Alyissa we Bosnians like to joke, but of course we pray for Americans, and for all the people in the world.These bacteria don’t like the sun and the day, as soon as spring comes I think the corona will be gone.

We in Bosnia have the crazy fortune of not having a single person with corona virus so far, although Italy is close, there are cases of diseased persons in neighboring Croatia. We like to joke and say that in Bosnia we seem to pray a lot to God. It just doesn’t need to panic and needs to increase hygiene care, and of course eat plenty of Vitamin C.

DeAnn, I use my teeth a lot in these situations, you generally have to find the right tactic, move the cable left to right. Of course when we can’t do something, it annoys us, very important thing for us is patience.

Like you DeAnn  I lost my father, he died eight years ago, of course it struck me because he had been suffering from Parkinson’s for a long time. I watched him how he become a plant from a strong, well-educated man. But life is like that, my mom is 69 and I honestly wonder what life would be like without her. I know I’ll manage somehow, but… Read more

All types of catheterization are good options, so we can choose what suits us. I don’t use a catheter, I can still do it myself, I don’t know what you call it, the bottle I urinate into. Honestly being able to urinate alone gives me some satisfaction that I can still do something on my own. As you DeAnn didn’t know about the SPC until… Read more

Kevin I watched these films before, I would especially like to point out Shaun of the Dead, I love Simon Pegg and that English humor. I am left with and will remain in my memory, Terminator 2: Judgment day. The movie is really a classic and I love Schwazenegger. It has this connection between me and Terminator 2, the day after I watched it, a… Read more

I had similar accidents, but fortunately, and thanking God, I did not break anything. Once I dropped out of the wheelchair and fell on my leg, luckily I was wearing winter boots so I just stretched my ankles.

That is a good idea. You need basic topics to get started. I like to watch various sports, as most Europeans I am a big fan of soccer and the NBA.

It’s a nicer feeling to read paper books. Even though they have that smell. It’s just like when someone says that sex is better without a condom than with a condom. A bit of a joke.

The best caregivers are our parents, but of course they sometimes overdo it. No matter what your friend can take care of herself, her mother must be afraid, maybe someone will inadvertently push her or something. I would love for each of us to do an experiment, to tell our parents that we found someone and that we want to get married . I… Read more

Kevin I also like Stranger Things ,I just finished second season.I’m a big fan of Stephen King and this series is so similar to King themes.I also watched Handmaid’s Tale and i’m not so satisfied with them.Theme is good but but they didn’t use good.I’m in plan to watch all seasons of Fargo and The Office because of Steve Carell.I watched The… Read more

I’m a fan of Android phones. The majority of the phones use android, because the Android OS is high quality. The iPhones are more expensive, but they are not better than other brands. I mainly buy Samsung mobile phones, I’m happy with them.Now I use Samsung S7 . I once had a LG smartphone, it is also good smartphone and it was very… Read more

Luis just write about your life with Jennifer ,you are good example for us.

Kevin can you spend 12 hours without water?

When we talk about religion and this topic, I did not have such an experience, although I believe and I know that many people I know are praying for God for my health. My opinion is that there is no need for it, because in Islam, and I believe in Christianity, that pray of  ill person is much more valuable to God, because we are the ones who… Read more

The reason we have anxiety is because we are physically weak. The tablets for calm can help me, me helped   using magnesium. I had the fear that when I was alone, and once  happened to me that I was a few minutes  longer alone, and I got a panic attack , stronger heartbeats, choking and I thought I would faint, but of course this did not… Read more

Our patience shows the most when we have to go to the toilet. I need time to dress and other things, and the best for us is when the same person helps us because that person knows how to dress fast  or slow.

The most annoying me when I feel good and I have no one to go somewher. And when I have a bad day then someone always calls me to go out and go somewhere. Usually when is the summer then I feel better and so I use the summer as much as I can.

I always have a few wheelchairs, I have three wheelchairs in total. Sometimes mechanics can not come right away or have to wait for some part. Luckily the wheelchairs never messed me up to far from my house, but it’s still not a nice feeling when that happens. It happened me oce that my batteries were old and my friends told me to go to… Read more

When you mentioned this DeAnn  I remember it and how much I was ashamed when somebody sees me naked especially when I was younger. But now I do not care anyway

I had similar problems, but with exercise and massage, my neck is in good condition. I think our neck muscles are in a better condition than others. But Kevin maybe Spinraza gives some strength in your neck.

It’s sad, but that’s our reality. Sometimes I think some people who see me on the street or restaurant, think what this guy want here, why he is not in the hospital bed or at home.

yes ,Kevin I also do that,main thing for is be with normal people.

Most of us do not have pain from SMA, but this damn tired. We must have enough time to rest, to do nothing, just rest.

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 .

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.

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.

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… Read more

I done same things like you Halsey,was on porch and I deep breathe.And I really saw how much fresh air I need.

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.

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.

Ryan, you’re indestructible.

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… Read more

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… Read more

Whatever we take the mattress, we will again have the need to turn someone on the other side.

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.

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.

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… Read more

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.

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.

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.

No I haven’t try but I’ll try with that.Thanks

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.

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… Read more

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.

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.

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?