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  1. #61
    Forum Member
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    Feb 2019
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    219
    Hi panniertank,
    Good to hear from you. I don't like the hot weather either, I will be pleased when it cools down a bit. I don't cope well with having Mnd. It scares me so much. I have lost my voice now and I use to love to talk. It helps if I don't think about it. That's the only thing that helps me. I don't even like reading about it
    Take care
    Sheila

  2. #62
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    May 2019
    Posts
    60
    Thank you Sheila . I am sorry that MND scares you and you have lost your voice. I agree that not thinking about MND can help;- just take one day at a time. But people also mention planning ahead etc, so it is difficult just to take one day at a time all the time. I have suffered with anxiety most of my adult life and the best way I found to deal with it was to be active. For example the best I feel at the moment is driving my car. I am gutted I can't take my mum out of her care home any more. Providing care for her and giving her my time for a bit of quality of life was so important and enjoyable for me.

  3. #63
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    598
    Hi Panniertank, I'm really sorry that you are finding it so difficult to cope with your diagnosis. Do you attend an MND clinic? I am wondering if there might be a neuropsychologist available for you to talk with. Failing that, could your GP do a referral to mental health services for you to have counselling of some sort?

    Are you seeing any healthcare professionals in connection with the MND? If so, perhaps one of them could give you some help and support.
    Dina


    Trying to keep positive, but not always managing.

  4. #64
    Forum Member
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    Feb 2018
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    57
    I really feel for you. You are having such a rough time. You do need to think of the future. In my area we have complexes with flats you can rent or buy. They are set up for disabled people with appropriate bathrooms, space etc and dining rooms etc and on site cares. If it was me in your position I would look at this. As for continuing healthcare funding - it is not automatic (sadly) for MND sufferers - it is based on an assessment and depending on how high level your needs are you could get turned down - although you can get reassessed as your needs change and ultimately it is very likely that you will get it. Take care

  5. #65
    Forum Member
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    May 2019
    Posts
    60
    Uggh. I have been stuck in the house most of the day without the confidence to get out and walk. But I finally got some confidence to walk to my local shops early evening. But I struggled and my right leg felt weaker than normal. I persisted and walked very carefully. But my balance was bad when climbing up and down pavements to cross roads. I really struggled climbing down one pavement and I used my walking stick to try and help but after stepping down I fell backwards. Luckily I didn't hurt or fracture anything and a group of young people checked me and helped me get back up. They then even drove me back to my home. So kind. But the experience destroyed my confidence to get out of the house and walk. As ever if I do something positive to counter this condition it eventually always kicks back with a negative response.
    This morning I visited an extra care home with my social worker. But it just brought home my fear of losing/leaving my own home and I was surprised at how much it would cost/additional costs etc. But today's fall just brings home my other fear about how I will cope living alone in my own home and if there will be enough care available.
    I am so sorry. Lots of you have given me advice and feedback but I feel so isolated and alone and I just don't know how I am going to cope in the future and/or make the massive decisions about staying in my own home/spending lots to modify it to be wheelchair accessible or selling my home and moving to something like an extra care home and again, very expensive. It is bad enough coming to terms with the diagnosis/prognosis of MND but there are all these other massive decisions to make and financial worries.
    I am sorry to say this but sometimes I wish I went to sleep and didn't wake up;-passed away peacefully. The best of my life is over ( and it was great in times in spite of my spinal rheumatic condition ) and a part of me feels less afraid of dieing than all the disability and stress that lies ahead.

  6. #66
    Forum Member Gillette's Avatar
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    Mar 2019
    Location
    Greater Manchester
    Posts
    598
    Oh, Panniertank, it is so sad that mentally you are struggling to cope with your diagnosis. It's so difficult to make the sort of decisions you have mentioned when you are alone. I wish I had a way to help you deal with what is happening but all I can offer is empathy and understanding. I can certainly understand your loss of confidence in your walking, having been through something very similar before my diagnosis.

    You don't need to apologise to forum members, we all know how difficult life becomes, in all sorts of ways, once you have a diagnosis of MND. I also understand your thoughts about dying peacefully in your sleep. It was brave of you to admit those thoughts.

    Do, please, look after yourself. I hope you find a way to make the decisions that need to be made so that plans can be put into action.
    Dina


    Trying to keep positive, but not always managing.

  7. #67
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    903
    Hi Panniertank, I'm sorry about your fears and stress about decisions. Maybe ring MNDA for a chat to help you make a decision. Take care. Lynne
    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.

  8. #68
    Forum Member
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    May 2019
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    60
    Thank you Lynne and Gillette. Another night of chronic insomnia for a change. I'd been thinking that my condition had plateau' but yesterday's fall and the way my leg/balance feels this morning makes me suspect that it has progressed. I can't believe that I did a walk on Monday and I was walking continuously for well over an hour. And now at the end of the week I am struggling just to walk around my house!!

  9. #69
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    903
    Oh dear Panniertank, so sorry for your insomnia and difficulty walking around your home. Sleep is very important. I'm more wobbly if over tired so it's possible that this is why you are struggling so much this morning. Take care today. I hope that you can have a good doze during the day and it helps. I hope that your OT is organising that you receive a walker. But if not I think that you ought contact him or her to explain. Obviously on a Saturday nobody is available.

    I hope that you stay safe over the weekend and can sort something out on Monday. 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.

  10. #70
    Forum Member
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    May 2019
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    60
    I will contact my physio on Monday. In my MND clinic it appears to be the physios that select walking AIDS. When they first assessed me I asked about rollator / walking frames but they didn't think I was at that stage, so they gave me walking sticks and balance exercises. It is strange;- I take one walking stick with me and, as I was taught, I carry it on the opposite side to my weak leg. I don,t use it with every step, I use it mainly when I stop to cross roads. But as I stated before it didn't help me to step down off the pavement.
    Another thing I am worried about is my stress and anxiety. I have suffered with it all my adult life and the best way I found of dealing with it was to keep active . In my jobs, the adrenalin often got me started full on with the task in hand. But my ability to be active is already badly affected and will worsen as my disability worsens.

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