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  1. #91
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    I have been stuck in my house for well over a week now. My balance is so bad I have to use Zimmer frames walking around my house and I haven't got the confidence to walk down my sloping driveway to access my car. I have spoken to my social worker about getting assistance to get out. It finally looks like I am losing my independence. I am bored being stuck in the house all day. There are loads of things I have got to do, which would fill my time. But they are all related to MND and I am sick of it ruling my life and dominating every day. My insomnia remains terrible and I often have restless leg syndrome. I have seen my GP about this ( as some of you suggested ). He has increased the medication that is supposed to help my insomnia and , as it is an anti-depressant, should help my anxiety and depression. But that doesn't seem to be the case. I am at the initial stages of MND;-slurred speech and poor balance and difficulty walking. I am struggling to cope and therefore terrified about how I will cope in the future as my symptoms worsen and new ones start.
    I often keep thinking about places I used to love visiting and exploring and I am devestated I will not see them again. I used to play hard, especially as I had ankylosing spondylitis and worried that might disable me. I can't believe I have got MND and how cruel it is . It is over one year since my symptoms started seriously and I just can't come to terms with it.

  2. #92
    Forum Member Gillette's Avatar
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    Oh, Panniertank,

    Please please ask your GP for a referral to your local mental health team for counseling, or ask your MND nurse if he or she can refer you for psychological help or contact the MNDA helpline to ask for their suggestions and help.

    I think you are beyond being able to cope without professional help. It is very distressing to know that you are suffering in so many ways. I wish there was something else I could do to help you but please do take notice of what I am urging you to do. You really do have to do this to help your self to live with this awful disease.
    Dina

    Trying to keep positive, but not always managing.

  3. #93
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi Panniertank, I'm sorry that you are still stuck at home. You've had good advice from Dina.

    How about thinking of moving house to a bungalow if you can find one? They're in short supply so best to start looking ASAP. Is your home in an area that houses are changing hands or what? It's not what any of us would want with all the upheaval and stress that a house move causes. But I think best done whilst you're still have some mobility. My OT offerred generously to help us pack up for our move last November but in the end we managed without her. Please speak with your OT about this. Just think how much freedom you would get if you were not having to manage steps, and with luck no slopes, although with a powered wheelchair most driveway slopes are doable. Good luck, Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #94
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    Uggh I have suffered with insomnia for several years. It's horrible and it seems to be worsening since my MND started. I am wide awake since 2.45am and I have tried three times to get back into bed. But as soon as I turn the light out and turn over in bed, I am having panic attacks and they force me back out of bed. I have been stuck in my house now for 4 weeks and I struggle to fill my time each day. So having these extra hours to cope with in the middle of the night is horrible. I have seen my GP about this and they increased medication I was on that is meant to improve my insomnia. But it is worsening. These panic attacks are horrible as well. I am struggling to cope with life and I am only at the initial stages of MND. I am terrified about how I will cope as I become more disabled. The thought of having chronic insomnia and one of these panic attacks when I won't be able to get out of bed without assistance , is terrifying. My insomnia has been so bad for many years I often wonder if it is the root cause of my MND.

  5. #95
    Forum Member Gillette's Avatar
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    Panniertank, I am so sorry your suffering is increasing. Having suffered both panic attacks and insomnia I understand some of what you are going through. My heart goes out to you.

    When you saw the GP did you discuss your depressed mood? Please, please, please ask for some psychological help and support, either through your GP or your specialist nurses. Trying to get through alone is seriously affecting you and may well hasten deterioration of your MND. You may receive some additional suggestions for support from the MNDA Helpline.
    Dina

    Trying to keep positive, but not always managing.

  6. #96
    Forum Member Terry's Avatar
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    Hi PT,

    You could try talking books or the links below, also Larazipan might help with anxiety.

    Profile beds with good high narrow hand rails make it much easier to get out of bed.

    https://youtu.be/vBt2GiWnpzI

    https://youtu.be/qVnbTMMSYI8

    Love Terry

  7. #97
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    May 2019
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    Thank you Gillette and Terry. I tried to get back to bed several times after sending my message but just kept having panic attacks and having to get back out of bed. I am having panic attacks and anxiety outside of bed as well. I am sick of being stuck in my house all day. I have always been an active person and doing something and focussing on it has been my main way of dealing with anxiety. But I am struggling to do anything now. Every day is just the same boring routine and everything I try to do such as showering and getting dressed is really difficult, especially with my fused spine exacerbating my MND symptoms. I feel afraid of dying but sometimes I feel more afraid of having to live with MND. I hope I can get a GP appointment tomorrow and I'll mention what you stated about psychological support.

  8. #98
    Forum Member Gillette's Avatar
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    Itís good to know you are going to ask your GP for help. Thatís a hugely important first step. Well done. Please tell us how you get on.
    Dina

    Trying to keep positive, but not always managing.

  9. #99
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    I saw my GP and they reduced the dose of one of the medications I am on and also prescribed me sleeping tablets. Since doing that my restless leg syndrome and panic attacks whilst in bed have stopped. Which is good. But my insomnia is still bad. She spoke about referring me to psychological nurses and/ or the palliative care team, so i'll wait to hear what they propose. I am still struggling to fill my time every day and anything I do such as showering, getting dressed, cooking, washing my clothes ( getting them downstairs and getting them in and out of my tumble dryer and washing machine ) is becoming extremely difficult. Like I've said before, it was a big shock to be diagnosed with ankylosing spondylitis about 13 years ago. I was taught to stay as active as possible to counter that condition , which I did. And now I've been rewarded for my efforts with MND. Sometimes I wish euthanasia was a legal option in this country and you could have support to help you do it. I am struggling with my life and losing control of it. I am terrified of the way my life is going. We are all strong and weak about different things. Many of you that offer many responses to people on this forum seem strong in the way you are coping with MND. I don't feel strong in coping with it and I hate losing control of my life and independence, especially after working hard to maintain it with AS. I was upset to hear about people being killed again by a terrorist attack in London. When it happened a few years ago ( Westminster bridge I think ) and then the Grenfell tower disaster, I felt so sorry for the people that lost their lives and the family members etc that had to deal with it and couldn't believe how cruel life could be for some people, especially through no fault of their own. And now I am experiencing life's cruelty for myself.

  10. #100
    Forum Member Gillette's Avatar
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    Panniertank, I am so pleased youíve been to see your GP - well done! I hope, for your sake that the referral/s is/are acted on quickly.

    Have you thought about getting some help with doing household tasks to save your energy for more enjoyable things?

    By the way, donít be fooled by what you see posted on the forum. Iím sure pretty much everyone on here struggles at times - I certainly do - and yet some of my cheeriest posts were written when I have felt desperate
    Dina

    Trying to keep positive, but not always managing.

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