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  • How wonderful...Disneyland! I hope your trip is very enjoyable. It sounds like fun. Smart idea to take a wheelchair, keep your husband as comfortable as possible and you will both enjoy it more. I'm sure that is not news to you so for now I will just say "Have FUN!" Kris
    OK! I hope you have a wonderful trip, although I know it will be stressful. It will be OK to call me, don't worry. Love to you and be safe.
    Hi Shelley,
    Havent got a gun yet...but i did frog-march him, well, i snail-pushed him round the castle to feed the ducks today, out in the sunshine for an hour cos he doesnt want to do anything, im not ready for bed to chair life yet. he was glad after, enjoyed it.
    chess has lost its sparkle, he's hard to motivate at the moment, not even strip-chess!
    when gp mentioned hospice as he's refusing treatment, i felt the same but they are lovely, offered complimentary therapies to help him relax.
    i think its the word hospice and what we associate it with thats the trouble eh?
    i jus found tim lafollets web and found that so so scary, how do people cope? how will i cope?
    i want to take him away for couple of days for our anniversary but he's grumbling about the bed already and havent found anywhere yet!
    hope you are both keeping okay, bath is calling now.
    hugs to you both
    Hi Shelley, thanks for the warm welcome, although none of us are happy about the reason we are here. It is so difficult. Yes, my husband is experiencing the double whammy of ALS/FTD and his personality may have changed a bit, but if it has, it has been for the better. He just takes things as they come, is very easy to please and shows no anger at all. He does cry easily and laughs sometimes when I don't think whatever is happening is funny. I'm not sure if it is just his way of dealing with problems or if he really thinks those things are funny. I tend to believe it is just his way of dealing with the unexpected. It sounds to me like we are on very similar paths. I am so sorry you are experiencing all of this too, but relieved to find someone who understands what we are going through. Can your husband speak at all? If not, what type of communication do you use? I have so many questions for you, just don't want to overwhelm you all at once. Your new friend,
    Hi Shelley. Wish I could be more help but we literally got Glen's medicare card in the mail the day he died! Same story... we didn't realize we'd been signed up for it either. My inclination would be to find out what the cost of Kaiser's medicare supplemental would be so that you could keep your same "crew" but maybe save some money. If you're seeing Dr North you could always run it by his people and see what their experience has been.
    Good luck!
    Hi Shelley, just popping in to say Hello. Hope things are okay with you. I don't think I could cope with work now, my head is just so full of what is ahead of us. I'm kind of in limbo land..waiting for the next disaster. Not a good way to be. Clive's tired a lot more so we've not been doing much. He's getting his communication thingy next week, the keyboard with a voice thing. Well done with the sign language, I'm just not getting his 'charades' very well. Got Gastro and Resp appts beg Sept, hope he takes what help is on offer. Been asking me to get a gun!!!
    Might just buy him a water pistol! Happy days..Mair
    Thanks! I did have fun... We stayed up most of the night talking, which was was great catching up with their lives and just laughing! Came home to a 3 ring circus... But what is new! Loved seeing the girls!

    Thank you!

    I would like to ask you a question. I notice that your husband has ALS with FTD, correct me if I am wrong please.

    My question is if that is the case: Is he able to recognize you at all as this illness progress?

    Thanks a lot!
    Hi Shelley,
    Hope you are doing okay, we are now under the wing of St Davids Hospice Foundation with a lovely nurse who is going to come see us every couple of weeks. She's helping us sort his wishes and dnr stuff out, and despite being unwilling to meet her at first, Clive's going to get a six week course of complimentary therapies, starting with massages with oils.
    Life's been unusually quiet, we're waiting resp and gastro appointments in two weeks.
    I was working but 'retired' after carpal tunnel ops on both hands. I dont know how you still do it all.
    He bought a chess set, beaten me twice, me him twice too, if ftd present, could he still play chess you think?
    All the best to you...Mair
    Thanks a £638,662 lol !!!
    I'm due a gp appointment, for a smear (eeek!) will be updating her with my hubby's new status.
    Its easier to blub than not these days so I guess it wont be a prob getting some help there.
    I know they help cos i took some of his... many thanks for taking the time to write me, much appreciated. Anytime you want to offload, i'm here. I get a strange comfort from knowing Im not the only one trying to cope with this kind of life and that makes me think, if others can/are coping, so can i. it helps to talk. any ideas welcome. scuse typos. im still trying to get my head around the possibility of the ftd lurking too and gathering my info to do battle with the medics... nothing is straightforward anymore.
    hope my menopause head doesnt kick in yet or we are both done!! love to you both, tomorrow is a new day...:)
    Hi Cubcake, and thanks for your message.. It does me good to read the forum and hear from people whether they be cals or pals..
    It's such a devasting disease, robbing all we take for granted bit by bit.
    I am doing all the fattening stuff for him to eat with added ceam, butter, full fat milk, cheese etc.
    We are using the presricption milkshakes to make his Ready Brek too, he is adding sugar and jam..
    The biggest trouble is the drinking, getting it down the wrong way, coughing, choking, reluctant to drink again for a little while. Wont use a straw. His wee output is diminishing, he is damn grouchy cos he cant crap! Appointment with the Gastro people beg of sept. I don't know how to feel anymore, am just in limbo...waiting for some disaster to happen..
    Had his couple of pills in dispersible form or liquid so he takes them. Wont take anything to elevate his mood, says whats the point?

    Some days now I feel what is the point of me, gets me down some days more than others.
    You are so right about expectations and a true break doesn't happen til the 18th when his sister comes to stay with him and I get an overnight with the girlfriends...

    Ahhh, the things we do...

    Thank you do much for the glue! A good nights sleep and a readjustment of expectations and I am much better! I do need some time off though so I shall work on getting that on my terms in the next week!


    Thank you so much for saying that "Cup"! You are such a sweetie to take the time to do so. Hope you are managing to find a wee bit of time for yourself.
    Only the best to you,
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