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Doctors, therapy, tests and "are we having fun yet"?


thejule1

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I haven't blog lately as I just was so discouraged with the last therapy session with Larry. He started up with problems in swallowing again this year and the internist sent us on a round of ENT exam, Speech pathologist therapy with a new E-Stim Experia therapy, and lastly, the barium swallow test.

 

Larry went to two therapists after the ENT exam. The one he had last year gave him an eval and then 2 sessions and then told us she was moving to Denver with her family. She recommended another therapist in the same office as the ENT. We saw her and she gave us the option of seeing her or going to the specialized E Stim therapy. She even asked Larry what he thought (as if he knew which way to turn). Anyway, we went to the new therapist with the Experia machine (which gives more stimulation). We had several sessions twice a week. She wanted us to come 3 X a week but I said that would be difficult. It was a 30 min drive there, and then driving throught this nightmare garage to the upper level. This place was not handicap friendly as the doors were double and did not open automatically. The handicap places were (3) next to the door and 3 on next level down. The last time we went, all were taken up.

 

Meggan did her best to help Larry stengthen his throat muscles. Lots of swallowing and swallowing exercises. Larry was exhausted after this. The barium swallow test was yesterday and we were to be there at 9. We got there at 9:05 and waited 40 minutes. The therapist was behind and I felt she rushed through the test. If not for me asking questions, we would have been excused right after the test. This was not the way it was done before. She gave her report to the therapist Larry works with. The bottom line is that Larry still has to be on the soft mechanical diet and thickeners in his milk. He just needs to motivate himself more to eat. It's the most intense therapy we have had and one of the most crucial, as I don't want him to aspirate or choke. The swallowing problem is something that came up two years after his stroke and no one knows why. He does eat but not enough. I am at my wits end to know how else to help him. It is so frustrating. We see his Dr. at the end of the month and the nuero at the end of next month.

 

The weather has been great lately but starting to get back to the old hot and humid St. Louis weather.

 

Julie

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Julie: I am so sorry the news wasn't better. Think you may be at the point where it is up to Larry to decide. Provide the meals he asks for and likes. I know after you make most, he will say he doesn't want it, but get out that Cuisinart and start grinding things up, mixing them in whatever he usually likes - mayo, yogurt, bananas, sour cream, cottage cheese. Calorie count right now is useless if he won't eat.

 

Do three chicken breasts - save one for you. Grind up the rest - zip lock bag into fridge. Same for pork and an inexpensive beef. Label the bags. Now you have enough for the week. Hard boil at least six eggs - mash up into any of the meats. (Protein)

 

The one thing you do know is he is not going to eat if he is afraid of choking. So texture is the key. Look for the 10 for $10.00 yogurts and get the best flavors for him (stay away from any honey flavored. Honey can make the mouth and throat feel dry).

 

He loves his milk. Milk shakes and throw in anything you have: fruits, veggies, ice cream - again never mind about calories, just add flavor. Toss in his Ensure. Try the Enchiladas - very soft and tasty. And again, if it takes him all morning or afternoon to drink, that is OK.

 

I do know how difficult it is to motivate him to get outside and in hazy, hot and humid, you are not going to do it anyway, unless it is for an appointment or necessary errands. But sitting outside for a bit may help. He may agree to that if it doesn't involve a lot of walking or exercise.

 

Go easy honey. Please do take care of yourself. Schedule Jim if you need a break. Time to re-eval and reconsider. Debbie

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Thanks for your post Debbie - always supportive.

 

I did encourage (bribe) Larry to go for a walk yesterday. The weather was absolutely perfect with no humidity! He even sat out on the patio afterwards! I know I need to shove everything calorie wise into his food. The big problem is getting him to eat. I told him that he is the only one that can do that. :)

 

Julie

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Ensure is making a clear liquid supplement .... i bought it off amazon --- the stuff at walmart isnt the same --- the stuff from amazon comes in a smaller container like a kids juice box..one of the few things dan drinks... also shakeology makes some fabulous stuff --- i am not kidding it is good --- dan dont like it but dan doesent like anything ..... the chocolate is great - no i dont sell it ( lots of dealers out there) i prefer to buy from amazon -- costs more but no signing up for a program.. my thoughts >>

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Thanks Nancy. I buy the "Ensure type" shake at Target. Larry likes the chocolate one. He is picky too about food and especially what he drinks. The shaeology sounds good. I welcome any suggestions at this point.

 

Julie

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