4 times every night.

    Two and a half months ago I had a bad fall at my mom’s, scared her half to death and injured my neck and shoulder. I had just started PT for that when I had another big fall … hard, and my head snapped back as I hit the ground. Later that week I was diagnosed with a concussion and I have seen 5 doctors and had about 10 appointments so far since then and been to a concussion clinic. Then I saw another Neurologist and he confirmed what another said…that my symptoms from my concussion likely will last up to 6 months!!! Thankfully it’s already been 6 weeks but there is 4.5 months ahead. But he was optimistic about the progression I’ve had and said I am on the Path to Recovery! But it sure is a rocky path!

    Other symptoms I have had are really bad brain fog and memory issues which have left me having to stop and take a long break to find the right words or even remember where I am in a conversation, and having to look up the spelling or meaning of simple words. These two things are very scary and embarrassing…(please continue to Part Two below)

    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #Selflove #Selfcare #Concussion #balance #ParkinsonsDisease #EssentialTremor #PTSD #COVID19 #Migraine #MigraineBrainFog #Memory #HIVAIDS #longtermsurvivor #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #TheMighty #MightyMinute #MightyMoment #MightyTogether #DistractMe #IfYouFeelHopeless #Hope #relief #Love #PeripheralNeuropathy

    51 reactions 12 comments
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    Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

    (PART TWO - please read Part One above first)

    …and the Neuropathy and Migraines I already had have gotten much worse. I had started a new daily med for my migraines and I was having much fewer and less intense ones whenever I did have one. But since the concussion I went from only 4 a month back to 12 migraine days in December. They can really hijack a whole day from when I wake up til bedtime, with bad light and sound sensitivity leaving me in the dark with no sound and very sensitive to movement. I have had Neuropathy since I first started my HIV cocktail in 1999 but it had gone from being bedridden to manageable. Since the concussion I have struggled even before I got out of bed, and I also have no appetite at all. I was about 205 before when I got Covid two years ago but weighed in at 192 when I got out of the hospital and rehab where I did PT and OT but I just weighed in at 178. This is too much weight loss!

    This week I started PT for movement /balance and will do so 2x/wk for 8 weeks plus OT. I have been doing the exercise I was given so far 3x/day. (Please see the Update at the bottom about a new fall recently that was probably another concussion). And with the newest med I’m on I have gotten some good night's sleep. Every 2-3 nights but still some are better than none. I use a walker everywhere I go for necessary support and have started drinking two Ensure drinks a day to get protein I need with limited eating.

    I definitely am not a patient person but this 6 month scenario has me putting up with challenges for 4.5 months more and adapting to my limitations. When it’s not one thing, it’s another. It’s really helpful that I have had serious pain and lived with other limitations much of my life, so sadly it’s not unfamiliar ground and I just hang on. I enjoyed watching football this weekend while stuck in my lazyboy recliner like usual and tomorrow I will park in a handicap parking spot and use my walker to get to yet another appointment. I try not to dwell on the limitations instead I choose to remember I am on a Path to Recovery and I won’t be like this forever.

    UPDATE: Sadly, I was going to post this 3 days ago, but just fell again and face-planted and hit my head very hard. I have a gash under my eye in the shape of my glasses which rammed into my face. I cut my lip pretty badly and both places are very swollen and bruised including a nasty black eye. Just the week before my Neurologist was so happy to see I was using a walker because he said “I’m glad you’re using it because the last thing we want is for you to get another concussion” I fear (and feel) that is what I just did!

    #MentalHealth #Depression #Anxiety #Concussion #ParkinsonsDisease #ChronicPain #ChronicIllness #Disability #Limitations #Selflove #Selfcare #COVID19 #Migraine #PeripheralNeuropathy #HIVAIDS #PTSD
    #BipolarDisorder #BipolarDepression #Bipolar1Disorder #Bipolar2Disorder #ADHD #Tremors #balance #fall #TheMighty #MightyTogether #MightyMinute #IfYouFeelHopeless #Hope #Love #Belief #happy #DistractMe #BrainFog #Memory

    36 reactions 12 comments

    I'm new here!

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

    2 reactions 1 comment

    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

    18 reactions 14 comments