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Risk factors: an old age

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Maybe first I’m gonna say that when I first had a stroke, I was 24. Now I’m older, but I know the experience of having a stroke at a young age. I can’t count how often I’ve heard the words, „so young and already had a stroke” or „I didn’t know you could have a stroke at such a young age!”. Even though it annoys me, I don’t blame people who say it. Strokes are associated with grandmas and grandpas. To tell the truth, people working in hospitals used to say the same thing. I won’t forget how nurses and cleaners questioned me about the cause of my condition, and then physiotherapists, even though each of them has surely encountered such cases, even if only briefly.

Stroke in old age: the statistics are unforgiving

namalowana babcia dodana do fioletowych kwiatówO.K., I shouldn’t complain. I was extraordinary. Statistics speak for themselves. After the age of 55, the risk of stroke significantly increases, and with each passing decade, it doubles. Considering that our society (Polish, but also across the Europe) is aging, and it is predicted that by 2060, nearly 35% of us will experience this disease, one can imagine the masses of older people in need of help, support, and treatment.

When describing this topic (I’m doing it for the second time because I lost many texts when moving my blog to a new site), I wondered why age is the most common risk factor. I came to the conclusion that the terms „age” and „old age” themselves don’t say much. What matters is what lies behind them. A quick research proved me right. Because old age is simply associated with many life changes that significantly increase the risk of a stroke. And this combination looks different for each older person.

Multipathology of old age?

One of the scientific publications on this topic used a term that really moved me: the multipathology of this period of life. It includes a regression of vitality, health, and quality of life. This perfectly describes old age, doesn’t it? Regression of vitality, health, and quality of life. And there’s even more behind these terms. Examples? Heart and circulatory system diseases, heart diseases, diabetes, atherosclerosis, less physical activity, chronic and sudden illnesses, eating habits acquired over the years and their change with age (e.g., often reduced appetite), loss of strength, a drop in blood pressure leading to ischemia in some areas of the brain, neurological changes, frequent immobilization… I’m sure there are many more factors, and all of them contribute to the landscape of old age.

Of course, these factors can occur in young people, and seniors don’t have to deal with all of them. However, according to the articles I found, each of these factors, often in combination with others, poses a risk. I accept this without discussion. Because in my imagination, as well as in my experience, old age is characterized by dealing with exactly these factors. And next to the calendar age, they make up old age. Looking at this mosaic, I’m not surprised that age is considered the greatest risk factor. I’m also not surprised that these factors are hidden under the term „old age” in articles. Multiple factors – one term. Oh well…

Looking at these factors, I can’t help but think that I don’t want to grow old. 😀

My research also pointed out other things: that age affects how strokes look, how they are treated, and how patients recover from the disease. I don’t want to write about it now because the text would be too long. However, it’s worth knowing that the number of strokes is increasing overall, and the number of strokes in young people is also rising. I once read that this is mainly due to an increased number of hemorrhages, not necessarily ischemic strokes… But I don’t know. I do know that young people in the stroke wards are less and less surprising.

It’s also terrifying. Also, dr. Marta Bott-Olejnik (I interviewed her, do you want to link? I mean… It’s in Polish, but maybe you want to google translate?) told me during an interview that the latest data show that one in four people will experience this disease. Just a few years ago, it was one in six. So it’s a massacre. Therefore, it’s worth taking care of oneself to reduce this risk. While we can’t escape the ailments of old age (unless we die earlier 😀 ), we can take care of ourselves when we are young. I wasn’t taking care of myself very well, and combined with medical factors, I received a gift in the form of months in the hospital and many years without work, but for now, I’m young by stroke standards, and I try to prevent it all from happening again.

 

Main sources:

Czynniki ryzyka wystąpienia udarów niedokrwiennych mózgu,

Analiza czynników ryzyka udaru niedokrwiennego mózgu

Deficyty poznawcze a kliniczny obraz depresji u osób w podeszłym wieku po udarze mózgu

Wpływ wybranych czynników społeczno-demograficznych na przebieg udaru niedokrwiennego mózgu 

Udar w wieku podeszłym – odmienności

https://www.medonet.pl/choroby-od-a-do-z/choroby-ukladu-krazenia,udar-mozgu-u-seniora—objawy–pierwsza-pomoc–leczenie,artykul,28917815.html#udar-mozgu-u-seniora-przyczyny?

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I got a job! Probably parament one!

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I got a job! I’ve known about it for a few days, but it’s only now that I feel more realistic, because I’m starting tomorrow. And I’ll be getting up about 5 hours earlier than last year.

Am I scared? Sure! Am I happy? Of course!

Sleeping till noon will not happen so frequently, but… Despite my anxiety, I can see a lot of positives before starting work. The interviews were nice. Like me, I was babbling (once I even had to ask my future boss to erase what I had said from my mind), I stuttered a little and thought in silence, so I was myself. I’m proud of myself because from the beginning I asked for part-time. There was no problem with that. Great!

 

Once I burned stupidity, which I would regret very much elsewhere. Without asking, I said that my priorities in life are a bit different than that of many people and that money is not the most important thing for me, but health. After all, it couldn’t be so bad, I got the job!

Do you know what’s the best? Really THE BEST? During the interview, I said that sometimes I feel terrible and asked if we could agree so that if I needed I would take a day off and then work off those hours, and they said that with a migraine I would not be useful to them anyway, so sure.

To tell the truth I have a feeling it will be ok. I suspect that I got away with it because I have a cool CV. I would never have thought about it like that because there are more internships and little work, but apparently, it is.

And … I have StrokeTales in it, so I did not make a big secret of the disease.  I could have because the recruiter can’t ask about my health (that’s what I heard, to be checked), but I decided that there is nothing bad about it, it’s a huge part of my life. I often wonder about this element of my CV, after all, I am writing here very colloquially and emotionally, and when I am emotional, I do not even have the strength to correct texts, so they are not the best. For some it will be a big plus, for others it will be a minus. For some, honesty will be a plus, for others what I said may be disqualifying.

I honestly thought that working after a stroke would not really be possible. I know my limitations like no other, at the same time I know how to overcome them wisely.

I’m scared, sure, but without a stroke, I’d be scared too. Because I’m one of those people who don’t believe in themselves.

What is this job, you will ask? And I will answer;)

I will be working in the municipal family support center. I’m surprised, too! I wonder if my attitude towards life can stand it. Can I avoid singing loudly at my desk? Will I be drying my head in the morning for the sake of appearance and whether I will be wearing make-up

Tomorrow’s first day, I’m going to take a look at the dress code there as I have a feeling I will need to buy some clothes.

 

Apart from getting a job, the best part of all is that I will be taking part in a socially important thing and maybe my job will bring some good to the world. I will be working on a foster care project. We hope that the project will encourage new people to become foster parents. My heart is already sold to the idea, although I’m a little afraid it will be sold too much.

 

After my mother and auntie, I know that the times of drinking coffee in offices are over, so I expect serious and difficult responsibilities. On the other hand, as far as I know, work in the municipal offices is stable and has a lot of benefits, including thirteens salary, paid holidays as provided for in the law. I guess that in this place it will be similar.

 

Well. you already know most of this, so I will ask for:

Good thoughts

Good luck wishes,

Congratulations and applause! : D

my stroke rehabilitation stroke survivors Uncategorized

Expenses of chronically sick people

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Inspired by an article from themighty.com I decided to write about the expences of chronically sick people in Poland. The situation is quite different from the American, so I think its worth to write, even though the topic was the same. Poland is different. Europe is different. Basically everywhere you have a public health care, better or worse, and, well, for better and worse.

This text doesn’t describe strokies’ expenses, I’m going wider. So:

what affects the wallet of an ill person?

  1. No work – many of chronically sick people do not work or work for a limited time. Or need to take days off  (hours off) to go to plenty of appointments. The loss of income seems to be basically the biggest factor that decreases one’s economic position.
  2. Cost of meds – in Poland they are partly refunded. Not all, not for every disease. So, for example, you can pay like 30% of the price, but on other meds go normal 100%. And, from my experience, these are the most expensive ones. For example my meds for lupus. No refunds, 100% of the price of the most expensive drugs i am taking. Another thing in Poland is that often only older generation drugs are refunded or even available. About availability: i go to Germany to buy one of my lupus drugs. they are simply not allowed to be sold in Poland. But they are way less harmful to me. The choice is quite simple. So each time I need a refill, my parent need to go over 50 km to German pharmacy (I don’t drive). Good that at least that’s the occasion to buy better washing detergents.
  3. Physiotherapy – it can be surprising, how often you need rehabilitation. So many not obvious diseases demand rehabilitation to keep patients in a decent state. Sure, rehabilitation is sometimes refunded. Sometimes. At least in Poland, access to physiotherapy is bad. That means that you pay. If you’re lucky, you pay after using the hours you’re entitled to. If not – you just pay. If you’re in a bad position, you’d just don’t have the physiotherapy at all. That means you are sicker than you should be. You could be healthier. But you’re not.
    At the moment I don’t have any kind of rehabilitation. I can’t afford it and I don’t want to ask my parents for more money.
  4. Seeing doctors – that’s tricky here. In theory, you have access to every kind of specialist for free. And sometimes it’s fairly easy to see them for the first time. for a visit to the office of random (really random, I found one that I didn’t have to wait for months) I waited for less for 2 weeks. But a first visit at the rheumatologist was scheduled in more than… 2 years. Yay! Guess what I did? I paid the same doctor and I went to her after a few months. Huge difference. There are many kinds of specialists that don’t have free spots for months, years ahead. Even when you pay.
  5. Travelling – I live in a big city, so most of medical procedures are here, within a few kilometres, but there are people who need to travel far. and people, who need to travel with a carer. I know one history of a woman who travels more than 500 km with her daughter to have her baclofen pump refilled. For me, it was quite complicated. Strokes happened out of my city, so whole treatment took place out of Szczecin as well. For me, little change, for my parents – huge expenses. Huge.
  6. Equipment, both mobility and adaptive. Again, in Poland, they are partly refunded, but if you want to have something more advanced, you need to pay out of your own pocket. for example, I’ve heard the legends of having the bathrooms adapted for the wheelchair, but I consider them real legends. But on the other hand, the cheapest wheelchair for my grandpa was refunded. Good, that we didn’t need much more.
  7. Higher bills. Do you use more water or electricity? You pay. Simple.
  8. Nursing and caring – Woah, that’s a huge one. especially that the expenses are big, refunds small  (or there are no). Usually, severely sick people here are taken care of family members. So it can limit also their income. But it’s not really only about full time caring. Sometimes sick people need help in cleaning, shopping or going outside with someone who would assist them. Expensive, expensive, hard.

Maybe there are more points, but to tell the truth, these are main. I struggle with some of them (or maybe… my parents do, because its them who pay for most of my medical bills).

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What happens to your dog when you are taken to hospital?

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It’s been bothering me for quite some time.

What happens to your dog when you faint (have a stroke, lose consciousness, weaken) on the street?

What happens to your pets when you live alone and paramedics take you to the hospital?

Does your friend stay on the street?

Die alone at your house?

Luckily, NO.

Arek from the Ratownik Medyczny site explained to me how it works in Poland. There is a simple procedure for that.  Paramedics call Police or other municipal services and they take a pet to the animal shelter or vet. both in the street and house scenario. At home, additionally, a dog or cat is being locked in the bathroom immediately, so that people who bring help were safe. And that’s all!

Arek told me also that he hasn’t seen such a situation, so this knowledge hasn’t been implemented to the practice. Of course, it is great but… it’s hard to believe, isn’t it?:)

the dog and the cactus

in my opinion my stroke rehabilitation stroke survivors strokes Uncategorized

About having things done for/helping stroke survivors

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When disability after stroke (and every other kind to tell the truth) comes into being it is new for everyone. For a person affected, for his/her caregivers. For friends. It also brings an important question:

should we help a person with a disability with everything?

The answer is super easy: NO. If the stroke survivor has contact with the world and has any possibilities to move (even in a limited range): DON’T DO THAT. 

If you want to help a stroke survivor to recover, don’t.

I admit. Sadly, this issue is not easy for both sides. To some extend it is easy to serve, feed, put in a fix, open the bottle, move in a wheelchair, yes. But on the other hand, such help doesn’t give any possibility to the sick person to mobilize to the painful process of recovery. 

Look at hospitals – the hospital bed tables are usually placed on the affected side of the body of a Strokie. It is about encouraging the patient to do things himself… To tell the truth, I’m not sure whether it works that well. In a first hospital, I was placed after stroke, I tried to use my right hand anyway (my right side was affected). Always. I even got a bit cunning. For a few weeks I was laying next to the window, so I used a windowsill as my additional table and storage area. In some hospitals (later on), nurses would scold me for that, but in the first one, I don’t think so (i don’t remember for sure, though). Continue reading

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I had a fantasy of driving with a driving instructor

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And I dropped this splendid idea.

lefthandLately, I’ve sat behind the wheel of our car. My brother encouraged me and, I guess, he’s been regretting this move till today.

I was supposed to drive about 20 meters and park. Nothing complicated?

You couldn’t be more wrong. I just forgot how to use a car. I forgot about the existence of accelerator. Actually, I think that I KNEW that something was missing, but I didn’t know what.

Anyways. After a while, with the great tutor next to me, I started to drive. And I parked.

Then I had an idea: what about the supplementary training of driving? Not to come back on the roads (epilepsy…), but for fun. It would mean driving with someone, who could stop the car if necessary.

My fear is strong. would brakes save me from such thing?

And remember, that my TIA (ministroke) happened in the car.

I’m scared. So no driving. No driving until I’m sure about being safe from seizures. Let’s wait and see.

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Well… I got a job. I lost a job. That’s life

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lefthandNot easy come, but easy go. I`ve lost my job.

Exactly 3 years and 5 months after the stroke I took my first job after the stroke. Almost exactly 3 years and 7 motnhsafter the strome I lost it. My 3-month contract for a trial period is not going to be renewed. So my first job after a stroke did not turn out to be such a success as I had counted for.

What went wrong?

Was it a false start or had I waited too long?

What was a obstacle – a hand or concentration?

Too many naps or maybe too few?

Was it me who failed?

I would like to have answers for even a few of these questions.

How do I feel?

Well, you may expect that not really good. I just feel that I disappointed myself. And that I did not manage. It may be true and false. I see a lot of fault in my failure on the firm`s side. But let`s be honest: if I had been a worker of the year, I would probably not have lost this job. If I hadn`t made mistakes, they would not ave written I made them. Simple things. I am analyzing everything and my head is unfortunately full of questions as well as reasons, arguments, words both comforting and blaming me, the firm and the whole world.

I have a sense of failure. I would have it after being fired from any job. It`s not something I could ignore by shrugging arms. It just isn`t.

I was obserinv my progress at work. And I am really glad with it.

It`s turned out that in my case job after the stroke is not impossible.

But it`s terribly difficult.

However, I had not been able to do more.

I hope I will not look for next job for another three and half years.

 

my stroke stroke survivors Uncategorized

life after stroke – conference meeting

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Again crazy week with the even crazier weekend.

I think that I should be prepared for unexpected by now and in a way I am but from time to time I have small pinches of the feeling which I like: yaaay, my life isn’t as boring as I usually think!

anyways. on Tuesday my fellow strokie, Louis Gustin, invited me to a conference(meeting, whatever you should call it) to Warsaw. As a proper yes-woman, I agreed immediately, not even thinking about it. I thought that it would be pretty cool to meet Louis and even cooler to find out more about

life after stroke.

Continue reading

in my opinion my stroke Uncategorized

Workplace wellness: how your job could be better (thoughts after the conference)

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Again, after 2 months (sorry, these were really busy and difficult) I’m back to  Sharjah Forum and it’s theme.

I participated in the workshop about workplace wellness.

What is it? Wikipedia says

Workplace wellness is any workplace health promotion activity or organizational policy designed to support healthy behavior in the workplace and to improve health outcomes. Known as ‚corporate wellbeing’ outside the US, workplace wellness often comprises activities such as health education, medical screenings, weight management programs, on-site fitness programs or facilities.

and these words depict pretty well what we were discussing for quite a few hours but not quite what I was expecting. My thoughts on data I got bit chaotic but frustrating. Frustrating, because for me term workplace wellness and its representation aren’t really present in Polish reality. As a society we manage diseases easier, but get unhealthier, so we need something attractive to have a will to keep our bodies in a good shape. Implementing wellness programmes is a great idea. Which limits us, but on the other hand, saves us. Welcome to the modern world.

Leaving aside all philosophical divagations, my thoughts are simple.

For start: I can’t really recall many companies which would implement workplace wellness. In my Polish reality, it’s just not present. Sorry.

I admit that I’m not familiar with big corporation’s policies as I haven’t worked in one.

But still I have friends and I listen to stories. And how many examples I found? Right now, I can think of like 2-3 that could have been counted. A few days ago, for example, I had a chance to speak to a woman from Amazon and she mentioned such practices. To which extent do they care? I have no clue. It was a birthday dinner, not a work, so we left the topic quickly. But I know that they have, for instance, competition in losing kilograms between teams. Group one, which, in my opinion, makes it healthier*.

On the forum, there were people from organisations and companies who try to promote that or start such programmes. That’s a nice approach. There was a woman from HR department in a big company and she shared briefly their story. They started with nothing and people wouldn’t even care to know the new opportunities and possibilities. Only when they started with fun stuff. First, company parties with healthier food and attractive things to pull out people from behind the tables. Darts for instance. Then they started such things in office hours, implementing workplace wellness programs with very good results. Continue reading

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I hate my birthday. But it’s a good time to wrap up the year

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rebirth, stroke anniversary, hospitalEvery year on 3rd of January I wake up in an extremely bad mood which doesn’t leave me until midnight. Typical birthday blues. I try to have a full agenda, but this year… I had a migraine again. Vomited in the medical laboratory, the world was more painful than usual.

However, my birthday is the perfect time to share with you successes and failures of 2017. I’m gonna use numbers.

My first hero is 2:

  • 2 amazing months: July and November, when I felt well. They were full of joy, warmth and peace. Sources of their awesomeness were very different from each other but in the end, I spent two months almost without pain and depression, cherishing normal life
  • For the past two months, I haven’t been rehabilitating myself and exercising. I can’t explain it. It’s about being extremely busy and extremely lazy.
  • I started doing two cool things. I opened my business an started volunteering for poor people and against food waste. Shop gave my unemployed life bit of meaning, work for less fortunate made my need of helping others less meaningless.
  • Two things I’m actually proud of: my Lewaczka.pl blog (this one too;p) and first money earned since the stroke.
  • Two job offers. Nothing worked out of it, I have no clue why, but still: someone believed in me enough to offer me a place in his team.
  • Two brilliant blog entries from a guest star:) In Polish only, sorry!;)

12:

  • Pills I’m taking daily,
  • months since last birthday blues,
  • months till my 30th birthday

3:

  • three new diagnoses. Lupus: most likely I’ve been living with it for the past 10-15 years, not knowing about it, carotid artery dissection – could be the cause of strokes. Lupus, dissection, hole in my heart, I have many things to choose from;)
  • three hospitals I was admitted. All three admissions were planned.
  • For the third time, I was guaranteed social security money. Yay. I’m kind of covered till September.
  • 3 amazing trips. Denmark with a friend, Cyprus with family, Emirates for NCD Alliance conference... All of them were really great. Denmark was like completing lifelong dream, Cyprus nice time with my beloved people, Emirates: oh wow, it was my blog-wise achievement. Big one. I can’t stress enough how I enjoyed the time there.

1:

  • neurolupus, new kind of lupus thrown into my face. It’s about to be confirmed, now I imagine it as a little worm eating my brain and leaving me with depression, dementia and meaningless life,
  • one participation in an event of a big importance;)  well, at least for sick people,
  • new, brilliant psychotherapist,
  • one physiotherapist who has left me for the man. But I can’t be upset about it. I wish her best of luck with him, they deserve perfect life:)
  • One pronouncement saying that I’m disabled. It’s official. It’s good. It gives me a discount for a train. Twice a year;)
  • One magazine cover my face was on. I’m a cover girl;p
  • One sport I started to practice. I’m lousy. But Olympic games are once every 4 years, no worries here;)
  • Foreigner, I’m helping in settling here. He’s a friend and we are very happy to see his life easier from time to time.
  • Epilepsy attack. unexpected. Adding two years to my auto-ban;) (do not mistake with autobahn;p I mean I’m banned from driving for 2 additional years).
  • Website about spasticity I’ve consulted,
  • Day of the retired people I was celebrating,
  • the brother whom I love. But my love starts to be conditional. I don’t love him that much when he puts glass full of water on my back.

15:

  • kilos I’ve lost,

million:

  • of series that I completed,
  • hours in bed,
  • smiles and pleasant things that happened to me,
  • litres of water I drunk,
  • hours of not moving while I should move,
  • interviews I gave. It feels like a million anyway.
  • Minutes of escaping the reality.
  • of good, kind people I have around and I’ve met.

115:

  • texts for my polish blog (!!!). Only…

26

  • texts for an English version of my strokie blog. Poor result.

Zero:

  • of new strokes! None!
  • plans for that years. Many dreams though;)

It was a weird year. Horrible in many ways, but still kept finding reasons to smile. But dear my 29. and dear 2018:

by the way… one of the first songs I learned to play on a guitar. very bad. But for now it’d be perfect. Gotta try!:)