stroke survivors – Strona 2 – My brain stroke blog

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Gallery of the faces: I called. It was marvelous!

Czerwiec 28, 2017 Published by: admin

I have a friend who is a fellow strokie. I might have mentioned him before, but I’m no sure. He’s a young French guy who suffered the stroke in Poland.

His stroke caused a big number of problems, such as aphasia, troubles with moving, spasticity… But this guy is determined to get better and gradually improves his health. Moreover, he does good things to the disabled community. He even plans his own blog:)

When we speak on Skype, he seems to be like me. My first impression was like: if I didn’t know, i would have thought that he had stroke problem. Normal boy, maybe looks for English words bit longer than a normal, fluent speaker, but you know stereotypes about French people & English;) my small experience shows that in France it’s easier to find a Polish speaker than English speaker. Anyway;) Continue reading

my stroke

My first visit in the office for disabled

Kwiecień 23, 2017 Published by: admin

Luckily, there are two or three benches outside. Some of us are sitting, rest is treading water.

I’m just in front of the office for disabled people. Sitting and watching people. Having a place to rest, I’m one of more fortunate. Everyone who came later isn’t that lucky. There is the small crowd, louder and more nervous every minute. People standing seem to be even more upset.

Suddenly, doors are opening and the fresh face rush towards them. „Excuse ma’am, we are all waiting!”, people are protesting. „Well, we all just want the forms!”

But yelling doesn’t seem to be finishing. The woman who succeeded in unleashing anger still wants to keep her sense of dignity. She yells a bit, insulting others. Insulting us on her way out. I’m sure that if she could, she would slam the door. To elevator.

I’m still sitting and I’m scared. Disabled in front of my face change, they come into and out the small cabinet. Some them by „taking the forms” really meant „taking the forms”. It’s my turn. I’m scared to death and become numb. Being unable to speak, I can only look and try to spell out words and feel like a hunted small animal. I regret not taking my mum. I really do. Continue reading

my stroke stroke survivors Uncategorized

Happy Easter!

Kwiecień 16, 2017 Published by: admin

Easter is coming. I want to wish you everything which is good, but that later. If i tell you now, you will not read the important part (( ;

Lately I’ve been spending hours a day talking to one guy;) Sometimes it even sounds feels like a confession – well, since i don’t go to the church, maybe it’s needed. I talk about problems that I’ve been discussing here for past two years too.

Of course I’m being cautious, why deter someone right away, but still. Strokes, spasticity, hormones, epilepsy, Rheumatology issues, many things in general. Shortages in abilities too.

And after confessing all of it i hear what? ‚It’s ok, you are more than that’.

At first I was left in deep shock. Because 99 percent of reactions are entirely different.

It’s so rare to hear something like that from person who isn’t that involved into your problems for, at least months.

Typical reactions are rather like this: Continue reading

in my opinion stroke survivors

Just to remind you woman who took selfie during her stroke

Marzec 7, 2017 Published by: admin

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

stroke survivors Uncategorized

at least not impossible

Październik 11, 2016 Published by: admin

We are having a coffe break and my new friend shows me a pic.

Few people in life vests and helmets are rafting in canoes, you know, such an impressive, extreme and impressive.

Nava (points to the pic): this is me, and this man behind is paralysed. And this is paralysed too.

Me (being in a state of mild shock): Extreme. So it’s possible.

Nava: Well, it’s not impossible.

Courtain. And that is a thing I’m going to remember.

in my opinion my stroke spasticity Uncategorized

Frankfurt – short, but long report

Październik 10, 2016 Published by: admin

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!.

Or 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:

surname with some typos, but still nice:D

And these things I dint…

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 stroke survivors Uncategorized

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

Marzec 24, 2016 Published by: admin

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.

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?

Marzec 23, 2016 Published by: admin

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.

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.