adnan-hafizovic
Forum Replies Created
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To get out of monotony, start with some small things; for example, I go out when is nice weather and I park along the road in my neighborhood and read a book, and usually when a neighbors come back from work they stand with me to talk a little .
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One of the reasons that we have problems with the prostate is that we do not have a wife. This is a joke but true.
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I go to dentist when I must,but now is problem for me because my denstist moved in USA so I must find new dentist who has ordination on the ground floor. This is a big problem for me because most dentists have an office on the floor, but I have noticed that one dentist is on the ground floor.
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I love honesty in love relationships, and if a person does not want me, I like to directly tell him that he or she does not see himself in a love affair with me. And we with SMA need to have great support from family and friends that we also need someone who will love us and whom we will love.And most of our parents are overprotective and this is one big problem.
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I done same things like you Halsey,was on porch and I deep breathe.And I really saw how much fresh air I need.
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It is best to live in own home with an adequate number of caregivers, but it takes a lot of money. Nursing Homes are one of the solutions, although many in Europe, for example, leave t house to someone and that perso take care about him until the end of his life.
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I’m lucky I was suffering from pneumonia only twice in my life when I was a child. Although this winter I had twice a slight throat inflammation, but it’s nothing compared to pneumonia, which takes the lives of many people with SMA.
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Ryan, you’re indestructible.
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Of course it is stressful for a life partner to be a caregiver for 24 hours, that this person should have a little freedom, rest and therefore it would be good to have an additional carer. I am lucky that at this moment I do not need care for 24 hours. But Kelly again I liked to have a life partner like yous, he shows it with all attention how much he loves and respects you.
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I hoped that Kelly Miller will comment these theme.Another good example of good relationship between person in wheelchair and healthy person.I also think that if I have a wife that wife would be my main caregiver.And I don’t see anything bad in that.I think Ryan until recently your main caregvier was your grandmother,like my main caregiver is my mom.And if my mom can be my caregiver,why would not it be a woman with whom she would be married?
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Whatever we take the mattress, we will again have the need to turn someone on the other side.
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Hi Jennifer I have same type3 and I also walked only few months.And about these group,here you can find a lot of informations about SMA and cures for SMA,you know about Spinraza and Zolgensma.And I’m from Bosnia and Hercegovina that is one small country in Europe.
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When I mentioned Hollywood reallity is that movie companies look of course on own profit,and realistic and true stories are not too much profitable.And I finally watched movie ˝The Upside˝and its not bad movie.
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This is an interesting topic. First about the work of people with disability. It has people who can work, and who can not, for health reasons. Both people get the same amount of money from the state, and that’s not fair. I’m in the wheelchair and there is a persons who can walk and can do different types of jobs, and they get the same amount money of the state like people who are in wheelchair. Is that fair? Of course it is not. And because of that, we need to use those days, not to wear T-shirts with the SMA inscription, but to talk in the media about this disease and how the state could and should help people with SMA.
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I love someone when someone asks me about my illness, here’s an example. Some years ago, my neighbor, who was about ten years old, asked me what I was sick, and I told him, and he told me that I was lying, because he his mother said I was suffering from a childhood paralysis.
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I never do sleep study but I agree that we must do that.If we don’t good breathe in the sleep we will tired during the day.I noticed that on my skin.I haven’t so much problem with breathing but sometimes I feel that fatigue due to lack of oxygen,specially in the morning.
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When you already live in a country where is Hollywood, why does not one try to write a good script for a movie, of course,in wich main character woud be person with SMA.I have a lot of themes about that but I’m not so good writer,lol.
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No I haven’t try but I’ll try with that.Thanks
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I tried with a shampoo “Head & Shoulders”that was good against dandruff, but my hair began to fall off, so I decided to have a little bit of dandruff but also have hair, lol.Brianna it is ok now but before that was really big problem with me and because of that I totally understand you and your problem with acne.
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Let I also write something about this. I must admit that I have no skin problems. I do not use anything special, I wash my face only with water and I use only after shaving aftershave losion and Nivea creme.I think when we have a problem with skin that it shows us that we miss something, some vitamin or mineral.My problem is dandruff and I’m fighting with it.
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I’m glad you watched this movie. I wrote about this film, I would just add it, about whether this role should be played by a man with dissabilities or not.It would be good to have actors with disabilities, but it is good again such roles are acting famous and quality actors like Joaquin Phoenix.
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Of course Kelly,I always try to satisfy with small things, but sometimes in life, we all have so many problems and temptations. And in such a situation, we can not have those little things that make us happy.
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These high prices of Spinaraza and Zolgensma just show how they are pharmaceutical company think about my own profit. I’ve read many books on conspiracy theories, in which I read that pharmaceutical companies invent new diseases and viruses. It seems that in these books there are truths, sometimes I wonder why monkeys, dogs, cats do not suffer from SMA?
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I also have a problem with the cold, but since last year it seems that I have a little better circulation thanks to a device called vitaphon. It is a vibro-acoustic device and this winter was really not that cold for me, although there were a lot of cold days in Bosnia.