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Dilemma and unsure of the way to go.

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    #16
    Hi Tim,

    Hopefully, you will be able to get a WAV in the very near future, because it should enable you and Mary to get out and about so much more. The weather should get warmer in the next few months (hopefully!) and so it would be great if it was easier for you and Mary to get to your local wildlife park etc regularly.

    I have been thinking about you and Mary, and I'm sorry that I can't offer you any practical help with things. All I have to offer are a few suggestions, in the hope that they might help.

    I was thinking about you and Mary not having much company during the day. The MNDA has Association Visitors and there might be one of these in the Region where you live. Understandably, it is not so easy for us to get out and about to see friends and family, and so I think its great if one of their Visitor's can visit us at home for a chat. You are probably busy with things at the moment, but sometime in the future, you might want to phone MND Connect to find out if one of their Visitor's could pop in to see you and Mary from-time-to-time.

    If Mary hasn't been referred to your local hospice, this is something you might want to consider. In my experience, the people at the hospices are very kind and they are passionate about wanting to improve the quality of life of people with terminal illnesses. I notice that you live in Berkshire, and have provided a link to the website about Sue Ryder hospices, including those in Berkshire (just in case you don't already have info about them):-

    https://www.sueryder.org/how-we-can-...f-kent-hospice

    I am sorry to hear that you don't get much sleep. It sounds like Mary doesn't have a good night's sleep either. If she is unable to sleep because she is stressed/anxious about things, her GP might be able to prescribe some medication to reduce her anxiety and hopefully this would enable her to sleep more easily. I recall that Mary is currently taking medication for 'emotional lability', but it must be quite distressing for you and her that she still gets upset and tearful in the evenings. Perhaps her GP can adjust the dose of her medication so that it is more effective?

    I do feel for you and Mary, because like many of us on this forum, we have to cope with everything with little or no help from outside carers. If the only funded care that you are provided with is 3/4 an hour a day from Monday to Friday, I hope that there is a way of getting the weekly hours of funded care increased, so that you get more time to relax.

    I understand that Marie Curie nurses can sometimes provide some night cover, so that a carer can get a good night's sleep - and this can be organised via a GP, district nurse or specialist nurse. You might want to consider looking into this option, now or in the future.

    Please look after yourself Tim, and please make sure that you are eating regularly (sorry for being a bit of a 'clucky mother hen'! - but, sometimes, I worry about the carers who spend so much time caring for others, that they have very little time to look after themselves).

    I hope you and Mary have a lovely weekend. Hopefully, you will have the opportunity to relax and enjoy watching the rugby on TV, if you want to.

    Love to you and Mary,
    Kayleigh x
    Last edited by Kayleigh; 8 February 2019, 18:56.

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      #17
      Hello there, you may know this but motobility do offer grants for the upfront payments, phone and ask. Also if your present motobility car is no longer suitable they will let you return it before the contract ends with no penalty.
      My husband has a Peugeot WAV, horrible horrible vehicle, he has permission to return it but the way things are going we're sticking with it for now.

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        #18
        I just read motability rules. They state a car can be exchanged for a WAV up to 4 months prior to the end of a contract for up to £250 admin fee. I couldn't find info of exchanging very early. But my case would be complicated by the fact that where I got my motability car they don't do WAVs. So, I'd have to end my contract with whatever penalty, maybe £250 and loss of good condition bonus (the same as if you give your car back and end participation in the scheme). I'll keep my Grand C-Max as long as I can then make enquiries. But I wish I had a WAV now so that I can go out in my powered wheelchair. 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.

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          #19
          Originally posted by Lynne K View Post
          I just read motability rules. They state a car can be exchanged for a WAV up to 4 months prior to the end of a contract for up to £250 admin fee. I couldn't find info of exchanging very early. But my case would be complicated by the fact that where I got my motability car they don't do WAVs. So, I'd have to end my contract with whatever penalty, maybe £250 and loss of good condition bonus (the same as if you give your car back and end participation in the scheme). I'll keep my Grand C-Max as long as I can then make enquiries. But I wish I had a WAV now so that I can go out in my powered wheelchair. Lynne
          Phone Motability they will want you to have a vehicle to suit your needs.

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            #20
            Thanks MM's Wife, I will phone motability after we sort out the stained passenger seat (white paint on it). 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.

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