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Adult son with epilepsy

Gail68Gail68 Posts: 4Member Listener
edited January 2017 in Neurological conditions
Hi, my 24 year old son was diagnosed with epilepsy when he was 11 years old. Just lately he has been having seizures more frequently and this has had a detrimental effect on his confidence. He is currently unemployed and becoming more and more depressed because he is so restricted and cannot live as independently as he would like.

I desperately want to help him but things are complicated due to the strain his condition puts on our relationship. He sometimes goes out and drinks too much, for example, and I become frantic.

Can anyone recommend any support groups/counsellors or general advice in the Manchester UK area?

Thanks so much :-)

Replies

  • Gail68Gail68 Posts: 4Member Listener
    p.s. He was refused PIP last year, despite the massive impact his condition has on his life, his mental health and his ability to work.
  • JackieJackie Posts: 24Member Connected
    Have you heard about Young Epilepsy:
    http://www.youngepilepsy.org.uk/about-us/
    Jackie
  • [Deleted User][Deleted User] Posts: 689 Listener
    The user and all related content has been deleted.
  • Gail68Gail68 Posts: 4Member Listener
    Jackie said:
    Have you heard about Young Epilepsy:
    http://www.youngepilepsy.org.uk/about-us/
    Jackie

    Thank you, I will check this out.
  • Gail68Gail68 Posts: 4Member Listener
    I developed two types of epilepsy when I was 2, as I grew I read about epilepsy to learn how to reduce my seizures besides medication.
    One piece of advice is don't allow him to drink alcohol, alcohol triggers epileptic seizures. Try and find out what triggers his seizures. My seizures are triggered by anxiety, stress and lack of sleep. I began doing stress relief activities and reduced how much coke I was drinking due to caffeine flavouring causing anxiety and made myself a sleeping schedule. My seizures began and kept reducing that my neurology consultant reduced my medication.
    Find out which feelings, emotions and situations trigger your son's seizures then try to avoid them. Seizue triggers differ from one person to another like someone else's seizures are triggered by depression, depression doesn't trigger my seizures.
    Thanks for your reply. You've given me much to think about -  I didn't realise that depression could actually trigger seizures in some people.

    I've spoken to my son on several occasions about the risks of drinking alcohol, and most of the time he takes heed of this advice. Sometimes though, when he is feeling under a lot of stress, he will put himself at risk and drink too much. This is obviously a huge concern for me, but he's 24 and I am powerless to physically stop him when he makes poor choices. In the past I've resorted to turning up at the pub where he drinks with his friends and pleading with him to go home. As you can imagine, that tactic has caused a lot of arguments and fallouts. I've also sought counsellors, spoken to his consultant, emailed him relevant information, and encouraged him to participate in support groups. Nonetheless, sometimes he gets so low that he goes ahead and drinks anyway. Lack of sleep and over-excitement are other triggers. He is fully aware of all this.

    I guess the main point I was making in my original message was the difficulty he has in living an independent life. I wondered if anyone had advice or could share their own experiences of struggling with independent living and/or overcoming this precise struggle. I think it's the fact that he is unable to drive, live alone, travel etc that makes him get so down. He doesn't have many seizures; sometimes he can go a few months without having one, but the risk is always there and really effects his confidence and wellbeing.   

    Thanks.
  • natalie_scottnatalie_scott Posts: 1Member Listener
    Hi Gail,
    Have you researched your local offer? If you google 'Manchester local offer' a website will come up which advertises organisations, events and information about what's available in your local area. Most of which are usually free and offer some really useful advice.
    My younger sister has Williams Syndrome, she's 19 so we're beginning to look into independent living options for her. So far we've contacted a couple of organisations which we found via our Hampshire local offer and it's proven quite useful!
    I'm also an early years teacher and I so often suggest play groups or speech and language drop ins for the parents in my class, all of which are also provided by our local offer.
    Hope you come across something that helps...
  • lillybellelillybelle Posts: 455Member Pioneering
    Hi,
    i have epilepsy since I was 12 yrs old ( now 52)
    when I was younger I felt smoothered because my parents were so worried about my welfare.They were very loving and only had my best interests at heart.
    The more you try and stop him the more he will rebel.
     I know it’s hard but try to take a step back and let him have his own independence but let him know that you are allways there for him when he needs you.
    he has to learn for himself what he can/ can’t do. Instead of being told.
      This is just my experience and how I felt when I was younger
    i hope this post doesn’t offend you in any way
  • Just4todayJust4today Posts: 2Member Listener
    Hi, the epilepsy society, epilepsy action also helps me. I am 35 and diagnosed with epilepsy 3months ago even though I've had seizures years before. Hope these sites help :) 
  • jdouglas088jdouglas088 Posts: 4Member Listener
    I have severe epilepsy and much as I am a parent now, understanding the protection sentiment thoroughly... what Lillybelle rang true for me.  I had to learn my own limitations because I had always felt smothered, I barely touch alcohol, sleep early when necessary and try not to let my emotions get the better of me but they were hard lessons learnt through experience - nothing else would have taught them to me and I am nearly 40 now.  Hope it doesn't offend too, because as a mother now it would be exactly what I would do too.
  • lesdonnlesdonn Posts: 8Member Connected
    Gail68 I have had epilepsy for 45 years. We have many groups on Facebook of which I Admin. There others find support, friends and advice. Perhaps this might help?!
  • PoppysoxPoppysox Posts: 1Member Listener
    I can't offer any help but our 34 year old epileptic son lives with us,is unemployed and has become an alcoholic over the years due to his illness,some other basic problem,possibly mild autism,loss of confidence,depression etc and has no friends anymore. He's been turned down for benefits as he owns a flat which is rented out and this is what funds his drinking,we do charge him some rent. Life is becoming impossible and our relationship is suffering. Yet I can't throw him out,he would die,I'm beside myself 
  • Sarac_ScopeSarac_Scope Posts: 30Navigate Connected
    Hi All.  Reading some of your messages is so relevant to my own situation.  I have Epilepsy which thankfully is controlled by heavy doses of medication.  I have been seizure free for over 12 years now, but so aware this could change at any given time.  I didn't understand when I was younger why my parents were constantly checking on me and wouldn't allow me out on my own.  I suffered with depression, even though I didn't know that's what it was back then and still have bad days now with along with anxiety (side effect of meds).

    My saving grace was Epilepsy Action.  I contacted them and became a volunteer and my confidence grew.  Eventually when my seizures were controlled, I started to train as a counsellor and now work as a Parent Advisor with Scope.  Knowing I have the support of these charities has really helped me and extended my support network.  

    Give your son sometime and eventually he may want to consider joining a support group in your area.  Or if you are still worried about how he is feeling, maybe get in touch with the organisation Mind, who could offer support for his mental health.

    Best wishes

    Sara
  • Adrian_ScopeAdrian_Scope Posts: 4,416Administrator Scope community team
    Hello @Poppysox and welcome to the community. I'm sorry to hear the strain this is putting on your relationship. Are you and your partner receiving any support at all?

    @Sarac_Scope has given you some great advice and if you can, please get your son in touch with Epilepsy Action

    MIND might be able to help with his mental health and they also have information about a lot of resources which might be useful for your son's alcohol addiction. 
    Senior Online Community Officer
    Scope
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