Category Archives: my stroke

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About having things done for/helping stroke survivors

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When disability after stroke (and every other kind to tell the truth) comes into being it is new for everyone. For a person affected, for his/her caregivers. For friends. It also brings an important question:

should we help a person with a disability with everything?

The answer is super easy: NO. If the stroke survivor has contact with the world and has any possibilities to move (even in a limited range): DON’T DO THAT. 

If you want to help a stroke survivor to recover, don’t.

I admit. Sadly, this issue is not easy for both sides. To some extend it is easy to serve, feed, put in a fix, open the bottle, move in a wheelchair, yes. But on the other hand, such help doesn’t give any possibility to the sick person to mobilize to the painful process of recovery. 

Look at hospitals – the hospital bed tables are usually placed on the affected side of the body of a Strokie. It is about encouraging the patient to do things himself… To tell the truth, I’m not sure whether it works that well. In a first hospital, I was placed after stroke, I tried to use my right hand anyway (my right side was affected). Always. I even got a bit cunning. For a few weeks I was laying next to the window, so I used a windowsill as my additional table and storage area. In some hospitals (later on), nurses would scold me for that, but in the first one, I don’t think so (i don’t remember for sure, though). Continue reading

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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

in my opinion my stroke stroke survivors

I’m in shock! Fifth stroke rebirthsday and traditional list of changes for better

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Kasia - lewaczka.pl na Cyprze. selfieAmazing. 5 years ago today I had a brain stroke. So now I am 85- year old woman (i have many needs of pensioner), 30 yo. woman (in my ID), 5 yo (counting from my rebirthday), and 14 – because of my silly attitude to the world. And I’m alive.

If you happen to be my follower, you know that each year on the 21st of December I publish a list of things that changed in my life for better. If I don’t see them, I force myself to find some. 

After 5 years I know, that life after stroke consists of both violets and shit, and it is worth finding violets. Diseases are overwhelming and bring mostly sorrow and pain. This time of the year I am ready to acknowledge that I’m alive. that’s pretty cool;)

Today is no exception. I’ve just returned from holiday, sat in front of a computer and I’m thinking about last year. Except for the bad beginning (the illness of grandpa), this year was not that bad. It was mostly about laughing. The year before had been really bad, so my list was very poor. Now it’s easier. A lot easier. then, ladies and gentlemen, 

What changed for better after my stroke?

Continue reading

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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

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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

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.

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in my opinion my stroke Uncategorized

Workplace wellness: how your job could be better (thoughts after the conference)

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Again, after 2 months (sorry, these were really busy and difficult) I’m back to  Sharjah Forum and it’s theme.

I participated in the workshop about workplace wellness.

What is it? Wikipedia says

Workplace wellness is any workplace health promotion activity or organizational policy designed to support healthy behavior in the workplace and to improve health outcomes. Known as ‚corporate wellbeing’ outside the US, workplace wellness often comprises activities such as health education, medical screenings, weight management programs, on-site fitness programs or facilities.

and these words depict pretty well what we were discussing for quite a few hours but not quite what I was expecting. My thoughts on data I got bit chaotic but frustrating. Frustrating, because for me term workplace wellness and its representation aren’t really present in Polish reality. As a society we manage diseases easier, but get unhealthier, so we need something attractive to have a will to keep our bodies in a good shape. Implementing wellness programmes is a great idea. Which limits us, but on the other hand, saves us. Welcome to the modern world.

Leaving aside all philosophical divagations, my thoughts are simple.

For start: I can’t really recall many companies which would implement workplace wellness. In my Polish reality, it’s just not present. Sorry.

I admit that I’m not familiar with big corporation’s policies as I haven’t worked in one.

But still I have friends and I listen to stories. And how many examples I found? Right now, I can think of like 2-3 that could have been counted. A few days ago, for example, I had a chance to speak to a woman from Amazon and she mentioned such practices. To which extent do they care? I have no clue. It was a birthday dinner, not a work, so we left the topic quickly. But I know that they have, for instance, competition in losing kilograms between teams. Group one, which, in my opinion, makes it healthier*.

On the forum, there were people from organisations and companies who try to promote that or start such programmes. That’s a nice approach. There was a woman from HR department in a big company and she shared briefly their story. They started with nothing and people wouldn’t even care to know the new opportunities and possibilities. Only when they started with fun stuff. First, company parties with healthier food and attractive things to pull out people from behind the tables. Darts for instance. Then they started such things in office hours, implementing workplace wellness programs with very good results. Continue reading

my stroke Uncategorized

Sharjah – Dubai. NCD Alliance Global Forum 2017. Turistic entry;)

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I was telling people that I had been a participant in the conference of sick people in Dubai, but it wasn’t the conference of sick people in Dubai. It was the NCD Alliance Global Forum 2017 which means it was a forum of professors, NGOs, politicians, people advocating for patients and sick people themselves.

I came back. Now I’m able to tell you how it went;) Of course, I have plenty of thoughts on a subject of the conference – NCD Alliance Global Forum 2017, but I have the feeling that my readers are equally interested in the basics. how did I handle the trip? Was I very tired? Did I skip classes?;) What did I see in Dubai?;)

Warning: it’s gonna e a long entry, so I divided it into few parts so that people having difficulties in reading could read it part by part.

Trips

Plenty of you was asking me about flights and journey itself. Of course, I had to fly to UAE. Two flights each way. I didn’t experience any problems connected to flying. I mean none. Nothing hurt, even my ears weren’t hurting me during landing. After coming to the hotel I got a headache, but I bet the reason was exhaustion, not change of height:)

I know that plenty of people who suffered the brain stroke has huge problems with flying. I feel much better in a car than on a plane. In this case, it was the same. Sorry mom, the drive you gave me to the airport was much worse than the flight itself. Taxis, cars, buses were my nightmare. No exception in UAE. Sorry about that. Continue reading