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my stroke Uncategorized

My third rebirthday. Annual entry for stroke anniversary:)

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Today I have my third rebirthday.

on 21st Dec 3 years ago I had a brain stroke. That means that I’m at the same time 28-year-old, 63-year-old and 3 years old.

rebirth, stroke anniversary, hospitalEach year I feel very weird on this day. I really feel that this date is important to me, even more than my birthday. celebrating the day you were born, its something natural, but I didn’t choose the way of my growth, right? My mom says that I didn’t say ‚no’ to food, but it’s not like I was choosing it. After my brain stroke, I conducted my life consciously to the point that I could. From the diaper to the place I’m in.

Last year was a bit peculiar to me. It cant be related in few words, so I’ll leave it until the new years eve;)

Today I’m gonna be traditional. I’m gonna tell you the ways my life changed in a good way. Areas that are better now.

As you know, the life of a strokie isn’t that great. Frequently it seems to be hopeless and horrible. But there can be found things that changed for better. I truly believe that each and every one of us can find at least one such thing, even if his or her life is miserable.

Well, I have to admit, that few things changed for worse last year. surprisingly I feel weaker than last before. Strange. This year I haven’t had a stroke, the year before I did. how to explain that?:o

so many things are going for worse, I’m not gonna focus on them because there are plenty which changed my life for better. Since last year I’ve noticed a big growth. I’m letting the list expand, even if it grows that big, that it’s too long to read.

so.

what has changed in my life for better after stroke?
    1. I take better care of myself,
    2. I’ve met few new, nice people,
    3. I’ve let go few people, who were bringing me pain. emotionally it’s a great thing for me,
    4. I’m less stressed with small things,
    5. I don’t have a stressful and horrible job anymore,
    6. I’ve learned knitting,
    7. I quit smoking,
    8. sometimes I’m rested,
    9. the card ‚you know, I’ve had a stroke’ still works for me,
    10. I know why I’m oversensitive to sun,
    11. I have a PFO fixed,
    12. I’ve I’ve found a new, great psychologist and i feel that she’s the one,
    13. i’m fixing, one by one, everything that’s broken in me,
    14. i have the first thing in my life that i’m proud of. I mean my blogs.
    15.  My blogs give me satisfaction. It’s a really nice, previously known feeling.
    16. I have the energy to learn new things,
    17. I’m overcoming my boundaries and things I’m scared of,
    18. I’m more peaceful than before. I feel less irritated,
    19. I’ve learned Spanish. I can communicate in this language. And I learned it by myself,
    20. I’ve lost 15 kilos,
    21. I don’t have to give my granny rides to shops. Not being able to drive sucks, but on the other hand, I love this excuse,
    22. I see that I’m helping people,
    23. My hair fall out less,
    24. i’m thinking about myself more,
    25. I started dating,
    26. I have a small collection of figures of goats,
    27. I understand people better,
    28. I’m not that worried about money. I know its very horrible, as my parents are providing for me, but on the other hand, before I was counting each zloty with a fear, and now I’m still counting, but without fear,
    29. I get long depressive states less frequently,
    30. I get rid of stuff rather than I collect them,
    31. I’m learning to have an order around myself,
    32. If its even possible, I’m closer to my brother than anytime before,
    33. again I appreciate being outside,
    34. I have the hammock!
    35. I can do things in WordPress better and better,
    36. I have ‚my own’ business. It goes badly, but it’ll be better. one day.
    37. I have a feeling that I’m more active.

Comparing to the Polish version this list is shorter for two points;)

But still it’s impressive, isn’t it?

I like the points about being proud of myself, as for the first time I really feel pride and satisfaction. It’s a new, great feeling to think about yourself well. For a change;)

Maybe you should try to think about such list yourself? Even in despair, we can find something. For me, the first thing was realising in a hospital that I have nicer skin.

It started with one. Now list is that long!:)

my stroke rehabilitation spasticity Uncategorized

Finally! Website about spasticity is here!

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With slight delay I may present you website with complex knowledge about spasticity:

http://lifewithspasticity.com

Right now only in English, but the website is going to be translated to other languages (including Polish, that’s great news for my Polish readers;) The morethe better i guess. I think the site will be available for more than English speakers:)

THE WEBSITE HAD IT’S LAUNCH, BUT WILL BE UPDATED.

For example next questions are waiting to be answered. You may remember that we (me and you, my readers) submitted some questions too.

To tell the truth I’m certain that the website will do many good things researches show people know about spasticity less than they should. Often they don’t even know what they are suffering from. This website is a first place online (I’m certain for like 99,99999999%) that collected important all basic and lot of non-basic data about spasticity. Actually it helped also me, and even before i wouldn’t call myself ignorant in this matter. Continue reading

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 spasticity stroke survivors Uncategorized

Stroke survivors panel – two days, million challenges

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in the times that hitchhiking seemed so easy... not so long ago;)

in the times that hitchhiking seemed so easy… not so long ago;)

Tomorrow I’m going for long anticipated trip.

I’m going to Frankfurt (am Main!) for the europe’s stroke survivors panel.

As I was telling everyone on my Polish blog… We re going to inaugurate there one project regarding spasticity. To tell the truth I have no idea how it is going to look exactly, but I really hope that main beneficiaries will be you, not the sponsor;p

I was recomended to the panel by Fundacja Udaru Mózgu (Polish Stroke Foundation). thanks to my first blog (click;p).

I’m not a member of any stroke association, including FUM, but they seem to like me there.

Of course my second stroke (yeah yeah, from 16th of August) became a huge threat to my participation. But i thought about everything very carefully and i decided  to go.

Of course I will be:

  1. very confused all the time
  2. tired like marathon runner on the 41st kilometer
  3. feeling nausea like 24h a day
  4. all the time stressed

but

  1. happy that i’d doing something work-like
  2. independent
  3. travelling:D
  4. in Frankfurt

Well then. Keep fingers crossed for me. And for whole project.

I will be back tommorow, so you will not miss me too much. Thanks for help! and hasta la vista (;