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Stairs. So normal. So scary.

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Stairs.

When you are disable nothing can cause bigger frustration. I’m somehow certain.

If you don’t walk well, stairs are effective tool of keeping you from the world. They are barier bigger than kerbstones and, I’m somehow convinced,  they are boat problem of people worth disabiliTy in the movement area.  Living on the first floor without elevator can be disaster which doesn’t let you do anything outside. You can’t go to doctors,  for shopping or anywhere workout external help.  So simple and so tragic.

I remember learning to walk the stairs after first stroke.  There were few conditions under physiotheraposts were willing to take me to stairs.  One: I must have been  stable enough.  Second: I must have been asegúrate at all times.  Going alone was out of discussion.  And it’s good to ask for help.  Believe me, for own comfort and security,  it’s better to be assecurated.

probably that’s why my bones are still OK:)

I’m after 2,5 brain strokes and just found that I’m in a weird place.  Walking up is non problematic at all,  but going down the stairs suddenly became problematic.  I feel less balanced.  As if my leg was working bit worse.  As if I delayed the movement of my left limb. It makes me crazy.  Every step is like a threat. Two steps – one stair?  Its like disaster. My physiotherapist would scream on me – But working on  bad patterns is doing harm.

So I try to keep my balance and beat my fears, work on my feet and walk.  That’s why I don’t use elevator in hospital i’m at the moment.

To tell the truth I think it’s about my fears and psychological burden. Once in my life I was in the situation that stress and depressive thoughts were affecting my body.  Feeling that it’s similar problem is big.  So I just keep going. And it will improve:)

 

in my opinion stroke survivors

Just to remind you woman who took selfie during her stroke

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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

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.

As some of you remember, I was Polish member of a board that had a pleasure to consult this spasticity website. Now it’s not only pleasure, now I’m really proud.

I’m somehow convinced that many (not only strokies!) will benefit from this project. This site arms us with weapon necessary to fight this condition:) And I’m not (sadly;ppp) paid to tell this, I really mean it:)

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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.

But it’s not that bad. My stay was actually all right. I heard few things that i should laugh about. Or cry, i’m not sure now. Anyway:

  • I know that does’t sound very medically, but right now you need to count a bit on providence
  • We are leaning to the possibility that all was just metabolic syndrome.Quick googling the term and… it’s just nicer name for being fat. I don’t really fit into whole description of metabolic syndrome, but who cares. It can be this. But there are two problems. First: i don’t believe that, second: that diagnosis doesn’t end my anxiety. there is no possibility to confirm that and I will have to fight my fear  in some other way.
  • Your instance is the one we are all discussing 🙂

There were better things:

  • Ward was beautiful and comfortable. Whole hospital not so much, but my place was just perfect.
  • Everything and everyone was so friendly there!
  • I wasn’t bored at all.
  • I had lumbar puncture. It ruled out some things in my case and still it’s a new experience.
  • I’ve been seing one of my best friends frequently. And I wouldn’t see my other friends if I didn’t go there!:)

Well, that’s basically it. I was dissapointed a bit, but now I’m better. I’m kind of weird one among my friends, reacting with sadness for informations like „all tests are ok, results are negative”.

I know that cause of stroke doesnt have to be found, but that doesn’t make me any happier. I’m going to search for the reasons more and more:)

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;)

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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.

 

 

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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:))

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!:)

in my opinion my stroke

If you’ve ever thought how stroke feels like… Happy new year!:)

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in my humble opinion stoke is like the worst hangover you can imagine. Which lasts and lasts and lasts for too long…

your are mumbling instead talking

you can’t keep your balance

light and noise are like millions of needles which stick into your soul

this headacheeeeeeeeee

you are so tired

and so poor

world seems to be unfair and full of evil

you can’t control your body

you can’t swallow or you can’t even look at food

But this hangover doesn’t leave you after a day in bed. You have to work hard to mineralize its effects.

I’m writing abut it for few reasons. First: I want you to feel it a bit more. Secondly: I want to express that I’m happy not to have hangovers anymore;p Third thing would be wishing you

to not have any hangover-like symptoms,

I wish you happy 2017. I hope it will be kind, veryyyyy healthy and happy. I hope that you will have like millions of dollars and all institutions will have stay away from you. I hope that 2017  will give you love, joy and friendship. I hope that government will not piss you off, bed will be always warm, and headaches will keep away.

Dear 2016, fuck off. You weren’t too kind for me, for the world also, to tell the truth. Few nice surprises will not recompense me all the diseases and hours of doubts. I’ve just kicked  your butt and i want inform you that my delicious champagne (below) is going to bit you up. Ok, let’s face the truth: 2017 doesn’t have a difficult task to do;)
hello kitty champagne
PS

lately I’ve been whining a bit too much. My first new year’s resolution is to stop it. Good one, isn’t it?