Essential Tremor

For five years, I lived in a space I didn’t have a name for — a place where my symptoms didn’t match the diagnoses I was given, where tests looked normal, and where each specialist saw only a small piece of what was happening. I knew something was wrong. I just couldn’t get anyone to see it.

When symptoms don’t fit the labels

My first symptom was a small tremor in my right foot. It was subtle and easy to dismiss. A neurologist diagnosed essential tremor, and at the time, that seemed reasonable.

But over time, new symptoms emerged on my right side. My leg grew tense and restless. Weakness appeared. My foot began to drag. My balance faltered. Each new symptom came with its own explanation, and each explanation made sense on its own. But together, they didn’t tell a complete story.

I also had a childhood history of epilepsy, and even though I’d been seizure free for decades, that early diagnosis shaped how my symptoms were interpreted. Over time, I was prescribed multiple anti seizure medications. The side effects layered onto my worsening symptoms. Meanwhile, many of my tests were normal, which looked reassuring on paper but didn’t match what I felt in my body.

Living in the gray space

This period, the space between symptoms and diagnosis, was the hardest part. I tried to keep going. I tried to trust the process. But I felt myself declining in ways I couldn’t explain. My husband and friends saw it too and didn’t know what to do. I didn’t either.

The moment the pieces aligned

The turning point came when a neurosurgeon ordered a weeklong evaluation before considering a seizure-related procedure. When the results showed no signs of epilepsy, I was referred to a movement disorders specialist.

She recognized the pattern almost immediately.

What had taken years to fragment across appointments became clear in minutes when she looked at my symptoms as a whole. She explained how they fit together, how dopamine loss affects movement, and why the pattern pointed to Parkinson’s.

It was the first time someone saw the full picture.

What a diagnosis really gives you

A diagnosis didn’t cure my Parkinson’s. It didn’t erase what I’d lost, but it gave me something I didn’t expect: direction, validation, and hope. My body had been telling the same story all along — it just took time for someone to hear it.

For me, the hardest part of illness wasn’t the diagnosis. It was the years spent trying to explain symptoms that didn’t fit the labels I was given. It was living in the uncertainty, the fear, and the feeling of being unseen.

#ParkinsonsDisease #Undiagnosed

Hey guys, I don’t think this will get lots of attention, but I wanted to share my story of an experience I faced yesterday.

I’d like to share an experience I recently had at a local restaurant where I was mocked and insulted by the owner and her friend. They called me “weird” and “creepy,” claiming I “intimidate locals” because I walk around town. The truth is, I can’t drive due to my disability and medication—walking is how I stay independent.

They also accused me of not paying for food, even though I do most of the time, or bring friends/family who order. Others in the community do the same or even keep unpaid tabs—but I’m the one singled out. I’m on the autism spectrum and live with multiple disabilities.

I believe this treatment was not only hurtful, but a clear example of ableism. I’m hoping to raise awareness and start a broader conversation about how businesses treat neurodivergent and disabled people. I’d be grateful if you could help share my story or guide me to the right place to tell it.

Thank you for your time and advocacy.
For context, the restaurant is called “The Dale” in Mountain Dale, NY. I have schizophrenia, epilepsy, Asperger’s disorder, and a essential tremor disorder which makes it hard for me to walk, do things independently, and makes me act quiet or very talkative in certain circumstances. I do not have a record of any violence, I just take lots of medications so sometimes I stare off into space or look grimaced.

#Ableism #SchizoaffectiveDisorder #Bipolar1 #EssentialTremor #PTSD #AspergersSyndrome #AutismSpectrumDisorder #AutismSpectrum #MightyMoment

I've signed up for group therapy/meetings three times a week, going to be switching to Cymbalta, and I'm practicing Acceptance and Commitment Therapy/Dialectical Behavioral Therapy/Compassion Focused Therapy. I've been trying to eat well, exercise, and get enough sleep (this one is hard for me). It's difficult when I feel like I'm constantly in a crisis, but I'm really trying.

My doctor prescribed me Abilify for OCD but I don't feel comfortable taking it because it has a higher risk of impulse control issues, and since I'm in recovery (like merely a few days of abstinence), and because I already struggle with an essential tremor, I don't feel comfortable taking it and want to go back to the drawing board in terms of secondary medicine.

But I'm trying so hard. And I wanted to mention that I'm still holding on.

#MentalHealth
#Addiction
#Anxiety
#BorderlinePersonalityDisorder
#Depression
#MajorDepressiveDisorder
#EatingDisorders
#ObsessiveCompulsiveDisorder
#Trauma

So my hands shake most days, worse on others, and on really bad days everything shakes. The doc didn't do any tests. At all. I showed him my shaking hands, and video of the worst days. He just said, "That's just essential tremor." That was maybe two years ago. It is getting worse. I see new doc on Monday. What should I be asking? What treatment options are there? How long until this is disabling? I've been doing reading, but it's a lot. Thanks

Since the beginning of this year I‘ve faced so many challenges, non-stop, I just cannot deal with any more. I’ve reached my mental, emotional, and physical limit, and tomorrow I’m going to postpone a scheduled procedure for a few more months (colonoscopy) because I just need a break! It will be the 3rd test for cancer I’m having since January and I still am waiting on results from the first 2 separate ones!
I just had 3 mammograms and a 6-punch biopsy. A vein was inadvertently hit, and I am entirely deeply black & blue, and in pain. 2 weeks for results. Long story of misdiagnosis, but I’m finally seeing the correct doctor to determine whether lesions on both sides of my head are cancer as my GP diagnosed. I saw a prominent movement neurologist who said I did NOT have Parkinson’s, (Yay!! Yay!!) but severe Essential Tremor which only focused ultrasound treatments to my brain or microchip implants might help diminish the tremor. (I am not independently wealthy or so inclined.)
But in addition to all the physical stuff is the termination of my relationship with my eldest daughter-she’ll be 45 soon. I just absolutely cannot “reach” her anymore.
My first daughter who I have always cherished & enjoyed began having problems in her teens, especially following my divorce in an acute domestic violence situation where I was forced to take my children & pets and give up their only home because my ex- refused to leave, and he was hurting us all. I found a great fixer-upper right across from the high school, transformed it, always had a houseful of kids, worked hard and had a happy life. Both kids were honor students and active in clubs & sports. Until my eldest dropped her good stand-by friends and began hanging out with troubled kids from other schools, and acting out. Their father’s abuse never ended, but he targeted our eldest and adamantly refused the counseling for her she so desperately needed & deserved. She turned from a sweet, bright, funny talented youngster into a rage filled, viscous, self-sabotaging bully exactly like her father. And has maintained that personality toward all her family since, blaming each of us for her unhappiness and health problems, and being unrelenting, escalating abusive, continually speaking outrageous lies and manipulative accusations that leaves her sibling and I aghast as she’s got increasingly worse over the past 10 years.
Her sibling got married, has a beautiful family, and always tried to include her sister, even’tho she was always abused & shunned. Her sister got counseling, and no longer allows the eldest into her life, although they have met several times at relatives for the children’s sake.
My eldest lives 3-4 hours drive from me. I would do look forward to her coming to visit years ago until she became very belligerent over absolutely nothing, began deliberately provoking “fights” I NEVER wanted to have any part in, objected to anything I said or asked, and got herself so angry & worked-up that she’d leave yelling, screaming, & cursing me at the top of her lungs! I live in a very quiet senior building and I did everything I knew to de-escalate the situation, each time, to no avail. The final visit, a few years ago at Thanksgiving, she suddenly lunged at me from across the living room fists raised, teeth clenched, maniacal eyes…got right up in my face, then backed off. I can never feel safe with her again. I did have a few sessions with the counselors at the local Domestic Violence Center.
So she’s continued this degrading abuse via phone calls over the past several years, blaming me for everything her father did to her, and it’s just broken my heart to hear all her bizarre, hateful, untrue name-calling and bullying. She is “in therapy” with someone online whose credentials are clearly from Walmarts 101, and who has no philosophy whatsoever other than “everything is your parents fault & there’s nothing you can do about it, so rage away making yourself sick, suffering, & staying stuck!” I can’t take any more of her endless incredible hatred. I loved that child and woman with my entire heart her whole life through thick and thin, protected her, encouraged & cheered her on, looked after her when other parents might not have bothered, had fun together…never laid a hand on her. I am gentle and reasonable with discipline that teaches consequences.
But the stress of her calls, constant demeaning without cause, is too much stress for way too long. My glucose levels skyrocket for days from the cortisol and totally mess up my diabetes & blood pressure. I just had a major Arrhythmia episode. I’m having to deal with depression & anxiety & ptsd whereas I’d reached a level of contentment and peace and pain management. She’s slammed the phone down on me once too often. I finally agreed with one of her many threats and while I said I always have and always will love her with my whole heart and soul, I will no longer tolerate her abuse in any form. No more calls or texts…until or unless she can find it in her heart to relate to me with some respect and civility. She then texted me a photo of her and a bunch of friends smiling, laughing, and said “See mom! I’m HAPPY without you! I’m having a great life without you in it!” I had a stillborn baby birth in between these two kids who I mourned over for a long time. I’m going through a great mourning now for my beloved firstborn- we’ve been thru so much together. But I feel a great sense of relief and calm is returning just these past 2 weeks and I know we’re both going to be ok. I’ve prayed for her every day and I’ll never stop. I miss who she was. A huge part of my heart and life is missing.
I’m hopeful about all my test outcomes, too. I threw my own theory into the mix. Instead of 4 or 5 specialists sending me for endless invasive tests, I’ve proposed that all my symptoms are attributable to an allergic reaction to a specific medication I started 10 years ago. I got 2 doctors to agree, so I stopped it last week and now we wait and see! Who knows? Meanwhile, should I just get the d€¥m colonoscopy over with now? Or give myself a couple months break?😵‍💫

#ChronicFatigue I #ChronicPain

I have been struggling with depression and anxiety for a good portion of my life. It has made it hard for me to find and keep jobs. I also have essential tremors which makes things hard like writing. Recovering alcoholic and addict. I'm 49 years old and from Georgia.
Obviously new to this group. My anxiety has gotten so where I experience issues with being out of my house and out and about for more than a couple hours. Working on stuff with my therapist. She said I'm not ready to get a job and that I should start volunteering though I'm on disability income and they said that I need to at least find a job with the minimal hours to keep my benefits. I'm currently living with my parents and desperately trying to get back up on my feet though there have been a couple setbacks but fortunately it has nothing to do with drugs or alcohol. I'd love to make friends on here and be able to relate. Nice meeting everyone 🌻 #MentalHealth #Depression #Anxiety #EssentialTremor #Addiction #AlcoholAbuse

I went 24 hours without vaping. I'm a recovering alcoholic and addict like I said many times over. My sponsor told me that I need to take baby steps. I've already told so many people that I'm going to quit for good this time and I guess it's not the best time for me. I know that it affects my depression and anxiety though right now I don't have a lot of stuff to occupy my time and I need to work on that. I'm not going to beat myself up over it. I know that time is coming though like I said I need to find more things to do so that it will be easier. I don't feel like a failure because it'll just need to be a goal that I will have to work on with baby steps like my sponsor said. #Addiction #MentalHealth #Depression #ADD #EssentialTremor #Alcoholism