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HAWMC 2013 Day 2: Brain Stem Lesion? Here’s all you need to know…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

Introduce your condition(s) to other Health Activists.  What are 5 things you want them to know about your condition/your activism 

For you all that are new to the blog and therefore to me – Welcome!  My name is Rhiann and I am 27 years old living in a small town within South Wales (UK).  The conditions which I live are a long-standing brain stem lesion and spastic paraparesis.  Both are as a result of damage to the brain, in which I suffered at birth (or so the doctor thinks) however I was not diagnosed until I was 24!

The brain-stem lesion basically means that there is scarring on the brain stem.  As a result of this, I live with constant dizziness with which I have suffered since I was approximately 8 years old, although it may have been before this age.  As well as the constant dizziness, I also have episodes of vertigo (spinning sensations) and visual disturbances.  The spastic paraparesis is connected with the brain stem lesion, and causes stiffness and weakness in the legs, and neuropathic pain.  The difficulties I experience with my legs can result in a lot of falls, especially as they often give way on me.  Lately, I have been experiencing episodic periods of numbness in my legs and cannot feel any sensation.

These are the 5 things that I would like to share with anyone new regarding my health condition/activism:

  1. My condition and the effects that it has on my life is for the most part invisible, and therefore it can be hard to accept that there is anything wrong.  But there is – and although the symptoms cannot be seen, they still have a huge impact upon my life and am unable to do a lot because of it 
  2. You are unable to compare one sufferer of a neurological to another – think of us all as snowflakes.  Like snowflakes, each case is unique as and it is possible that mot all patients will exhibit the same set of symptoms.  The types of symptoms and the severity of the symptoms both can vary widely from patient to patient.
  3. The condition is unpredictable – apart from the dizziness which is constant; many of the other symptoms can appear with no warning.  Added to this, I as the symptoms are unpredictable, I never know how I am going I am going to feel from day-to-day, sometimes even minute-to-minute.  Because of this it can be extremely difficult to make social plans with friends, as there is always a possibility that I will need to cancel
  4. Although symptoms can be unpredictable, I have however found that there are certain triggers that can exacerbate the severity of the symptoms.  These include fatigue (a major factor that can increase the likelihood of symptoms occurring), the common trigger – stress!  I have also found that the cold weather can really affect the spasticity in my legs, and so during the winter months I ensure that I really make sure my legs are warm when out, such as thermals underneath my clothes.  In contrast the very hot weather can also increase the severity of the spasticity and other symptoms, and during the summer I have to make sure I drink plenty and stay in the shade as much as possible.
  5. There is no treatment or cure for my condition, yes, I take some medications, but they are only to try and control the symptoms that I experience (although I have had little success with them).  The medications are for management of the symptoms rather than to treat the root cause – the damage has been done and unfortunately cannot be reversed.  Due to this, the condition is life-long, and at times can be disabling; there are times when my legs are so weak that I cannot get out of bed, or the dizziness is so bad that I am falling over the place, and so just need to lie down on my bed and rest.  The condition is also rare and so there is no real support for those like me (one of the reasons why I started the blog), and because the condition is such an enigma there is little research or literature on it, or no charity or organisation to provide support or advocacy – basically my condition is unknown.

In terms of my health activism I am on several different social networks.  You can find me on

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NHBPM Day Twenty-Seven: ‘Bet You Didn’t Know That!…’

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Well, today is 27 of the ‘National Health Blog Post Month’ – so we’re almost at the end of this month-long writing challenge.  Today’s prompt are really nondescript’ so we really can choose how we interpret it!  The prompt I have chosen simply says ‘Be you didn’t know that…’

In this instance, I have chosen to share some facts that I have learnt about the brain!

 

 

  1. The brain is more active at night when you are resting
  2. There are over 100,000 miles of blood vessels running through the brain
  3. The brain’s activity during the waking hours is enough to light a lightbulb.  The brain is said to produce up to 23 watts of power
  4. The brain has no pain receptors; so the brain can feel no pain
  5. The human brain is the fattest organ that makes up the human body and is said to consist of approximately 60 per cent fat
  6. The first sense that develops while in utero.  The lips and cheek can experience touch as early as 8 weeks and the rest of the body around 12 weeks
  7. The brain uses approximately 20% of the total oxygen in your body
  8. It is said that yawning sends more of the oxygen to the brain, therefore working to cool it down or waking it up
  9. Interestingly, I often suffer with tinnitus which for years medical professionals was as a result of a dysfunction within the mechanics of the ear; however, newer evidence suggests that it is actually a function of the brain
  10. A living brain is so soft that it can be cut with a table knife!
  11. The brain is approximately 70% water
  12. You can continue to grow more neurons throughout your life by exercising the brain with puzzles, by reading and playing memory games
  13. Approximately 30% of the brain’s function is given up to vision, such as spatial awareness, depth perception and recognition
  14. We are unable to tickle ourselves because as a part of the brain called the cerebellum knows that we are doing the tickling and therefore sends a message to the rest of the brain to ignore the sensation
  15. The human brain is approximately 2% of our body weight, around 3 pounds, however it still uses 20 to 30 per cent of the calories we consume

There are some fun facts about the brain!  Did you already know some of these facts?

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