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I’m new here!

Hi, my name is Betty. I'm here because I discovered the app and want to find out what it’s all about. I am a carrier of a genetic disorder called Fragile X which can cause mild autistic traits, early menopause, neuropathy and ataxia in later life. I’m a founder / social entrepreneur / business coach and mentor.

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I'm new here!

Hi, my name is Deeismywife29. I'm here because I have the neurological genetic disorder called spinocerebellar ataxia type 6 or SCA6 for short.


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My Christmas tradition#ChronicPain #Disability #Ataxia

I have my own Christmas tradition. Every year at Christmas time, I order a pizza online and leave a $20.00 tip.
Whomever happens to be the delivery person, gets a nice tip at a time when we all could use a little extra money.
It's just my way of paying forward what has so graciously been given to me.

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Lessons from a Service Husband

Part 1 of 2 As caregivers, our lives of service are trying. We give and give until we think we can’t give any more, then we keep on giving. It seems impossible at times, but, for the estimated 53 million family caregivers in this country (according to, it’s all worthwhile because we’re caring for a fellow human being in need, helping a person we love have the best life they can have under the circumstances.

Caregiving is relentlessly hard work and it can take a steep toll on the body, mind, heart and spirit. If we don’t take good care of ourselves, we can’t take good care of our loved ones. It’s that simple. It’s always a dance between their needs and ours. How much do I give? How much can I give? How much should I give? The trouble is, we don’t always have a choice in the matter. Often we are the only one around and, so if our caree needs our help, we help. We do what must be done, even when we feel worn out or used up. I’ve known caregivers who are lucky to carve out half an hour a week for themselves. That is not sustainable, and it can even be fatal. Some 30 percent of all caregivers die before the person they’re caring for.

I was caregiver for my late wife, Alice, for 20 years. When I met her, she was using a walking stick. A month later, she nearly fell down some stairs. I jokingly asked if she was drunk. “No,” she said, hesitating. “I have a rare, neuromuscular disease called spinocerebellar ataxia type 3.” It was her “family disease.” Nearly all her relatives had, have or will have it. Her grandmother died from SCA-3 at 62, her mother at 60. If I wanted to be with this woman I loved, I had to accept both her and her disease.

It wasn’t hard at first. Alice could still teach college, still drive, write, paint, travel, live a full life. Two years later, though, she fell in our living room and broke her leg. Things went south fast after that. She got a service dog, which helped when she dropped things. She started using a walker, which helped with her balance. But she kept falling and breaking things more often, including bones. In time, she had to quit her job, stop driving and start using a wheelchair. My job as caregiver got more and more demanding. Alice tested me as I’d never been tested before. There were days when I thought I might become one of those millions of people who suffer death-by-caregiving.

Like many in my position, I had my own physical issues. I had suffered a spinal injury at age 12, developed osteoarthritis at 40 and had had multiple surgeries on hips, knees and feet. Caregiving exacerbated my injuries in ways that often required chiropractic visits, physical therapy and other treatments just to keep going. I got so stressed out at one point that I vomited blood. On another occasion, I had to be airlifted and hospitalized after a transient global amnesia event. I fought the occasional urge to drive off a cliff or into oncoming traffic. I sometimes feared I would tumble into the abyss of exhaustion and despair and never return. But love always called me back from the brink and empowered me to carry on. My beloved loved and needed me, and I loved and needed her.

Yes, I was just as dependent on Alice as she was on me. She was my lover, partner, wife, collaborator and best friend. As disheartening as it was to watch her lose her mobility and many of her abilities and gifts, serving Alice was my school of hard knocks, my way of learning some of the toughest lessons we humans can learn, lessons we must learn if we are to shoulder the mantle of caregiving. Chief among those lessons is compassion, for without compassion there can be no caring.

We tend to learn those lessons the only way they can be learned: the hard way. They’re lessons all of us must learn, though. As former First Lady Roslyn Carter famously said, there are four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. When we are placed in a position of caring for another person, we don’t set out to intentionally sacrifice our time, energy, personal health or ambitions. No one wants to quit their job so they can stay home and work for free. No one wants to be pushed to—or sometimes beyond—the limits of what we think we can endure. Most of us do not willingly put ourselves in situations in which we are likely to be under-appreciated, criticized, verbally (and/or physically) abused, or emotionally and physically exhausted on a daily basis. Unless we’re masochists or paid caregivers, most of us would never submit to such treatment from anyone other than a loved one. But that’s what many caregivers must do.

When it was no longer safe for me to leave Alice home alone, I started a tutoring company that I could run out of my home office. Business dried up d


What do I want?

Health is such an obvious desire that it is not on the dream list. You wish for something that will improve life, not life itself... Unrealistic wishes, unfortunately, do exist. They come true, appear and die accidentally.

No, we have no influence on them. Yes, we have influence on them.

In any case, let us try to see how it turns out. None of us is special enough to be spared from fate, and yet we create the image of a miracle in our minds and believe that for some unknown reason everything will turn out well.

There is a known case of someone with this or that disease... And each of us wishes to be such a case. To achieve the impossible.

I am afraid that "nihil novi sub sole" and we will not live happily ever after.

Yes, we will.

It just needs to be worked on.


To live happily, though not necessarily for long, because not every healthy life is good. Being happy is enough, everything else will fall into place.

Fiction can save reality. Save or poison? Dreams fight against the realism that turns them into fictions... and although they often fight, they make a truce, because that is the only way they can find their way in this new reality. I begin by looking back at the dreams that were created in healthier times. I desperately raise their importance and do not want to give them up because they are useless and contradict the current need. I keep them, all of them! A transformed life is enough, let the dreams be the same.

I want my life to be the same. I want my person ALWAYS to overcome the disease, and for that to happen, I have to give it priority:

Sports. But how? A disabled person who is athletic? A dream invented by the healthy and realized by the sick. It may be difficult, but I want in my life at least a part of the world that belongs to this "healthy part", to focus not only on smooth walking, easy swallowing and precise grasping. Six-pack and big muscles.

Versatility in physical fitness. Functional training, so that you have enough strength for the basic activities of everyday life, and if you train your muscles in the process... Versatile training, with different sports, not only physiotherapy. Physical activity was present in my healthy life, it will be in my sick life too!

The strength developed can be used in many ways. My idea is persistence, so that the time you are active exceeds the time you are not active, because you have to do what you need, not what you want. I am driven by necessity.

More stories on my blog:

#Ataxia #RareDisease #MentalHealth #Disability

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Can I have self-confidence despite having a disability?

I have a disability, and sometimes it shows. Everyone reacts differently to me. Over time, that will become clearer, and the issue of dealing with comments from strangers is my next level of acceptance. More obvious - that means more people will notice and wonder what's wrong with her. Also, some people have to accept my acceptance because in their opinion I create the wrong VISUALITY by using the word: - sick - or I am too positive, and yet - it is not appropriate. They nod falsely, accept and tolerate because a person is a good friend or a family member.

Let her think that she can.

We will only be civilized by law, we would have had the ancient throwing of the disabled off rocks or the medieval sending them to the streets long ago, not so long ago the Third Reich exterminated the disabled. As a holder of a genetic disease, I would have been perhaps - just - sterilized at a later stage I would probably have been euthanized, which was performed at the time as Operation T-4 on ⅓ of those in institutions for the sick. Despite the fact that we realize that a strong society is a prerequisite for survival and we do not tolerate weakness, unfortunately, the point of view...

Fear of being inferior at the inability to fulfill established social roles. We are ashamed, although we shouldn't be, because after all, no one was affected. Sick people underestimate their worth and have many complexes, often by not being able to defend themselves or complain they are attacked - outside the family violence is used by about 40%, in the family-20%. Shame occurs when we do not meet some criteria. We hurt ourselves: physically and mentally. Selfishness and an unearthly sense of worth that translates into self-confidence help. I am inclined to admit that it plays a key role. In order to win, sick people need values - valuable skills. Yes, yes, I know that EVERYONE has value and is a great person, but that is not what I mean here.

Comparisons cannot be avoided, even if we know we should avoid them. Don't lament because others have it worse - but also remember not to rejoice because others have it better.

We will not avoid it.

We with them, they with us, they with them, indeed everyone with everyone. We compare and decide. We win the duel if we activate positive egoism - this does not exclude empathy, but remember that the world and nature have instructed humans to care mainly for himself - and add the value mentioned above. It's a skill that is universal enough to prevail in most comparisons - as despicable as that sounds. We emphasize what we have, not what we lack.

We level the damage in appearance. ALWAYS! To be attractive and well-groomed for a certain moment.

Nevertheless, not because of it.

Live with a pinch of selfishness, because the world is not at all modern and tolerant - visit the Polish countryside.

More stories on my blog:

#Ataxia #MentalHealth #RareDisease #Disability #ChronicIllness

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Disability is not an inspiration in itself, but can motivate!

The topic of motivation will never lose its relevance, and there are as many solutions to lack of desire - or even more - as there are people struggling with it, because only 1% of the population is self-actualized.

"You can do anything," with its popularity, becomes a worthy opponent, one of the worst possible phrase, namely, "It will be okay." Statement so hated because it is empty and each of us has experienced something that no one else will understand. I know what I can do and how it will be.

Despite the fact that motivation is reserved for dreams and desires rather than biological needs, it is REQUIRED. The lack is judged harshly by a society that sleeps poorly, eats poorly and does not exercise, where almost 30% of Poles have insufficient physical activity, because after all - "How can you not take care of your health like that!" - and - "They would save themselves. Well, how can you!"

We know what not taking care leads to - our head is full of remorse - well and all in all, if you do not do anything, you can not complain, can you? It's not - only - idleness, but also the feeling that we are not trying hard enough, because if only... even if the right amount of effort is unknown.

We do not want to turn motivation into obligation - a feeling that we MUST want to do something. There is no human being who is always ready to act. Many want to motivate us, unfortunately it depends solely on our own attitudes and thoughts to act. Strong autonomy and inner needs, rather than a duty imposed from above. Act. That's right, motivation is a marketing trick to make laziness look good, because it is after all, an action, not a desire. A symptom, not a problem. Force yourself to work, and that's it. Do what you have to do because you have to do it.

Passivity is laziness, not lack of inspiration, because what do you call the fact that we WANT to act but do nothing? Well, yes, quite frankly. A conversation is enough to find out what we need at the moment, if we tell untruths or avoid them, who will lose out?

No one is immune to laziness, even if we try to hide it with lack of time, fatigue, lack of strength, a very strong respect for our own time, which we don't want to waste - because we don't have it - or downgrading the value of the planned activity - because there are more important things to do. The solution?

Hard work.

Even if you don't feel like it

Even if you start from scratch.

Even when others are already there.

Even if you don't make it 100%.

Don't even try to blame in on motivation!

#MentalHealth #Depression #Ataxia #Disability

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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

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