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Hints on how to handle a STROKE - written by a survivor not a victim

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Downloads - Brought to you by Karen Wisse, compiled from suggestions from myself and other stroke survivors. Good luck to you and get on with smiling and being free from your former struggles - yes enjoy your new struggles, you've got the time now. Be loved and let people in and let them help with love not pity.


 

404 errors are continuous.

"My sensory perception combined with virtego is a heroic journey down a moon lit pathway."

That's our brain on - well everything after a brain injury. It gives constant 404 errors. Can't speak properly, can't act correctly, can't see things in perspective, can't feel appropriately.

There is nothing we can do about it. Lost the piece of paper that reminded me of what was urgent, groceries, list of things to do for the day. If I am phoning up a list of tasks on a call sheet - I'm confused and don't know which one i've done last unless I write notes. Cross things out. That gives me a great sense of accomplishment. Then I get up. Loose the pen. The remote. The cup of coffee. My sunglasses, the keys. I don't recognise things instantly anymore so on my hunt, may touch the lost item, and still do not see it. That's cognitive impairment, and really frustrating.

Had the pen somewhere. Hid the notebook, and looked in the usual place; but isn't where it should be, where is the lid? And it makes us feel foolish. We just screw up over and over. Can't pay bills on time as all our safety mechanisms to get stuff done on time, we get wrong. Aboulia kicks in, depression kicks in, not a thing we can do about it - SO DO NOT Remind us of our mental duplicity.

Last week I have to pay the power bill, no drama, I had written it in my diary wrong, I had checked it three times before committing it to pen and paper, and was so proud of myself for knowing I had to get it write, would save $40 by getting it right and paying it on time to get the discount offered. I had it wrong and had to pay the extra cause it was my fault. No matter how many times I had checked it, it was dead wrong. Almost had me in tears after I realized. I have no money, stuff all any how and $40 was the sum total of a huge amount. My bills exceed my income by ten fold and wasting money is not a thing I can do without huge stress.

When talking - I will search for a similar word for say chair and say stool, No drama right? When typing I can auto correct but when speaking it may just stop - hit a wall and panic. 'Aphasia. It's an impairment, I can sound drunk whilst I stumble upon the wrong word, or get exhasperated. Cry. At the drop of a hat. No intentions just a new default setting of panic over minor things, subconsiouly it's damaging my soul.

The rerouted thought pattern often gets lost. The thought pattern being a car; it's driving around aimlessly and never arrives. It finds the road blocks and maneuvers around them, very carefully, never denting the car, never out of control, yet still not finding the correct destination, and as I loose my impetus , I do eventually fail. Compounding my inability to pay for things, my loss of my drivers license as I'm told it (the worst pain imagainable) could occur again at any given moment. The survival often ends in torment, financial, emotional and physical.

I was putting stockings on the other day for a job interview and caught the foot, I was sitting on my bed: had the foot and threaded the stocking on it (I am female) and forgot to take the hand out , so I am sitting there hogtied on my left side laughing at the stupidity of it. I couldn't do the obvious and my movements are limited. I can't feel my limbs like I used to, so they don't' react as they use to. Putting on stockings is a ten minute affair - that gets complicated.

I can now get dressed in jeans easily - they stand on their own and I will just balance and aim a foot. I may lean on the wall to zip them up but way easier than a skirt and stockings.

High heels are equally ridiculous. My balance is romantic - I will take the arm of my companion and we will look like a loving couple.

If I walk on my own it better be flat ground without obstacles, I don't do obstacles like moving children or stationary toys and mess - to walk around something it feels like I will tip up so I must lean on something to get around it. No shadows, they too are deep crevices, obstacles to be feared, and my sensory perception combined with virtego is a heroic journey down a moon lit pathway.

Everything I do is on my own, I am capable of most things except finding the money for the bills. So best I get off this computer and go write a book. All I want in this life is to live with love and joy. I don't do complicated. I do love. That should be simple.

There are many similar survivor stories: individuals released back into the community to find no support, no back up and total loss.

Google Stroke Blogs. You will find a huge divide between what is available, and what we need. In New Zealand a therapist will be given a pass: end of treatment if you managed to not fall over on assessment. What I want thou, is my balance back, my limbs to feel mine again and the damn things to work like they did. That's not their task however and you will find your self given a passing grade and handed off their books if you a: don't burn the house down and don't starve to death that's a pass as well and home help will not be provided.

Here is Deans. It's comprehensive and a great place to start. Another is in the UK, created and updated by stroke survivors.

 

  1. Be supportive, feed us facts
  2. Do not say ''Your Repeating Yourself''
  3. Praise with out being condescending
  4. Do not repeat yourself, we are not children
  5. Help us do not pity us
  6. Show us, Write things down for us - cross things off
  7. Find us Solutions - write them down
  8. Manage our stress - our first response will be Anger - it takes 90 seconds for that adrenalin to disipate
  9. Be realistic - remember our emotional age may now be two years old
  10. Give us credit NOT GuILT
  11. Accept our changes and challengers
  12. Take a break - for both our sakes
  13. Remind us gently about our hobbies and past times, put on music
  14. Help us to set realistic goals
  15. Be Kind or go away and give yourself credit, go back to your own hobbies and show us your progress on your own fun things
  16. Find us a community - online perhaps
  17. Don't forget to laugh, and avoid burnout
  18. Listen, never preach
  19. Fill in the Fridge note pad on which medicines we have taken, and place the ones we still need on the left of the shelf, with the ones taken on the right perhaps - find a solution that works for you both
  20. Write on the fridge notepad what is next