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thomkat

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Joined
Jan 25, 2007
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21
Reason
CALS
Country
US
State
NC
City
Wilmington
I sent in a reply, but just realized how to start a new thread!

So I'm just introducing myself and thanking everyone for the responses and insight you provide!

Here's my story:

My husband was diagnosed with ALS in 2005 after many months of chiropractic and orthopedic care for pinched nerve and other ailments. He has no use of his arms or hands and very limited movement in his legs. He is in his power chair 24/7, even prefers to sleep in it. (Well I use the word sleep loosely...he really doesn't do very much of that!) His breathing is OK, a little less than 70%. We have a bi-pap but he finds it uncomfortable. We got the feeding tube in October 2006, but only used it for his meds until about a month ago. But his choking episodes got worse and worse and it would take him longer to "get over them". It was horrible to watch. Finally, he asked me to just put it in the tube. Now he receives all of his nutrition through the tube. But he did not want to use any of the "formulas" i.e. Ensure, Boost, etc. I generally cook beef, chicken, fish, etc. and combine with organic vegetables. We ordered the Vita-Mix blender (which I jokingly say can liquify pine trees!) So it purees everything so I can put it through the tube.

I am his caregiver and have given up my job to take care of him. Sometimes I am overwhelmed. We have two kids - 14 year old girl and 12 year old boy. They are great, but I worry about everything they are having to "watch". This was the Dad who took us on great vacations... swimming, snorkeling, white water rafting, hiking and the Dad that played basketball with them in the driveway everyday when he got home from work...needless to say, their world got turned upside down. Would love to hear how you are dealing with your kids.
 
Hello Kathy!
I just posted a respond to you in the other thread! I am glad you found this forum and I hope it will help you as much as it has helped me :-D
Sunny
 
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