Category Archives: in my opinion

in my opinion stroke survivors

Just to remind you woman who took selfie during her stroke

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This video has been online for few years, but I’ve seen it just recently. Maybe someone else haven’t watched it:

You don’t need to listen to what she says to see her face dropping, understand that she is struggling with the hand. She talks about other things too. For example about feeling numb. Or about the fact, that she had been released from hospital just recently.

She recorded the video to show her doctors what was her problem before symptoms were gone. Quick reaction and taking the phone can seem bit funny, but it helped doctors to diagnose her with three TIAs. Without video they thought that she was feeling badly from being tired or something like that.

Stacey Yepes was driving home (i had TIA behind the wheel too). Now she says that she keeps receiving messages from friends and strangers, that this vid helped someone to recognize a stroke. Continue reading

in my opinion my stroke

If you’ve ever thought how stroke feels like… Happy new year!:)

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in my humble opinion stoke is like the worst hangover you can imagine. Which lasts and lasts and lasts for too long…

your are mumbling instead talking

you can’t keep your balance

light and noise are like millions of needles which stick into your soul

this headacheeeeeeeeee

you are so tired

and so poor

world seems to be unfair and full of evil

you can’t control your body

you can’t swallow or you can’t even look at food

But this hangover doesn’t leave you after a day in bed. You have to work hard to mineralize its effects.

I’m writing abut it for few reasons. First: I want you to feel it a bit more. Secondly: I want to express that I’m happy not to have hangovers anymore;p Third thing would be wishing you

to not have any hangover-like symptoms,

I wish you happy 2017. I hope it will be kind, veryyyyy healthy and happy. I hope that you will have like millions of dollars and all institutions will have stay away from you. I hope that 2017  will give you love, joy and friendship. I hope that government will not piss you off, bed will be always warm, and headaches will keep away.

Dear 2016, fuck off. You weren’t too kind for me, for the world also, to tell the truth. Few nice surprises will not recompense me all the diseases and hours of doubts. I’ve just kicked  your butt and i want inform you that my delicious champagne (below) is going to bit you up. Ok, let’s face the truth: 2017 doesn’t have a difficult task to do;)
hello kitty champagne
PS

lately I’ve been whining a bit too much. My first new year’s resolution is to stop it. Good one, isn’t it?

 

in my opinion Uncategorized

If something is clear for a person with aphasia, it’s clear for everyone

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source: flickr.comDuring the discussion about aphasia someone said that if something is clear for a person with aphasia, it’s gonna be clear for everyone.

I understand it. We were talking about website for strokies.  But many strokies have aphasia (some data I’ve read says that 1/3). And to tell the truth that site wouldn’t helpful to a person suffering from aphasia at all. How it could be if it was full of text and irrelevant pictures?

But it’s Internet. Despite the fact that in some countries (Norway for example, as a Norwegian girl told us) it’s obligatory to adjust websites to the needs of disabled, I doubt that someone was thinking about aphasiac people (such expression exists?) talking about these adjustments.

There are different types of aphasia, so let’s assume that our heroine is not able to read anything and speak. She goes to the Office in which she gets a discount card for trains. She knows what she has to do and more or less when she needs to go, but she’s never been there.

The place can be found on a John Paul II street in Szczecin (my home city). Information board (written of course) is put there between millions of other boards (I didn’t count it as I can’t count till million;p) It’s extremely easy to miss for person who reads and for our heroine impossible. Any remedies possible? I’m not sure… Companies use their logos. Polish  public offices have always same signboard – white letters on red background. There is not much difference between „The National Office of Controlling very dangerous things” and „13th high school”.

People dealing with aphasia have to deal with it. But it’s And I have a sad impression that he big markets are more aphasia-friendly than public offices, at least shops use logos and are pretty consistent about it. I don’t know. Maybe a wish of improving the access for another group is impossible fantasy, but till not a long ago ramps for wheelchairs in many places were also a dream. even a simple system of easy recognizable signs would be helpful (also for foreigners!)

wouldn’t it?

yes. I know that this is not aphasia friendly website. And I can’t do anything about it because I’m not a programmer. If I was a great painter I could paint some things… Using symbols is not that bad idea;)

*[click!]

in my opinion Uncategorized

I, Daniel Blake – human vs. bureaucracy

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When I saw first minutes of the movie I smiled saying ‚oh wow, film about ZUS*’, but I didn’t really believe that the ZUS part will be that big.

*ZUS – Zakład Ubezpieczeń Społecznych, eng. Social Insurance Institution

I, Daniel BlakeSoon I found out that I was right and wrong at the same time. This movie is something more than a story of a guy  who doesn’t want to be broken by institution. It’s also about the guy who is just good person with warm, honest heart. And about a woman, who has bad luck and many troubles and tries to handle the best way she can. And about the fact that good people are going to spread the good no matter what.

Of course it’s gonna sound like a biggest cliché but I have to say that, the film consists of many Kafkaesque elements. Institutions are often Kafkaesque. Think about that.

Daniel  ismore or less 5o year old guy after severe heart attack. His doctor strongly forbids him to work, but the fact that he can walk 50 meters and take something out from the pocket disqualify him in the eyes of insurance company. He lacks sufficient points from silly questions which disqualifies him in the eyes of The Institution. As there are strict procedures, he can’t appeal as long as he doesn’t receive a phone call confirming the letter he got. Going to The Institution himself  makes him even more frustrated.

Daniel tries to make his way in the reality of absurd in which he is forced to seek for a job he can’t really do, just to have any kind of allowance. He is forced to use computer which he can’t use, he is struggling with office workers who have to follow strict rules that don’t match reality. Our protagonist has to be fighter, but he doesn’t want to be one. He just wants to be treated fair and with respect as he is honest for others.

It’s just one of the aspects of the movie, I’m not even sure that it’s the most important, but in his story I see my story (these months without any income!)  and people I know from internet. It’s hard to express. The movie triggered the discussion in the UK, many people say that they know this theme from their experience, others can see the cruelty of bureaucracy for the first time. In my opinion the picture in the movie is milder than in reality. It doesn’t depicts well the constant fear which accompanies people who struggle for living while being sick.

Fear is our companion. Fear of second (third in my case) stroke, another heart attack, financial security, fear of evil commission… I couldn’t sleep at nights when I was waiting for my commission. I knew that I’m not able to work. What should say my friend with multiple sclerosis and after stroke which found out that commission thinks that she is able to work in an office? 😮 I believe her that she can’t. and i really think that her commission was heartless. She is like Daniel Blake (and me) – doesn’t want benefits for life. She wants to go back to job, but it’s impossible now. And there is a fear.

what should say my another friend who after another stroke is more and more disoriented and can do simply less things? She can’t sleep at nights either. Every commission in Institutions which should be here to help is so stressful for her, because she was mistreated, misdiagnosed many times, she was also badly treated by members of commissions. She can fight but I see her loosing faith. Sadly you can’t buy faith. In every second message from her I see these words. „I’m afraid”.

This reality is so difficult for most of people in need, but especially for these with cognitive problems. I guess I should feel lucky as I was in hospital after second stroke at a date of my complementary commission. First one couldn’t decide. Able to work or not able? Well, my second stroke helped them judge.

In theory we shouldn’t feel as suppliants in front of the offices. It’s our money which is given back to us. Still one of the phrases that i find on my polish blog, people can find me in Google by this sentence…

boję się lekarza ZUS = I’m afraid of the doctor from ZUS

how horrible is that?

Daniel Blake is true not only for Great Britain. Details may vary, but will be true for all countries in which a person is a number in the system.

It’s also s true emotionally.

It took away something like 3 liters of my tears.

I recommend it to all of people who

a) like good cinema

b) want to find out the ugly truth

c) want to understand less fortunate ones

‚d) don’t want to feel alone with their problems.

PS

there is also moving, not less important!, Katie’s story. It’s also important. the friendship is important, everything about this movie is important.

in my opinion my stroke spasticity Uncategorized

Frankfurt – short, but long report

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As you might suspect, traveling after stroke is not easy. Actually  it’s pretty tough.

Day one

Airports are overwhelming like supermarket before Christmas. Even healthy people can get confused, for stroke survivor it’s just too much.

So many little things happened. For example i bought newest Harry Potter in German, not English. You know, ich spreche Deutch ein wenig, I speak German a bit, but by the way I would gladly sell it. Anyone? Gelegenheit! Great deal! Okazja! Promoción!.

hotelOr I was standing for few minutes in front of the sign saying „ausgang/exit” and I still had no idea how to get out from airport… Luckily my driver (yes!) was a patient person and took me to the hotel. Where i had room reserved, for a bad surname;p but it’s ok, I’m a hero and I sorted everything out and I could take show, see welcoming me Haribo gummy bears, get dressed,  buy coke zero, drink a coffee and go to dinner to meet everyone:)

I was regretting I had been after long trip and not in the best shape because of that. Really. And I hope that i didn’t behave like a complete churl or bighead, I’m afraid  that i might have.

The funniest point of the meeting was this general welcoming. Chit-chatand

[curtain]

Jelka: Hi, I’m Jelka from Slovenia.

Me: I know, we’ve already met.

Jelka: …:)

Me: In Warsaw, like a year ago.

Jelka: aaaah, I remember you now, and your presentation:)

Manuela: Haha, me too! And your presentation!

Alvaro: Well, you are  this bloger.

Me (pretty scared): eee, how do you know?

Alvaro:  I just know:)

Me (very scared I’m taking two steps back): I see that I’m pretty fameous now.

Alvaro: I think it’s ok:)

The dinner was very nice. I met few members-ambassadors a bit better and I have to admit that we all seemed tired.

We spoke about life, strokes, our experiences, prostitution in Germany. It was e

Extremely nice, but I must admit that I felt relieved when we could excuse ourselves and jump into the bed, without even cleaning  face.

I promise to give you insight into stroke-realted things we discussed, but I simply don’t want them to dissapear in the other things. Each issue-one article. Deal? 😉 But now I just have to announce my new goals. a) visit water bar in Munich (they have different kinds of water;p It might be alternative for my „un cervesa, por favor”)  b) visit Weihnmachtsmart on a frozen lake in Hamburg. It will be perfect place to drink my Gluhwein (hot wine). If I break all the bones and die, at least I die laughing;P

During the night I found out my king-size bed is actually two smaller-size beds. I found it quite suddenly, while being partly on the ground. But! on the bright side I didn’t kicked bedsheet of my bed, mom would be proud.

Next morning after breakfast our classes;p  (all right, Board Meeting) began.

And now I know what it’s all about.

Company Merz, which is one of the fundaments of the project, is the producer of botulinum toxim of the new generation. That’s a first thing. It’s also intrested in CSR I guess, and it came intxo cooperation with  SAFE (Stroke Alliance for Europe). They decided, as we say in Polish, to join pleasurable and useful 😀 and take care of spasticity in a more complex way.

I mean. Merz representatives looked quite confident while talking about their research (very interesting) and their belief that this project actually can help in a problem of spasticity. They convinced me that it’s not (only) about selling their product (which would be sold anyway;p) but doing a good thing from which more than 9 members of panel can benefit.

For me the most interesting thing were results of their research on spasticity. These were shocking and easy to believe at the same time to tell the truth. It was like confirmation of my intuitive believes on spasticity. In a great shortcut I’m presenting the most interesting for me information. I will write more on these in separate notes as each and every of them deserves to get my full attention. Well then:

  • many of people suffering from spasticity don’t even know the term „spasticity”. How they can search for relieve then?;)
  • Botulinum therapy can be satisfying for some reasons and disappointing for others.
  • Many patients never heard about spasticity from their doctors.
  • Main barriers in the access to botilinum therapy are bureaucracy and not enough amount of injection devices.

And you know, despite having a feeling that I’m from the third world of stroke treatment, I see that we all have same problems all over Europe. Every country is lacking the individual approach in therapy and towards a patient. Like everywhere people after strokes could be pampered more;)

I’ve felt a bit weird when one of the company representatives  asked me why I haven’t tried therapy with botulinum. I answered, but if it had sense, I still have no clue:D… I don’t really know. The truth is that I don’t know too much about botilinum therapy.

If you are afraid that the project will be like advert of the pharmaceutical company, don’t be anymore. Actually I felt the same way until I realized that both campaign/website and botulinum therapy are well indefied as the means to a happy end. In the end we will get a nice and well adjusted source of knowledge about spasticity, useful for many people (including strokies  of course) and helpful. And it will be translated to few languages, including my lovely Polish;) And if Merz doesn’t do that i will make them remember, that i have only one fist and leg spastic, other can fight for our right;P

It seems that knowledge about spasticity has to be distributed in many ways as even doctors are not well informed about it. Even they could use some more knowledge. I’m very happy to be a part of the project and not only because I had amazing food there:P

I’m extremely tired. 2 days of an intensive trip&working on project, then 2,5 od writing, translating, but… I’m the best faker (I fake my physical well-being extremely well;p), so hopefully noone knew that I want to sleep in every place I’m in:)

Enough of it. You deserved a short photo relation.

This is what I saw in Frankfurt:

frankfurt-lozko frankfurt-ekran

surname with some typos, but still nice:D

frankfurt-konfa

 

And these things I dint…

frankfurt-am-main-1447004

OLYMPUS DIGITAL CAMERA

OLYMPUS DIGITAL CAMERA

frankfurt-am-main-2-1452688

You know what I mean;) And I hope these photos are from Frankfurt am Main:) Ehhh… It’s been long time of writing. Now bit of the rest. I really really really really really really need this:)

[click for polish version;)]

in my opinion my stroke

I got an increase on my monthly income! Yay!

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Our caring government, or National Insurance Company took care of people like me and we got increase on our monthly payment.

Me myself i got

1,92 PLN

which gives me about

0,44 EUR, 0,59 USD, or 0,36 GBP

more of monthly income.

I can spend it in plenty of ways! For instance:

buy 6 bread rolls in a discount market,
buy 3-4 bread rolls in bakery
buy one cigarette (illegally, but still possible)
use 200 l more of tap water
Buy half price ticket for bus in my city for 15 min,
Buy half price ticket for Warsawian bus for 20 min,
buy one lemon in the beginning of the season
buy 3 pencils with a rubber
buy a donut
buy two zucchinis in the season for zucchinis
buy sesame cookies
change it to 192 coins and throw them to every fountain thinking wish of winning big money lottery
send few (even more) complaining texts to friends
Buy two cheap instant soups
Buy one normal instant soup
buy Ikea hot-dog
Buy the cheapest beer in Poland
Buy one kilo of potatoes
Buy one issue of famous Polish tabloid
buy a lighter
buy a roll of toilet paper
But if I’m patient enough I can save this money for a year and buy:

set 32: knucke with fries and pickled cucumber

or

set 34: Penne with salmon and creamy souce or penne Alfredo, with ripening ham , driend tomatos, rucola and creamy souce

or set 35: grilled chicken breast with blue cheese, with rice and veggies

(menu of this restaurant).

If I saved for 3 months more I could have bought more excellent food. And for the change I could but matches on art.

Possibilities are endless! With 192 coins I could coninue my physiothrapy like that:

fasolki

 

almost, because i would have to save for beans:P

I can’t see any reason to complain. In fact, I should be happy. We have deflation, so actually they should lower amount I get…

PS

My brother, the best guy I know, helped me a lot while writing. I asked for ideas my friends also, but their imagination doesnt get the importance of this topic, sorry.

PS2

in my opinion stroke survivors Uncategorized

Thoughts on „My beautiful broken brain” (2016) by Sophie Robinson and Lotje Sodderland

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After seeimg this trailer I was delighted.

But when I saw that it’s available I was scared to watch it. I expected it could be a hard experience for me, stroke survivor myself, who finds it hard to discover beauty in her brand new brain.

Curiosity won. I watched it. With a cafe break in the middle because it was too emotional for me. Not because of the story, I knew what to expect after a stroke. Because of detailed insight of someone else’s stroke and all the emotions behind it. If you know, what I mean.

First time in my life I saw material that gave so close insight to the world of a stroke survivor. And it doesn’t matter that details of my experience were much different from Lotje’s. Principles stayed just the same.

If I’m faced to the question, „who am I?”, I’m someone who has huge amount of friends, very hard-working, travels all over the world, loves to read. What if all that evidence is removed? What does that make me?

says Lotje, 34-years old stroke survivor. It might seem even too philosophical, but actually most of stroke survivors have to deal with this question. And find their way of answering it. Movie is full of such questions and shows a way of finding answers. Even if it’s not always explicit.

For me one of the most important aspects of movie was filmmaking itself. I have a deep feeling that recording everything was not only a way to remember things for Lotje. It was helping her to understand what’s going on and put this brand new experience into an understandable structure. To tell the truth, my blog (first, Polish version) did the same thing for me. I was starting it with different goals, the more conscious way of experiencing myself came as a bonus. Which now is one of the most important things in my life.

All of it – story, the heroin, visuals, montage, edition looks brilliant and makes a great documentary. Really good one, modern and touching. I could easily imagine it nominated to Oscar prize, not only because it is „my” theme.

stroke

leaf

 

It’s as beautiful as Lotje’s brain. Thanks for that.

P.S.

The movie is available on Netflix!:)))

in my opinion my stroke stroke survivors Uncategorized

Have you ever wondered how your stroke looked like?

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Maybe you looked exactly like this poor man?

The ‚funny video of a drunk policeman’ went of course viral. Now we know he suffered from a stroke. 

I fell on the floor. I was mumbling and my friends couldn’t understand a single word of mine. I kept trying to stand up but it didn’t work. I didn’t know what was happening and I wansn’t cooperating with my friends. 

Now I imagine that if my stroke happened few hours later, my friend might have thought „oh noooo, she got drunk and I have trouble now!” and then help me to get to the couch. Without calling 911 (or 112). And in the morning I could be dead.

How lucky I am that in the moment of stroke I wasn’t in the metro. I really am. Life of this policeman was destroyed twice. It could be any of us.

police, metro, brain stroke

I’m not saying that we should help every drunkenhead on our way, but one of my biggest wishes is to raise awareness of a stroke problem. Please know that obvious doesn’t have to be obvious. And also that paying attention to things around can save someone’s life.