HeatherFeather
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  • Follow-up. In reading the message I sent you I see my brain was quicker than my hands/typing.

    "I just realized I haven't seen any post lately from YOU." "I hope THINGS are quiet..."
    Hi Heather,

    I just realized I haven't seen any post from lately. I hope this are quiet and uneventful for you. Wanted to share that my Rick began his eternal life on March 3, 2015. It was a 5 year long struggle with this disease, albeit through it all God was with us every step of the way. And it just amazes me on the realization of that fact, sometimes He was obviously right there with us and other times we didn't realize until weeks/months/years later. I thank God that we, me and our kids, were all with him.

    Please know I'm here for you and if there's anything you want to talk about or need please let me know. I realize we're far from one another but if you ever make it to Austin, TX know you have a friend here.

    God bless you...
    Oh no, Kelly is going to have to step up to the task, you can't end up with another one to care for, or care around!
    I'm not a pro photographer at all, but I do go around my property every day at least once spotting for koalas and put them up on the fb page for my property. I'm doing habitat regeneration and hoping to end up with a little tourist business here, but that's proving to be a difficult slog to meet council requirements and I'm not good at this point at difficult slogs. Once I was... one day I may be again xx
    How old is Kelly?
    I think that once she gets over the shock and begins to help with her dad she will find that it is better to be there and involved. Especially later, once he is gone she will never regret it.

    I can drive to the Sunshine Coast in around 4.5 hours, so it's not that far from me. My mother and sister live there but I haven't been up there for maybe 8 or 9 years.

    Breaking down isn't weakness, it's human. This is as hard as it gets Heather, nothing tops caring for a terminally ill husband xxxxxx
    Hi Heather, it's so distressing when they progress so rapidly. I would listen to people taking months to get some equipment or getting something and then being able to use it for a long time and I would look at Chris and think OMG what is happening?
    We saw him lose something pretty much every single day and I never got over the shock of how nothing worked or helped for more than weeks.
    I'm so glad you are going to have his daughter to help. Well I hope she is a true help to you both. She will be shocked, but I'm glad she is coming as she would not like to have lost him without getting to have time with him helping. xx
    biggest hugs to you Heather, I went through rapid progression and I know how distressing it is to have everything happening so fast that you can't keep up. Tillie
    Hi Heather,

    Thank you for reaching out. I look forward to communicating with you and sharing our experiences. Again, reading your post was like reading something I would have written.

    While I don't visit the forum as often as I should I do come back to it. I don't visit it on a regular or daily basis because as much as it's a great resource and sounding board, I find it to be very difficult as I read some of the post. Anyway, I need to change my mindset and see it as more of what it is a "Support" group setting and know that I am among friends.

    Appreciate you...
    Hi Heather, just spotted your request. We are a sisterhood, aren't we. Have to admit, feels very strange (and sad and lonely) starting out a New Year with my guy. But I am an optimist and that gets me through. Hugs. Donna
    Hi Heather,
    Happy to be your friend, we have a hard journey ahead of us, I have been truely blessed with a wonderful husband, we have been married nearly 35 years, Brad as limb onset in his thighs and needs to use his arm strength to get himself up out of chairs, his fasciculations are really crazy at the moment , but he can still walk with a walker , he can talk and at this stage has no swallowing difficulties. We will make the most of our time together by doing things on good days and on the not so good we will just snuggle up together and have lots of hugs.
    Hugs to you Heather, love Gem
    Hi Heather! I just saw your note today. I have company and it's hit or miss on the computer. I'm sorry about your husband. Mine was diagnosed nearly three years ago. It has been quite a struggle. How different every ALS patient is. He can no longer talk or eat, but he can still walk, golf, type, mow the lawn (riding) and drive. The PEG tube saved his life, he hasn't eaten in over a year. He got the tube early on so he has never lost much weight. Yes, I still Zumba! That is one of my outlets and I love it! My hubs is becoming very fatigued due to his diaphragm failing. He uses a biPap, suction machine and cough assist quite regularly. It's tough, what a struggle is right! I'm not sure he has much longer. Hugs to you too, Heather. I understand your situation! Prayers for your hubs, too! Nancy
    You can just make short one or two sentence replies on threads, don't write volumes, but we want to get you to tip it to allowing PM :)
    People will understand, especially if you post in the FTD section, but the PALS do read there and often PALS or CALS with no FTD will get in the conversation and it can be distracting.

    I'm here to help and support however I can. I survived! Tillie
    If you can step back a bit, start to observe him, maybe record some things and look for patterns of behaviour that he did not previously have, then you can strongly suspect FTD.

    Now you can start to realise that this is the disease talking, and you can start to put on some armour to shield yourself from the blows.

    I will strongly encourage you to start participating on lots of threads here, just short replies is fine. There is some magical something that will trigger you being able to send and receive PRIVATE messages, and I think you may need this. The owners here will not tell us what this magic is, but I suspect it's to do with spreading a number of posts around threads. It's to do with authenticating you are a real person who is contributing, even if it's a computer algorithm.
    OK, wrong I need 3 messages ...
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