Holiday (part 3) To be proud of

Other than the problems with the water, the physiotherapy, walking and sleeping went very well this time.
We even walked in the evening sometimes and sat on the terrace of the restaurant for a while. Dejana liked it extremely and looked at us with joy in her eyes. I think she was really proud to be between all this people and to look at the crowded boulevard, to drink (sugar free) juice and to eat a piece of sugar free biscuit. And people did not stare at us as usual and this made me also feel good and stress free.
Every morning after breakfast, we climbed a small hill in front of the hotel. It was a quiet and nice moment in the day to walk for a half hour up and down the steep path of that park and listening to an ‘early bird song’. At this moment it was warm but not so hot yet. I took some food from the restaurant and so we always got a company of a group of street dogs coming up the hill with us. Dejana liked them too.
Climbing was usually the biggest challenge for Dejana because of the different gravity power than during walking on the flat ground. For that reason I used to help her by pushing her from the back. And I did it this time too. Two weeks long. In the third week I just tried to let her climb alone and warned her that I will not help her anymore. It was a try and not a believe that she would do it.
But surprisingly for me .... She did it. All alone and happy. She walked very slow but with a correct body position and well coordinated too. I always considered this as more important that the speed. It was a moment of a private celebration. How can I explain this to anyone that does not have any experience with the Rett syndrome how great the improvements are that Dejana made???? So I was happy on my own.
And of course, the rest of the holiday she walked up the hill alone with more and more confidence in herself. Down the hill I still had to help her not to fall over.


In fact I wouldn’t have came to this idea if we didn't had a very energetic and pushing therapist.
An extremely professional and young lady in her 20ties, enthusiastic and a fighter. Miss Cristina saw after her first physio-session that Dejana could do exercises on her own. We only had to give her enough time to concentrate and plan her own activity. We also needed a strong motivator like a peace of fruit and a challenging therapist like Christina. Dejana walked on the stepping stones and over the obstacles without any support. She crawled over the high pillows, got up from laying to sitting, grasped a ball high and low (with weight on her arms), balanced on her knees and on one leg.
I was super proud and Dejana was too.
It didn’t matter how difficult the task was, she smiled with a pride if she succeeded.
And after every physio session she was significant more flexible in her all body and walked more upright than before the treatment. It is a temporary effect of course but still it is more than clear that movement does good for the girls with Rett syndrome. I do not have any doubts about this topic any more.
Two times of 30 minutes physiotherapy a day in the period of tree weeks didn't trigger any Vaslavas/epilepsy attack at all. That was a big improvement compared with a year ago.
“And she was better in coordination and understanding the tasks”, said one therapist who worked with Dejana last year. It was one more reason to enjoy the holiday.

Holiday (part 2): Water challenge

Well, this time traveling was an excellent happening for me. Normally there were two moments during the flight that always have been difficult for Dejana: when the plain gets up or down. The raising air pressure in the cabin is too unpleasant for her ears that she may cry or shout. But we found the solution! A hand full of raisons or several sugar free sweets do the trick. With this trick we can now land ‘successfully and "quiet", keeping the pressure on her ear under total control.
Eventually it ended in a good journey.
After a while we found our self's in the apartment of the hotel. We had two rooms, two bad-rooms and a small kitchen with an extra large terrace. All of it for us alone. This may only be a dream for the most tourists in the middle of the crowded high season. But I think that we deserved a dream holiday as we are en extraordinary family that carries the Rett syndrome in our baggage.
The holiday could finally start. It was summer, sunny and hot, just as I like it to be.
The most ideal place for all three of us was the large terrace. In this place we avoided the crowded beach and Dejana avoided the burning sun by laying halfway in the shadow. She could do this as long as she wanted. This time Dejana tolerated the sun much better and longer than ever before. She got a nice light brown color on her legs and back as they were exposed to sun but her arms and face stayed white as they were in the shadow all the time. Pity for this white parts! We would like so much that Dejana could get brown all over. It is very nice for me to see the brown color on the children along the beach. It belongs with the sun and summer. It is a sign of health to as I now realize. Children that are sick can't stay on the beach all day, they do not tolerate strong sun and they usually stay white all year long. It is something that I now know. Being outside, playing on the beach, swimming, jumping and getting color is the privilege of a good health. People with “usual-children” do not realize how happy they should be with this simple and ordinary things.
Anyway, we had enough sun on “our” terrace. And we had a therapy program for Dejana to. Because the hotel is a part of a spa we could do this program for three weeks. Dejana got a daily program that included manual massages, jacuzzi's, underwater massages and two times a day half an hour physiotherapy. And there was still plenty of time in betweens to rest, walk outside or to do whatever else.
We divided Dejana's therapeutic activities between the two of us. Her father took her to the massages and baths and I took her to the physio-sessions. I also went to swim with her later in the afternoon.
But now we are getting to the point of this story.
This time water was the extremely challenge for Dejana. And so, for us to.
Dejana likes to swim and we used to stay in the sea for more than an hour. Swimming and floating along the beach and looking at the children, who were playing with a ball or were jumping in the sea, is Dejana's favorite activity. We even had to laugh sometimes. So funny it was.
But.... the moments of getting in to the water and out of the water were not funny at all.
Dejana had Rett kind attacks called Vaslavas in almost all of this situations. Getting in & out of the sea, bath or pool caused big trouble for some reason.
And as it was a water holiday this happened all of the time.
We observed those moments very carefully and brainstormed about the problem from all sides, trying to find the reason for Vaslavas, but it was not that easy.
What we found is that getting in the water till the hips was not a problem at all. We could walk through the sea for an hour without any sign of an attack, but at the moment that Dejana got her upper body down the attack would start. I saw it as a raising pressure to her diaphragm and chest and gave provided a obstacle to the breathing. The Cranial nerves and the Brain stem again. Her father saw it as a strong reaction on the temperature changes between the air and the water. What it is we still do not know but we decided to work on the problem by repeating this kind of situations several times a week. That is our way of fighting the Rett syndrome. If there is a challenge do not avoid it but face it for as long as it becomes no challenge any more. Of course we will do this step by step in a controlled situation preventing Vaslavas and at the same time racing her sensory tolerance to such situation more and more.

Holiday (part 1) Traveling like a queen

Over the years traveling was a night mare for me.
It lasts only one day but it costs me a whole week of energy. It is just two hours in the aeroplane but we have six or more hours attached to it. Traveling to the airport, passing two borders, waiting in small and crowded rooms and then comes a flight delay as standard surprise. Oh God. This delays are sometimes longer than the flight self. We are than already stuck in a waiting room full of passengers raising my imaginations of Dejana getting mad of that and starting to cry, or scream, or... who knows what???
Well it didn't happen so often and if she sometimes got irritated it was short and possible to control it with some snacks or a little songs that she likes. But I was nervous and stressed anyway. As I already said: the worst thing that happened to me is not Rett syndrome but the surrounding. People that are staring at us like we are a walking theater and my temper that strongly pushes me to say something offensive to them. They interfere in my privacy and what is going to prevent me to let them know that I didn't ask for it. Happily most of the people don't pay extra attention at us. But only a few of them staring intensively are enough to make me feel unpleasant and uncomfortably. Nobody likes to be deeply watched I guess. Especially not in such a tensed situation as traveling.
So: What is going to happen this time????
I could imagine all kinds of situations but one thing I could not imagine: That I will truly enjoy in this journey this time!!
This time I traveled like a queen.
It happened because of a special service that was performed for a lady in a wheelchair and we were asked, quite by chance, to join her with our daughter. And it was a wonderful experience. We were all the time treated special and separately from the rest. We had a guide who led us from the row and we could pass the border quick. No long waiting, long standing, or much noise. A lot of surround talking makes Dejana sometimes hyperactive and as a result she may push other people or step out of the row. But this time it went smooth and quick. After that we went to a small waiting room for special passengers. It was quiet and relaxed with one or two persons with enough chairs and place to walk around and nobody to watch you. I was relaxed. For the first time in so many years. Dejana could shout or step around as long as she wanted but.... she didn't. She was relaxed too. Is there a relation? Yes I am sure.
And than we were invited to the plain. Quit, slowly and with a special car that had a lift. Dejana performed great holding a gate on her own and walking into the plain. One old lady was with us. In the plain we had enough time and space to come to our place and to sit relaxed. We were the first and only passengers at that moment. After a while the rest came in stumbling .... And so on. Till the hotel.
It was never so pleasant to travel in my whole life. And it is sure worth to try it again. I ask myself why we didn't do it before??? And it is funny to think: If we didn't meet Rett syndrome I will never know how the "queen" travels.

Possible roll of epilepsy

New nerve cells even in old age

After birth the brain looses many nerve cells and this continues throughout life – most neurons are formed before birth, after which many excess neurons degenerate. However, there are some cells that are still capable of division in old age – in the brains of mice, at least. According to scientists from the Max Planck Institute of Immunobiology in Freiburg, different types of neuronal stem cells exist that can create new neurons. While they divide continuously and create new neurons in young animals, a large proportion of the cells in older animals persist in a state of dormancy. However, the production of new cells can be reactivated, for example, through physical activity or epileptic seizures. What happens in mice could also be applicable to humans as neurons that are capable of dividing also occur in the human brain into adulthood. (Cell Stem Cell, May 7th 2010)

You can't teach an old dog new tricks.
The corresponding view that the brain loses learning and memory capacity with advancing age prevailed for a long time. However, neuronal stem cells exist in the hippocampus – a region of the brain that plays a central role in learning and memory functions –that can produce new nerve cells
throughout life.
It is known from tests on mice that the newly formed cells are integrated into the existing networks and play an important role in the learning capacity of animals. Nonetheless, the formation of new cells declines with age and the reasons for this were unknown up to now.

The scientists observed more newborn hippocampal neurons in physically active mice than in their inactive counterparts. "Consequently, running promotes the formation of new neurons," says Verdon Taylor.
Pathological brain activity,
for example that which occurs during epileptic seizures,
also triggers the division of the neuronal stem cells.

The different stem cell populations are easy to distinguish under the microscope. The first group comprises cells which lie perpendicular to the surface of the hippocampus. Most of these radial stem cells are dormant. As opposed to this, over 80% of the cells in the group of horizontal stem cells – cells whose orientation runs parallel to the hippocampus surface – continuously form new cells; the remaining 20% are dormant but sporadically become activated. The activity of genes such as Notch, RBP-J and Sox2 is common to all of the cells.

Radial and horizontal stem cells differ not only in their arrangement, apparently they also react to different stimuli. When the animals are physically active, some radial stem cells abandon their dormant state and begin to divide, while this has little influence on the horizontal stem cells. The result is that more radial stem cells divide in active mice.
The horizontal stem cells, in contrast,
are also influenced by epileptic seizures.

It would appear that neuronal stem cells are not only found in the brains of mice. The presence of
neurons that are formed over the course of life
has also been demonstrated in the human hippocamus.
Therefore, scientists suspect that different types of active and inactive stem cells also arise in the human brain. It is possible that inactive stem cells in humans can also be activated in a similar way to inactive stem cells in mice.
"There are indicators that
the excessive formation of new neurons
plays a role in epilepsy.
The use of neuronal brain stem cells in the treatment of brain injuries or degenerative diseases like Alzheimers may also be possible one day," hopes Verdon Taylor.

Source: Max-Planck-Gesellschaft

New view on developing brain

Mechanism found
that prepares the brain of a newborn
for information processing


With their French colleagues, researchers at the University of Helsinki have found a mechanism in the memory centre of newborn that adjusts the maturation of the brain for the information processing required later in life. The study was published this week in an American science magazine The Journal of Neuroscience.

The brain cells in the brain of a newborn are still quite loosely interconnected. In the middle of chaos, they are looking for contact with each other and are only later able to operate as interactive neural networks.

Many cognitive operations, such as attention, memory, learning and certain states of sleep are based on rhythmic interactions of neural networks. For a long time the researchers have been interested in finding the stage in the development of the brain in which the functional characteristics and interconnections are sufficiently developed for these subtle brain functions.

Key players in this maturation process include a type of nerve cells called interneurones, and recent research sheds light on their functional development. The researchers have noticed that the activeness of the interneurones change dramatically during early development. In the memory centre of the brain they found a mechanism which adjusts changes in the activeness of interneurones.

The interneurones nerve cells are kind of controller cells. In the nervous system of a newborn they promote the creation of nerve cell contacts, and on the other hand they prevent premature rhythmic activity of neural networks. During development the controlling role will change, and the result is that the neural network becomes more efficiently rhythmic. This can be seen, for example, in the strengthening of the EEG signal during sleep.

The mechanism adjusting the activity of the interneurones is related to the development phase which prepares the brain to process and handle information needed later in life. The finding may also offer more detailed means to intervene in the electric disorders of developing neural networks, such as epilepsy.

Source: University of Helsinki

Did you know that....

... There is no country in the world where disabled people’s rights are not violated
(Disability Awareness and Action, Hurst 1999).

- numbers: The World Health Organisation (WHO) estimates that disabled people make up 10% of the population - around 650 million people.

- numbers: More than 25% of the entire population is either directly or indirectly affected by a disability (UN and World Bank).

- numbers: There are 55,000-75,000 children with a moderate or severe learning disability in England (Department of Health)

- numbers: There are an estimated 210,000 people with severe and profound learning disabilities in England: around 65,000 children and young people, 120,000 adults of working age and 25,000 older people (Valuing People, Department of Health)

... Research indicates that violence against children with disabilities occurs at annual rates at least 1.7 times greater than for their non-disabled peers.

... Women and girls with disabilities are particularly vulnerable to abuse. A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 per cent of women with intellectual disabilities had been raped and 6 per cent of disabled women had been forcibly sterilized.

... Four times as many people with learning disabilities die of preventable causes as people in the general population
Disability Rights Commission)

... Ninety per cent of children with disabilities in developing countries do not attend school, says UNESCO.

... For every child killed in warfare, three are injured and permanently disabled (they were born helty).

... Expressions such as ‘mentally retarded’ or ‘mentally handicapped’ are misleading and negative, and can cause community ignorance, which further isolates people with intellectual disabilities.

... Children with a learning disability are often socially excluded and 8 out of 10 children with a learning disability are bullied.

... 75% of GP´s (doctors) have received no training to help them treat people with a learning disability.

... It's important to understand that people with a learning disability are individuals with unique personalities, likes and dislikes, goals, and aspirations.

... If you have an intellectual disability, it means:
* You still experience and feel things like joy, anger, pride, hurt, jealousy and other human emotions.
* You want the opportunity to have a range of life experiences.
* You learn and develop more slowly than average, but you can learn

... People with learning disabilities generally have average or above average intelligence. Their learning disability, however, creates a gap between ability and performance.