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my stroke rehabilitation stroke survivors Uncategorized

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).

in my opinion my stroke rehabilitation stroke survivors strokes Uncategorized

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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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!:)

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I try to relax my left hand

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As you probably know, I have slight spasticity on my left hand. Not big, but it still sucks.

I try to relax it in a totally amateour way, but it doesn’t really work. It was much easier under caring eye of my physiotheraphist. Being lonlier doesn’t benefit, to tell the truth. I admit: my attempts to make my hand loose haven’t been that successful, but attempts to make it more normal visually and funcion better have been working pretty smoothly.

For example: when I’m knitting I’m careful not to clutch my hand too strongly. It makes me knit slower, but, thanks to this, hand DOESN’T HURT. Yaay!

Same thing when I try to knit (I’m struggling to learn, so it’s difficult to relax, yet I try!)

When I type I try not to point forefinger and middle finger into the sky. They are shaking a bit, hurt, but this way they are being accustomed to more „natural” way of behaving. Continue reading

rehabilitation spasticity

I will be honest: my left hand is in a pretty bad shape

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My left hand has been neglected these days.

I was a guest of a 3 days wedding and the whole trip took me 5 full days. You can imagine that I wasn’t exactly an example of regularity. Yes, I was exercising a bit, but without any tools (for example my beans).

To be honest, I also lost control on my spasticity. My hand is mainly very stiff and my fingers are pathologically straight.

I  am surprised how bad my hand works on a keyboard. Writing suddenly got waaaay more tiring than a few weeks ago.

My plan is simple. I’ve created new ‚minimal’ plan and I gong to stick to it like crazy.

I will admit: the state of my hand is a failure for me. A huge failure. That’s why I’m expecting improvement over next few weeks.

 

 

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 spasticity

hydromassage (hydrotherapy) of my legs

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2252167949_761a6633ef_oSo far the only thing that helped me with pain of my foot was hydromassage.

I took ot once and im going back tomorrow to make my hand more useful and my foot bearable.

I recommend it. Believe me:)

How does it look like? You put your foot into the special bath, which is like little jacuzzi for legs. and it works and massages you with water.

Before I experienced full body hydromassage, but it wasn’t that effective. I think that masssages of feet and palms separately will be better in my case.

I think i’m going to ask Santa for a boring gift, such little bath for my foot. If it stops my the pain i will so glad that I will forget about boring part of a gift:)5006991825_a69f4f170b_o

loosing weight project my stroke rehabilitation Uncategorized

It’s mine! Why this one?

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I was skeptical towards putting large, unnecessary exercise machine  at home. Elliptical trainer seemed to be unnecessary whim which  a) clutters half of the house, b) is easy to substitute with running, walking and such things. Even motivation from getting back part of the cost from National Disabled Persons Rehabilitation Fund (PFRON) wasn’t enough for me.

And then I was forced to use it on one of my rehabilitations and actually fell in love. It took 10 minutes of coordinating my hands and legs, or left side and right side (it wasn’t;t easy, I must say)> Silent, not too big, machine, I was waking on it with the speed higher than my running average speed, during just 10 minutes I was sweating more than during the 1 hour march. And for the first time from ages I actually felt muscle sores (which I really enjoy having).

In the end me and my parents found the machine that suited both our needs and funds. it was shipped to us and my mom put it together during one afternoon, I stood on it and…

elliptical-trainer, cross-trainer
I felt differently, the cross-trainer felt differently:( Coor dinating part went just well, only about 5 minutes;) After that the hard part came,  though. After just one minute I felt that I’ve had enough. After 5 minutes I  took a water break. I thought, oh come on, I’s shame to quit before 10 minutes. So I walked slowly, and finally made it till 20 mins and I took shower. It was just tough. The next day I had two workouts, in the morning and in the afternoon. Snail pace, I would say, but I managed to extend workout time. And again I fell in love in my brand new machine. For past week I made only two days cross-training free, one to regenerate muscles, second was yesterday (cause Mondays are Zumba days) and I’m happy. I’m not saying it’s easy – actually it’s very hard for me – but somehow I believe it’s effective.

Anyway, I’m talking about my beloved machine, but I failed to explain what is it. Let me fix this mistake.

An elliptical trainer or cross-trainer (also called an X-trainer) is a stationary exercise machine used to simulate stair climbing,walking, or running without causing excessive pressure to the joints, hence decreasing the risk of impact injuries. For this reason, people with some injuries can use an elliptical to stay fit, as the low impact affects them little. Elliptical trainers offer a non-impact cardiovascular workout that can vary from light to high intensity based on the speed of the exercise and the resistance preference set by the user. (www.wikipedia.en)

Now that you know it, I will tell you what benefits I’m expecting for myself.

Rehabilitation of my left hand, because during training you use also hands. You are forced to bend your arm and also straighten it to some extend.
Improving my coordination. Do you know how normal walking looks like?


don’t mind polish talking. I just meant to show you this coordination issue here. You know, one of the features of proper walking is alternating your walking (I really don’t know proper English expression), which is simple thing, that you move forward your left arm and right leg at the same time, same thing with your right arm and left leg. Their are in pairs, I would say. For me it wasn’t so obvious after stroke. I couldn’t master the proper pattern. Sometimes I was even immobilizing upper parts of my body. But elliptical trainer enforces proper coordination. And that is pretty great.

3. Increasing my capacity and stamina. As I lack both of them, now it’s quite important. Believe me, I’m not talking about marathon running, I feel  problems while going to the nearest bus stop too. I feel problems on stairs and everywhere. That’s why I need to work on it in comfortable environment. My Machine is going to help me, at least I hope so.

4. Loosing weight. Or, in my case, stopping gaining weight:D

So far I still moan daaaaaaaaaaaaaaaaaaaaadd, either I’m more sick than before, or I have worse condiiiiiiiiitionnn. And my dad says it’s both. As you are more unhealthy you have worse condition. Ehhh, smartie pants!

I know that this kind of training is not for everybody, but I know also that there is simply no exercise suitable for everybody. I’m just really convinced that my machine is a good  choice for me.

my stroke rehabilitation Uncategorized

the most important tool of your physiotherapy

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krzesło

Why just after brain stroke you don’t work out 10 hours a day non-stop?

Why your physioterapist cares always is sure that you have a chair next to you?

Because rehabilitation is not a gym. It’s not trainihng for marathon. And your healt is the most important. Your physiotherapist know that you have to rest even if you don’t feel tired. Overtraining yourself can be damaging, and consequences might be worse than simple muscle pain.

My Mrs. Magda was always watching me closely when I was doing my workouts. I would always hear „and did you take a break? Too short!”.

I „overworked” myself few times. Once, when I had visitors in hospital and was doing my manual exercises with beans for more than two hours without any breaks. Then, for few days I had problems with using my hand „normally”. It was too tires. Opening it was a great challenge, and before I hadn’t had problems with it! I felt just weird.

Another time was also on manual exercises. I learn’t to knit after stroke and suddenly I told everyone that I would make them a scarf. Great! Was doing them days and nights. And it made my hand stiff, not to say a bit spastic… The damage was done. I’m sure it was not only due to knitting, but for sure also…. Remember,  when you work out, take breaks! Take rest, sit down, put your hand on a table. Don’t overwork, don’t listen to your dad saying „let’s do it 50 times more”.

Physiotherapists have a dreadful task of judging whether moaning patient should really take a break or is just lazy. Don’t be lazy, but don’t overwork yourself. The process of recovery takes time and effort, it’s not worth to spoil it with too much training.

P.S.

Even professional athletes can be overtrained. Really. Resting is important part of most of activities, not only in rehabilitation. Believe me(;