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I try to relax my left hand

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As you probably know, I have slight spasticity on my left hand. Not big, but it still sucks.

I try to relax it in a totally amateour way, but it doesn’t really work. It was much easier under caring eye of my physiotheraphist. Being lonlier doesn’t benefit, to tell the truth. I admit: my attempts to make my hand loose haven’t been that successful, but attempts to make it more normal visually and funcion better have been working pretty smoothly.

For example: when I’m knitting I’m careful not to clutch my hand too strongly. It makes me knit slower, but, thanks to this, hand DOESN’T HURT. Yaay!

Same thing when I try to knit (I’m struggling to learn, so it’s difficult to relax, yet I try!)

When I type I try not to point forefinger and middle finger into the sky. They are shaking a bit, hurt, but this way they are being accustomed to more „natural” way of behaving. Continue reading

rehabilitation spasticity

I will be honest: my left hand is in a pretty bad shape

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My left hand has been neglected these days.

I was a guest of a 3 days wedding and the whole trip took me 5 full days. You can imagine that I wasn’t exactly an example of regularity. Yes, I was exercising a bit, but without any tools (for example my beans).

To be honest, I also lost control on my spasticity. My hand is mainly very stiff and my fingers are pathologically straight.

I  am surprised how bad my hand works on a keyboard. Writing suddenly got waaaay more tiring than a few weeks ago.

My plan is simple. I’ve created new ‚minimal’ plan and I gong to stick to it like crazy.

I will admit: the state of my hand is a failure for me. A huge failure. That’s why I’m expecting improvement over next few weeks.

 

 

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

my stroke spasticity

How great is my christmas gift? Great for spasticity i think:)

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One of my Christmas gifts is:

15934644_10154287310658366_328775291_n

since I’ve started with hydro-massages my foot is much less stiff. For example: all my toes  touch the ground.

But lately I’ve been sick and been spending time in bed. And i realised that my spasticity got bigger. AGain. I will go back to my massages as soon as possible. It’s good to know, that my hydro-massager for feet works well. I want to assure you that these are not pointless.

Another person who got such gift from Santa also claims that her foot hurts bit less:) That means that we can recommend it to you:) Me, for sure!:)

spasticity Uncategorized

Everything You Always Wanted to Know About Spasticity, But Were Afraid to Ask;)

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13367595634_3045c59fec_kAs you may know I’m taking part in a spasticity project. It is going on!

We would like to invite you ask about everything you want to know about spasticity. Or such questions you know answers to, but you think it’s important to appear on website:) The website is designed to be place of knowledge about spasticity.

All the questions you can send to our very friendly Nicole: N.Robinson-Edwards(at)stroke.org.uk 🙂 or to me, if you wish.

As far as I know all questions will be answered  by experts and stroke survivors.

I’m going to send my own questions for sure. Especially about pain managing, cause my feet hurts all the time…

And because I wrote this text on Friday: listen to my Friday song. For few years I wanted to sing it withe boys in the radio… 😉

my stroke spasticity

hydromassage (hydrotherapy) of my legs

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2252167949_761a6633ef_oSo far the only thing that helped me with pain of my foot was hydromassage.

I took ot once and im going back tomorrow to make my hand more useful and my foot bearable.

I recommend it. Believe me:)

How does it look like? You put your foot into the special bath, which is like little jacuzzi for legs. and it works and massages you with water.

Before I experienced full body hydromassage, but it wasn’t that effective. I think that masssages of feet and palms separately will be better in my case.

I think i’m going to ask Santa for a boring gift, such little bath for my foot. If it stops my the pain i will so glad that I will forget about boring part of a gift:)5006991825_a69f4f170b_o

my stroke spasticity Uncategorized

I watch spasticity being born

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physioand it’s so weird.

My leg hurts me just a little bit. For the most of time. It’s like bit sore/stiff and doesn’t let me to forget  about leg existance.

My toes (of left leg) are being pretty independent. They go up, as if they had independent life here, completely independent from my brain. And I know for sure that the brain causes this shit. It makes my lower limb be stiff. Be spastic.

Hey, braain! You are hurting me!. Let’s stop this nonsense, leave my feet alone please.

I’m afraid that it’s going to grow.

I’m looking for exercises , maybe stretches. So far I try to remember to have my foot straight on the floor. That the place of toes is on the ground. And not cramped, if you now what I mean… It’s problematic.

Mrs. Magda says i should pray that it doesn’t get worse. But I’m not much of believer and no prayers here. I look for possible solutionss. And become obsessed with left foot.

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 (;