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    Can I have a sentence on my forehead that I am disabled?

    Probably would not have helped and would have caused onlookers and overcautiousness. Or indifference, but that coincides with the current state of affairs.

    I'm am too slow for the current world, and I do not mean sniffing flowers and catching butterflies. The pace of our lives is getting faster and faster, what are you going to do with that 30 seconds you save on the escalator? I am about to learn that 5 minutes here, 10 minutes there and I already have 30 minutes! And then you will lose them by standing on red light.

    A true festival of speed - yes, I increase the irritation, although I do not want that. It is just a bit sad for us (the disabled) because we try to function in this difficult society, and still we get hit What we got, none of us asked for.

    Public transportation (buses, trams) is now my main means of transportation, I have to use it even though I do not really want to! A nightmare!

    The struggles start when our transport stops - the low floor is a salvation, in the higher one I have to enter using the handrail - not stand in the doorway!

    Well, and then there is the spot - if it stops at a place that is not a stop, or at the end of a long stretch, I do not get off/on.

    After closing the door almost on my back, there is a sudden movement, and in my head the thought - "grab something". In one hand the phone (after all, someone brilliant invented the need to punch an electronic ticket - disabled people - buy a monthly or cardboard card, punching these tickets is very difficult for people with limited dexterity - plus low), after punching we go, and in my head a plan for getting off. Again - if I do it too slow, the driver will close the door in front of me, and I will get off at the next one and walk home - it happened to me already.

    Well, and again - do not stand in the doorway, do not worship of the bus railings, do not lean on it.

    Nothing special - these are simply rules of good manners. And please, do not put anything ON THE MIDDLE - scooters, shopping bags. Getting off is preceded by a slalom, and if I have to hold something that someone else is already holding, I get a look full of hatred and resentment.

    Pressing the handicap button does not help - everyone looks "normal" in the mirror, so it's probably a mistake, if I had a wheelchair they would raise the platform for me, wait for me to get on and take a safe seat, and yes, you manage on your own! Well, unless you are a sprinter-surfer.

    As soon as I get off, they snort and grin at me, the ones who have to pass me, and I go even slower - because the darkness already falling in the middle of the day tugs at me even more - even the flashlight on my phone does not help.

    Shopping is also a challenge, although the beginning - walking around the store - is still acceptable. Just remember to put extra heavy stuff in a backpack or bag that can be carried on the shoulder, and do not buy too much so we can carry it. Carrying a bag in one hand - strongly unsettles the balance - two would not solve the problem - because uneven walking and bumping against it definitely disrupts the step.

    Paying - the tragedy is not with a card - cash is subject to different laws, especially coins - so throw them on your hand like an 80 year old grandmother, and the cashier takes what you need and follows…

    Wrap. That moment when the cashier pokes you in the eye because the queue, or worse, the cashier is going to checkout the next person. To avoid that, I put everything back on the basket, step aside and pack, and if I can not, I do it my way.

    I get admonished - verbally or by looks/gestures by cab drivers when I have not fastened my seatbelt yet, by people holding the elevator for me or letting me through the door, by faster people on the sidewalk, by people waiting in queue everywhere - until I pay and pack, by people asking for my signature, by people standing in transportation, by people sitting in transportation - every one of my SLOWLY actions is a problem.

    Throughout the day I have slow motion episodes quite often, and no, I do not look for them because I do not care about their presence

    Hurry up girl!

    No, practice patience and acceptance!

    All my stories are on the blog:

    #Ataxia #RareDisease #Disability #ChronicIllness

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    Faith also dies. In which god? In any god...

    Faith, views and beliefs are very individual, personal and not meant for discussion.

    So let's talk! About faith and illness.

    Everyone exhorts us to take care of our health and our bodies, as a very precious gift given to us, and any interference is an insult. Here we are in agreement.

    The difficulties arose at the moment of perception, where I have to thank, ask, beg, apologize and accept that I am not leading myself through this life...

    Evil should be pure, not powdered evil, because it is no test, gift or grace, because we are not more mature thanks to it, and it certainly does not bring us closer to it, and love triggers in us, more a sweet puppy than an incurable disease. "[...] through suffering, man can find, as it were, a new measure of his life and vocation [...]." [Ozorowski Mieczyslaw, Appreciating the value of suffering in Christianity, Studia Ecologiae et Bioethicae 2/2004, p. 753]. And let's not forget that: "one should not pray for the shortening of life in suffering, because according to Sister Lubomila Waclawek, it represents the greatest value." Value in suffering? I'll say thank you. This is suffering and that's it.

    Illness is often not only idealised, but also romanticized. Suffering and pain are happiness or punishment, which must be humbly accepted and strongly thanked for. A gift, a test, or a secret plan, a miracle! Everyone so special - the healthy less so, of course. Who among us will win this race for the best passing through a serious illness?

    Only once have I come across the view that human life has no fixed destination and consists of an eternal wandering full of sufferings from which one tries to free oneself. Eh... There is suffering everywhere.

    We should accept that there is no ultimate meaning of life, but a personal, inner meaning of being, which is to enjoy the fact of existence itself. For what we are is magic... and no one and nothing will admit the futility, and yet we search strenuously for meaning and cheap comfort.

    Free inwardly, but damaged outwardly. Calm in spirit, they die more peacefully, and yet I am gone. Everything about us is good, and what is bad is not us. Not just a player, but a fighter. A tireless fighter who never gives up. Calm and motivated. Reconciled to the unchangeable and irrevocable. And in reality? Exhausted. Frightened. Crying. Sometimes there is heroism, and sometimes there is no heroism, because things can be bad. And there is suffering, pain, and illness. And one dies.

    Let us not put the pressure of heroism on the sick, because the one who died did not lose "the battle", he decided that way or it just happened.

    All my stories are on the blog:

    #MentalHealth #RareDisease #ChronicIllness #Disability #Ataxia #Depression

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    I would like to tell you what Spinocerebellar Ataxia Type 1 has done to my body and mind...

    Peace of mind is my biggest challenge because stress, depression, fears and phobias are my best friends and all my problems seem unsolvable and incurable. The body says everything is fine, and the mind thinks otherwise. It panics and creates fatal scenarios. It dominates me, not I him.

    I bonded with a stalker and bully who whispered to me for years that she would come, until she finally came ... and dragged me down, even though I was already pretty down.

    The spirit wants more than the body can do. Physical activity depends on health, but health also depends on physical activity. Lack of coordination, balance, agility, and regret over lost activity. Limitations and changes in perspective. Lowering expectations and increasing success factors. Functionality becomes a training goal and determines future and current exercises.

    It ruined my life and put me on a losing position, deprived me of the chance to achieve my life goals, forced me to change them and focus on intellectual activities. And I helped her, too. I gave up what I was doing. For fear of losing something in the future, I lost it now. I could not go back and continue because even if the opportunities are smaller, the dreams and desires are the same. I wanted to, and I could not, but I did not know what to want either. Everything alternately and completely randomly, without any stabilization.

    I am afraid for my present and future health, my finances, my attractiveness, my loneliness, my immobility, my dependence on others and for the mess my husband is in. And I must admit that the question often goes through my mind, what to do in this life for the future...

    Accept the present. Yes, acceptance and surrender is a difficult thing because it means accepting the worst, fighting to the death and knowing that it may not do any good because no one knows what is happening in our lives and why. Acceptance and nothing else, because I will always be full of regrets and never forgive her, I only dream of not breaking down when the scales of victory tip to her side…

    All my stories are on the blog.

    #MentalHealth #RareDisease #ChronicIllness #Disability

    3 reactions
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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.’ (
    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.


    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' 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.


    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


    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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