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Expenses of chronically sick people

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Inspired by an article from themighty.com I decided to write about the expences of chronically sick people in Poland. The situation is quite different from the American, so I think its worth to write, even though the topic was the same. Poland is different. Europe is different. Basically everywhere you have a public health care, better or worse, and, well, for better and worse.

This text doesn’t describe strokies’ expenses, I’m going wider. So:

what affects the wallet of an ill person?

  1. No work – many of chronically sick people do not work or work for a limited time. Or need to take days off  (hours off) to go to plenty of appointments. The loss of income seems to be basically the biggest factor that decreases one’s economic position.
  2. Cost of meds – in Poland they are partly refunded. Not all, not for every disease. So, for example, you can pay like 30% of the price, but on other meds go normal 100%. And, from my experience, these are the most expensive ones. For example my meds for lupus. No refunds, 100% of the price of the most expensive drugs i am taking. Another thing in Poland is that often only older generation drugs are refunded or even available. About availability: i go to Germany to buy one of my lupus drugs. they are simply not allowed to be sold in Poland. But they are way less harmful to me. The choice is quite simple. So each time I need a refill, my parent need to go over 50 km to German pharmacy (I don’t drive). Good that at least that’s the occasion to buy better washing detergents.
  3. Physiotherapy – it can be surprising, how often you need rehabilitation. So many not obvious diseases demand rehabilitation to keep patients in a decent state. Sure, rehabilitation is sometimes refunded. Sometimes. At least in Poland, access to physiotherapy is bad. That means that you pay. If you’re lucky, you pay after using the hours you’re entitled to. If not – you just pay. If you’re in a bad position, you’d just don’t have the physiotherapy at all. That means you are sicker than you should be. You could be healthier. But you’re not.
    At the moment I don’t have any kind of rehabilitation. I can’t afford it and I don’t want to ask my parents for more money.
  4. Seeing doctors – that’s tricky here. In theory, you have access to every kind of specialist for free. And sometimes it’s fairly easy to see them for the first time. for a visit to the office of random (really random, I found one that I didn’t have to wait for months) I waited for less for 2 weeks. But a first visit at the rheumatologist was scheduled in more than… 2 years. Yay! Guess what I did? I paid the same doctor and I went to her after a few months. Huge difference. There are many kinds of specialists that don’t have free spots for months, years ahead. Even when you pay.
  5. Travelling – I live in a big city, so most of medical procedures are here, within a few kilometres, but there are people who need to travel far. and people, who need to travel with a carer. I know one history of a woman who travels more than 500 km with her daughter to have her baclofen pump refilled. For me, it was quite complicated. Strokes happened out of my city, so whole treatment took place out of Szczecin as well. For me, little change, for my parents – huge expenses. Huge.
  6. Equipment, both mobility and adaptive. Again, in Poland, they are partly refunded, but if you want to have something more advanced, you need to pay out of your own pocket. for example, I’ve heard the legends of having the bathrooms adapted for the wheelchair, but I consider them real legends. But on the other hand, the cheapest wheelchair for my grandpa was refunded. Good, that we didn’t need much more.
  7. Higher bills. Do you use more water or electricity? You pay. Simple.
  8. Nursing and caring – Woah, that’s a huge one. especially that the expenses are big, refunds small  (or there are no). Usually, severely sick people here are taken care of family members. So it can limit also their income. But it’s not really only about full time caring. Sometimes sick people need help in cleaning, shopping or going outside with someone who would assist them. Expensive, expensive, hard.

Maybe there are more points, but to tell the truth, these are main. I struggle with some of them (or maybe… my parents do, because its them who pay for most of my medical bills).

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What happens to your dog when you are taken to hospital?

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It’s been bothering me for quite some time.

What happens to your dog when you faint (have a stroke, lose consciousness, weaken) on the street?

What happens to your pets when you live alone and paramedics take you to the hospital?

Does your friend stay on the street?

Die alone at your house?

Luckily, NO.

Arek from the Ratownik Medyczny site explained to me how it works in Poland. There is a simple procedure for that.  Paramedics call Police or other municipal services and they take a pet to the animal shelter or vet. both in the street and house scenario. At home, additionally, a dog or cat is being locked in the bathroom immediately, so that people who bring help were safe. And that’s all!

Arek told me also that he hasn’t seen such a situation, so this knowledge hasn’t been implemented to the practice. Of course, it is great but… it’s hard to believe, isn’t it?:)

the dog and the cactus

in my opinion loosing weight my stroke rehabilitation stroke survivors strokes

Secondary prevention after stroke

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regardless of whether you are a stroke survivor, a caretaker or just a good friend, the “never again!” thought will cross your mind sooner or later. This thought will transmute into fear once you are told that chances of a second stroke are pretty high. You can reject and deny it, you can agonize about it, but the most reasonable thing to do is try hard not to fall ill again.  A haunting vision of a second stroke (and every successive stroke) gives most of us sleepless nights.

Frankly, can we be sure that it will never happen again? Can we minimize the risk of a second stroke? Absolutely. Preventing the disease from recurring is called secondary prevention.   

kasia lewaczka.pl in the truck full of carrotsIt’s much better worded at the portal: PZH

Secondary prevention (2nd phase) is about early diagnosis and prompt intervention in order to arrest the disease process – and thus, about identifying risk factors and their elimination. It is addressed to persons at risk and encompasses, among others, screening tests like screening for breast cancer (mammography) or cervical cancer (cytology), periodic check-ups, control of risk factors, counselling.

It is commonly divided into secondary and long-term prevention – and the latter has to become a regular part of our lives. However, this doesn’t mean that every single day of your life your mind will go “oh gosh prevention prevention”. I believe, we can’t go on like that:) What I mean is rather the need to integrate new habits into our lives.

In the case of stroke survivors, the secondary prevention process starts (at least, should start …) in hospital. From the very beginning we, along with our closest family, are instructed what to do, what not to do, what to eat, what to avoid. Is it helpful? Sometimes yes, sometimes not too much, it depends on the medical staff. In some cases, doctors find the time and attention to give us some useful advice, sometimes not. How do I know that, me being the lucky one that, in most cases, received sound advice? I know it from your emails, and believe me, over these last 5 years (yes, this May it’s exactly five years since my first post on Lewaczka.pl!) I have mailed and talked to many people who felt like they were wandering in the fog, surrounded by darkness, after they had left the hospital.

The hospital discharge form contains a line which says: medical recommendations and patient care recommendations. I can’t recall anymore whether they come in the same line, but this is where the attending doctor puts what should be done next, e.g. consult a specialist in XXX, further diagnostics  …Generally, what needs to be checked and treated. Patient care recommendations, on the other hand, can be detailed or limited to just three words, e.g. “Mediterranean diet recommended”.

Ok, ok, let’s get to the point. There are a few basic rules to follow to help you regain health, strength and prevent strokes from recurring. And so

How to prevent a stroke from recurring – basic rules:

  1. Quit smoking. Sorry, chain smokers, and you, social smokers! Cigarettes are the biggest (along with age) risk factor for stroke. So start here. Quit. I did:) And I believe you too will manage to quit. Fingers crossed!
  2. Take your meds regularly – unfortunately, most probably, we will take some of them (e.g. anti-platelet drugs) until our very last breath. Sad, but true.
  3. Diagnostics and treatment of other diseases – knowledge about diabetes, hypertension, blood coagulation diseases, arrhythmia, aneurysms etc. – gives you a chance to treat them in time or limit their effects, including – surprise! – the chance of another stroke:)
  4. Regular medical checkups. We all understand their importance.
  5. Weight loss – insert a sad face here; I have been fighting this battle for years and at the moment I’m the fattest I’ve ever been. Nothing to boast about, and a lot to worry about.
  6. Move more – physiotherapy won’t do it all. You need to move more at home, outdoors, just about anywhere. Of course, this is super difficult for bedridden patients, but those of you who use a wheelchair or are able to walk, can move more. Although I’m doing pretty well, sometimes I sink into depression and I can’t drag myself out of bed. Fortunately, I found a solution. I got myself a dog! So now, I have to go on walks a few times a day, even when my body is heavy like a sack of flour and every step feels like a Mount Everest climb. And now guess: who walks whom?
  7. A healthy, well-balanced diet – yes, diet is very important. I mentioned above the Mediterranean diet, but generally it’s about eating healthy – fulfilling one’s nutritional needs in a balanced way, including foods that reduce the risk of stroke. Take vitamins! Vitamin deficiencies are one of the stroke risk factors.
  8. Of course, those of you who are able to exercise, would benefit from 3-4 cardio sessions a week, but now I can see some of your faces saying “yeah, sure”. It’s good to do that routine, but sure – after TIA your workout is limited to dangling a cane – so what you can do then is just a walk, some stretching or swimming. Let’s stay reasonable.
  9. Stop or cut down on alcohol consumption. Sorry!. After my first stroke, my attending said to me, roughly: „Miss Kasia, stick rather to a wine of glass with your lunch and not a bottle of vodka at a party, ok?” I’m fine with that:) These days I don’t drink at all because of the antiepileptic meds. From a party girl (university days) I turned into a teetotaler. And I’m fine!:)
  10. Less stress – yes, really. Again it’s something that’s easy to say, difficult to incorporate in our lives. By the way, there is no hard proof that stress leads to strokes, but… ongoing, constant stress undoubtedly exhausts human body, and according to some doctors, increases the risk of stroke.
  11. Drink water – plenty of it – it’s incredibly important for our bodies. If I remember right, research shows that 60% of patients admitted to stroke wards is dehydrated. And in such case, blood becomes thicker. You well know what it means for patients who were hospitalized because of a thrombus (blood clots). No need to convince you any further how important it is to stay hydrated, right?
  12. Change your lifestyle – I find this point hilarious, as this one is usually a summary of all the previous tips. Cause a change of diet, quitting smoking, almost daily exercise etc. sounds like a revolutionary change, right?

A lot of new habits need to be incorporated into our lives, but nothing is too much or too difficult to prevent another stroke.

The list may look daunting, but in fact it can be shortened to just two points: take care of your health and change your lifestyle. The rest may be intimidating, but let me tell you why it’s just a first glance impression.

All of the above things are interconnected; one stems from the other, and the other from yet another one. And still, the most important thing is to make changes in your lifestyle.

Ultimately, it’s about creating new habits and routines. It’s tough, but doable. And yet, if you ask me if I have changed my life to incorporate all of the above points – I have to say, not really. Not all of them. Unfortunately. But I’m still working on it! I know how important the new routine is.

PS

This post is based on my experience and input I found here:

https://neurologia-praktyczna.pl/a517/Wtorna-profilaktyka-udaru—–nowe-wytyczne.html

https://podyplomie.pl/medycyna/31904,prewencja-wtorna-udaru-niedokrwiennego-mozgu?page=4

https://journals.viamedica.pl/polski_przeglad_neurologiczny/article/viewFile/20071/15774

https://www.mp.pl/oit/krazenia/56313,rozpoznanie-leczenie-i-profilaktyka-wtorna-udaru-niedokrwiennego-mozgu-i-napadow-przemijajacego-niedokrwienia-mozgu-wytyczne-european-stroke-organisation-2008

KTYKA WTÓRNA PO UDARZE MÓZGU

 

my stroke rehabilitation stroke survivors

Me and Tara – I love my dog so much!:)

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To tell the truth, since I moved out of my parents I have wanted a dog. very much. very very much. and when I decided on having one, I started searching for my new BFF. I overcame many difficulties like price  (when I was looking at purebred dogs), the size (my puppy to be from the shelter suddenly got huge, and I really need small dog), and changes of the time of pickup.

Now I have a dog. Three months old dachshund which has just discovered that the walls can be bitten as well.

I fell in love immediately, but it does not mean that we do not have problems. Continue reading

epilepsy my stroke Uncategorized

I had a fantasy of driving with a driving instructor

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And I dropped this splendid idea.

lefthandLately, I’ve sat behind the wheel of our car. My brother encouraged me and, I guess, he’s been regretting this move till today.

I was supposed to drive about 20 meters and park. Nothing complicated?

You couldn’t be more wrong. I just forgot how to use a car. I forgot about the existence of accelerator. Actually, I think that I KNEW that something was missing, but I didn’t know what.

Anyways. After a while, with the great tutor next to me, I started to drive. And I parked.

Then I had an idea: what about the supplementary training of driving? Not to come back on the roads (epilepsy…), but for fun. It would mean driving with someone, who could stop the car if necessary.

My fear is strong. would brakes save me from such thing?

And remember, that my TIA (ministroke) happened in the car.

I’m scared. So no driving. No driving until I’m sure about being safe from seizures. Let’s wait and see.

my stroke rehabilitation

Parasport, my my disability, my doubts.

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And if I am too healthy? (((;

shooting range comptetion shots Sometimes this question bugs me. Unbelievable. But only in the context of shooting.

I’ve been shooting in the sports club for a while now and it became my best hobby.

It is funny, astonishing and worrying at the same time.

I`ll explain to you what it is about.

Parasport (a so-called sport done by the disabled) is a category for the physically disabled. I hadn`t known about it until I started to fix papers for an international competition which was very important for me (I write about it here) – then I realized that parasport is a category for people without a leg, without a hand, with paresis, paralysis, spasms and so on and not for those who have problems w chronic tiredness, problems with reading or cognitive problems, with aphasia or mental impairment. Simply that.

And me?

Well, my physical disability expresses with subtlety – I don`t have a normal feeling in my left hand, I still have impairment of my left hand which is a stiff. My left foot toes still switch form spasms to bending upwards. Sometimes, when I don`t remember to remember I start to limp a little (grrrrrrrrrrrr).

Once, a friend from my club told me that you cannot see anything when you look at me. And it is true. Continue reading

my stroke stroke survivors

Insomnia after a stroke – our common trouble.

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Well, unfortunately. Stroke survivors, in this sphere, are in the doghouse too. Insomnia after a stroke is more common than among healthy people.

Who would have expected? ; )

You know what? I am writing this text at 5 a.m., so there is a grain of truth in it. : )

It`s our tough luck. At last, you have a little time to sleep off toils of life after a stroke and over half of us suffer from insomnia. Studies have shown that stroke survivors generally:

  • fall asleep with more difficulty (mememe!)
  • wake up more often (also me!)
  • suffer from a lower quality of sleep (probably me…
  • fall asleep for a nap harder (is it me?).

Ok, I admit. I had problems with sleep before the stroke too. But periodical. Now, if I sleep through the night, I jump (mentally of course ;p) with joy. Continue reading

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Well… I got a job. I lost a job. That’s life

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lefthandNot easy come, but easy go. I`ve lost my job.

Exactly 3 years and 5 months after the stroke I took my first job after the stroke. Almost exactly 3 years and 7 motnhsafter the strome I lost it. My 3-month contract for a trial period is not going to be renewed. So my first job after a stroke did not turn out to be such a success as I had counted for.

What went wrong?

Was it a false start or had I waited too long?

What was a obstacle – a hand or concentration?

Too many naps or maybe too few?

Was it me who failed?

I would like to have answers for even a few of these questions.

How do I feel?

Well, you may expect that not really good. I just feel that I disappointed myself. And that I did not manage. It may be true and false. I see a lot of fault in my failure on the firm`s side. But let`s be honest: if I had been a worker of the year, I would probably not have lost this job. If I hadn`t made mistakes, they would not ave written I made them. Simple things. I am analyzing everything and my head is unfortunately full of questions as well as reasons, arguments, words both comforting and blaming me, the firm and the whole world.

I have a sense of failure. I would have it after being fired from any job. It`s not something I could ignore by shrugging arms. It just isn`t.

I was obserinv my progress at work. And I am really glad with it.

It`s turned out that in my case job after the stroke is not impossible.

But it`s terribly difficult.

However, I had not been able to do more.

I hope I will not look for next job for another three and half years.

 

my stroke stroke survivors Uncategorized

life after stroke – conference meeting

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Again crazy week with the even crazier weekend.

I think that I should be prepared for unexpected by now and in a way I am but from time to time I have small pinches of the feeling which I like: yaaay, my life isn’t as boring as I usually think!

anyways. on Tuesday my fellow strokie, Louis Gustin, invited me to a conference(meeting, whatever you should call it) to Warsaw. As a proper yes-woman, I agreed immediately, not even thinking about it. I thought that it would be pretty cool to meet Louis and even cooler to find out more about

life after stroke.

Continue reading

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I hate my birthday. But it’s a good time to wrap up the year

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rebirth, stroke anniversary, hospitalEvery year on 3rd of January I wake up in an extremely bad mood which doesn’t leave me until midnight. Typical birthday blues. I try to have a full agenda, but this year… I had a migraine again. Vomited in the medical laboratory, the world was more painful than usual.

However, my birthday is the perfect time to share with you successes and failures of 2017. I’m gonna use numbers.

My first hero is 2:

  • 2 amazing months: July and November, when I felt well. They were full of joy, warmth and peace. Sources of their awesomeness were very different from each other but in the end, I spent two months almost without pain and depression, cherishing normal life
  • For the past two months, I haven’t been rehabilitating myself and exercising. I can’t explain it. It’s about being extremely busy and extremely lazy.
  • I started doing two cool things. I opened my business an started volunteering for poor people and against food waste. Shop gave my unemployed life bit of meaning, work for less fortunate made my need of helping others less meaningless.
  • Two things I’m actually proud of: my Lewaczka.pl blog (this one too;p) and first money earned since the stroke.
  • Two job offers. Nothing worked out of it, I have no clue why, but still: someone believed in me enough to offer me a place in his team.
  • Two brilliant blog entries from a guest star:) In Polish only, sorry!;)

12:

  • Pills I’m taking daily,
  • months since last birthday blues,
  • months till my 30th birthday

3:

  • three new diagnoses. Lupus: most likely I’ve been living with it for the past 10-15 years, not knowing about it, carotid artery dissection – could be the cause of strokes. Lupus, dissection, hole in my heart, I have many things to choose from;)
  • three hospitals I was admitted. All three admissions were planned.
  • For the third time, I was guaranteed social security money. Yay. I’m kind of covered till September.
  • 3 amazing trips. Denmark with a friend, Cyprus with family, Emirates for NCD Alliance conference... All of them were really great. Denmark was like completing lifelong dream, Cyprus nice time with my beloved people, Emirates: oh wow, it was my blog-wise achievement. Big one. I can’t stress enough how I enjoyed the time there.

1:

  • neurolupus, new kind of lupus thrown into my face. It’s about to be confirmed, now I imagine it as a little worm eating my brain and leaving me with depression, dementia and meaningless life,
  • one participation in an event of a big importance;)  well, at least for sick people,
  • new, brilliant psychotherapist,
  • one physiotherapist who has left me for the man. But I can’t be upset about it. I wish her best of luck with him, they deserve perfect life:)
  • One pronouncement saying that I’m disabled. It’s official. It’s good. It gives me a discount for a train. Twice a year;)
  • One magazine cover my face was on. I’m a cover girl;p
  • One sport I started to practice. I’m lousy. But Olympic games are once every 4 years, no worries here;)
  • Foreigner, I’m helping in settling here. He’s a friend and we are very happy to see his life easier from time to time.
  • Epilepsy attack. unexpected. Adding two years to my auto-ban;) (do not mistake with autobahn;p I mean I’m banned from driving for 2 additional years).
  • Website about spasticity I’ve consulted,
  • Day of the retired people I was celebrating,
  • the brother whom I love. But my love starts to be conditional. I don’t love him that much when he puts glass full of water on my back.

15:

  • kilos I’ve lost,

million:

  • of series that I completed,
  • hours in bed,
  • smiles and pleasant things that happened to me,
  • litres of water I drunk,
  • hours of not moving while I should move,
  • interviews I gave. It feels like a million anyway.
  • Minutes of escaping the reality.
  • of good, kind people I have around and I’ve met.

115:

  • texts for my polish blog (!!!). Only…

26

  • texts for an English version of my strokie blog. Poor result.

Zero:

  • of new strokes! None!
  • plans for that years. Many dreams though;)

It was a weird year. Horrible in many ways, but still kept finding reasons to smile. But dear my 29. and dear 2018:

by the way… one of the first songs I learned to play on a guitar. very bad. But for now it’d be perfect. Gotta try!:)