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lovetosew

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  • J
    oh love tosew i feel so bad i hate this disease so much .please tell your husband me and my wife are prating for him and you .this is just so sadi dont know what to say.i feel for both of you .i feel for you watching as he declines my god i feel like crying out to you god bless you and your husband and i pray god gives you and he the strength to carry on your friend jeff
    L
    Hi Jeff, I hope I get the message to you this time...yes, being silly sometimes helps us through the day. We laugh when we can because sometimes the tears flow, too. My husband was dx June, 2008. He was teaching Math at a local comm college and couldn't get his words out. He knew what he wanted to say and put on the board, just couldn't get it out. We became aware of fatigue about 3 years ago, then the voice change, noticed fasics, changes in behavior due to the FTD, peg, bi-pap, and cough assistn May, 2009, decrease in communication, December 2009, walker and becoming more dependent on me to change his clothes and total care. When he aspirated in March this year he could still walk with his walker, but since we came out of the hospital, he hasn't been able to. His diaphram is also just about gone and went on a vent in the hospital. He can still use his left hand and can move his left leg some. He is totally dependent now. Take care.....
    J
    hi lovetosew dont worry i do it all the time lol.that is just beautiful that you and your husband hold on to that siilyness .me and my wife do the same .laughter is good for the soul.i dont know if i asked when was your husband dx.and how has it progressed .for me i was dx in aug.09 today my voice is pretty bad i sound drunk the nuro has me on baclofen which does help and now i have a peg tube bot can still eat soft food but i only do it at dinner time to give my throat muscles a rest .they now want me to use a bipap only at night to give my lungs a rest .well i hope you and your huband are ok today take care
    L
    Thank you, Jeff, prayers are always needed and welcomed. I love to read your posts - you seem to be such a truly caring person for the forum folks. I believe I read you have Bulbar onset ALS, that is what my husband has, as well. You are correct - this is such a horrible disease that affects so many. I hope for a cure, too. We kept my husband's voice message on our phone so we could still hear what he sounded like before he lost his. I miss his voice so much. He has been so good throughout his illness. He was always cooperative and patient. I told him one time if he could survive me trying to take care of him, he could survive just about anything. We "danced" one day after he came home from the hospital - yes, he was in the hospital bed. I turned on some oldies music and held his hand and I danced and sang the songs to him. I was just being silly, but I got that million dollar smile out of him. Being silly is good sometimes. I hope you are feeling well today. Judy
    J
    oh im so sorry for your husband and your family.i really hate this disease.you must really have a loving family all sticking together to help with all the care that shows me real love .i just wish they would come up with a cure for us ,but for now we just have to acept it and enjoy the moments we do have .even when you said how it touched you to make and see him smile shows a loving person in you .thank you for taking time out to write me your all are in my prayers godbless jeffp
    J
    hi love to sew is there anything i could answer for you im openminded and try my hardest to find the time to rely asap
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