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Australian Epilepsy Support Group
Support and advise for people coping with epilepsy, dealing with government departments (Centrelink, SSAT, etc) Hello and Welcome My name is Wayne A Roberts and I am the founder of the Australian Epilepsy Support Group. I was diagnosed with epilepsy at age 7 back in 1970, medicated after a lengthy diagnosis and a seven month stay in the Adelaide women’s and children’s hospital on Dialantin (Phenobarbital) the miracle drug of the time along with a dangerous chemical cocktail of amphetamine sulphate, thoridazine, and imipramine for ten years until age 17 when I decided to stop taking them and attempt to live a normal life. Well as normal as could be for an epilepsy sufferer. My seizure activity ran rampant as my body purged the drugs and then seem to stabilize and I learned to control them through several different means and educated myself through research into all I could find out about my condition. Back in the 70's seizure activity was graded in 2 ways, Grand Mal or Petite Mal and little was known about the neurological causes of epilepsy. My condition was caused by brain damaged caused by an instrument birth and later scans have shown scar tissue on the left hand side of my brain circling my ear. I managed to control my seizures thru diet and regular sleep patterns and managed to have a fruitful working life and hide my condition and seizures from the outside world just so I could be treated as normal. Epilepsy still has a huge stigma attached to it and most people consider you to be brain dead or damaged goods at the mere mention of the condition, and still do to a certain degree in this day and age. I’m proud to state that I have an IQ of 129 and consider myself to be an intelligent individual proving that epileptics are not stupid, damaged, nor incompetent. At age 35 my condition came back to haunt me and over the past 7 years has hit me hard, harder than it ever has in the past and I now find myself having regular seizures and I have been forced into early retirement and placed on a disability pension. I have had to surrender my licenses and being a truck driver that was like having my legs cut off, I no longer drive a car and have endured major lifestyle changes forced upon me by this horrid condition. I'm currently on epilim (sodium valproate) to treat my epilepsy and it controls the condition but hasn’t stopped the seizure activity totally and it’s highly likely that it won’t. I still have myclonic and absence seizures on a regular basis (2-3 per week) Grand Mal monthly, almost like clockwork, but have had to learn to accept that this may be as good as life gets for me now. With that said I wake each morning and take each and every day as it comes and will not let this beat me, remaining positive in yourself is key to managing your condition. Yes I’m a moody o'l bugga (caused by the condition and high dose of valproate) and sometimes i'm not a nice person to be around, but I have come to recognize this in myself and lead a very quite and reclusive life because of it. Regular sleep and rest is paramount for me and if my sleep patterns are disturbed my seizure activity increases. Stress also plays a major role in seizure activity and relaxation exercises are a regular part of my daily ritual now. Epilepsy effects each individual in its own unique way and this is what makes it so hard to control on an across the board level, its important that you recognize how your condition effects you and take action on a personal level and decide whether its going to be a major player and destroy your life or learn to deal with it and work around the issues and live life to the fullest. My motivation to start the Australian Epilepsy Support Group is simple, I'm living proof that you can have epilepsy and have a reasonably normal lifestyle through recognition and sensible management of your condition. If someone says you can’t do that because you’re an epileptic don’t take their word for it, know your limitations and have the strength and conviction to prove them wrong. I welcome feedback and comments from sufferers and careers and plan to run open chat rooms devoted to discussion and education about epilepsy on a nightly basis thru the internet chat site on AESG site. I hope you will take the time to join me and others and as a group we can cast off the shadows and dispersions of this silly and disabilitating condition they call epilepsy. Yours Faithfully Wayne A Roberts |
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Australian Epilepsy Support Group Australian Epilepsy Support Group
Support and advise for people coping with epilepsy, dealing with government departments (Centrelink, SSAT, etc)
A personal observation on the importance of diet in controling seizure activity
Managing Epilepsy - Depression and Epilepsy A personal observation by Wayne A Roberts. my ten cents worth.
Managing Epilepsy - Anxiety and Depression Managing Epilepsy - Anxiety and Depression. A personal observation by Wayne A Roberts
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