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dana

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I have been reading everyone's posts for the past 2 1/2 months and never written. Before I tell you all my story, I first have to say thank you for all that you write. You have all given me hope at different times, and answered questions. Back in March, my dad was told that he has early symptoms of ALS. His speech is horrible. He basically can only say single words at a time. Over the past month, his arms have felt "weird" at night time. The thing that freaks us out the most is he has started choking. It has happened a few different times now, and it really scares him and my mom. I was wondering if there is any medication that he can be taking to help with this, and/or what is the best thing he can be doing to help with the choking. I also wanted to thank those of you who informed the forum about Lyme Disease. Because of you, I had my dad checked for this, and he does have some form of the disease in his system. He will be talking with the Mayo Clinic about this some more early next week. I am beginning to believe the Lyme's probably brought on the ALS thing. For those of you who have any suggestions about the whole choking thing, could you please take a moment to help me out. I would appreciate it more than you know. Thanks again! D.
 

Al

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Hi Dana and welcome. From the sound of what you are saying I would assume your dad has bulbar ALS. This type usually affects speech and swallowing first. Is your dad choking on food when he is eating or is he choking after coughing trying to rid his chest and throat of phlem? If it is during eating that he is choking suggest to him that he have no distractions while eating. Turn off the radio or TV and try to limit his conversation during eating. Concentrate on each bite and chewing it fully before swallowing. Try different consistencies of liquids to drink while eating. Some people do better with water and some people do better with thicker drinks.Hope this helps. Some of the others may be able to offer more information as well. Take care.
 

dana

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Thanks Al for the reply. My dad is choking while eating. The food gets stuck deeper down his throat near his adam's apple. It has only happened a couple of times, but it's enough to scare us. I told him tonight about what you said with drinking while he eats. I hope it helps. It seems like any time something happens with my dad, (whether it is choking, having wierd sensations in his arms, losing his ability to talk, etc.), it is just another horrible reminder of what is to come with this disease. I know everyone says take one day at a time, but it is hard to not look at what the future is going to bring. I don't want him to suffer or be humiliated. He truly is the heart of our family, and to see him go through this stuff is just plain crappy. It does give me hope seeing how brave you all are. I know that my family is not alone in this, and God does everything for a reason. Once again, thanks for the imput.
 

Al

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Not a problem. Let us know how he does and don't be afraid to ask questions. We're here to help.
 

PALS Mike

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A little trick to prevent choking...

Drop your head (chin towards chest) when swallowing.

The motion naturally closes the windpipe, preventing food from going down the wrong pipe.

Works for me :wink: .
 

TBear

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Hi Dana:

I think that these guys might know what they are talking about... but you should also have somebody do an assessment of his swallowing capability. A speech therapist will do a barium swallow test for that and advise you. It might be something that you can talk about with your dad. Good luck.

Cheers

T.
 

TBear

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... hey Al... Gift from God? Does that mean you'll be growing a great long beard?

T.
 

Al

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Well you never know. I'm having difficulty holding the razor to shave now and even though we've been married 35 years not sure if I trust Lee with sharp objects around my neck. Although, way back when I got the big V the orderly offered Lee a job as a shaver because she had done such a good job. I think he was joking about the job but she had done a nice job. No nicks or cuts so I might not have to grow a beard. We'll see.
 

TBear

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... you let Lee loose with a razor for the big V! It's one thing to let someone loose around my neck with a razor... but the thought of that's enough to make what little is available dissapear completely!
T.
 

Elaine

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Oct 6, 2004
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Hi Dana,
I've had problems at the beginning of this disease with chocking. Now I don't but I have to be careful of what I eat.Toast is very good we need some texture. I have problems with salad stuff , It keeps getting stuck.
We have to try different things. Fresh bread is no good also.
I also can't chew steak but roast beef and mash potatoes are fine.
Pasta is also good. Juice is good especially tomato probably because it's thicker. I use to chock on water too, but like Mike said put your chin down and swallow, much better.You just have to make adjustments as you go and try a variety of things. I take a lot longer to eat also I can't rush other wise I will choke. I hope this helps a little.
Stay strong.
 

Carol Deboer

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Hi Dana,

I concur with the rest of the gang. A swallowing assessment should be done right away. Keeping your chin down when eating is also a must. It is difficult to watch someone choke, I know. However, you will find the consistenty of food will help with his swallowing. Another thing you may have to look at is a feeding tube. I know that this sounds scary, but it isn't. He needs to get his nutrition and calories to sustain, and this might be what he needs if his choking gets worse. Henry ate a lot of thick soups tward the end, and with this he did not have to move the food around his mouth with his weak tongue and throat much. Good luck to you. And Lee, make sure that razor is sharp ! If not, go to an electric, that might scare Al as much. A hedge clipper might be in order if he grows that long beard. Have a good night all. And Dana, welcome. We will be here for you and try to ease your burden. God Bless.

Stay Strong,

Carol
 

Jane

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swallowing and food texture

Hi Dana: While sis has had a feed tube since Feb. she still likes to eat what she can. We found that moist food is easiest. We also bought a small hand blender in WalMart ($8.00) it has proved to be a huge help. If we blend things for her (soups, fruit, veg and also meats) it does not tire her so much and she gets to enjoy things. We also find added gravy helps. We add V8 juice to pasta to thin it out for easier eating.
And since calories are needed we blend strawberries, with lots of sugar and cream, goes down easy and tastes great.
We do not blend things down to a puree texture just chop them up to a more suitable texture.
Sis was very apprehensive about getting a tube. The procedure itself took only 5 min. We were out of hosp. and on the way home in 30 min. It was sore and uncomfortable for about a week. It has been a huge help for her, if she is too tired we just "tube" her with jevity, all her meds go through the tube, she gets much more water because we must flush after every use of tube. At this point she uses 3 can of nutritional supplement a day as well as much food as we can stuff in her!
Her Grandchildren just take tube feeding as a matter of fact, ( little 3 yr old got his cough syrup syringe and tried to eat his yogurt with it!) well that's how Grammie does it!
Sorry to be so long winded but hope this will be of some help for you.
Jane
 

Timshelper

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Nov 11, 2003
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Hello Everyone new and old,
I finally got my computer fixed and did it myself, where is the good help when you need it. Its funny that I signed in today because I had a question about feeding tubes and now I'm feeling a little bit more relaxed. Tim went to the hospital today to be fitted with the tube but it looks like he is spending the night there. When I first heard the news yesterday it kind of freaked me out and worried me that maybe his situation was getting worse because he needs the tube already, but it seems that there are people already experiencing the tube and still eating and its really not a concern. Am I right to assume this? It bothers me that there will be pain associated with this because I dont think his health care providers told him this. Believe it or not I am still not living with the stubborn knuckle head I cant believe hes still on his own. I'm glad I can finally read everyones stories and can get back into the swing of things and maybe tell you a few stories of my own. This darn box is our only link to everyone and when it goes down you feel like you've lost all your best freinds. I will be writing again soon and I hope everyone is experiencing the best days they can and coping with all the crap that comes along with this illness.
See ya
Kim
ALS About Loving Someone
 

dana

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Messages
216
Thank you for all of the advice. I let my dad know about putting his chin down while he swallows. Hopefully this will help. Like I said before, the choking has not become a huge problem yet, but I am sure that it will get worse before it gets better. How bad do you let the choking get before you go for the feeding tube? My dad is still eating all normal food, and has not needed to switch to eating softer food yet. I think he still has full function of his tongue. He is supposed to go to the Mayo Clinic next week, so maybe he can get the throat analysis done there. They are going to be doing a spinal tap on him to check for Lyme's and menengitis. Since he had a positive reading for the Lyme's (which was done at a different clinic), they want to test again there. They think that if he does have Lyme's Disease, which who knows how long he has had it, that it could bring on other things. The doctors at the Mayo are the ones who told him that they think he has early signs of ALS. With all of the research I have done now, I feel like I know more about his illness than the doctors do. My family were the one who informed them about Lyme's Disease. I don't want to rag on the Mayo Clinic, because they are supposed to be some of the best doctors in the US, but they never came up with the Lyme's stuff. It just seems hard to trust the diagnosis that they so are eager to give. We just continue to pray that the doctors will be able to help him, and for God to give my dad strength and courage. He's a little down in the dumps right now, knowing that he has to go back to the place that just a couple of months ago told him that he probably has ALS.
 
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