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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;)]

my stroke Uncategorized

When you can’t count on your memory – the beginning

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brain strokeI remember, for example, telling my flatmate about rice on fire. I remember that after being admited to hospital I could just stand up and walk away. I remember feeling pain. It was my stupid tooth. I remember being full of energy and strengh. I also remember being fully awared what was going on.

I don’t remember it well. About rice I could only try to mumble few words which noone could understand. I had left-sided hemiparesis. I wasn’t able to move my left arm or leg. Standing up or even moving a bit on a pillow was impossible. My conciousness was restricted to the word that people kept repeating. „Stroke, stroke, stroke, stroke”.

I was 25 and i had a stroke. I really didn’t know what that means. I didn’t know that that ‚stroke thing’ will change my life. for 180 degrees. I was going to find out about it really soon.