adnan-hafizovic
Forum Replies Created
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DeAnn when you mention how they’ve forgotten you for class reunion,that’s the problem we face, that many people think we do not need to have a social life. Even those who organized the party probably thought that you died.
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Thanks DeAnn.
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Of course I hope, hope last die.In most countries, approval isn’t problem, but a high price of Spinraza.
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Whoever has the chance to use Spinraza should use it and risk it. I probably will never have such an opportunity as many in the world.
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I completely agree with you, Michael, how money is spent on a stupid thing in all countries in the world, it’s enough to see how much money is spent on the army and weapons.And how do you end up with balance exercises, Michael? That exercise for me was hardest, I always had and have great fear that I would not fall.
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To me is also, the loss of power in my hands was especially hard. Particularly to me, as a teenager I had strong hands, in the third year of my life I stopped walking, but I could crawl around the house, I could cross myself from the bed to the wheelchair.I was getting weaker, although I was not so worried. I only felt that I was getting more frightened,it was when I start to feel that I loose ability to swallow and I was a little scared, but thank God I do not know how I got the feeling that I could swallow again without any problems. I worried about other things, like when my father was suffering from Parkinson’s disease, eventually he died of this illness six years ago. Or when my mother suffered from cancer, but thank God she had two surgeries and chemotherapy, and now she is well .And honestly, how old I have this little fear of what my life will be like if my mom dies. But in the end, there’s always some sort of solution.
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Good video Michael,full of usefull details.
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The most developed countries or richer US states are in the cold north. And going further from your family is a little risky. Still, we must to have somebody in the vicinity. Only when you would marry someone from the warmer regions it would be the best.
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When we talk about our psychic state I have long time ago noticed that if we are physically strong then we are also mentally good. I noticed it when I was young and relatively strong I had the feeling that my whole world was. Because of this, we often have depression and anxiety.
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I do not have an original sling. I found some measures of sling on the internet and on the basis of these measures one tailor made it and I’m really overwhelmed with him. Specifically, the sling goes to my head so that I can lean my head on it.
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DeAnn I completly agree with you what you said about The Upside.I like also that you showed how the cinema is adapted for people with special needs and I really like it,very simple and usefull.And not expensive.
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We all have little wishes and Halsey I have similar wishes like you specially I wish to have family,one or two kids and nice wife.
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I have same opinion,for lifting is better male caregiver but women are more gentle.
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I also like these comment from Ben Mattlin,and when it is already mentioned that there are no actors with special needs, I recently watched a Romanian film˝Touch Me Not˝a film that won the first prize at the Berlin Festival 2018.One of the actors is a man with a SMA has scoliosis ,cannot sit, and there is a scene in which he make love with his girlfriend, where you can see him naked.Film may be too erotic, but again for praise.
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Kevin who are better caregivers, males or females?
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We think too much about others, for example, I do not want to burden my parents and so on. So our problem is to do some small things like going to a coffee shop. We need to think more about ourselves and our needs.
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Brianna we have same problems,just a lot of people with SMA they do not want to admit they have psychological problems.And all these mental problems come because we want to make something from our life, but that’s hard going.
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Kevin you right,lol.Best actors are weird people like Penn and Leto,and it would be very interesting to see some actors with SMA how they acting.
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About Legit tv series I think it wort to watch it.
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You have luck Kevin and it is easier for you,when your caregiver knows what you need.
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Ryan your aunt give you and us few good tips,for example that we need to find two or three friends outside family,but didn’t say to you find some good wife?Some people say the best friend is husband or wife.
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Eat salads when you lunch ,some fruits,every day eat different fruits,that it.Did you try mix different vegetables and fruits in blender?
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I always get up in 8:30 AM and while I finish all things I need two hours so in eleven I’ve finished morning duties.I like get up early,we have old proverb ;who get up early two lucks grab.
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It would be good when we find an adequate caregiver, that this caregiver is with us for a longer time.But that is hard.