Aphasia

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    Question
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    How do you feel when a celebrity speaks publicly about their health?

    There are pros and cons for when someone famous comes out about a diagnosis they’re facing — no matter what it is.

    On one hand, it’s encouraging for awareness efforts — a lot more people are likely to know about a condition (for instance, when Bruce Willis disclosed his aphasia dx). But on the other, it can sometimes bring about a false sense of understanding as celebrities have access to top doctors, procedures, and medications that a lot of us non-famous people don’t have.

    Here’s a new story we published about Selena Gomez’s new documentary that details her experience with bipolar: Selena Gomez Tackles Mental Illness in 'My Mind and Me' Documentary

    Thoughts?

    #MightyMinute #ChronicPain #ChronicIllness #RareDisease #Disability #EhlersDanlosSyndrome #BipolarDisorder #MentalHealth #MultipleSclerosis

    Post

    Focus on aura-dominated migraines

    Does anyone else suffer from aura-dominated migraines? I mean where the aura is the bigger issue than the pain. I mostly get strange, disoriented vision but sometimes see zigzag lines and blind spots. The visual auras last around 20-30 mins. If I get a headache at all, it’s a mild-moderate pain in the brow bone. When the auras a bad, I sometimes get a stage of aphasia afterwards-where I can’t call words to mind or finish my sentences. That also lasts about 30 mins. Frequency is once a month at the mo but I can get 3 migraines a week and last year I had a wonderful migraine-free 5-months but, frustratingly, I can find what made the difference.
    GP has prescribed Zolmatriptan orodispersible, which does seem to help (even tho triptans are not supposed to help auras). I’ve also found Magnesium helps lessen the frequency and Co-Q10 has helped me get fewer zigzag line auras. Taking Riboflavin didn’t seem to make any difference in my case.
    #Migraine

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    Stay Positive And Laugh (Third & Final Part)

    TYPE 'O' (A.k.a. - "Wait... - what?")

    Don't believe anything you think you see. Just don't. You can't see-for-looking what's there, and you keep seeing what ain't.

    Double-takes and 'corner of the eye-itis' become your way of life on days like this. You experience exaggerated startle responses to your own shadow. The carpet, tile, and linoleum designs swirl and twist under your feet. Walls have a pulse. You can't judge distance, so you often miss the middle of the furniture and end up sitting on the arm of the chair or the carpet in front of the sofa. The tv screen needs constant adjustment because not one of your half-dozen pairs of prescription glasses solves the problem. Reading is out of the question for the same reason, compounded with the fact that your dyslexia runs rampant and the words keep sliding off the page. The word of the day is, 'vection' (The illusion of movement based only on visual input).

    Your cup endeth up on the floor because your hand-eye co-ordination is for shite.

    TYPE 'P' (A.k.a. - "The Lizard Brain")

    This is a very black & white sort of day - yes, the brain is working, but only on a very minimal level. Creativity, imagination, and even higher-function decision-making have all gone *Pouf* and you are left with the absolute basic, bottom-line functions. Hungry/thirsty. Sleep/wake. Hot/cold. Yes/no. Friend/fuckya. Other life-forms exist, but not as thinking, feeling entities, only as blurry shapes moving through your space and time. It is the purest and most absolute definition of "going through the motions".

    Your cup is just a small cylinder with no purpose.

    TYPE 'Q' (A.k.a. - "Sez which?")

    Aphasia reigns supreme. The overall ability to understand what is being said to you, and the ability to retrieve words from your own internal lexicon have disappeared completely. You know that people are speaking English only because it doesn't sound as harsh as German, as capricious as Japanese, as musical as Spanish, as sybilant as Gaelic, as guttural as Russian, or as sleazy as French. And as far as trying to form sentences yourself, good luck. Basically, your two choices are:

    1 - keep spouting the wrong words, making yourself sound insane, or

    2 - shut the hell up.

    On days like this, if you're very, very lucky, you will be able to describe the words you're trying to use, even as the words themselves completely elude you. Or, you may even be able to retrieve words that are vaguely similar to the words you're looking for. Either option just confuses and frightens people. Best to just pour yourself a lemonade and spend the day quietly with a jigsaw puzzle. Thine chalice bandeth upwards.

    TYPE 'R' (A.k.a. - "Fly; be free")

    Everything (and I do mean 'everything') that you try (and I do mean 'try') to pick up or hold on to, somehow develops and displays an ability of flight rivalling even the best Olympic high- and long-jumpers. With absolutely no visible means of locomotion, items leap out of your grasp and take to the air, flipping and spinning just for effect, and landing in the worst possible place with the most explosive possible results. Using both hands is a risky maneuver; it will either reduce the chances of losing control by half, or it will double the height and distance of the escaping item. Your cup, rather than running over, has crashed against the fridge on the other side of the kitchen.

    Stuff Worth Mentioning (A.k.a. - "Assorted sudden, temporary everyday episodes")

    Everything you set down topples or gets knocked over when you take your hand away.

    Everything's funny, lamentable, or maddening, even if it isn't.

    Some jackhole keeps turning the room upside-down.

    You wake up feeling hungover, without having been drunk.

    You keep tripping over the housepets. Even when they're up on chairs.

    The universe tells you to lie down or it will put you down.

    You don't dare attempt reading or writing. Or thinking.

    Two words: Mystery Bruises.

    You feel an almost physical sense of boredom, accompanied by a desperate need for input. Radio, stereo, t.v., computer. All at once.

    Swellings, rashes, bruises, eczemas, eruptions (and other pointless symptoms) appear and disappear, apropos of nothing.

    Temperature fluctuations (which put menopause to shame) hit you like volcanoes and icebergs. Also, droughts and floods occur.

    Migraines. Oh, my god. You pray for your head to just explode already.

    More additions to follow. Inevitably.

    ++++++++++++++++++++++++++++++++++++++++++++++++++++

    Post

    Fog

    #BrainFog
    When I read about aphasia, it sounded somewhat like my brain fog. I understand what people are saying but if I am tired I can’t come up with a response. It’s frustrating.

    Post
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    #AcquiredEpileptiformAphasia Aphasia

    My speech was very slow and at times slurred when I eventually began to speak... I just managed to utter one word it was always the same nonsensical word that was my response to everything I would substitute for everything “yes for no “for any response the right word would be waiting in my head and this silly word would exit my mouth it bore no resemblance to any word I had ever heard...so with unbelievable frustration ...so much had happened to me I couldn’t even omit a tear to at least to express how impotent I felt... and to top it all this silly word was the word was the accumulation of a lifetime of education was , *NARWAGI *but from the beginning I refused to wallow in self pity that would I knew would be self defeating. As I learned to ‘control ‘a few words I was mortified at the growling intonation in my voice this made me even more self-conscious it was misleading this was not my voice bore no resemblance . I remember taking ages to find the right word or words, and eventually a phrase disjointed and awkward something that had been so easy in the past was so now so difficult and always premeditated , then when would eventually emerge it would come out like I was in a slow motion movie ...somebody had adjusted my brain running now it was running at the wrong speed , when it did obey me it was laboured slurred or a werewolf on Valium . I felt the overwhelming urge (if only I Could) to tell people this wasn’t my ‘real voice ‘I wasn’t an alcoholic or a drug addict . Inside my head felt *hurt * Painful *Numb* all at the same time.
    so many of my neural pathways had been damaged or destroyed in my brain due to a massive haemorrhagic stroke , so finding the right words takes a lot lot longer than it did It’s in there, if you have ever had a word on the tip of your tongue and you can’t recall,imagine that feeling multiply by fifty there you have it.
    it is so much more tiring trying to find it ...Imagine the pathways are a giant conveyor belt the people are all moving fast and production is running liked a well oiled machine , so by working together they are able to complete the job effectively quickly . When you have someone has suffered Aphasia the production line is like an “I love Lucy episode “ when ‘Gladys and Lucy find themselves are under extreme pressure and quickly get out of control trying to cope by trying and keep the conveyor belt running fluidly as long as possible...So for Aphasia sufferers it’s going to take more time, time to heal ... time to relearn...time to become and a lot of patience believe me, learning to deal with condescending ignorant people probably is the most painful thing you have to deal with ..and most survivors are left suffering physical disabilities and fatigue ! But if you are determined eventually time and practice become your friend and building up stamina ....your newly tuned skill set will win the day. I can’t really explain Aphasia fully...only a piece in the huge puzzle 🧩

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    Aphasia poetry# The poetry of survival# Holocaust Memorial Day

    Here is a poem to commemorate ... today is *National Holocaust Memorial Day*...I will remember

    The star child

    With star light bliss the night is eroded,
    Digging into the turbulent ice
    Amidst glazed reflections and corroded shadows.

    The snowy fragrance entraps
    The unruly trauma under
    The translucent fingers of ice.

    The child sits not moving,
    The clothes sculptured into
    Pristine form around
    Her silent, frozen body.

    Ssh, the Star Child sleeps,
    No need for movement or agitation .
    Precious cargo, with the smell of
    Sweet clotting blood within her veins.

    The angel with celestial love approaches,
    Arms outstretched she sweeps up the star child
    With a warm kiss that stuns the transient
    Soul back into existence
    the star child finds immortal love and peace .

    Yvonne Kent Pateras
    Poetry of survival

    Question
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    How do you handle the stress that comes with caring for an aging parent?

    Hi there! To all my caregivers of aging parents out there, how do you handle any potential stress that arises?

    For background info: I'm a caregiver to my aging parent who had a fall in April 2020, and now we're navigating life post-fall and all that comes with it.

    She struggles with aphasia that comes and goes – particularly when she's stressed – and when she's stressed she sometimes lashes out without realizing it at the time. I drive her to appointments, have taken over the finances (except for the cable bill, which she pays herself), order groceries, and so on. She's still able to cook and clean, because goodness knows if I try to clean the shared spaces I'll do it "wrong" and she'll sass me (LOL).

    It's still very stressful at times (for lack of better wording) and I'm at a loss for how to de-stress. I barely have time for "me" time, as it is.

    If you're a caregiver of an aging parent, share your tips on how you manage your stress in the comments below. ❤️

    #Caregiving #CheckInWithMe #Selfcare