Category Archives: Uncategorized

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I’ve left another hospital

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I left neurology ward and I’m both happy (because it’s good to be back home) and unhappy, very, very, very unhappy, as nothing, again nothing is found. Nothing that can cause stroke(s).

Nothing. Healthy woman. I just keep stroking every two years. Does it really happen?

I feel like a patient who’s had the most diagnostic tests in Poland when it comes to brain strokes. Loads of money, many people we know in different useful places and bit of luck havent helped me to find the cause of my stroke.

There are few checkups I have in mind. we can conduct that. And visit at endycronologist and rheumatologist. And my blood was taken to check extremely rare genetic condition. There is a chance like 1 to milion(s).

But the fact is: when there is effect, there must be also the cause. Continue reading

my stroke rehabilitation Uncategorized

What happens to your brain when you exercise?

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This is truely comforting. It’s so important to get to know out brain and impact of exercises.

For these of you who can’t watch the video, i will just give a short resume.

This lady speaks about three great things:

  1. Exercising makes you happier. During working out grows level of for neurotransmiters  (or neurohormons) which are responsible for your mood. You generaly get happier:)
  2. Your attention and concentration improves! Well, many researches prove that.
  3. exercising stimulates producing new cells in hipocamp. Hipocamp is very, very important, as stimulating it is improving our long term memory.

So. Three things so useful for stroke survivors. I believe all of  these:)  If we want to be happy, feel better and focus better, and have better memory,  invite someone for a long walk. Well, tommorow I’m gonna start the day with my x-trainer;)

my stroke strokes Uncategorized

We’ve not known treatment for stroke yet. But there is hope… Listen.

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treatment for stroe?My new friends (usually from Internet) ask me frequently what is the treatment for stroke. I always tell them that we don’t know magical cure for brain stroke. There isn’t anything which can give us back damaged brain. The best treatments are, at least I think so, taking general care of yourself, exercises for both brain and body, physiotherapy… Anything which helps you to regain lost functions.

BUT! Look here!

„Researchers from the University of Manchester have developed a new treatment that could limit the damage caused by treatment for stroke and also promote repair in the affected area of the brain. What’s more, the drug they’re using has already been clinically approved”

Doesn’t it sound brilliant?

According to this article researchers notices quicker neurogenesis in areas damaged by post-stroke treatment, but also by stroke itself.

Some of lab mieces even regained motoric abilities! The question is then whether results of the research will be published in prestigious title& weather these will be confirmed.

So far the article and results of tests gave me a big smile for a day. I dream about cure for stroke. Not even for myself, my body&mind&life quality isn’t that bad, but if i had a chance I’d go for clinical trial;pBut there are people much sicker. without ability to walk, or talk, or smile, or sit, or grab, or see, or with huge spasticity… This med would be so greatfor our community!

my stroke Uncategorized

how much does my stroke cost me?

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I need money. as some time ago I wrote about on the topic how our National Health Fund cuts money for stroke treatment and I try to save for  new computer, I think about money quite frequently.

I decided the amounts I’m spending on treatment from my pocket. The information you need first is that I get about 750 zł a month(=ca. 170 EUR=ca.180 USD). It’s a minimal amount you can get from our National Insurance Company for  saving there for a lifetime.

I decided to count my  usual money spent on ‚aroundstroke’ things.

Well, here it goes.

  • My physiotherapist gets 70 zł/h=c.16 EUR=c.17 USD) She comes here twice a week. Not too much, but also not too little. Some physiotherapists in my city demand much more. In some cases hourly rate can be lower. As far as I know my neighbors pay much more for the therapist.

Lets count: 70*4,5(weeks in a month i think)*2= 630PLN=146EUR=157USD

  • my water massage for hand and leg. Both for 7 zł (with a discount. Normally it would cost 14 zł). I go there twice a week.

Lets count: 7*2*2*4,5=126 zł=29EUR=31USD

  • meds I can only estimate cause I  buy bigger cuantities at one time. I mean doctors perscribe sometimes for more than one month. That’s fair.

Lets count: it should be around 100 zł a month=23EUR=25USD

  • But lets count further. Some specialists i see for „free” (public health system), but some I see in private offices. There are nice surprises. Allergist and laryngologist were available publicly and in sensible terms. But there are specialists you have to pay. The waiting line or rheumatologist is just 2 years in my city in public clinic. Not everything is linked closely to strokes. But still, in some way for sure. Like last September I was sitting in hospital, but still i managed to pay for endocrinologist.
  • Lets count: average 130 zł/month i suppose=30EUR=32USD

 

  • and checkups. It’s easy to get referral from the doc for TSH and level of cholesterol once a year, and for tomography twice a year. But for some I have to pay myself.

Lets count: the averagely it would be around 30 zł per month=7EUR=7USD

Together is gives us 1136 zł/month=263 EUR=284. And i get only 750PLN=173 EUR=187USD. 

That sucks big time;) But there is nothing much i can do.

I could sell all my books, but i use my parents, struggling to provide for me. That sucks. And I haven’t counted cost of my brand new nutritionist. which will cost me like 400-500 zł per month. All of it is half of my mom’s salary.

Well, i guess you should be wondering why I don’t wait to get everything publicly. But believe me, it’s impossible. Some things would be possible for sure, but it would extend the time of my recovery or even make my condition worse. I want to go back to work and provide for myself. You know what I  mean.

 

 

Uncategorized

Top 5 of houseworks to exercise your hand

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In my opinion of course;)

  1. cooking – nothing is better than doing polish Pierogi (dumplings) or Indian chiapati (roti;p)

kolaż-pierogi

2. Hanging your laundry – with clothespin! Great for precise movements;

3. vacooming, sweeping – sorry for that! For me it’s best to use healthy hand only for helping sick one. It took time to learn that, but finally I’m here. Healthy hand is resting more, spastic one works more

4. Doing your dishes – a bit precise. Hold something, turn it, put something into something elase, decompose… it’s extremely hard with one hand!

5. Ironing. The thong that I hate doing and wasnt doing even while being healthy. Only before interviews. But it just must be good. Hand get’s stronger, but puting your shirt on ironing board is pretty hard and precise action, isn’t it?

Well, it’s my tradition to say: mooom, it doesn’t mean that I will love completing all the chores you want me to!

PS

My special number six. During communist era my parents bought somewhere plenty of pasta and not milled coffe, you know, in seeds. It was like a miracle. But they left it once in tiny room with two dogs.

After coming back they saw  disaster. Our beautiful dogs ripped all packagings and mixed all together. Well. If you know anything about communist Poland, you know, that it couldn’t be wasted. So my parents st there for hours playing in Cinderella game. Separating coffe from noodles.

It’s like an exercise you can get in rehabilitation centres:))

Uncategorized

Merry Christmas!

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My dear Friends!

merry christmas;)

For Christmas (or winterholidays)

I wish you:

healthy time

happy time

no argues over the table

no argues at all

loved ones around

disliked ones far away

much money

independency

no strokes

no epilepsy

no headaches

no food poisoning

no stomach ache

no lupus

no throat ache

no aches at all

peaceful time

party time if you want

good weather

snow

or, if prefered no snow

lot of rest

high cognitive skills

no loudness around

nails taken care of by them selves

time for yourself

support and understanding from others

all luck possible

15682052_10154250544033366_1335218391_o

and everything what’s the best. I really do. With all my heart. Thank you for being with me.

 

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 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 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!]

Uncategorized

The importance of saying NO. Assertivness after brain stroke

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assertive I’ve always had problem with saying ‚no’. The bigger request you have the biggest possibility I will do what you want me to do. If you want me only to move ass to give you something I will have problems. I’m the altruist type I guess. That’s why one of my flat mates used to call me the good lamer (if she knew about last years’s adventures, she would call me the good hiperlamer;)

Now. That was not that good introduction to the topic I’m going to write about, because I’m not going to write about disadvantages of being good-hearted, but about the importance of ability to decline things that come.

Imagine that your family goes for one day trip. You plan to take a car, go for 200 kilometers to the sea. You know that road will be very though, there will be much sun and nowhere to hide, kids will be tired and bored, so there will be no rest for you. And you will come back very late.

Or that you get an invitation for a Christmas party from work

Or your brother asks you for  a help in translations.

Or your dadagain and again asks if you could go together for one concert.

Or someone makes you drink vodka (and you don’t want to drink)

Or, or, or….

I’m not saying that you have to say NO to everything. I just say that you can do it and sometimes it’s better to say NO/Not now/Maybe another time. After stroke you have even more right to think about yourself than about others.  
 
Me myself I go to parties like once a year. And I have to be assertive when the time of going out comes. There is no way I could stay long hours, till morning or till the end. The noise (it doesn’t have to be techno party, even few persons in the same room are difficult to handle sometimes), chaos… I cant survive for a long time:)  but often I have to put my foot down and despite (sometimes very cute) requests like ‚stay just bit more pleaseeeeeeeeeeeeeeeeeeeeeeeeeeeee’. I have to go out when before I cross the line after which I regret going to a party/meting.

saying ‚no’ is sometimes easier than calming down the voice in your head filled with remorse. Today for example i said no to my mom when she asked me to go with her and work together and do some shopping. My parents have tiny business they sell dog’s and cat’s food and they drive a lot by a car. I said no, because in a car I feel lousy all the time and I have many things to d. After such trip I would have to sleep for few hours and I wouldn’t finish up them and for sure I wouldn’t be able to exercise. and I wouldn’t enjoy going to theater with mom. But still I feel remorse because mom works and I’m only writing, you know.

Challenges of communication, noise, stress, limited possibilities, slowdown… You have to consider everything before you agree to something. I find it very difficult. Lately I’ve had some bad experiences with things of ‚took’ kind. The walk was too long, the deadline too close, too many things to do over a day… Everything i say i don’t say to convince you that you should become a self-obsessed selfish idiot, but to show that we should consider many things things. It’s always healthier to be able to say ‚no’;) believe me.