slowly starting to have trouble swallowing

[doug mulroy]

Hello, my husband has been living with als for seven years, has been gradually getting weaker. It started with his balance, tripping and gradually being confined to a wheelchair. Just this last week he had to be admitted to the hospital with pneumonia. Now that he is back home his symptoms seem to be getting progressively worse. Now his swallowing is starting to go. Does anyone have any suggestions re: liquid nourishment?
I do know about Boost, and Ensure but would like to make my own as I think it would be much healthier.
I do not always have time to be on the computer. Sometimes it is days or even a week before I get to it. This als sure has been a hard journey to take.
Take care and have a good nite.
Laura Mulroy
Salmon ARm BC

 

[SoniaT]

Hi,

My Mom had trouble swallowing food and drink. The speech pathologist gave us packages of thickener produced by a company called Resource, I think you can get it at medical supply stores, or they can order it for you. It's basically just corn starch. An interesting thing is that they have thickened coffee, go figure. My Mom never really liked any of it much but it came to a point where she did not have a choice any longer.

I hope you can find this product and I hope it helps.

Sonia Thomson
Burnaby, BC

 

[doug mulroy]

trouble swallowing

Thanks for the replies. I haven't had too much time on the computer. I will however try some the solutions you have mentioned.
Doug is doing a bit better but his balance is next to nothing. We have a hoyer lift but I don't think it will be very benificial to me as his neck muscles are very weak. The O.Theripist(spelling?) said that he will probably need two people to operate the lift to move him properly. Any way thanks again and take care.

 

[kaneact]

talk to your doc

Doug-
My mother -in law has bulbar ALS and (onset of speech loss, swallowing and breathing comes first instead of last) she lost alot of weight from about August till Oct. because she simply couldn't get enough nutrition in during the day because her swallowing was so difficult. Weakness from malnutrition is a huge problem with the disease and the only thing that was able to counteract it was putting in a feeding tube, which we did in mid-Oct.
It sounds terrifying at first (I'm surprised your doctor hasn't recommended it already) but it is easy to use, and gives an immediate boost of energy back as the person is finally getting the full nutrition they need to fight the muscle atrophy. She even gained some weight back!
It is important to get it while the person still has enough energy for if they get too weak it's my impression it causes complications with surgery. In fact we're wishing now we could have gotten her set up with one sooner as it may have prolonged her energy even more. Talk to your dad's doctor...
Hope this helps, meanwhile all those recipes should help, just be very careful about aspiration into the lungs! -Kaneact

 

[Al]

Hi guys. Everything I have read about ALS and the various motor neuron diseases stress that getting a feeding tube before you actually need it is a must. Once your weight starts to drop it is hard to get it back. The tube while not a lot of fun I am told is not that big of a deal surgery wise. You can push a lot of nutrients down that tube and I know of some people that would pump a bit of wine down it once in a while for a treat, It is not the end of the world to get a tube. Just a way to stay in this world a bit longer. I think we all want that. Al.

 

[Granny]

Hi all,
As a person who has used a feeding tube for over a year now, I agree that a feeding tube is, to quote Martha Stewart "a good thing". It has worked well for me in keeping my weight and energy up.

 

[kaneact]

thanks and a whoops

Al and Granny- I wasn't till after I posted my reply about the feeding tube that I saw the date of the original poster's message. I now know to look at that! THanks for your confirmation about the feeding tube and I loved the tip about the wine (though my mum in law is a teetotaler!). -Kane

 

[hope]

Hello. my wife has not been able to eat solid food for over twenty years. She has had to pured everything she eats. What we found very helpful for her is having six small meals a day instead of three. She will have food, the same food that the rest of the family eat, like cereal in the morning with milk. She will blend this and drink it. On top of the three meals consisting of food, and good food, like meat, potatoes, vegetables and fruits she will have three ensure plus a day. If for some reason she cannot drink the blended food she will add an extra ensure this way she is getting what she needs to keep healthy. Juices instead of fruits were helpful for her but she does blend fruit. Some people have said, how can she do it? They could not blend day after day, it must taste awful they would say. Well it tastes just the same as our meal no different. She has become an expert in different pureed foods. She uses a fondeau to eat chocolate which she loves. When people say they could not do this I also say to them if you want to live and this is the only way you can eat then you do what you need to do to be well. Yes some days it gets to her the constant blending but she is okay with it. She has lots of recipies if you would like to try some. Hope this helps a bit.

hope.