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 Speech therapy for sound volume and swallowing 
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Speech therapy for sound volume and swallowing
We were speech therapy drop outs as well perhaps if done it earlier it would have helped more, some of the things that were pointed out was smaller amounts with eating and that was great but there had to be constant supervision and I found all therapies were very short lived !

Irene Selak

Tue Aug 02, 2011 8:40 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Speech therapy for sound volume and swallowing
Well, Coy had the swallow test last Tuesday. I kind of wish I had listened to my misgivings and not had the test done, or at the very least not had Coy view the results. But what is done is done and I guess we'll just have to work on damage control.

The results are essentially the same as they were 8 years ago so it didn't tell me anything I didn't know. Watching it inside of Coy's throat was way more scary that having it described on a diagram. The experience left us both scared. Coy still is. It is sad.

Speech Language Pathologist recommended the National Dysphagia Diet level 2, with all liquids thickened to nectar consistency. She gave me a list of diet dos and don'ts. I also looked up several online. They are definitely different depending on who draws them up. How to apply the guidelines to real food has not been standardized. One list says eggs are OK and another says the only way eggs may be eaten is scrambled with cheese.

It was Dr. Boeve who ordered the test so I told him the outcome. He said he ordered it to see if there were some techniques Coy could learn to minimize risk. He definitely does not want Coy to follow the diet. If Coy is OK with the thickened liquids that part is fine, but only if Coy finds them acceptable. Staying hydrated is more important than reducing aspiration risks.

Mother and Coy see the same wonderful geriatrician and I had to take Mother in to see her yesterday. Dr. April had already seen Coy's results and she told me that she would never have ordered the test for him herself and that she hoped he would not follow the diet. She said that I was very good at notifiying her when he developed a suspicious cough and she prescribes anitbiotic on a rotating basis. That is our way of minimizing pneumonia risks. Yes, it is possible he will build up a resistence but she doesn't think so. There are risks lurking everywhere in this disease. She wants him to be happy, well nurished, and hydrated.

We tried the diet and thickened liquids for a week. I now pronounce for the diet The End. Coy can continue with thickened liquids as long as he wants to. That may help him feel less scared.

He had his session with the SLP this morning. She asked what we decided about the diet and I told her. She was dismayed and reiterated how great his risk is. I pointed out that he has been living with that risk for 8 years and doing pretty well. Neither of his doctors want to see him on that diet. He lost 3 pounds while trying it for one week and he cannot afford that. She seemed genuinely surprised. After all, he could still have good food. It was just that his carrots should be cooked instead of raw and some other adjustments like that. Obviously she has not prepared meals for someone on this diet. Obviously she has no clue what it means to have no breads, crackers, biscuits, chips, cookies, ice cream, milkshakes, salads, raw vegetables, cheese, and to have all your meat diced as if you were a toddler.

Coy had to leave the room to find the bathroom (of course) and while he was gone I said to her that Coy is 85 years old and has a terminal disease. There is no question that is going to die. My goal is make his life as happy as it can be for whatever time is left to him. I am NOT going to take him to an exhibit at the science museum this week and drag him past their famous ice cream stand. I am NOT going with him to the state fair and giving up our 30+ year tradition of having mini donuts to start the day. I am NOT going to tell him that he'll never have a beloved submarine sandwich the rest of his life, that he'll never get another taco buritto, or fresh fruit, or a salad or good cheese biscuits from Red Lobster. I am not giving up restaurant meals. Never have another "Some Like it Hot" pastrami sandwich from Cecil's Back Room? Unthinkable! If he were bed bound, maybe. But not while he can enjoy going out and doing "normal" things.

So, I wish we hadn't done the test.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Tue Aug 09, 2011 9:40 pm

Joined: Mon Feb 14, 2011 10:22 pm
Posts: 194
Location: Portland, Or
Post Re: Speech therapy for sound volume and swallowing
Thank you, I was having second thoughts about this for my mom, and I agree with you, for her to never have ice cream again is unthinkable to me, it's one of her few pleasures she has left. She was supposed to have a speech therapy evaluation on Thursday, but I'm cancelling it. Now that she's taken some fluid off, I think it was her CHF anyway, because her cough is better.

Ellen 60, caregiver for mom Marion 82, dx LBD Feb 2011 died April 11, 2015

Tue Aug 09, 2011 11:31 pm

Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Speech therapy for sound volume and swallowing
Good for you, Jeanne. This is all about giving loved ones the best possible life we possibly can. Coy is so very fortunate to have you.


Wed Aug 10, 2011 2:13 am
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