Ataxia

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Shadow boxing mis-hap #Fitness #adaptiveboxing #Ataxia

So…I’m nerding & refining my adaptive boxing routine…I’m experimenting with mirror work because you can’t see yourself punching

I’m thinking I’m gonna look muscular (OK forget that I have 2 coats on…this is how my thinking works) with 3 boxing classes and practice.

I don’t have a ring camera or anything so I was like “Let me just try it.”

So I start with the PunchLab & Heavy Bag Pro app…I hit “Record” on the iPhone…

Self-conscious but I do 1 or 2 rounds

Feeling a little confident, I get some of the food (I’m bulking so I keep food around).

I bend down for something….Somehow my other arm hit a fork perfectly so that it could last whiplash spaghetti on the side of my face

This startled my brain, ego, and spirit.

Welcome to life! 🤣

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I'm new here!

Hi, my name is CosyMariposa0517. I'm here because I like meeting others who have what I have because I don't know many who have the illness that I do.

#MightyTogether #Migraine #Fibromyalgia #Crohn 'sDisease#Dystonia #Ataxia #COPD #FunctionalNeurologicalDisorder #Asthma

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So tired of not knowing

Hi! My name is Chris
I’m 53, will be 54 in December and back in April I suffered from a stroke. I’ve had a lot of tests done bc I experience seizure like episodes that scare me but so far no doctor can figure out why this happens. MS, Lou Gehrigs, and Epilepsy have all been ruled out. One Neuro said I may possibly have #Ataxia or #FND (Functional Neurological Disorder). What I’ve read about these disorders so far tells me these are rare neurological disorders and I guess I came here hoping to find some answers
Thanks for reading this 🙏🏻

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Ataxia diagnosis earlier this year.

I was glad to have a diagnosis but as of yet it is idiopathic. I look back and think it started well before I originally thought, but with issues that overlap with other health issues it's difficult to pinpoint what contributes which illness. I'd like to hear others experience.
#AtaxiasAndCerebellarOrSpinocerebellarDegeneration

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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.

#MightyTogether

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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 caregiving.org), 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

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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.

Strongly.

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: petiteem.pl

#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: petiteem.pl

#Ataxia #MentalHealth #RareDisease #Disability #ChronicIllness

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