Recent content by themommy

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    Scared / Depressed / Worried

    Listen sweet pea, you can get help! He can get disability from Social Security and Hospice will help you...Reach out..((HUGS))) to you we have all been there!
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    went to therapy

    Barbie Girl, Its ok to cry. Sometimes we just need to let it go to move forward. Think of it as tears are a catalyst that propel you to the next level, ya just gotta lighten the load...And so they flow. And you move closer to who you are becoming. Its not a sad thing. Its just a different...
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    What can I expect?

    First let me say welcome. You have come to family. :-) Each person who develops ALS is different. Some people (like my husband) got ALS in his pinky - and his upper body. It has been a year and he is still doing alot! He refuses to give into it. He has a positive mental outlook and it helps! The...
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    Feeling down today

    Barbie, I find Michael in Manic Mode = alot. It is exhausting...Just being around him when he is bouncing off the wall is sometimes more than I can handle. He too is very bright and his thoughts change like a pin ball machine. I think its just part of the disease. When he is like that -...
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    Things have changed

    Oh Jen, I am soo soo sorry. I pray you will find strength to get through this. It doesn't matter how many times we go over this in our heads - and how we have looked up more info than you can imagine...when it comes its different. And it HURTS, and Scares us.... I am praying that you will...
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    You know - Hospice has been wonderful to us. Although Social Security Disability was a pain in the rump to get - (I actually had to go to our congressman) we got it and it comes with some wonderful benefits....Don't do this alone. Life is hard enough. Reach out - there are people who will come...
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    Recognising FTD/ALS

    There are medications that will help with the FTD. My PAL experienced alot of rage and anger in the beginning...They don't even know that they are acting try and take it with a grain of salt. AND talk to the Dr. Get a psychiatric exam - they can issue meds that really helped...
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    My husband was just diagnosed

    TO ALL...As a CAL with a PAL with FTD...It is particularly hard. There are some wonderful websites that people will help you. One is LOTSA HELPING HANDS. One is CARING BRIDGE...Both really good at getting people to step in and help you out! Jkungle...welcome my have found a family...
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    How is this Happening?

    Lakeover, Do you have a suction machine? Get the respiratory therapist to get a cough assist machine. Micheal uses it all the time.
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    FVC testing at home

    Hey Barbie, When Micheal's CO2 is on the rise, his eyes get a cloudy look to them.....(It looks almost like he has cataracts - but of course he doesn't). Just FYI Amy
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    Christmas...and the decline...

    you hard as this is...I still feel blessed to have found this site. I try to stay upbeat and positive, but sometimes it just gets to me. After hearing your stories, somehow I feel better knowing that I am not alone in this fight...
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    Christmas...and the decline...

    Christmas has left me empty. The season for joy and happiness has been haunted by the thought that this might be the last. Michael has gone down hill in the last six months...He is dependent - although not all day - on the ventilator. It has gotten into his digestive system - so food creates all...
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    Diane, If I can help you at all - I am in Florida and would be happy to do whatever I can to ease your road....Let me know if there is anything that I can do to help you out. You came to "family" here... Amy
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    Respite Coming!

    I AM SOOOO HAPPY FOR YOU! Everyone needs some time out every once in a while! ((HUGS))) :-) Amy
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    Fiancee, First understand one thing. This is the hardest thing in the world to endure. The disease hurts everyone it touches. It is relentless. Just when you think you understand - it throws something else at you. Its just the way it is....So hold onto your hat - life is in transition for you...