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CALS
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Hi everyone. I am new to this forum. My husband was diagnosed with ALS in July of 08. He has the bulbar onset and has lots of trouble swallowing and speaking. He has a gj tube and a communication device. He doesn't use the communication device too much yet, but people have trouble understanding him and he tends to use me for a translator of sorts -- but sometimes I have trouble understanding him too.

My sadness comes from many aspects, but one of the hardest lately has been social situations. Food is usually what brings people together in social situations. Since my husband can't eat foods too much anymore, it is so hard for me to see him with a longing look in his eyes for the food that is being served. He can only eat cream soups. I want so much to make him better!

Just wondering how others cope.
 
Hi and welcome to the forum. I was diagnosed with bulbar ALS in January of 2008 and have the same difficulties as your husband. It is hard because socializing is built around talking, eating and drinking. If these things are not possible to a person because of speaking and swallowing problems it is easy for them to become withdrawn and isolated. I have not really overcome this but what I have started to do is eat what I can (by mouth or peg tube) before I go out so that I at least am not hungry. I know that it is not really the best solution because I still long to be able to eat the hamburger or steak or pizza that everyone else is eating but it is the best that I have come up with so far. For the most part I still want to be there and involved so I go and try to participate with my various speech devices. I have thought of being like a wine tester except with food and take a bite and spit it out but I don't think that my wife (or anyone else) would appreciate it much. :twisted:

Sorry I can't be more help except to sympathize. If anyone else has any ideas I am open to hearing them.

Barry
 
Thank you so much for your reply. I really appreciate it so very much. I am sorry you too are experiencing this. It is emotional for me. I feel such empathy for my husband. I just wish I could make it better for him, and thus for me too.
 
Hi and welcome to the forum. I am so sorry that you too are faced with all the challenges that ALS brings with it. My Dad was diagnosed with Bulbar onset ALS in August 2008 and I truly truly sympathize with your feelings of sadness around social situations. My father has a feeding tube and is no longer able to eat food that is not blended. This weekend my Mom made one of his favourite dishes and it broke her heart to put it in a blender for him and then he could barely eat any of it. I don't really have any wise words of advice for you except that I try really really hard to focus on the fact that my Dad is still around and still can light up a room with his smile. I am thrilled that since getting his PEG tube he has gained 10 pounds back and his spirits are up. I know it's hard to see someone you love so much lose any part of their abilities but the most important thing I have found is to celebrate the small victories, count every one of your blessings and live in the moment.

Like Barry, my Dad still attends as many social gatherings as he can. Others are too difficult but my Mom tries to have guests over more often and plan things that my father can participate in.

You will be very glad you found this forum, there are a lot of brilliant people here and lots of valuable advice. Most importantly take very good care of yourself.
 
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