Please forgive me for starting a thread, if discussed prior, but I did a Search and did not see anything come up for pureed foods.

My wife appears to be entering the advanced stage of HD while living at home. She has been on Xenazine for about a year, and it has helped tamp down the the chorea and movements, but it almost appears to have hit a placebo effect stage in the recent weeks. She gets amped up with movements at feeding time and her tongue is not adequately helping her process small bites of food, whether small pieces of meat or fruit.

When I say amped up, she is huffing and puffing, not taking time to chew slowly and keep slow breathing rhythm and bouncing around and kicking the table, me, and the chair. Like a rollercoaster ride.

The last five days she has thrown up her food (reflux) and it is clear to me that I need to move on to pureed foods. She always does well with a smoothie for lunch (packed with protein). I suspect that she gets more amped up if she has to chew and process her food (subliminally) even though she is opposed to pureed food.

Do any of you have advice on breakfast, lunch, dinner meal items for puree, and whether you are adding more than powder protein? She is whacking our couch something awful during the day and I suspect she is hungry. Her dose of Xenazine is at the max so we can't go any higher.

Unfortunately, the Xenazine is almost appearing to have parallels with Aricept, for Alzheimer's, where it helps for several months, and then loses its effectiveness.

Thanks for any advice.

I am wondering if she has had a swallow study by a speech language pathologist. They can determine the areas of weakness and physiological function of the swallowing muscles with either a Fiberoptic endoscope or video x-Ray. They will administer and analyze varying solid and liquid consistencies that will not put her at risk of getting pneumonia or choking. Reflux, vomiting, coughing are symptoms of possible aspiration that can lead to pneumonia and also choking. Also, seek a nutritionist's input. When researching for puréed textures try googling DYSPHAGIA DIET and there should be many resources. However, I would definitely make an appointment with a speech language pathologist: they can also give helpful strategies that will decrease the likelihood of aspiration, pneumonia, or choking. Hope this helps!

I hope what I wrote was helpful. Sometimes, written text does not convey the concern that it merits.

Dgett, thanks for very much, very helpful input!

Believe it or not, my wife has never had a swallow study done as she has always been non-cooperative when it comes to any study or clinic. Further, she has never had any interest in seeing a counselor or psychiatrist early on, when counseling could have helped her outlook. She has never been to any of our local HD support meetings and has no interest whatsoever.

She is for sure stubborn. I will look into this study as I am sure there are certain sides of her mouth, for example, that she has better luck in swallowing certain texture/size foods.

Thanks again for taking the time to reply... I appreciate it!

Wow!! It sounds like you definitely have your hands full!!! I admire caregivers tremendously!! I will be on the lookout for some good websites for you.

Take care,
Bridgett

Bridgett, my wife took care of her mother, who had HD, while my wife was around 20 years ago. She went to school part time, worked part time, and took care of her mother at a time when her dad left her mom, and her two brothers were off doing their own thing, not to be bothered.

It's pretty sad that this is her fate after taking care of her mother. My main point is that after experiencing all of that growing up, the last thing she wants to do is be around other people that remind her of that experience. Some may call it denial and stubbornness, but she knows how she wants to spend the rest of her life and what triggers anxiety and unhappiness in her own mind. I try to respect that.

But it can be tough as she hates going to the neurologist and any ideas or therapies which would be helpful. I guess that is her personality!

Tyler,
I admire your desire to support your Wife's wishes. I would even venture to say that Her (and Your) past experiance dealing with the progression is better knowledge than what you could get from others.

My Wife is not as advanced, but has only had one visit to an "HD expert" (for her) and it was actually detrimental. and as far as she is concern, she does not have HD.

Joe

Tylerfitz, your wife sounds just like my husband at feeding. Mine talks (or should I say makes noises) as even I can no longer understand any of his speech. Food falls out while feeding as he won't stop babbling. I do cottage cheese mixed with yogurt. Soups pureed with crackers to thicken. Cannned mini ravioli as it mushes easily & slides down well and is pretty well rounded for meal and the tomatoe sauce has vitamin c. I have a vitamix blender that blends frozen mango and pineapple & peaches well which I add to his fruit juice to thicken it without additives. For other liquids i add "thickit" to give all a nectar consistancy. He can drink milk and the boost shakes okay as they are a bit thicker. For food souflees go down well. Also i chop fresh spinach and tomatoes and cook down and mix in scrambles eggs for breakfast. Oatmeal does well with good fiber. Anything at "meatloaf" chopped size is not going down well anymore. One thing that I have found helps with the reflux is small portions about 1 hr in between. It just means more times spent feeding but it does help. He used to eat a lot but he just can't do it anymore.
Oh, and I have found that using the very thin straws that come on the side of the boost drink box work perfect for drinking all his liquids as the straws are very thin and limit the intake and slow it down with liquids.
Lizzieann



Edited 1 time(s). Last edit at 01/10/2016 08:37PM by LizzieAnn.

Lizziean, thanks for the input.

As to the very thin straws, that surprises me, good to know. I would have assumed that it is hard to get suction through the small straw. Then again, just because the tongue has issues with HD, doesn't mean the sucking power or suction goes away... I guess?

I am going to go out and buy a Powerball ticket for tomorrow night. Hopefully my earnings of a cool $1.4 billion can go towards more research and a cure for HD !!! Now that is something we can all look forward to.

Thanks again all,
Ty