Showing posts with label Awareness. Show all posts
Showing posts with label Awareness. Show all posts

Saturday, 21 December 2019

A Discussion On TAND

Hi All

Recently I was invited to sit in on a Podcast with Jill Woodworth and Prof. Petrus De Vries. Now it has finally arrived!  

In this conversation Prof. De Vries shares his insights on the future of TSC and TSC management. As well as what TAND and TANDem are, and how this umbrella term could benefit you and your family in the future. I hope you enjoy it. 

Thanks a lot to TSC Talks for hosting this podcast! Your support in creating awareness for TSC has been truly appreciated.   

Kindly leave a comment on what you enjoyed the most, and what you would like to see in the future with TSC.


https://www.spreaker.com/show/1666046


Monday, 26 November 2018

TSC Indaba 2018!

On the 17th of November, I was scrolling through Face-book when something caught my eye; "TSC Indaba UCT 24th November 2018". What particularly excited me were the words; "We invite you to join...families and individuals who live with Tuberous Sclerosis Complex (TSC)". Now please understand, I'm 24-years-old, throughout my childhood (and brief adulthood), I have met many people with epilepsy and other genetic disorders, however, I have only met one other person with TSC. So to be offered the opportunity to meet "families" truly excited me. Not to mention the world renowned Prof. Petrus de Vries was going to be there! The last time I read about a conference that he attended, it was in Washington D.C, therefore, I was not planning to miss this Indaba. My mind was made up.

The Indaba was amazing! It is a kind of informal meeting, there were seven families, myself along with three speakers; who updated us on the latest and greatest new in the field of TSC. Everybody shared their journeys thus far. It was fascinating to here everybody's experiences, especially how different a father's experience is to a mother's experience in all cases. 

As we spoke, Prof. de Vries took note of questions, concerns and expectations. The ones I can recall are the following;

  • What can parents expect in there child's future? (in terms of development, schooling, medicine, adapting into society and so on)
  • Requesting more parental support, such as; availability of information and meetings. 
  • To build a TSC family or community.
  • To work towards better support systems for adults with TSC. 
  • How to make the transition from adolescence to adulthood in terms of doctors more simple.
  • How to integrate adults with TSC into society, in terms of finding accommodating jobs and in some cases educated and willing care takers.
I found these points interesting, some had not even crossed my mind before. I hope that in some way, I may help in some of these areas. Prof. de Vries as well as the other speakers seemed excited at the progress of the Indaba and were excited to begin innovating some ideas to accommodate future generations concerning these points. I am truly excited for what the future holds. 

I would like to extend a huge thank you to:

  • Professor Petrus de Vries 
  • Professor Regan Solomons 
  • Dr. Birgit Schlegel 
  • Max de Vries     
 Looking forward to the next gathering. If anybody in the audience is in the Gauteng area, who would like to have a similar gathering, please leave a comment below, so that arrangements may be made. Kind Regards Alexis Minnaar.
             
Tuberous Sclerosis South Africa

Saturday, 7 July 2018

Embrace the Rhythm Within Your DNA.

Recently my younger brother shared some news with me, he said; "Alex, I have been studying brain waves, epilepsy and seizures. I finally understand what you have been going through." This small interaction got me thinking... My brother has grown up with me, not fully understanding; so how can we expect other people to understand what we go through? Therefore I decided to do a general, broad study of brain waves myself.

The brain consists of continuous electrical activity, sending messages from one neuron to another. If one looks at a neuron under a microscope, one will notice the signals  (made up of ions,) are sent through protein channels. These are known as neurotransmitters. Neurotransmitters consist of two types of receptors; excitatory receptors and inhibitory receptors. Excitatory receptors, open pathways in the brain allowing messages through, while inhibitory receptors close pathways, blocking messages coming through. The flow of electrical activity creates a rhythm, which is then recorded as waves.

You  get four types of brain waves; alpha, beta, theta and delta. These waves are measured in hertz and / or cycles per second. Alpha waves are calm rhythmical waves, which occur at 8-13 cycles per second. They are moderate in speed or frequency and therefore occur during reflection or quietly flowing thoughts. Beta waves replace alpha waves when you focus on a specific cognitive activity. These waves flow at between 14-80 cycles per second, making the frequency faster then that of an alpha wave. Beta waves dominate your mind during waking hours, they are used during processes such as; problem solving, judgement and decision making. You get three different bands of beta waves, all of which vary in frequency based on the level of, intensity or concentration of the person doing the activity. Thirdly you get theta waves. Theta waves move at a slow frequency, between 4-7 cycles per second. They occur during emotional stress such as; disappointment and frustration. Theta waves have also been found to be highly active in people with brain abnormalities such as epilepsy and autism. Most active during the waking up from and the drifting into sleep, theta waves are the gateway to learning and memory. Intuition and the senses are focused within  the mind and body, rather than expressed outwardly. Last but not least you get delta waves, which have the lowest detectable frequency of less than 3.5 cycles per second. Waves of this speed are often only detected during cycles of deep sleep, in infancy, or in people who have brain disorders. The subtleness of these waves is what biologically give us a sense of awareness and empathy. Thus, are the four types of rhythmical brain waves. 

Patterns of  Brain Waves

As previously mentioned; in a normal brain, these waves have normal and consistent patterns. Patterns which keep time, synchronising the different parts of the brain. However, in epileptic like ours, things are different; we have abnormal brain waves. This means we either have too many excitatory receptors; allowing a sudden surge of messages to uncontrollably overwhelm our minds. This is what my brain does. Or we have a lack of inhibitory receptors; which prevent messages from coming through, thereby causing our bodies to shut down during a seizure. Either way epileptic seizures are caused. Seizures are often noticed via outward signs such as grandmal and petimal symptoms. But that's a blog for another day...


We all have our own rhythms. The speed at which we walk, the pace at which we think, the beat at which we laugh, it is all unique to us. Whether we are epileptic or autistic, (or suffer from any other disorder for that matter,) remember, you are fearfully and wonderfully made, there is beauty and purpose in you. So follow where your spirit takes you. Embrace the rhythm within your DNA.                       

Wednesday, 17 May 2017

Do you Embrace Life, or Fear it?

People all around the world, are judged, criticized, and compared by others on a daily basis. People are always feeling this constant pressure, to be perfect. Parents and children, with any type of chronic disease, end up being incredibly self conscious about themselves. TSC more often then not, causes outward manifestations on the surface of the skin; i.e. Angiofibromas (facial lesions), and Hypopigmented Macules (white leaf shaped patches on the limbs). These outward "side effects" cause us to stand out more. Consequently, human nature, causes us to be a bit more paranoid than our peers.

When I was eighteen, I asked my father, if at any stage he was ashamed of my condition. His response surprised me. "Yes," he said in deep contemplation, "I was embarrassed for you, watching people stare at you. People are stupid, it really irritates me, because the are ignorant, they are always suggesting things; "have you seen this dermatologist?" or "here let us pray for you". As your father I feel as though I have to fix your face. But even if I was a millionaire I would not be able to fix your face." As a parent you want to protect your child, or children, you want to help them, or "fix" them. This is understandable. 


I had fallen in love, with the Montessori method, because of her focus on independence. Allow me to explain. As a parent, you feel the need to protect your child, this we have established. However, (based on observation) I have come to realize, there is a thin line between protecting and coddling children. Unfortunately, coddled children posses the following characteristics; firstly, laziness; "Oh, I can't learn to do that, because I have TSC." Secondly, Fear; "Oh no! am I allowed to bake? What if I have a seizure and burn myself? Am I allowed to swim? What if I have a seizure and drown?" And thirdly, manipulation; "Stacy's mom, my blood sugar has dropped, if you don't give us desert, I'm going to have a seizure." Please understand what I am trying to say. Children do not have to have a chronic disease the develop these traits. However, it is easy for children with a chronic disease such as TSC to develop a victim mentality. 


Once this happens, you end up with another problem; low confidence. What people have called "low confidence" is actually just fear... allowing fear to control you, which brings us back to independence. I'm not saying, do not keep your children safe, I'm saying allow them to experience life. even simple things make a difference. "Here Sweetie, you carry your school bag today." "Wow! Josh, you climbed the rope ladder all by yourself!" "Here, it is your turn to flip the pancake Stacy." Why? Why do this? Well, if their is one thing I know it is this; blaming people is easy, blaming a disease is easier. It becomes an excuse to hide, and the more you hide, the more difficult is to smile. I'm not talking about a mask, I'm talking about sincerity, it become difficult to be sincere. The best thing my parents ever did, was teach me independence, never hide, stay honest, stay in communication, and stay kind. You get two types of parent - One who embraces life, and one who fears it...

Which one are you?                    

Monday, 15 May 2017

TSC Day is Here!!

Dear Friends and Family
Tuberous Sclerosis Complex (TSC) is a rare genetic disease that causes tumors to form in vital organs, like the brain, kidneys, heart, lungs, eyes and skin. TSC is also the leading genetic cause of both epilepsy and autism.
South Africa has a total of 54 million people... Among these people we have only two Major Researchers, who have dedicated their lives work to finding the cure to the Tuberous Sclerosis Complex.
Therefore, please post a photograph of yourself in the following picture frame on Facebook or any other social media, in order to help mark TSC Global Awareness Day on May 15.
Help us increase awareness by Clicking on the link below..
May 15 is TSC Global Awareness Day. More than 1 million people world wide have tuberous sclerosis complex (TSC). You can help support TSC Global Awareness Day with a custom…
TSCGLOBALDAY.ORG