Posted in Archive, December 2020

International Day of Persons with Disabilities 2020

The theme this year is ‘not all disabilities are visible’. This is stressing the fact that not every condition is immediately visible; according to the WHO report roughly two-thirds of people with a mental or neurological disorder will put off going to a doctor for help largely in part due to stigma, discrimination and neglect. As someone who has very much been on the receiving end of this trio when it comes to living with multiple neurological conditions, this comes as no surprise to me.

Looking at me as I am right now, curled up on the settee trying to not make to much noise so as to not wake the kids, you could be forgiven for not knowing I had a disability; even if your keen eyed and spotted my odd eyes you wouldn’t know that my sight was impacted and would be unlike to think too much about it. However even when you can spot my spasms or a dislocation, you cannot see my brain fog, my sensory loss, the neuropathic nerve pain, no one can see fatigue fight, the pain induced insomnia, the sixty odd dislocations a day and so much more.

Spot the faulty eye

I love talking with young children about my disabilities because they don’t hold back. “How does your chair work?” “Can you get upstairs?” “Do you have to put you your chair in the bath?” The look of fear on the parents faces as they worry that something not deemed politically correct may be asked is what I find disheartening. Without these beautiful minds being curious how can stigmas be fought against, broken down and normalised? This should be praised and encouraged. I appreciate that not everyone will want to be asked, but you’ll be surprised by how many people are more than happy to discuss these things.

Disabled people, whether the condition is visible or not, physical/mental/learning or otherwise are still people. Next time, pause, maybe ask a question, you could be amazed at how it opens your eyes.

Posted in Archive, May 2013

GABA and Dystonia

I often view The Dystonia Society’s website to check out the latest information on research, treatment and more. The other day I started reading an article on their website entitled The Basal Ganglia and Dystonia. It was an extremely intriguing article and for those of you who have not read it yet I suggest you do http://www.dystonia.org.uk/index.php/about-dystonia/dystonia-and-the-basal-ganglia .

The section that interested me most was on the role of GABA in Dystonia. At the moment the medical society think (but have yet to prove) that a shortage of an inhibitory neurotransmitter such as GABA could have an impact on Dystonia, as it seems that Dystonia is a failure due to inhibition. Many patients, myself included, who suffer from Dystonia are sometimes put on medications such as Gabapentin, Baclofen or Benzodiazepines. All of these medication increase the amount of GABA in the brain.

I was extremely interested to read this as I currently take both Gabapentin and Baclofen and have found both to have incredible effects on my spasms. The Gabapentin felt like a miracle drug when I was first put on it as has had a huge positive impact on my full body spasm and on my eyes! The Baclofen at the moment is having a fantastic effect on my neck spasms as well other spasms.

So I cannot help but wonder if I have found the answer I have been looking for to why I have Dystonia! I know that I will have to wait until the medical society have managed to prove if this theory is correct, but I cannot help but feel slightly excited. I am always trying to understand why I have Dystonia, and to have an answer would give me peace of mind. I may have a long wait ahead of me but I shall be keeping my fingers crossed.