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  • Deb
    replied
    Hi Jerry,

    Please dont feel sorry for " droning on " . We all do it sometimes and have a rant and a moan and you are very entitled. You have made such a difficult and heartbreaking decision and I really feel for you but you will get the care and support you really need in the UK.

    Bravo to you for booking business class ! One of these days .... We returned last night from Spain on a budget airline but the special assistance was fantastic at both ends, as I cannot walk. They even gave me their coat in the lift to the plane because I was cold !

    Thinking of you and rooting for you too.
    Love Debbie x

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  • Jer788
    replied
    Thank you so much you lovely people xxx

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  • Lynne K
    replied
    Hi Jerry. It sure must have been a very difficult decision to make, and will continue to tug at your heart strings. But I think that it's a very sensible move. I hope that your flight and the rest of your journey will be uneventful? Love Lynne

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  • Ellie
    replied
    Hey Sad B with the Limp You are not "droning on" - if anyone understands what you're going through, it's us.

    You're uprooting yourself from an otherwise idyllic life to relocate to the UK for one reason only, that damned MND, and that must be unbelievably difficult for all concerned. We're rooting for you mate.

    Glad you're turning left at aircraft door, that should get you not only more comfort, but more attention too.

    Best wishes,

    Love Ellie.

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  • shrew
    replied
    So sorry you are having to return

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  • Jer788
    replied
    Hi mate, I fly on the 25th April. I’ve splashed out on business class with BA so at least I’ll get a bit of a kip. A reluctant trip but I’m terrified of taking ill out here. The hospitals are more in the line of 5 star hotels and 2 star medicine at 10 star prices. I went in a couple of months ago to enquire about a feeding tube as people on here said get it fitted while you were still reasonably strong but surprisingly the doctor advised against it while I could still swallow. They quoted me £2k if no hiccups. The money is of little consequence I’m just the same as everyone else on here and want to slow it stop it or get better and I’ve tried what I can out here and I’m still deteriorating.
    Sorry for droning on Terry I try not to talk about my illness too much in case everyone starts thinking here’s that sad [email protected] with the limp. ����
    Much love Jerry

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  • Terry
    replied
    Hi Jerry;

    I don't know what to say but my thoughts are with you.

    When are you flying?

    Hugs Terry

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  • Jer788
    replied
    Hi Kayleigh, Debbie and Ellie, thanks for your kind concern. I’ve booked my flight with assistance, however with a different airline since flying back here last year. I have already registered with GP just need to swap from Maidstone to Central London.
    I’ll locate the local MND group also.
    On the personal side this has caused much consternation here, but everyone is well provided for and I’m leaving very reluctantly with a clear conscience.
    Thanks again for everyone’s concern xxx

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  • Kayleigh
    replied
    Hi Jerry,

    Sorry that you are going through such a tough time at the moment.

    I agree with Debbie - wherever you decide to live isn't a 'cop out'. You are being very brave and sensible by thinking about where the best place is for you to live, taking into account your healthcare needs.

    If you do go ahead with returning to England, hopefully your wife will be able to travel with you and spend some time with you at your brother's, even if she does need to return to Thailand for a while.

    On the practical side of things, you should be able to get 'special assistance' during the flight and at the airports, but I think this needs to be booked at least 48 hours in advance. Further information about 'special assistance' and links to airport and airline websites, is on the caa website:-
    http://https://www.caa.co.uk/passengers/prm/passengers-with-disabilities-and-reduced-mobility/

    Soon after your return to England, you would probably need to register with a GP so that you can be referred to an MND clinic. Your brother might be able to get you a registration form from his GP surgery so that you can register there.

    If you do not get help and support from a physiotherapist or occupational therapist straight away, your GP might be able to refer you to wheelchair services - so that, hopefully, you would not have to wait long to get a suitable wheelchair provided for you. In the meantime, the Red Cross has a manual wheelchair loaning and hire service, which you might find useful:-

    https://www.redcross.org.uk/get-help...w-a-wheelchair

    A good person to contact about what help and support is available to MND patients in region where your brother lives, is the local MND Regional Care Development Adviser. The Adviser should be able to let you know what would be the best way to access the relevant healthcare services, available to you as an MND patient in England.

    https://www.mndassociation.org/getti...ment-advisers/

    You obviously have got a lot to think about, and so I hope I haven't given you too much information in this post. I just want any move to England to go as smoothly as possible for you. As you are probably also aware, the MND helpline will also be able to give you advice.

    It must be such a difficult decision to make. Hopefully, you can find some comfort and strength from knowing that you will always have the love and support from family and friends, both in England and Thailand - and that will never change, wherever you decide to live xx

    Love to you and your wife,
    Kayleigh x
    Last edited by Kayleigh; 20 March 2019, 16:10.

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  • Deb
    replied
    Hi Jerry,

    I am so sorry you have to return to the UK because you are struggling. It must be heartbreaking to leave your family but it is not a " cop out " on your behalf. You need the right care and support to make life easier and safer, even though it is sometimes impossible to accept.

    Sorry too for butting in. I saw your post and I am thinking of you.
    Love Debbie x

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  • Barry52
    replied
    Hi Jim aka oldnewyorker.

    Your posts about RCH4 may be giving some of our newer members false hope. The drug developer behind this is no longer accepting new patients for the charitable issue of the treatment.

    Best wishes,
    Barry

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  • oldnewyorker
    replied
    Hello again to everyone;

    I'd like to point out that, while it is not a cure, the experimental drug RCH4 is described by the people using ]it as having a "Major" effect on the progression of their ALS. The RCH4 charity's website provides the attached chart which shows the perceived effectiveness of RCH4 as compared to Riluzole and Edaravone.

    These percentages were obtained from patient reports on the website "Patients Like Me".

    The bulk of RCH4 reports in the "Major efficacy" column should give a good indication as to why RCH4 users (such as myself) advocate the stuff as strongly as we do.

    best to all, jim s


    [ATTACH=CONFIG]991[/ATTACH
    Attached Files

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  • Jer788
    replied
    Hi Ellie, my wife wants me to stay here but ( I am bricking it and she is very capable but if anything happened to her I have friends but nobody I would want to put in any position,) families etc. plus doesn't like the uk very much so she will visit. The Thai government are getting very difficult with retirement visas but support is the main thing. My brother will look after me as he works from home my sister and Mum are also not far away. For me to come back to the uk is the beginning of the end and a cop out on my behalf. How do you say Goodbye to your five year old granddaughter ?

    Thank you for your concern xxx Jerry

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  • Ellie
    replied
    Hi Jerry,

    Sorry for butting in...

    I am really sorry to hear you're struggling and have to head back to the UK. Will your wife come too?

    Big hug,

    Love Ellie.

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  • Jer788
    replied
    Hi Kayleigh, sorry for the late reply, I’ve been on and off the sit but hadn’t checked the Edaravone link. I’m not doing brilliantly tbh. Life as I’ve said on here if you’re not sick would be fine but it’s getting evermore apparent I’m going struggle. My wife is doing all she can administering the Edaravone and general care but the lack of support here is the showstopper. I cannot walk far aided at all now so I’ve decided to head home next month. A traumatic few weeks to be sure.
    How are things with you ? PM me if u like
    Best wishes Jerry

    Leave a comment:

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