Neurologic Diseases: Can They Happen To You? Some Facts About How Society Should Be Dealing With Them

We drift away throughout our lives, trying to please others or our own expectations built upon what we learned that society expects of us. This is not an obvious thing for many, but it pops out when you go through a major setback that makes you review your whole life plan.

We are so anchored in what other people might say of us, in the fear of being treated like an outsider, in that feeling that we might one day be rejected. We do things because it’s been done before, because that’s what people around us or people our age do.

We work ourselves up to put up with an external standard that a lot of times seems so alien to us. This gets revealed to us in the most unexpected ways, but most of the times if comes out as rebellion, frustration or a lack of purpose.

Although we live pretty busy and full lives, something is missing. We get the feeling that something is not quite as it’s supposed to be. Most of us live our whole lives and still don’t find out what that thing is. Hence the disbelief in things like “find your purpose!”, “unleash your potential!”. These are strange things to say when we live pretty decent and fullfilling lives.

But that’s the trick! How much of these decent and fulfilling lives do we really enjoy? How much of these daily activities really make us feel like it’s worth something?

You might be familiar with the feeling you get when you help someone just because he or she needed it. Or when you take the time to listen to a friend who has a major problem and just be there, ready with a kind word and a hug. These type of moments have the power to make you feel at peace. You get that feeling that you’ve done the right thing. Now take that feeling and pass it through each and every activity you do throughout your day. See how that feels. Do you get the same results? Do you feel the same? It’s ok if you don’t. Many people find themselves in the same situation.

Society educates us to be good members of it. It teaches us how to behave, what to believe and what not to do. In order to fit in. And except a few things that spice us up and that we call personality, all that we have is society-crafted.

We are promised a rich life, full of possibilities, products and chances. But is when we face losing all of these things that we get a taste of what society really does. It selects only the useful and productive individuals and discards the others that don’t fit the pattern.

People with chronic neurological illnessess are clearly not fitting that pattern. They become a liability for the social system.

Let’s get a few concepts straight.

What are neurological diseases?

A quote from the World Health Organization explains it all:


“Neurological disorders are diseases of the central and peripheral nervous system. In other words, the brain, spinal cord, cranial nerves, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction, and muscles. These disorders include epilepsy, Alzheimer disease and other dementias, cerebrovascular diseases including stroke, migraine and other headache disorders, multiple sclerosis, Parkinson's disease, neuroinfections, brain tumours, traumatic disorders of the nervous system such as brain trauma, and neurological disorders as a result of malnutrition.
Mental disorders, on the other hand, are "psychiatric illnesses" or diseases which appear primarily as abnormalities of thought, feeling or behaviour, producing either distress or impairment of function.
Hundreds of millions of people worldwide are affected by neurological disorders. Approximately 6.2 million people die because of stroke each year; over 80% of deaths take place in low- and middle-income countries. More than 50 million people have epilepsy worldwide. It is estimated that there are globally 35.6 million people with dementia with 7.7 million new cases every year - Alzheimer's disease is the most common cause of dementia and may contribute to 60–70% of cases. The prevalence of migraine is more than 10% worldwide.”



Dissabilities mean costs, and society has a sore spot for that. And not just only that, but the actual cost for a business that employs a dissabled person looks to be in danger in this situation.

But they have it all wrong! There is an actual bigger cost if you put people on wellfare instead of helping and accommodating them to keep their jobs or make a living fo themselves. Think about all the people that have to financially sustain a dissability cost through their monthly tax contribution. Think about the actual costs of the dissabled person: medical care, facillities and money to help that person pull through life. That cost is actually adding up to be higher than allowing dissabled people to keep working or open their own business.


“Workplace interventions can lead to large gains, both in the short and long term, for employees and employers. Improvements can be seen in worker productivity, reduced levels of absenteeism, and employer cost-saving. These interventions have the added benefit of creating a workplace environment that is health-conscious, providing for easier follow-up with participants.”


(read full WHO.int report here)



Because, let me tell you: people don’t change at all after getting a neurological chronic illness. Neither after they actually get disabled. Ok, they might be a little more changed, but those differences are just emotional, the intellect of that person doesn’t get affected in all diseases. There are a few exceptions, like Alzheimer’s, dementia and so on, but what about the rest?

How can you tell a person that has been working all his or her’s life to be independent and to make a career that you have no place for him or her now that he/she’s ill? How is that fair?

Society runs away from difficult situations. It prefers to be a functional machine that keeps the system into place for as long as it can. But if you throw away people who have chronic illnesses, as a society, you’ll end up with more spare parts than an actual functional machine. You’ll get broken. You’ll stop working.

These people might not be the thing that you need or are used to, but with the number of chronically diagnosed people getting higher as the years come by, we’re facing a real problem of not being able to live a sustainable life as a society anymore.


“The health of the world is generally improving, with fewer people dying from infectious diseases and therefore in many cases living long enough to develop chronic diseases. Increases in the causes of chronic diseases, including unhealthy diet, physical inactivity and tobacco use are leading to people developing chronic diseases at younger ages in the increasingly urban environments of low and middle income countries. Disturbing evidence of this impact in many of these countries is steadily growing. They are ill equipped to handle the demands for care and treatment that chronic diseases place on their health systems and so people die at younger ages than in high income countries.” 


(read full WHO.int report here)


So what’s there to do? Accept. Adapt. Overcome.

Accept that we have this situation. It has been a public health challenge since 10 years ago. Adapt the social system to it. Overcome the future societal disfunctionality.

Avoid the day when you’ll find yourself in the same situation. It’s uncomfortable, I know! But little did I know almost two years ago when I was happily working in sales that it will all change as I got diagnosed with multiple sclerosis.

Although it’s not an easy thing to go through, because of all the possible stigmatization and rejections you might face (among other things), it helped me to see the bigger picture.

I’m sure the fact of being a licenced sociologist helped with analyzing society, but it was the emotional part that did the trick. It’s awful to feel like society doesn’t really care about any of us. It’s an eye opener that we are our own safety nets. In the end, relationships are all we have. And in the most desperate cases, even these ones fail, and people are left behind. Are discarded. Just because we don’t teach people about these conditions, their implications and how to manage them.

How did the world become such an awful place to live in? We have expressions like “survival of the fittest” and “the law of nature” to describe the natural selection on which nature thrives.

But what happens when the fittest is not you because you get a dissabling disease? What happens when the law of nature gets you in a wheelchair? Does the world seem fair and just then? Are those beliefs doing you justice?

We must understand that although the strongest are the ones who survive, we are human beings which have a heart and feelings. Helping people to have a chance, to reintegrate them back in the social system or to keep them there for as long as possible is the honorable thing to do.

I’m gonna stop this article now, before my eyes get all blurry because of my tears.

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Until next time, make the SMart Choices that suit your lifestyle!

Love,

Alexandra

Food, Exercise and Rest. Improve Your Brain Health and Get Stronger to Fight MS

Today’s article is centered on a topic that has been part of my MS management strategy since the month of being diagnosed. It’s the first thing that came to mind: how can I take care of my body in order to minimize the possible effects this condition might have on me at some point.

It might seem like common sense to eat well, get your body moving and having a good night’s sleep, but in dealing with MS, they become crucial, as your body is attacking itself and needs all the help that it can receive in order to have a chance to fight back.


MS is primarily or at its early stages an inflammatory disease. To me it makes a lot of sense to do your best to reduce that inflammatory state. All these three elements are potent inflammation fighters, if used right and on a regular basis.


FOOD

Our bodies constantly renew cells, giving us new tissues, organs and a whole new body in just a few years. This is why what we eat it crucial to our health. 

Imagine your body as a dirty glass, the dirt in it being all the junk and processed foods we have, all the toxins and damage done by intestinal inflammatory processes throughout our lives. And now imagine opening the faucet and letting fresh water pour over the glass. What happens? At first, nothing much, the water fills the cup and then overflows. But if you let it on, the dirt will finally clean away, it will melt and let the glass cleaner. Not entirely clean, there will be harder bits remaining (scars), but you’ll end up with a clearer vessel. 

Eating healthy foods and as little processed or cooked as possible will get you similar results. Stick to it, make it part of your identity. Train to battle MS.

EXERCISE

Exercise is another must-do when your body faces getting weaker. Long story short: MS aims to get us totally paralized. There! I’ve said it! It gives me chills everytime I think or say it, but it is a fear I understood I must face from this year onwards. It has been at the back of my mind for a while now. But you know what they say about your “enemies”: keep them closer than your “friends”. And this year I will do just that: face my fears, say them out loud.

It’s the same thing as when my mother and I took our first airplane flight together. It was a first for the both of us, but she was more scared than I was. I don’t know exactly why, but heights don’t scare me. Not being in control does. So, she was so anxious about turbulences and getting safe to our destination and although I tried to calm her down, she had her fears. So I decided to say her (our) fear out loud: “What is the worst thing that could happen? The airplane falls down and we die. That’s it! Can we prevent it? Can we do something about it? Then why bother? Worrying is of no help. Just enjoy the ride!”. She looked surprised and a bit shocked, but in the end she agreed with me.

Likewise, what is the worse that can happen with MS? You can become paralyzed, have major pain or die. Can you prevent it? Can you control it? Can you do something about it? No, but you can make the ride the best it can possibly be. The ride is your life and you can help yourself by moving your body. Do whatever you can do. 

We all have different capabilities and MS affects us in different ways. There are MSers who do thriathlons and others who are bed bound. There are people who are afraid to get heated up or to get out of the house. There are people who have pain and decide that they can’t push through.

But YES, YOU CAN! YES, YOU CAN! “Use it or lose it” one expression used to say. I’m not mean, I’m not forcing you do do anything that you can’t or don’t feel comfortable doing. It’s just that I saw it to be possible. I see examples of people that do it. Of course that at the same time there are people who can’t. There are all kinds of situations. There are all kinds of snowflakes. #NoTwoTheSame, as Shift.ms says.

Our bodies are made for movement. As long as you can crawl, do that. Get better ar crawling. There is no shame in wanting to survive. There is no shame in wanting to live and get better. People make it so hard by having big egos, by being so influenced by what other people say about them, about being judged.

It might sound unbelievable to you, it might seem like I’m B.S.ing you, but little by little, I come to understand that there is no ego, there is nothing to be ashamed about. It is all in our minds. We humans are independent beings, and when we face losing that, we get scared, we refuse to accept it. But at the end of the day, who are you to feel that way? There are thousands of people going through the same battle everyday. Some push through. Be one of those people. Constantly. Make it a life quest: "Be on top of all my struggles!"

Be dignified enough to push through the struggle. It’s the hardest thing you might need to do, but it’s why God allows you to live. To make a difference, to be humble and to be more open to what others are going through. We are so selfish and think that our lives are the most impacted ever.

Open your eyes and see how many are in the same or even worse situations. Stop complaining and start acting and doing something to fight back. Get on that eliptical and peddal for as long as your body alows you, stretch your upper body half while sitting in the wheelchair, smile if you are bedbound.

You are a wonderful human being. Don’t feel sorrow. We all face the same end. There’s no need to make the road there even harder than it is. Cry, hit something, yell, journal, confess to a priest, pray, get it out of your system.

And then smile. It calms your soul.

REST

Sleep is the key element that binds the first two together. We eat, we move, but the body needs to rest and recuperate after all this effort. It needs to regenerate the organs, to recharge your energy supplies and to tend to the body. 

We sleep in 1 and a half stages. It has been recommended to sleep at least 5 stages like this, meaning a minimum of 8 hours a night in order for sleep to be efficient.

Of course, when you have MS and fatigue as a symptom, no amount of sleep can make you feel rested, I agree. But you must go with the flow. Do your best in managing your daily activities and hacking the life out of your tasks, as to help the body recharge. I’ve writter about this here. I will also come back with even more details about sleep and how well it correlates to what you eat and how you move.

INSTEAD OF A CONCLUSION

Nobody said that you can cure MS by doing these three things. That would be just junk talk, delusional and counterproductive. When MS hits you, cause it will, it’s best to be prepared and a little more stronger than you were yesterday. You’ll get through it with possible less damage, you’ll raise up the chances of recovering faster after a relapse. 

These three are not miracle cures, are not whishful thinking, but ways through which you can take care of yourself, in which you can help your body cope with life with MS.

It’s like healing the wounded. It’s fighting back. It’s not giving up, accept your faith and drown yourself in anger and frustration. Be assertive! Take control of your life as well as you can.

Why give in? Why be a victim? Choose to live!

Sign up to the email list, to be sure you’ll get the three main articles I publish every week, plus an occasional fourth or fifth post when I have something new to share!

Until next time, make the SMart Choices for your lifestyle.

Love,
Alexandra

Reasons Why Fear Makes us Aggressive Because of Multiple Sclerosis & Why We Must Fight Social Injustice

All human beigns feel fear at one point or another durng their lifetime. But so do other mammals and creatures on this Earth. Even plants do it. So why do we sometimes think we have the right to be aggressive only because we are afraid and frustrated with our MS or with situations that correlate at some point with this condition?

In Romania, there is a strange case of social injustice that happens right before our eyes. Each year, there is a Government budget being decided for each of the ministries administration needs. Healthcare is underfunded for all that it needs to do and take care of, including the National MS Treatment Programme, which enrolls MS patients on lists, in order to receive (or wait for) the treatment they need.

Given this situation, many sufferers are left behind and without treatment for many years to come, only making their condition worse, depending on the state they are on or on the evolution of their MS. This situation has numerous ripple effects, from the person’s own health, to the national GDP (PIB in some countries) and society’s efficiency at large.

It’s pretty simple actually: many people get diagnosed with MS between ages 20 and 40, that period of time when one is supposed to be at the most active stage of life, when you get on top of your career, when you start a familiy and basically just when you are at your most productive, and paying the most social contributions to the state. 

And all of a sudden, because you are not given treatment, you risk not being able to work because of your growing dissabilities. You are no longer able to contribute to the national GDP. In the situation you get worse, you’ll need a caregiver, person which will also need to be payed by the state to take care of you.

Instead of focusing on keeping people functional as much as possible, they put people on lists and in the long run end up paying even more money to and for them, resulting in less money to go around next time, and so the problem goes deeper and becomes worse. Exponnentially worse.

The point where I was headed with this article is that in this context, fear causes even more trouble than just physical dissability. It destroys emotional and psychological wellbeing. It trashes mental welbeing not only of the person that has MS and no acces to treatment, but of the people around them as well: family, friends, life partner, etc. The emotional wellbeing of a person diagnosed with MS is very delicate. I have written about it before and I will write about it again.

These people enter a downward spiral that puts them on a very powerful deffensive, and they become aggresive to anyone who can be blamed for their tragic situation. Knowing the corruption that still exists in this country, they get to think that all the people who do receive treatment are bribing for their meds, surpassing everyone who has been waiting for many years.

Given the eligibility criteria in MS, and trusting in the competence of the medical specialists that are taking care of this illness, I can’t help but wonder what’s happening here? Why aren’t these people receiving their rightfull treatments? Is it dependent on country area, on neurologist, on MRI’s or on what? I accept that there are cases of people who are influent enough to pay extra to get in front, but that’s not a general rule.

This year I’ve once again saw what extreme frustration and fear can do to people in this situation. They just want to live a normal life for as long as they can, and they are being refused this simple human right. 

Here at SMart Choice Lifestyle, we’re going to start doing something for these people even sooner than we planned. We will investigate the right ways and strategies on how to do it. We already have some ideas in mind and were planning to act on them later this year. But this has got to start sooner.

In due time, making sure that we have a strong strategy in place, we’ll get there. You know what they say: “Rome wasn’t built in a day!”. We are aware that MS is a condition that does not get well with time, but we take that risk in orded to do things right.

Thank you for your understanding and please share this article so that many more people get to know how things are here in Romania for some people living with MS.

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This was a collective article, to let you know that we hear you. As fellow MS patients, we understand what you are going through and plan to make a change. Stick with us, have faith and let us know if you want to help.

Thank you for your understanding!

Wishing you the best health,

Alexandra & the SMart Choice Lifestyle team

Reviewing 2015 & New Plans for This Year

Last year has seen a lot of firsts, learning and self-discoveries. I also had a lot of fun, spent time with friends and family, went on vacation and basically enjoyed life as it came. But as with all things “life”, you’ll get some not so good parts also. MS symptoms got a bit more obvious, but I battled them with all that was in my power. All in all, it was a full and enjoyable year. This is going to be a long post, so grab a cup of tea, sit confortably, and let’s dig deeper to see why.

2015 had a lot of firsts and lessons learned, but definetly one of the biggest was starting MS treatment in March. I am well-known by people close to me as being deeply scared by needles and taking any kind of shots. Surprise-surprise! Copaxone, the treatment I’m on, is injectable. It’s a daily subcutaneous (under the skin) injection that burns somewhat when it gets inside the body. If someone had told me a few years back that I’m going to do that daily and not run in terror, I would have called him / her crazy! Actually, I found out that I was not afraid of the needle itself, nor it pearcing my skin, but of the reactions / emotions people around me associated with it since I was little (stick around, we’re going to talk about lots of self-discoveries, ha!). So, that was first of the… firsts.


The second most important thing started was this actual blog. SMart Choice Lifestyle was started in April 2015, as a means to inform and talk about MS-related subjects, advice and living with the condition as a young person. You can read more about that process here.



I read or listened to many insightful books / audiobooks, videos and articles. Through all this I learned a lot about myself, business and life in general. To only name a few, let’s talk about:

“Big Magic” by Elizabeth Gilbert

“Linchpin” by Seth Godin

“The Four Hour Workweek” by Tim Ferris

“Rich Dad, Poor Dad” by Robert Kiyosaki

YouTube basically replaced my TV, as I discovered some amazing channels of which I name the ones I learned the most from: 

Mimi and Alex Ikonn


Gary Vaynerchuk

Yoga with Adriene

Chase Jarvis

Tim Ferris

London Real


Since April 2015, once I’ve discovered the magnificent Adriene Mishler’s YouTube yoga channel and got absolutely hooked, I really got into yoga and meditation. Almost a year later, it has proved to be one of the best if not THE best decision and habit of 2015! It has brought so much clarity and strenght (both physically and mentally) to my life. When my body feels tight or sore from MS-related issues or just from daily work, I always turn to yoga stretches and at least 10 minutes of sitting in silence in order to clear my mind and figure out what’s going on with myself. It’s part of my everyday morning and night routines. Thank you, Adriene! You guys! Be sure to subscribe to her channel and try the #30daysofyoga (2015) and #yogacamp (2016) challenges. She's the best teacher I could ever hope for in this yoga journey! You'll see what I mean: she's funny, calm and really takes her time into getting you finding what feels good on the mat.




Going down a similar lane, I rediscovered God and His meaning to me. Got to know myself a little bit better and learned a lot. In conjunction with going deeper in  my mind and emotions, I found love and strength inside. If you ever think that you are not loved or not stong enough to do something, take a step back, analyze your fears, your thought process and see that if you got through today, you are stonger than you think and you’ll eventually find all the love that you will ever need in your own heart. Just trust and get to know yourself better. It’s so worth it!

It was a time of outlining many projects and having new wonderful ideas. A time of finding my “why”, my mission and calling. It has always been there, staring me in the eyes, but I couldn’t see it because I was distracted with what society taught me. So, I’m a writer and a visual storyteller that likes to help people see the best in themselves. The rest will unfold slowly on this blog, so make sure you subscribe to receive every new update.

I understood that all is flowing, changing, moving, and that I need to go with the flow, adapt and just be. Leave stress aside and focus on the present moment. The rest is fading. So, I had more gratefulness and midfulness than in past years and learned that dreams need action in order to come true. The “secret” is not whishfull thinking, is TAKING ACTION! Doing things.

One big lesson is that forgiveness opens the door to endless possibilities of light heartedness, love and fulfillment in one’s life. You only have to come at it with an open heart and just let go of any grudges, resentments and useless negativity that only brings you down in the end.

There are little miracles happening around us all the time, be aware of your surroundings, the people you meet and the things that you go through.

The funny fact about introspection is that it allows you to understand many of the issues, flaws, problems you’ve had through the years and the reason why they happened. So insightful! I understood that life is in fact very simple and light at its core and we are the ones who make it harder through our own daily choices and actions.

This December I turned 30! And felt like 22 *giggles inside*. Going on the shakespearian lane, what’s in a number? To be or not to be… 30!? What the heck! Let’s live it! I’m 03… oops… 30!

I really didn’t face a big drama (or any drama) when changing my decade. It only made me realise how far I’ve come and how many things I have under my belt. And yet again, how young I still am, and how well that fits with MS! The joy! But let’s not exaggerate! Be humble and grateful for the situation I’m in, because I am aware that others have it way harder than me.

I don’t want you to be offended in the very least by my words, so I must explain a bit: I have a sarcastic-ish way of facing issues in my life, so if it seems I’m just making fun of my condition it’s because I really don’t want to take it seriously. It brings me down, and it’s the last thing I want in my life, on top of the daily stresses. I find it very easy to talk MS-related stuff, make fun of it and beat it sensless with food, exercise and rest. Copaxone only does 30% of the job so I take care of the other 70%, which does not include negative emotions. Hope you’ll understand.

Speaking of lifestyle management, I also thought about what was I doing when I had my best days / results / work. Summing it all up, it was a mix of the following things:

- eating healthy, 
- exercising at least 30 minutes per day, 
- sleeping regularly and minimum 8 hours / night, 
- organising my to-do lists and work in an orderly and disciplined way, 
- focusing on doing just one thing at a time, 
- getting inspiration and achieving the right state of mind, 
- having new experiences and learning
- creating content without constraints, judgements or the others’ opinion in mind,
- working from the heart, when I was authentic and true to myself and my core beliefs.

The biggest, most impactful lesson I had last year was the day when I understood that all is flowing, that all is energy (a vibration basically) and that the most important and life-giving one is LOVE in all its shapes and sizes: kindness, gratefulness, generosity, compassion, forgiveness, etc. We are more stronger than we think. The mind is limiting our actions. Let the Ego go and look at the world through your heart. You’ll be amazed at what you’ll see.

Other highlights of 2015 were finally receiving “The Wahls Protocol” from the U.S. and a surprise red-rose from my boyfriend (May)


me dropping yet another cup that I had for ages, thanks to MS clumsiness (June) (thank you, dear!), 


the Robbie Williams concert in Bucharest’s Constitution Square (July)


the yearly trip to Sibiu and Hunedoara (August), 





the most amazing late summer light I have ever seen, at my parents’ house (August) (the picture really doesn’t do it justice!),  

best friend rebonding girls day out (September),


my boyfriend made THESE for his niece’s birthday (September),


barbecuing and photographing this little guy in the warm autumn light at my boyfriend’s house (October), 




discovering and SAVING my first entirely gray hair (I still have it!) (November),


and enter my beautiful December (might be subjective here, as I’m born close to Christmas, so… if you love it as much as I do, let me know in the comments below): early birthday resent from my boyfriend


my own self birthday present


celebrating my kindergarden birthday *whistles looking away*,


decorating the Christmas tree


the Christmas tree


waiting for Santa,


and yet another reason why I love roses



For this year, my three main goals are centered on writing, photography and yoga. These three are my main focal points, with some occasional sprinkles of travel here and there. But most of all, my biggest hope for the beginning of this year is that my next MRI doesn’t show any new lesions.

Thank you all for being here and reading this review!

Sign up to the email list, to be sure you’ll get the three main articles I publish every week, plus an occasional fourth or fifth post when I have something new to share!

Until next time, make the SMart Choices for your lifestyle.

Love,
Alexandra