neurology

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    Navigating International Womens Day 🧭

    Attention: European friends! Please share 🤗

    Despite the higher prevalence rate in women than in men of many neurological disorders (e.g. ADHD, multiple sclerosis, migraine, Alzheimer’s disease), gender stereotypes can have a negative impact, leading to underdiagnosis, misdiagnosis and delayed treatment. Furthermore, while women experience neurological disorders differently to men (symptomatic profile, pace of progression and effectiveness of medication), women are often excluded from research.

    In addition to the experience of the patient, the majority of informal caregiving roles are occupied by women who are also burdened by the gender divide.

    This survey has been developed with the aim of identifying, reporting and beginning to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway. Data generated through this survey can be used to address the unmet needs and challenges facing all affected by neurological conditions.

    The survey is open to anyone over the age of 18 who is living with a neurological disorder, or who is carer to someone living with a neurological disorder, that resides in Europe.

    The survey can be accessed at
    www.surveymonkey.com/r/JQW27L2
    from March 8th.

    Deadline for completion of the survey is Tuesday, April 19th.

    #InternationalWomensDay2022 #womensupportingwomen #womensday2022 #ADHD #Migraine #neurology #nd #neurodivergent #Europe

    @ADHD-Women ADHD, ASC & LD Belgium

    1 person is talking about this
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    Community Voices

    This pic of my cat, Buby, pretty much sums up how I'm feeling lately...

    <p>This pic of my cat, Buby, pretty much sums up how I'm feeling lately...</p>
    4 people are talking about this
    Community Voices

    Eating Problems, Mental Health and Physical Conditions Clash

    TRIGGER WARNING, Eating Disorders, PTSD, Flashbacks and Mental Health Recovery are all mentioned.

    So, I have cerebral palsy. It is mild, but I still can definitely struggle with my mobility quite frequently. Before my recent relapse, I was struggling with headaches to the point in which my consultant prescribed me Tramadol and referred me to neurology. Of course, my recent relapse has made this worse.

    Not only have I relapsed in terms of my eating, which I have been doing incredibly well with since February, I have also fallen back in terms of my frequency in incidents of self harm.
    The main reason I will apply and offer my understanding to all of this is issues surrounding my family. Although I am surrounded by people across various social media sites and also in the rehabilitation unit I currently live in, I just kind of feel alone. I put this down to a serious lack of acknowledgement or accountability from my family as to why my current mental health team believe that I have PTSD or CPTSD (to be specific). I had a massive falling out with all three of my family members that I lived with before being admitted into hospital this year and now I feel like I have been dropped.

    I have also found out this week that I will not be coming off my section, and will remain in hospital against my own will (it has now been a year and a half).

    This all has caused a huge knock back in terms of my recovery with both using self-harm as a way of coping and also a lack of self care, mainly eating.

    I am writing about this, because part of what makes me so incredibly self-conscious about my body and appearance is the fact that I have cerebral palsy. Not only this, but it has been worsening in the last few months, hence my new referral to orthopaedics.
    Not only does having a clear physical difficulty make me much more self-aware of my body and how I look, it also means that when I do lose a significant amount of weight due to my mental health struggles, it means that I cause a lot more pain to myself, as my muscles are being worn away as my weight plummets. I can't believe how incredibly negative I sound, but I feel like here I can truly be myself. No hiding, like I do on Instagram and Facebook and whatever else. This is more of a diary to me.

    #chronic dizziness #ChronicPain #CerebralPalsy #Headaches #neurology #ChronicHeadaches   #EatingDisorders  #AnorexiaNervosa #Recovery   #recoveryisnotlinear   #Disability  #ChronicFatigue #MentalHealth #PTSD   #Depression  #dissociativeamnesia  #dissociativedisorders

    3 people are talking about this
    Community Voices

    😁TBI & It's Fun Inner-Ear Sound Effects!

    Honestly, I love the nature sounds my TBI left me with so far! Cardinals were always my favorite bird anyway so I often feel one is near me over my shoulder, and I do like the ocean a lot too! Wonderful sounds of God's creation that no one else around me is hearing yet I can visualize it, and that helps calm me. Lately? It's been a field of crickets on a early Summers night:) That sound helped me feel warm in my bed in the dead of last Winter and it's still going strong. Cozy!
    I'm an inquisitive person, so I wonder if in my upcoming neurology visit if I can invite my Neurologist to hold a stethoscope to my ear to see if he can hear these sounds too for himself?? They're too pleasant to not share with others, plus I want to know if it's possible!😁 #neurology #TraumaticBrainInjury #Seizures #ComplexPosttraumaticStressDisorder

    4 people are talking about this
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    Venting reality & acceptance of my disability and injuries:

    I was hoping to heal by now but, nope, but I was often good at denial before. I feel like 'Frankenpatient' when I see my neurologist (I fell and he caught me in consultation, as if baby's first steps), as if I'm a toy from the land of misfits or one of those grotesque, mutilated toys that crawled from beneath that terroristic neighbor-kid's bed long ago on "Toy Story" (friendly but creepy, so you wouldn't know it at first). So, with this throbbing pain and strange bodily cracking noises, continual seizures, multiple brain injuries, etc (my list is long), I'm accepting my limitations because its slowed me down. I'm an active person. I like to be. Sigh. This is not the way I want it. The good side is that its making me appreciate what's important, and understand clearly what I always wanted to, love and trust more like I wanted (the ones I should) and set boundaries with those I should have...God answers many prayers every day like I always wanted to. He always was as His child in Christ Jesus. Acceptance is making me feel better. It helps me work through CPTSD, too. I'm not wearing out as much as I did when I 'kicked against' things/emotions so much, nor am I afraid as much, but accepting things so I can reroute to something realistic and make actual choices, move forward. The path of least resistance. Truth is I AM worn out already but this feels better now and I'm noticing growth this way. God is faithful:) #BrainInjury #Seizure #neurology #ComplexPosttraumaticStressDisorder

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    Community Voices

    Chronic Back Pain

    Anyone with chronic back pain ever experienced this before? I have felt like my spine has been compressed too tightly. it’s been causing me severe pain. maybe a 8/10. it’s also making me feel ill. I thought maybe I was about to have diarrhea, and I had to hop off the toilet to puke. after I puked I felt better, but the back pain still existed. it was shooting up and down the spine. I learned a new stretch where I leaned over as if to touch the floor with my legs apart. I started to swing up and down gently but with pressure, and I was able to pop my entire spine from the bottom up like butter. it was amazing. so try that if you’re feeling too much pressure. I couldn’t sit still. been using ice. went to the chiropractor and got and adjustment. I barely made it there because I felt so dizzy. he did neck traction involving the pulling of the neck horizontally to my body. it felt like my neck had someone been stuffed into my torso, and he pulled it out and straightened the spine out. it felt so good, but it was shocking. I drove home and had a rough time because I started feeling sick again. Got home and went to the toilet. thought I might poo, but I had to hop off again to puke. what is going on? I have severe nerve pain, so is it related? this is getting old. 5 years and counting. #BackPain #ChronicPain #chiropractic #neurology #helpme #CheckInWithMe

    13 people are talking about this
    Community Voices

    Looking for some help... #Diagnosis

    I know it’s more of a book than a post, but I NEED SOME HELP!

    Can anybody relate or have input to theses symptoms/issues? I’m so frustrated that I just want to cry. I feel like all I’m doing is treating symptoms & yet never really getting to the bottom of what is really going on. I did have a bad head injury, and yes some of the cognitive issues started then. (CT/MRIs come back inconclusive or unremarkable) I feel like Drs hear head injury and use that as a way to explain ALL symptoms. I’ve been dealing with more of the symptoms prior to the head injury than the ones that came after. I’m looking for any thoughts or suggestions. I’m ready to live my life again. Sorry it’s a bit long, but I’m desperate for help.

    Here is a list of symptoms that have been going on and getting worse for 5+ years...

    -Extreme fatigue (some days are really bad others manageable.
    -Cronic pain in joints/muscles (especially joints in from core down, behind my knees, hands and large muscles)
    -Multiple types of seizures
    -Stomach/Digestion issues
    -Memory loss / retention
    -Amnesias /Blackouts
    -Lack of coordination
    -Speech issues
    -Trouble with fine motor skills
    -Pins & needles
    -Numbness in lower limbs and sometimes hands and face
    -Difficulty walking/Gait abnormalities (to the extent of having to use crutches or chair)
    -Constant muscle spasms -Tremors
    -Sensitive to over stimulation
    -Vit D & Iron deficiency

    Mental health battles
    (I do have a great therapist)
    -Major depression
    -Anxiety
    -Complex PTSD
    -Anorexia (remission)

    History of
    -Asult/Abuse starting in childhood, repeated traumas abuse/trauma as adult
    -Sleep issues
    -Major Kidney infection (about the same time some of symptoms started)
    -Head injuries
    -One major head trauma (some symptoms started from that, but not all)
    -MTHFR genetic mutation
    -Uterine cancer _Historectomy
    -Unexplained & complete gallbladder failure
    -I build up a tolerance to medications, vitamins, OTC meds and anesthesia abnormally fast. I have woken up during multiple surgeries (NOT COOL 😬😧)

    That’s all I can think of right now, and I’m just exhausted thinking about it all.
    Like I said, I’m open to any of your thoughts, questions and suggestions. (or even just a little encouragement. I could really use it right now)

    Thank you for taking your time to read my post and letting me get real with you. You have been such a amazing support group and I am so blessed by it!

    Liz

    #RareDisease
    #Diagnosis #MentalHealth #HeadInjury #symptoms #help #AnxietyDisorders #neurology #Disorder

    17 people are talking about this
    Community Voices

    How do you feel when doctors doubt how ill you are?

    #ChronicIllness #ChronicPain #SpinalCSFLeak #CerebrospinalFluidLeak #RareDisease #neurology #HeadInjury #PostconcussionSyndrome #Headache #Depression #Anxiety #SuicidalThoughts

    I fell off a ladder nearly exactly 5 years ago. I was diagnosed with a concussion, then post-concussion syndrome, then after 8 weeks correctly with a spinal CSF leak. I have been unwell since - with ups and downs. Cycling being pretty much bedridden for weeks or months then upright all day following treatment... and then everything in between that.

    But never ‘well’ or ‘normal’

    My medical journey has been really really tough. The battles of TRYING to explain how ill you feel to doctors and medical professionals are exhausting and brutal on your mental health.

    This is a long extract from an article I wrote to try and process some of the trauma of my own medical journey following up from some stuff that came up from counselling to try and work through very complex and traumatic memories and emotions after another physical and mental health crash in the Spring!

    How Doctors Can Help Chronically Ill Patients Feel Less Vulnerable

    I wrote it as an ‘open letter’ to try and explain to doctors that we often feel so vulnerable and exposed it’s like we feel completely ‘naked’ in front of them - when having to see them or go into hospital.

    How do you feel when you have to see doctors - especially when they don’t really understand the complexity of your physical or mental health conditions?

    21 people are talking about this
    Community Voices

    Happy Holidays! - What can’t you wait to eat?

    <p>Happy Holidays! - What can’t you wait to eat?</p>
    5 people are talking about this