#Movement Disorders

[gilettefusion5]

One of the funnier things about having FND is that I can tell when I’m about to have a pseudo seizure and I usually have time to prepare. So I go find my knee braces and grab a pillow and put on some chapstick and then get on the floor to writhe around like a fish out of water. Just, hmmm I should run to the bathroom first, where’s my water, should I listen to a podcast. Ok now I can’t get up for half an hour.

[dartfrogs]

september is dystonia awareness month!

dystonia is a group of movement disorders that occurs when nerves in certain muscles are too active. this causes these muscles to contract involuntarily. these contractions can cause parts of the body to be held in uncomfortable positions and can cause muscle spasms.

dystonia can have a few different causes, ranging from genetic to a side effect of certain medications, like antipsychotics. depending on the cause treatment options for it can be certain medications (anticholinergics, muscle relaxants, or dopamine promoters), physical therapy, botox injections to paralyze the overactive nerves, or a combination of those treatments.

some people find sensory tricks useful to help calm their symptoms down. as an example i get muscle spasms on the right side of my face, and having something touching my head calms them down. i wear band-aids on my face due to this. the sensory tricks that someone finds useful can vary depending on the type of dystonia as well.

to help spread awareness you can wear blue during the month of september. certain landmarks and buildings in the US will be illuminated with blue lights on specific dates to raise awareness as well. you can find out the dates through this link.

you can also help out by donating to the dystonia medical research foundation if you have the funds for it. and if you're someone who has dystonia you can also sign up to be a brain donor through them.

i hope everyone has a good september!

[joeymarinostory]

My name is Carly. I am wanting to share the experiences of what my friend Joey Marino have gone through. I am also going to be going through each medication he was on, to that in reality we call it drugs. First I would like to give a biography of Joey.

He was born and raised in New Orleans, Mississippi. He was the second of four siblings. He always experienced a lot of anxiety when he was growing up. Joey always had a passion for fitness, sports and theatre. Once he reached his thirties he became a fitness fanatic. He also had moved to Los Angeles, California to fulfill his dreams when he got the call to work on the hit medical show, “ER”. He was Anthony Edwards stand in, after that he was a background orderly for the rest of the series. When that had ended, he worked on Harry’s Law and also The Crazy Ones.

Joey began to truly struggle even more so once The Crazy Ones ended. He had made the decision after trying so hard to stay in Los Angeles to move back to Mississippi where his mom lived. He had gone to the doctor and was prescribed Prozac to which he had a severe reaction to. From there is where the polydrugging started coming into play.

He was on so many different things in the ten year battle he had. It was truly so sad and disturbing to have seen all exactly had happened. He developed Akathisia, Tardive Dyskenisia, Dystonia. He had a severe movement disorder. A tic disorder, and it got to the point where he couldn’t do a ton of things on his own needing help with those who were around him.

Joey have then had moved back to Burbank, California to see about trying to find some treatment to help recover from all the pollydrugging that had happened. Joey had tried all that you could think of and nothing had worked.

He had passed away January 14th, 2024. As a close friend of his we have talked about what he would want me to do when he passed away. That was to continue to tell his story, the journey he was on the last ten years of his life. In my posts it’ll be all about each side effect he had. Each of the medication he was on and explaining so much more! Stay tuned! And please tell all your family and friends to follow my blog and my Linktree in my bio of all the other platforms!

Carly

[drchristophedelongsblog]

Lewy body disease: a complex dementia

Lewy body disease is a complex neurodegenerative disease that progressively affects cognitive function, movement and sleep. It is characterised by the presence of abnormal deposits of proteins called Lewy bodies in certain brain cells. These deposits disrupt the normal function of these cells, leading to a variety of symptoms.

What are the main symptoms of Lewy body disease?

The symptoms of Lewy body disease are varied and can change over time. Among the most common are

- Cognitive fluctuations: Intellectual abilities can vary considerably from one moment to the next, with periods of lucidity alternating with episodes of confusion or disorientation.

- Visual hallucinations: These hallucinations are often very realistic and can be frightening for the person experiencing them. They may take the form of people, animals or objects.

- Movement disorders: Similar to Parkinson's disease, movement disorders include tremors, muscle rigidity, slowness of movement (bradykinesia) and difficulty maintaining balance.

 - Sleep disorders: People with Lewy body disease often suffer from REM (rapid eye movement) sleep disorders, manifested by agitated sleep behaviour, intense nightmares or nocturnal visual hallucinations.

- Behavioural problems: Mood swings, agitation, attention problems and conduct disorders may also occur.

How is Lewy body disease diagnosed?

Diagnosing Lewy body disease can be complex, as the symptoms overlap with those of other neurodegenerative diseases such as Alzheimer's and Parkinson's disease. Diagnosis is based on a combination of :

- The patient's medical history and symptoms.

- A detailed neurological clinical examination.

- Complementary examinations such as :

o Magnetic resonance imaging (MRI): to assess the structure of the brain and rule out other possible causes.

o Positron emission tomography (PET): to visualise protein deposits in the brain.

o Biological tests: to rule out other possible causes.

 What is the treatment for Lewy body disease?

There is currently no cure for Lewy body disease. However, treatments can help to relieve certain symptoms and improve the patient's quality of life. Treatments are often tailored to each individual and may include:

- Medication to treat motor symptoms (such as levodopa for movement disorders) or cognitive problems (such as cholinesterase inhibitors).

- Psychological treatment to help patients and their families cope with the disease.

- Non-drug therapies such as physiotherapy, occupational therapy and speech therapy to maintain functional abilities.

Go further and contact

[citineurocenter]

What Are Movement Disorders? An Overview of Common Conditions

Movement disorders encompass a range of neurological conditions that impact an individual's ability to control their muscles and movements. These disorders can lead to unusual movements, tremors, stiffness, or lack of coordination. Some common movement disorders include Parkinson's disease, which is marked by tremors and rigidity; essential tremor, which causes uncontrollable shaking; dystonia, characterized by muscle contractions that result in twisting and abnormal postures; and Huntington's disease, a hereditary condition that leads to progressive motor dysfunction. Although the precise causes of these disorders can differ, many are associated with alterations in brain chemistry or damage to the brain regions that govern movement control.

If you or someone you care about is showing signs of a movement disorder, our specialized movement disorders hospital provides tailored care and advanced treatment options aimed at managing symptoms and enhancing quality of life. Our skilled team employs the latest diagnostic tools and custom treatment plans to assist patients in effectively managing their conditions.

[courtyard01]

Understanding the progression of Parkinson's disease is key to providing the right care. This blog explains the 5 stages of Parkinson's disease, from early symptoms to advanced stages. Learn how each stage affects daily life and what to expect as the condition evolves, helping caregivers and families prepare for the future with more awareness and support.

[drsandeepgoel1993]

Dr. Sandeep Goel is recognized & one of the best neurologist in Jalandhar, Punjab, India.

Welcome to NeuroCare, where excellence meets experience in neurological care. Dr. Sandeep Goel, our esteemed neurologist, boasts over 30 years of expertise in diagnosing simple and complex neuro problems.

ith over 30 years of specialized neurological care, NHS Neuro Care, led by the esteemed Dr. Sandeep Goel, the best neurologist in Jalandhar, Punjab, India, a dedicated wing of the Department of Neurology that focuses on the advanced, latest procedures and programs to achieve excellence in neurological care, including treatment for Brain, Spine Conditions, and nerve Disorders. Trust in our best neurologist, for unparalleled care in Jalandhar, Punjab, India.

For an Appointment visit: https://nhsneurocare.com/ or Call: +91 9888173033

[lillieshelpersllc]

Parkinson’s disease (PD) is a neurodegenerative disorder that affects millions of people worldwide. While there’s no cure, as a provider of home health care in Macon, Georgia, we believe that early detection and diagnosis are crucial for optimizing treatment and maximizing quality of life.

[hopkinrx]

Neurological Disorders: Unraveling the Complexities of the Nervous System

Neurological disorders are a diverse group of medical conditions that affect the nervous system, leading to various impairments in the brain and spinal cord. These conditions can range from mild to severe, causing significant challenges in daily life for affected individuals. In this comprehensive article, we will delve into the world of neurological disorders, exploring their causes, symptoms,…

[chronicallycouchbound]

PSA: Please don’t ask participants to do grounding/mindful/somatic/etc practices at your events

Grounding exercises should not be an activity in large group settings, especially unsolicited and without warning, especially if you’re not aware of every single person in the space’s mental health conditions, physical health conditions, and personal relationship to their body.

Practices such as mindfulness, grounding, somatic exercises, breathing techniques, body scans, etc. are very helpful therapeutic tools to help manage stress. They can (and do!) help plenty of people– when taught safely and used effectively!

HOWEVER for people with conditions that cause psychosis and/or dissociative conditions such as depersonalization/derealization, these techniques are contraindicated and can make their symptoms significantly worse. They should only be used with guidance from their mental health team and adapted to their needs. For people with conditions like anxiety and PTSD, being aware of breathing can trigger a trauma response or anxiety attacks.

And for people with conditions that cause chronic pain or other uncomfortable bodily sensations, becoming re-centered with their bodies can cause more awareness of the pain they are in, which a level of (ideally functional) dissociation is actually helpful. For people in wheelchairs and powerchairs, touching the ground beneath their feet isn’t always an option. For people with cardiac and pulmonary conditions, deep breathing can be impossible or can trigger asthma attacks. For disabled people in general, doing body scans can be impossible due to paralysis or limb differences. They can bring awareness to things the person wasn’t aware were wrong to begin with (which is helpful in certain spaces, but not a great ice breaker at a retreat!)

And for trans people, binders and other garments can restrict breathing, and taking repeated deep breaths while binding can cause rib damage (which is why you shouldn't bind at night, while coughing from sickness, while exercising, etc). Becoming centered in a body that makes you dysphoric can be deeply distressing, again, a level of functional dissociation helps.

This also goes for plenty of other people in marginalized bodies, such as people of color, people who use substances, queer people, and more. Becoming grounded in your own marginalized body can be a heavy weight to carry, and needs appropriate and individualized care to be a beneficial experience.

As an alternative, I suggest doing a round of gratitudes instead, it allows for people to choose their level of vulnerability in spaces, while not being generally contraindicated for many people. Doing fun (and appropriate to the setting) icebreakers are great. Ask what brings someone to the space. Check-ins about basic needs such as if people need to use the restroom, eat, drink water, are rested, etc. can be more appropriate body check-ins for folks to do.

I don’t recommend doing these exercises even with a warning beforehand. If I'm in the room while someone is leading a breathing exercise, even if I try to ignore it, I (and most people) would automatically become aware of my breathing. The same goes for any other techniques. These techniques can cause real, life-threatening levels of harm for some people, and can even just be deeply uncomfortable or distressing for others. Dissociation is not inherently evil or bad or harmful. It is the way the body and mind naturally respond to adverse experiences (note: it can also cause distress and at higher levels, can be disordered) it is best to allow people to exist as they are in communal spaces. Let people show up as they are.

Most spaces are not equipped or appropriate to respond to emergencies, difficult feelings, and all the varied responses that can come from folks doing mindfulness in group settings.

I personally do some things before large gatherings and events to feel centered on the activity I’ll be doing, and afterward, I decompress. Encourage participants to lean on their natural supports and offer suggestions for it! Be creative in your caring!

This also doesn’t mean to discourage these practices! If you see someone doing deep breathing, check in with them, offer a space for them to decompress, care for them! Worksheets or posters on techniques like square breathing and 5 senses check-ins are great for a quiet room or spaces where participants can decide if they want/are able to engage with those tools. It should be a fully consensual opt-in, rather than being forced to opt-out. Having to leave a room when a group leader says “We’re going to start a mindful breathing meditation, please feel free to leave if you have psychosis, chronic pain, or are trans” is obviously othering and outs people.

Sincerely, someone who has psychotic symptoms, dissociation, chronic pain, is trans and whose body is marginalized in many ways and is really tired from trying to explain this at every event I go to

[magnetothemagnificent]

Non-ADHD and non-autistic disabled people whose only idea of ADHD and autistic people is shaped by media depictions of a nerdy white boy or a quirky goth girl with low support needs: "Yeah ADHD and autism are destigmatized and we should ignore people with ADHD and autism in favor of real disabilities. I am very smart and progressive."

Lateral prejudice towards other disabled people will get us nowhere.

[drsandeepgoel1993]

Best Neurologist in Jalandhar Punjab India

Welcome to NeuroCare, where excellence meets experience in neurological care. Dr. Sandeep Goel, our esteemed neurologist, boasts over 30 years of expertise in diagnosing simple and complex neuro problems.

With over 30 years of specialized neurological care, NHS Neuro Care, led by the esteemed Dr. Sandeep Goel, the best neurologist in Jalandhar, Punjab, India, a dedicated wing of the Department of Neurology that focuses on the advanced, latest procedures and programs to achieve excellence in neurological care, including treatment for Brain, Spine Conditions, and nerve Disorders. Trust in our best neurologist, for unparalleled care in Jalandhar, Punjab, India.

[crippledcryptidd]

Happy Tourette syndrome awareness month

[crippleprophet]

do you have any thoughts on functional neurological disorder?

it’s one of the cruelest inventions of modern medicine.

for a bit of context on my positionality i don’t currently have an fnd diagnosis but i am at huge risk of one (my rheumatologist already thinks i have a conversion disorder) & it’s one of the many reasons i’m terrified to pursue a second neurologist after my first one dumped me. fnd is, like, maybe not the pinnacle but definitely a major player in the field of doctors gaslighting us as hard as possible & being furious every time it doesn’t work.

i’m not gonna find these articles bc it gets to a point of self harm for me to (re)read some of this shit but literally doctors are like “the more convinced patients are there’s something wrong the more they’re lying,” “the more symptoms patients have the more likely it is to be fnd and not something really wrong,” etc. again just unfathomably cruel. also the fact that mainstream medicine can unironically write that people with hypermobility are “more likely to have fnd” rather than going huh maybe there’s a neurological component here is just. what the fuck are y’all doing.

a really fun (fucked up) “i told you so” moment with the social construction of the ‘real vs fake’ tics false binary was when doctors literally can’t tell the difference based on their own bullshit criteria.

i highly recommend checking out @fndportal for incredibly insightful thoughts on a lot of these issues. sociological research on post-hysteria diagnoses & the genealogy of hysteria has also been super helpful for me although it’s obviously a very difficult history.

on a peer support level i think disability community is especially vital in the face of these kinds of psychological warfare from doctors. & to anybody who’s been diagnosed with fnd or similar conditions: i believe you. something is really wrong, it is not your fault (& it would be okay, & you’d still deserve effective compassionate care, if it was), you’re not making it up.

obviously i personally want to destroy the whole thing from the ground up, but if i could change one thing about the medical field, it’d be that it needs, desperately & urgently, to create space for not knowing. to say “something is happening here but science hasn’t caught up with it yet.” …unfortunately, to do so would be to destroy medicine from the ground up, because the whole project is predicated on the manufactured authority of knowing our bodies wholly & irrevocably, of rendering our own knowledge irrelevant at best & lies at worst.

also imo cbt, especially for a physical symptom, is evil & in situations where people can ghost their doctors rather than go i wholeheartedly support that.

[andr3yvishn3vsky]

To be honest, after years of searching, trying to find my diagnosis, I just... Stopped caring about this. I even started to like this thing, I know, it harms me, but do I want to treat it? No. It's a part of me, that I like.