Ataxia

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    My Story So Far #FunctionalNeurologicalDisorder #ChronicIlless #ChronicPain #FND

    It wasn’t long after my youngest son was born that things started going downhill for me physically, with a comical but harrowing experience of dislocating my hip standing up off the toilet. This event started the endless cycle of doctors trying to explain the ‘why’; that was in 2008.
    I’ve had so many diagnoses over the years that it’s laughable. Muscle strain, muscle spasms, cramping, bursitis, partial dislocations of the hip, ataxia of unknown origin, arthritis (at various times noted in the hips, knees, and back), deferred pain, mainly in the stomach (which led to so many stomach-related investigations), chronic pain, lower back pain, slipped disc, disc bulges, neurological disorders (functional gait disorder, functional neurological disorder, primary orthostatic tremor) and many more that I can’t remember.
    I have had numerous MRIs, phycological assessments, CT scans, ultrasounds, nerve conduction studies, countless blood tests, neurologist appointments, radio-frequency ablation (RFA) (over three years, was getting this treatment three times per year), installation of a spinal cord stimulator in 2021, appointments with social and mental health workers, physiotherapy, occupational therapy, massage, and natural therapies (and some that have slipped my mind). None of these treatments provided sustained absolute relief, nor pinpoints and treated all my symptoms, nor produced a holistic treatment plan or honestly extended comfort.
    I’ve been ‘unwell’ in my current state since 2015/16, so seven years of not understanding the ‘WHY’ about my chronic pain, tremors, and functional neurological disorder. Therefore I needed to focus on one avenue to ensure some kind of normality for myself and my family. I’ve focused on pain management for the past seven years, getting my first pain specialist in 2016. My logic is that with effective pain management, I can live a somewhat normal life, continue working and mask whatever is going on with painkillers. Trust me; I needed to try them all and constantly titrate the dosage as my body became tolerant. Although pain killers provide relief, they have side effects (brain fog, tiredness, and weight gain, to name a few); addiction and dependency are problems, too, with some drugs worse than others. I have gone through horrendous withdrawals that have taken me months to overcome (night terrors, night sweats, fatigue.) It’s been a constant juggle, figuring out the drug with the most negligible side effects but will target my pain effectively.
    As my symptoms look like I am drunk, I have been ridiculed, the butt of numerous jokes, and the rumour mill has been rampant about why my body movements were not ‘normal.’
    These uncontrolled body movements have caused some family members to stop talking to me because they don’t condone my drunken behaviour. Some family members believe that I have significant mental health episodes and not coping at work or any other life events that are occurring at this time (having a busy lifestyle, four children, a child with a disability, and the need to move a lot for work, travelling for work so on and on.) Although I acknowledge that friendly banter and a laugh have been good therapy, I refer to my orthostatic tremors and unusual gait as the character from star wars Jar Jar Binks. There is a fine line between a friendly joke and a hurtful unfiltered uninformed, and hurtful remark.
    For at least six years, I had been skirting around a functional neurological (FND) diagnosis. FND studies have shown there can be many triggering factors for the onset of FND, for example, a physical injury, infectious illness, a degeneration of mental health, a pain flair-up or migraines. Any of these illnesses can cause someone’s first experience of FND symptoms, and once you have your first episodes, you likely have it for life. Historically functional neurological disorders were not understood in the clinical and academic world. Until recently, this disorder is thought to only result from the uncontrolled or a manifestation of a mental health condition. FND has traditionally been viewed as an entirely psychological disorder, a theory that repressed psychological stress or trauma gets ‘converted’ into a physical symptom; therefore, FND is referenced in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) as a phycological disorder. In recent years, FND has only started to be recognised as a stand-alone neurological condition.
    Therefore I have unfortunately needed to be tested, questioned, and uncomfortably labelled as someone with a complex mental health disorder. I would not be ashamed if that were correct; however, treatment is significantly different if you treat unmanaged chronic pain as a mental health condition. Making the problem worse, many of my medications are used for mental health conditions and epilepsy. Thus when presenting to the hospital, or a new specialist, I need to reexplain my triggers and the root cause of FND. I have been using these medications for nearly seven years and constantly need to explain why I am using this medication for an alternative reason. Note: With the realisation that FND is a neurological disorder that affects the nervous system (although still not sure why), the medication is not questioned as often these days.
    The other issue with FND is that symptoms can come and go; this is a relief as I get some much-needed respite. But come on quickly and without warning at other times, and when they do, I need to retell my story and jump through all the hoops before I get the correct treatment.
    So currently, I am sitting in a hospital, day 12. We have a plan that will get me out of the hospital in the next few weeks and a plan that should stabilise my gait and have less reliance on mobility aides over the next 2-3months. I currently do 2-3hours of allied health supervised physical therapy per day, from the basics, of learning to get out of my bed and car safely, to strengthening exercises to stabilise my core and legs to extremely simplified brain exercises, where I am learning to walk again and retrain my brain in the correct movement patterns required to mobilise on my own safely.
    ‘FND, the symptoms become ‘stuck’ in a ‘pattern’ in the nervous system. That ‘pattern’ is reflected in altered brain functioning. The result is a genuine and disabling problem that the patient cannot control. Treatment aims to ‘retrain the brain’, for example, by unlearning abnormal and dysfunctional movement patterns and relearning normal movement. One way of thinking about FND is looking at it like a ‘software’ problem on a computer. The ‘hardware’ is not damaged, but there is a problem with the ‘software’, so the computer doesn’t work correctly.’ (https://rarediseases.org/rare-diseases/fnd/)
    The following steps are, for me, the scary ones; for some people with FND, the symptoms don’t go away, and some people with FND will remain in a wheelchair or need mobility assistance for the remainder of their life. This is my sixth episode in seven years, resulting in hospitalisation and an extensive rehabilitation program to retrain and rewire my brain. Honestly, I am not looking forward to the eighth, and I am searching for an avenue to slow down and reduce my flare-ups.
    Although I have had considerable relief with my pain specialist (50% reduction in pain over the past 18 months) with the addition of the spinal cord stimulator, the reduction in tremors and FND symptoms has mainly been a fluke (or a side effect.) This single method treatment method (acknowledging that I still see physiotherapy at the gym and walk 10-20km per week when I am well) can not be my golden ticket, and I need to focus on holistically more elements of my treatment.
    So the current plan is to work with a social worker at the hospital, link in OT & Physio, develop a treatment plan that will be sustainable.

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    My First Post!

    Hey. Hi! 😊
    Neurodivergent and proud ❤️
    I have a White Cane too and I am not afraid, to use it!
    Spinocerebellar Ataxia Type 27 ....
    Challenged mobily but I am a ' Glass half full' ....as opposed to 'half empty' kinda Woman. I try and most often do keep positive, regarding my inabilities and turn them into abilities IF I can...

    It's just nice to find others who share the same kind of attitude and also who find friendship while being able to be open and honest, about what affects them.

    I am a Writer, Author, Poet and Mother. I am a MASSIVE believer in the Neurodiverse Movement and encourage equality and respect in everyone, for everyone.

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    I broke. Now what do I do?

    I was seconds and inches from hitting my breaking point for far too long. I knew it was coming, just didn't know what it was going to be like. I thought I'd yell at the wrong person, or make a bad decision with ugly consequences, but no. Stressed out to the max, unable to cope, unwilling to continue on this downward spiral and fighting non-stop to hold on because there HAS to be more to life than this....

    I had a stroke. It didn't hurt and I wasn't even alarmed or concerned because I didn't realize anything bad was happening. I just felt... blank. This was 2 weeks ago now and none of my stress has diminished. It has compounded actually.

    I don't know what to do. Deep down inside, I know I'm dying. I don't want to though. I want to live long enough to at least figure out who tf to take this out on besides myself. I'd really like to know if I'm more angry... scared...or sad at my own loss. I hate that these words apply to my real life- I'm not just setting the scene for a character in one of my books.

    I don't know what to do. Please at least tell me I'm not alone. I am feeling soooo lost right now. #TraumaticBrainInjury #PTSD #Depression #CPTSD #Ataxia #PissedOff

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    Who say having a rare disease has to stop us?

    Today, I was recorded be the state department of education doing a lesson that will help future teachers. I have Spinocerebellar Ataxia Type 2. My walker isn’t in the picture but was in the video. I hope I can encourage others. Don’t give up, guys!!

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    Having FND is horrible.

    Everyday is pain and even worse than that is that the people around me seem to not even notice or get mad at me for “messing up their plans”. However, no one ever considers how I feel, as the person going through it. For the last 5 years I have felt like a shell of a person and a burden. It hurts when you can’t remember your own name or anything, but the person you remember yells at you and makes you feel worse. You know, as of it wasn’t hard enough to not know who you are or where you are. I want to be a survivor and not a victim, but everytime I get better, I just start experiencing new symptoms. I have dealt with, leg weakness, ataxia, hand locking, tics, seizures, and now amnesia….yet there’s nothing my neurologist can do for me. I feel so powerless…I feel like no one cares about me and all I do is suffer. I don’t usually just rant like this, so I apologize I just need to get this off my chest, so I can cope in a healthy way. Thanks for listening! #FunctionalNeurologicalDisorder #Depression #PsychogenicNonepilepticSeizures #tics #Anxiety #RareDisease #MightyTogether

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    Ever heard of Ataxia?

    Today is International Ataxia Awareness Day. I have Spinocerebellar Ataxia Type 2. This is a rare disease that effects balance, speech, swallowing and gives a person terrible tremors. There are many different types of Ataxia with their own symptoms. This is just what I deal with. Did I bring awareness to anyone today?? ❤️

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    When Loved Ones Aren't Supportive #PTSD #MajorDepressiveDisorder #TraumaticBrainInjury #venting

    "Heather, you're full of self pity and that's the crux of your problems".

    Is she serious? Well thank you kind soul for enlightening me about the core source of my problems. I'm sure that the doctors are wrong and I did not actually endure Traumatic Brain injury, and I do not really have PTSD, MDD, Ataxia, and Amnesia as a result of my motorcycle accident. Did they forget? Sure complained about the noise it made, and the fear it brought them when I rode my Harley. I bet their right though... I don't really have a limp now. I fake it because it's fun. And I like it when people make fun of me so I fake those things too. And who doesn't thoroughly enjoy insessant and anguishing physical pain? That's right...I probably just need to stop over-exaggerating. Oh and yes, I'm sure I do owe you an apology for my dramatic and theatrical fall. How embarrassing that must have been for you to be seen with me by all those...strangers. You know what's pathetic in my opinion? I listened to you vent about your very high-class problems, but if I vent I'm full of self pity. Here's a newsflash....last time I checked, (Mom, sibling, significant other, landlord, friend, or whoever else) I carry myself with more dignity, emotional and spiritual intellect, survival instinct, and sincere concern for how I might effect others than you will EVER know. As soon as you'd like to step into my shoes for a day, I'll welcome your criticism. Until then close your mouth or you'll start catching flies.