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 Speech therapy for sound volume and swallowing 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Speech therapy for sound volume and swallowing
Today Coy saw the speech therapist for the second time. She spent part of the session on exercises to strengthen the muscles used in swallowing. Coy was kind of confused until I explained this wasn't how he was supposed to eat, it was just an exercise for the muscles. (I could tell he couldn't figure out how he was going to eat with his tongue between his teeth. :lol: )

The rest of the session was learning to breathe in a way to increase the sound volume. He'd had some homework exercises from the first session and she wants him to continue that daily, with swallowing exercises twice a day.

Coy has a swallowing xray next week.

On the way from therapy to the day program Coy was quite conversational. What he was saying did not particularly make me happy (more on that in a separate post) but I was thrilled to be able to hear him! I almost never can hear him well in the car. I don't know how long that will last, how seriously he will exercise, etc. but it was very encouraging to see results so quickly.

Coy had speech therapy a couple of years ago, after hospitalization, via home visits. That was pretty useless. He was too weak, too confused, and too forgetful to benefit from it. I think this is evidence that treatments suitable in the early stages may not be useful at all at later stages. I'm going to pursue this aggressively with Coy now. But if it is ever offered after hospitalization again, I'd defer it until he'd fully recovered from the hospital stay. And I wouldn't take this up in the later stages if he is like the post-hospital condition.

I'm happy about this therapy. I'm worried about the two hours it takes out of my week for the sessions and the additional time the homework will take. It comes at a time when I'm feeling overwhelmed with my work schedule, running the household, taking care of Coy, and dealing with a health issue of my own. How can I squeeze even a few more hours into my week?

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


Fri Jul 29, 2011 3:11 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Speech therapy for sound volume and swallowing
Jeanne,

which doctor prescribed this?

of course I am going to bring up everything with Dr. Boeve when I go up there in August…especially this one.

I am having a lot of problems with swallowing, choking, snorting….drooling in my sleep

choking on liquids, choking on food, choking on saliva, choking on sinus drainage….choking, choking, choking….

every day now….multiple times a day…

usually with the evening meal….it usually doesn't matter what I eat….I sit for an hour or more, sometimes multilple hours, choking and repeatively clearing the excess saliva and sinus and undigested food that hangs out in the esophasgus, that has to come up and go back down….

…so…curious about this and what exactly you are doing? what is it called? how do I ask for more info?

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Jul 29, 2011 7:33 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Speech therapy for sound volume and swallowing
My dad has problems swallowing also. His doctor said he will need a swallowing study. She said that speech therapy would help also. I'm so glad to hear there has been some progress from this therapy.

And Jeanne, sounds like this type of therapy would def benefit you. Wishing you the best.

Anytime I read of any progress it helps!!!!
Michelle


Fri Jul 29, 2011 8:12 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Speech therapy for sound volume and swallowing
I'm sorry. I meant to say to Craig that it sounds like the therapy would benefit you!!


Fri Jul 29, 2011 8:34 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
Craig, I told Dr. Boeve of Coy's increased problem with a soft voice and more frequent choking/coughing with meals. He sent me two orders; one for the swallowing test, and the other for the speeach therapy. I turned those forms in to the rehab clinic or I'd give you the medical terminology on the forms. Whereas Dr. Boeve is a big believer of starting one medicine at a time, other parts of the treatment plan can be concurrent.

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


Fri Jul 29, 2011 9:30 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: Speech therapy for sound volume and swallowing
Jeanne, that is great! My mom was a speech pathologist, and no doubt knew something about this sort of work, though she mostly worked with children and a few stroke patients and i do not remember her talking about such issues with her patients.

Don't know if such resources are available near you, but we are working with the local caregiver respite volunteer group. They are trying to find a match for my mom. Apparently some of their volunteers are from the speech pathology training program at the local college; they have to do some sort of community work as part of their credential, and several have signed up with caregiving. The woman who organizes the volunteers was hoping she could get one of these folks for my mom because she thought it would be a great match for both sides. My mom does not really need any therapy, though my dad could use help for soft voice! But maybe worth asking if there is some chance of someone from such a program coming and helping Coy with his practice sessions and getting some practicum credit for this? They could learn something and could free you up a little?

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jul 29, 2011 2:49 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: Speech therapy for sound volume and swallowing
So glad to hear that it's helping Coy! My mom's appointment for her evaluation with the speech therapist is on the 11th of August, and I'm hoping they can help her so she doesn't choke/ cough so much! I feel so helpless when she coughs and coughs. She also has CHF so when her fluid is up (like now) she coughs from that, too. She was going to be admitted to the hospital today for edema but I talked her doctor into increasing her Lasix some more and waiting until Tuesday because she just gets so much more confused when she's in the hospital than she is at home. So for now we have a reprieve. :P

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Fri Jul 29, 2011 4:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Speech therapy for sound volume and swallowing
Funny, I was just thinking about Coy and swallowing this evening when someone asked me the value of a swallow study. I thought that the plan a few months ago was to NOT get a modified barium swallow study for Coy??


Sat Jul 30, 2011 1:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Speech therapy for sound volume and swallowing
I'm not sure any LBDer in our local support group has ever completed the voice therapy. And though the caregivers were disappointed, I think they were also relieved. It is a lot of work for both patient and caregiver.


Sat Jul 30, 2011 1:18 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
Robin, you probably are right about my stating I wouldn't have a swallow study for Coy. But, hey, my motto is "Stay flexible and you won't get bent out of shape." 8)

Actually, I still have some misgivings about the test. The value to me is it may result in some practical advice on how to swallow more safely. Coy is currently able to understand the reasons and to follow advice, such as to tuck his chin or sip water between bites, or whatever it turns out to be. He finds the coughing annoying and is motivated to learn some tricks to minimize it. When he had the test earlier he was in a more advanced state of symptoms (inflamation of the brain?) and could not benefit from such advice.

Whether we will follow any guidance about diet remains to be seen. And that is my misgiving about Coy taking the test. Why take it if we know in advance we are not going to have a feeding tube or use thickened liquids, etc.? Coy is presently in good shape cognitively and he deserves to revisit some decisions he made when he was much weaker. And I'm hoping for some practical advice that can apply to what he is eating now.

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


Sat Jul 30, 2011 11:15 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Speech therapy for sound volume and swallowing
Craig, are you on Sinemet? Derek's swallowing seemed to improve when his carbidopa-levodopa was increased and his drooling was drastically reduced.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 30, 2011 12:22 pm
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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
Robin, I think I can understand why patients drop out of the speech therapy without completing it. I don't think there has been a day we've completed all of the homework exercises. We do what we can. The swallow exercises are harder. Coy has been a little out of it for a couple of days (couldn't remember where the bathroom was when it was time for his bath tonight) and that doesn't help.

I'm counting on him being at this baseline best for at least some of the coming weeks, and being able to benefit from the sessions and the practice. Things might not work out that way, though.

I can understand that this would be very daunting for people in more advanced stages. It certainly was out of the question when Coy was weak from hospitalization.

As I told our kids at the family meeting, I will do everything within my power to maintain Coy's quality of life as long as I can. And I also know that progression of the disease is not within my power to control. There will come a point where it doesn't make sense to buy him things like cooling vests and take him to speech therapy and expose him to stimulation. We all have to be prepared to adjust graciously. But for now, it is fight, fight, fight for every nuance of pleasure possible.

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


Mon Aug 01, 2011 12:12 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Speech therapy for sound volume and swallowing
Pat...only aricept...for now

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Mon Aug 01, 2011 1:51 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: Speech therapy for sound volume and swallowing
Craig, my Dad started Sinemet and his choking and swallowing has greatly improved also!!

Michelle


Mon Aug 01, 2011 6:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Speech therapy for sound volume and swallowing
hislady09 wrote:
Craig, my Dad started Sinemet and his choking and swallowing has greatly improved also!!

Michelle
I believe that's because the dysphagia and the drooling are both PD related, i.e., caused by a deficiency of L-dopa. Of course, increasing Derek's Sinemet has increased hallucinations and delusions as well as agitation and combativeness. Everything is such a horrible balancing act!! :-(

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 01, 2011 6:36 pm
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