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What were you doing when your stroke happened?

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What were you doing when your brain stroke happened? I, myself, didn’t think about it much, but people keep asking me. And suddenly… I saw one topic on the Internet forum where strokies were sharing this information. I collected more, reminded myself stories from hospitals, and my readers. List surprised even me. It was diversified. And long. Now I am able to present thrilling collection which seems to scream „come on, it can happen anytime. Anywhere. To everyone”

let’s go then. I had

I had a stroke:

  • just after waking up
  • in work, during preparing to a hard day in the car rental place
  • while walking my dog
  • at the beginning of my job
  • during my afternoon nap
  • while Muay Thai work up
  • falling asleep
  • while driving
  • playing games n computer
  • during sex
  • gardening
  • during my wedding
  • on a couch while talking to my son
  • while talking to people from the stage
  • while sleeping
  • eating
  • during my holidays
  • during brain surgery
  • at a party in night club
  • while talking  on the phone
  • on my way to work
  • in taxi
  • during my jog
  • under the shower
  • while working
  • on the dentist chair
  • during my appearance in the news
  • while brushing my teeth
  • in the airport
  • on the football training
  • at the birthday party of my nephew
  • while vacuuming
  • working n the computer
  • while smoking
  • watching TV
  • in the hospital bed
  • while crying after the death of my cat
  • while shopping
  • cooking something
  • at hairdresser’s
  • while feeding my 5 months old baby
  • in autobus
  • while walking…

And me?

  • while driving a car
  • in toilet
  • while riding the bike

please remember that brain stroke is a very serious thing. and as it can happen at any unexpected moment, remember most common symptoms of it:

it can be a huge pain, loss of sight, loss of control in legs, loss of balance, for me once the world just felt weird, like it was spinning in a strange way… these videos show only main symptoms, but the usually occur.

Let’s hope that you will never have to answer the question about the place you have had stroke;)

 

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Gallery of the faces: I called. It was marvelous!

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I have a friend who is a fellow strokie. I might have mentioned him before, but I’m no sure. He’s a young French guy who suffered the stroke in Poland.

His stroke caused a big number of problems, such as aphasia, troubles with moving, spasticity… But this guy is determined to get better and gradually improves his health. Moreover, he does good things to the disabled community. He even plans his own blog:)

When we speak on Skype, he seems to be like me. My first impression was like: if I didn’t know, i would have thought that he had stroke problem. Normal boy, maybe looks for English words bit longer than a normal, fluent speaker, but you know stereotypes about French people & English;) my small experience shows that in France it’s easier to find a Polish speaker than English speaker. Anyway;) Continue reading

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I thought we ruled it out, but… It’s lupus.

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I’ not sure whether I should laugh or cry. I have, finally confirmed, lupus. On my Polish blog, I had some texts about lupus. Why it could be the cause of stroke, or why I suspected I had one. Also why we ruled it out.

Now I’m left with my English site and I have to be bit straightforward: I have a very mild lupus. Bad news in bad time, but usually no one asks you when you want to receive such news.

WHY SHOULD I BE HAPPY WITH THIS DIAGNOSIS?

  • it’s a skin type. I don’t have to worry about kidneys, and eventually most of the organs, shutting down. Just about skin. Yay!
  • the treatment doesn’t involve steroids, but antimalarial meds. At least at the moment.
  • it’s been in me for years. A real pain in the ass. Now I have a chance to improve some things in my health.
  • I’ve not been that sure whether the kind of lupus causes strokes. But if so, treatment must help to prevent next strokes. Yay!
  • Because I’m having like very very very minor symptoms. Lupus is there, but it doesn’t bring any threat I wouldn’t know about.
  • I don’t have to search for the causes of allergy for the sun, rashes, hair falling out, swollen lips… I have it in one diagnosis!

WHY I SHOULDN’T BE HAPPY ABOUT IT?

  • the collection of chronic illnesses grows.
  • listing my diseases and maladies will take even more time.
  • it’s pain in the ass.
  • I feel like the sickest person on earth
  • I can’t leave rheumatologist after two visits. She stays with me.
  • I have to learn another complicated illness. Come on. I’m into brain, not skin. Actually, it’s been few days and I haven’t started reading on lupus. I have a whole life for that.
  • there is not much hope that one day I will go to the sun not covering my face.

REACTIONS TO THE NEWS WERE VERY DIFFERENT FROM EACH OTHER

  • at least it’s not cancer (come on…)
  • you have to find yourself a new hobby
  • I thought it’s been excluded already? What’s going on?
  • I don’t know the second person who would confront so many obstacles with such strength and class. (…) You don’t have any new disease in your packet really. You just found out about it.
  • I’m here if you want to talk.
  • Oh God, another one…
  • at least you know what’s caused your strokes
  • Dad: silence. Grandma: silence.
  • Me: laughter. but just after the cascade of the thoughts.

and it’s just tough and sad I guess. It’s not like I’m having only that lupus thing on my mind, but it doesn’t help to make myself better.

I just have to fight and I learn about myself as much as I want to.  I had some texts about good stuff coming, but suddenly they don’t feel as important as like a week ago. fun thing is that I have to avoid.

fun thing is that I have to avoid the sun, especially this very sharp, like opposite of British. And I’m going for a week for Cyprus. Good for me and lupus;)

my stroke stroke survivors Uncategorized

Happy Easter!

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Easter is coming. I want to wish you everything which is good, but that later. If i tell you now, you will not read the important part (( ;

Lately I’ve been spending hours a day talking to one guy;)  Sometimes it even sounds feels like a confession – well, since i don’t go to the church, maybe it’s needed. I talk about problems that I’ve been discussing here for past two years too.

Of course I’m being cautious, why deter someone right away, but still. Strokes, spasticity, hormones, epilepsy, Rheumatology issues, many things in general. Shortages in abilities too.

And after confessing all of it i hear what? ‚It’s ok, you are more than that’.

At first I was left in deep shock. Because 99 percent of reactions are entirely different.

It’s so rare to hear something like that from person who isn’t that involved into your problems for, at least months.

Typical reactions are rather like this:

uno: uncomfortable curiosity. Tell me more, how did you earn that, why don’t you get a job?  

Two: astonishment. So young? Whaaaat? Does it even happen?  

Three: being snooty. Come on, you are healthy already. You are all right. I told you before that you should lead healthier lifestyle.  

There are some more, but come on. These reactions make it difficult to talk about illnesses in general, and make it hard to meet new people.

But sometimes unexpected happens. You are more than this.  

I know i was writing about all these things on my polish blog in the context of working of our wellbeing. But now I see, that there are people who can see us not by separate components, but the sum of them. thats why I’m in the perfect mood, and I’m having great Easter. And my mood affects my family in a really good way.

Now my wishes:

I wish you the happiest Easter time. i wish you that all the cakes would end up on taste buds, not in adipose tissue. I wish you dry Wet Monday (i hate changing clothes several times a day) and good people around, who see the sum, not components. 

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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:)

 

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;)

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!