poppy62
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  • Sorry about the possibility of ftd.......we were actually diagnosed with that first. I'm actually grateful that he has it. He has language variant, rather than behavioral, and it has rendered him incapable of understanding his future. He hasn't been able to speak in about a year, so you know, we hardly ever argue! :)

    My biggest issues right now, besides this giant ALS, is working full time, while being a caretaker, and his ex-wife, who hauls us in to court every few months to pick our pockets so she won't ever have to work. Frustrating!

    I hope you have a great day, and let me know how you're doing!

    Shelly.
    Hi Poppy,
    Enjoy shopping! We need to get groceries today, I want to go early as its still hot here...I also need to finish my Tues. list.

    Rog used post it notes for awhile until we found what he's using now, it was frustrating to him as well. Glad hospice is coming for you...

    Bella is 5 and I have to get her trained before she knocks Rog over and hurts him...

    Hugs,
    Jen
    Hi Poppy,
    There is only one incision and the tube is stitched to Rog's body in one place. He wears a gauze square over it, he bathes every day and I clean between the tube and the stitch, dry it and tape the gauze, the clip that holds the two pieces of the tube together and tape the tube to his abdomen... Takes maybe 5 minutes. All supplies are delivered to us. Sorry Clive is struggling, it's so hard to watch isn't it?

    Bella is a mixed breed, German Shepard, cocker spaniel and a dachshund. The shelter said she was "shy". I now know that means "nuts as all get out". She is a great dog once she's comfortable around you, but that takes awhile. I can't tell you how thrilled I was today!

    I'm hoping you and Clive can get this worked out... Change is so hard! You'll both be relieved when it is done... He'll put weight back on and won't struggle with swallowing... Make sure his prescriptions can be dissolved in water as they will need to go in the tube...

    Hugs,

    Jen
    Poppy,

    I got Bella to come to/with me on a leash!!!! Woohoo! It took 45 minutes of gentle tugging, repositioning, more tugging... But she did it! Didn't want to have anything to do with the trainer, she didn't flip out and get wild eyed like last time! Progress....the dog isn't hiding in the closet like she did the last time (for 3 days)!
    Woohoo!! No hand signals yet...

    Jen
    Poppy,
    Lectern Lounge under rants and raves... Needless to say we have no hand commands yet; just a nutter dog who will end up in the trainer's book about disasters in the making chapter.... It was really funny in hindsight to see her being dragged by a crazed beast. She was trying to dodge the flying poop and avoid being slammed into walls...and she's coming back! I half expected her to say I was on my own... Updates tomorrow!

    Jen
    Poppy,
    I put a bit of the story on LL... Bella is a challenge and isn't going to train easily... A fact I realized as she pulled the trainer off balance, dragged her through 3 rooms of the house on her hands and knees and pooped ALL the way.... The trainer (bless her soul) comes back on Friday. My homework, keep the collar on, let Bella drag the leash and me hold the leash with the dog attached. I've managed all three... But any pull on the lead and the dog loses it!

    Just one more ring in my circus of a house...heehee!

    Jen
    Okay...that stinks. There is nothing you can do about his mood, but you can help yourself, and hope it catches on. I'm not a pill-person, but I have a prescription for Atavan that, I swear, saves my life! I only take one or two a month, but knowing it's there to help me over hurdles is worth a Million Bucks....sorry, Pounds! Oh wait, the exchange rate, it's worth 638,662 Pounds!

    Just think about it. He really does get to be how he wants to be, and if he needs to be depressed and pissy (and not pooping for a spell would do that to me!) than that's what he gets to do, but YOU don't have to! Get the drugs, take them when you just can't smile another minute, and write to me. I really do understand and care.

    Wishing you a nicer tomorrow!
    Hi Poppy! I wanted to let you know that I feel your frustration. My husband and I are on our second marriages, have been married just a year, he's a bulbarian, has frequent bouts of dizziness and he's refusing the PEG. I don't feel like I've actually fed him a meal if I'm not wearing half of it in my hair!

    Here are some tips from me......he had originally lost a lot of weight when the choking first started (about 25 pounds) but has since gained it all back through really bad cooking! We used to have a very healthy diet, now I give him tons of soft, fatty foods. Think mashed potatoes with a whole stick of butter, thinned out with heavy cream. Clearly, heart disease is no longer a concern. For drinks, he takes everything through a straw, even his beer. Pills actually go down if I give them to him in applesauce. For attitude, find an antidepressant that doesn't mess with his bedroom activities. Not all of them do.

    Please let me know if I can be of any help to you. Shelly.
    Hi Poppy,
    Nos ey cups have a cut out for your nose so you don't have to tilt your head to drink. That cuts down on the chance of choking and aspirating liquids. You can get them on the in ter net. (no spaces in the words...we split words that get posts sent to moderators). Also have Clive pull his chin down when he eats. That tip makes his epig lotis close so he doesn't get food in his air way. I'm sorry he won't consider the tube....maybe the clinic will convince him....Rog didn't want the tube for the longest time! I was so frustrated, then one day he couldn't swallow anything, it was a mess like no other in a restaurant....two weeks later he had the tube.

    This forum has been the best source of support and information....I feel so much more able to cope as I can get someone's experiences and advice far faster than calling the doctor. I still call the doctor, but I also know what to ask for or expect.

    Keep trying gently, understand you are doing all you can...

    Jen
    Poppy,
    Have you connected with the ALS group nearest you? Sounds like hubby needs a suction machine, cough assist, nos ey cups. Do you have an iPad or iPhone? Download verbally (free) or speak it so you can communicate. Your neuro should also set you up with an ALS clinic so you see all the medical people in one visit regularly. This disease affects you as well, it's not just his disease. We are called upon to do many things we never planned on doing! You are his gatekeeper to the world, you will be deciding what comes in and what goes out. Since he is a bulbarian, speaking is going to become more difficult. Who is your support near you?

    Jen
    reading back what i wrote, i sound awful and terribly selfish... we have only been together just over three years, and everything has been turned upside down, but its not about me, i am well, i just wish my lovely hubby was well too.
    i desperately need someone to talk to...
    i dont even know if im using the forum properly as im new to it all...
    Hello,
    In Jan 12, hubby developed fasiculations,weakened legs and arms,excessive yawning and inappropriate emotional responses.Lost weight but most distressing has been the weakness in his throat so he is having trouble eating,drinking and swallowing with episodes of choking,spluttering,inability to shift mucus/phlegm build up.
    GP's been good,referred him to TIA clinic last year for slurred speech,then to Neurology,after taking a history,looking at how he presented and MRI, nerve/muscle tests,the consultant told us it is MND.Can see the changes in him,can't get away from feeling cheated,angry,sad and struggling to help him deal with episodes of mucus build up.He gets so frightened when he can't shift it,angry and frustrated.I know it's not aimed at me but feel like it is.He doesn't want the peg,doesn't see the point in prolonging it, which I try to understand.I fear what is ahead for us both and hope I have strength to meet it.Welcome any advice..
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