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 swallowing issues: How do they start? 
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post swallowing issues: How do they start?
Hi all,
How does difficulty in swallowing begin? Ken seems to swallow just fine, but recently he sometimes starts kind of gagging and choking at the same time several seconds after he swallows. This is usually followed by him behaving as if he needs to spit something up, but nothing ever comes. Is this familiar to anyone?
Another new development is occasional all-over shakes in addition to the usual hand or mouth tremors. Also new is random 'firing' of various muscles. I'm talking huge 'twitches' that make anyone near duck. Are all of these familiar Parkinson's symptoms? Just when I think my poor honey has all we can both handle something else starts.
One day at a time.

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Sep 06, 2010 12:41 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: swallowing issues: How do they start?
Sher,
For us the swallow issues started with just certain foods such as shelly type veggies , peas, corn . I would suggest having a swallow study done and they can let you know how to adjust his foods if needed, one of the things that helped us was smaller bites, often they put too much food in their mouth.

Here is a page on myoclonus type jerks, I have know of a few who have taken medications for these,

http://www.ninds.nih.gov/disorders/myoc ... clonus.htm

In this disease it is ever changing, I am sorry to say!

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Irene Selak


Mon Sep 06, 2010 7:24 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
Thanks, Irene. Right now size of bite is not an issue, he will barely open his mouth and take just the tiniest nibble from the end of the spoon. You mention the shelly veggies, Ken has for some time now spit out hulls of any kind, small bits that I would not feel go down. I thought it was just a quirk, but it makes perfect sense that it feels to him as if he can't swallow them. He's not swallowing his pills readily either. I'm guessing he's not being stubborn, but they may feel too bulky. My poor honey. Thanks for the info, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Sep 06, 2010 9:20 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: swallowing issues: How do they start?
Sher,
They sometimes just forget to swallow or if coaxed to he doesn't know how to, Have you tried more pureed foods? But again I enourage looking into a swallow study.

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Irene Selak


Mon Sep 06, 2010 6:43 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Post Re: swallowing issues: How do they start?
Irene, how can they do a swallow study if they can't take instructions on how to swallow. My hubby is starting the gagging thing too. I am now trying to feed him mushy foods. Also Irene, can you tell me if there is a way to "watch this post" or be alerted when someone posts here? Thanks


Sat Sep 11, 2010 12:56 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: swallowing issues: How do they start?
Lori,
Honestly I don't know but my husband had many issues and they just worked with him, the way it was explained to me! After the test it was recommended that he only have pureed diet and thats what we did, there were still times of swallow problems but greatly reduced due to the change in the texture of his food and I pureed just about everything !

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Irene Selak


Sat Sep 11, 2010 12:16 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
Hi Lori, I had really hoped I would get more feedback regarding the swallowing problems. Ken's set in almost overnight. For the longest time he's been rejecting small, hard bits in his food such as vegie hulls and rice, etc., and he definitely slowed down in the time he would take to eat a meal, but drank liquids with no problem whatsoever and could eat just about anything. He could even take 3 or 4 pills on his spoon at once and swallow them with water, no problem. Then one day he just gagged on anything I gave him, had a terrible time swallowing his pills. I thought he was going thru a stubborn moment, which can happen, but he doesn't talk much so he was unable to tell me he just couldn't swallow. We started crushing the pills the next day and if we add enough applesauce and make the bites small enough he does just fine. He is in a SNF right now, until Wednesday since Kaiser has decided he is fine (don't want to get started on that one right now) and they are pureeing his food. He tastes one small bite of each item each meal then says 'no' to another bite. He did clearly say to me "baby food" the other day so I know he does realize what he's eating. Now he's been pretty much living on Ensure-type drinks. He ate chocolate ice cream for dessert last night and many minutes afterwards kept repeating the gagging/coughing thing that he's started to do where I expect his food or drink to come flying out but it never does. I'd love to hear back from anyone who has experienced this. I know all of our LOs are different but they are also so very alike. What did anyone do for the choking? Are we looking at a feeding tube some time down the road? Are there options to avoid that? And here is the question I have had in my mind but haven't dared to put in writing yet: I have read on this website and elsewhere that the inability to swallow is the beginning of the countdown to death, 3 to 17 months. Is that where we are? Right now I'm trying to decide whether to transfer him to a 'home' or bring him home. I cannot roll, lift, toilet, shower him alone right now (he's not walking, not assisting in his transfers) so if I knew what the swallowing issue had in store for me I might better be able to know what's best for Ken. Does this ebb and flow like to many of the other Lewy symptoms? Thanks in advance to anyone who can share their experiences. Now that I've typed this all as a reply I think I'm going to paste it as a new post to maybe get more involvement. Thanks, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Sep 12, 2010 9:12 am
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
Post Re: swallowing issues: How do they start?
My hubby has had dysphagia since Jan. 2009. Here is what I have learned from this site. Ice Cream is a NO NO!!!Anything ice cold will trigger choking. I have found this to be true. Also, dairy products, milk in particular makes mucus thicker, I have also found this to be true. I have been concerned about liquid intake and have been told that fruit has alot of water, he is given puree peaches which helps. Liquids are worse for him that the solid foods, he also thinks the puree is baby food, but cannot speak anymore. He drinks honey thickened liquids and has been on thickened drinks since 2009. The thickened water is horrible, so he likes the apple juice or cranberry juice. He has a scopolomine patch now, which is also a no, no...but watching him choke on his own mucus was not good either. The patch dries him out, makes his parkinsons worse and he hallucinates more. Does not seem upset by them. This site told me it was worth a try. I give him fruit-eze as Eric suggested to help with the constipation of being dried out, also mucinex sometimes. As far as your "time line" I have been told the same, but it has been 18 months for us so far, although I must say I see the end coming. I could not have made it without Hospice and the facility he is in. The facility is not great but I have to have help lifting, rolling, getting him in shower chair, etc. For me, once this started it did not get better. Tony is less than 100 lbs now, but that is still hard to handle without help. I am 64 years old and in good health but was going downhill fast. Sorry with the reality of this, just giving you my experience , which is what you seem to be asking. I am not a medical person, just a wife who has been caring for her husband. Good luck, hope this helps.


Sun Sep 12, 2010 10:21 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: swallowing issues: How do they start?
Does your husband have an advanced directive? Would he want artificial means to keep him alive, no matter what his condition? So far my dad has not had swallowing problems - his eating problems are more getting food to his mouth issues, thus he is fed by CGs mostly. If he does develop swallowing problems we will not be doing any artificial means to prolong his suffering, particularly putting in a feeding tube. There would be no reason to do this given his quality of life. But, this is a very individual thing, so I hope you and your LO have discussed this, and if you haven't I'm sure you will do your best to figure out what his wishes would have been. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Sep 12, 2010 12:01 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
nsalvadore,
Thank you! Yes, I wanted to get a take on it from 'one who is there' and appreciate you sharing. Nothing I had read so far mentioned cold being bad so it's nice that you've told me, I'll definitely look out for that. One thing I did read is that it is good to alternate hot and cold to make swallowing easier. Of course, he swallowed the ice cream okay, it just seemed to gag him several minutes later. I just got back from the SNF and he was able to take only about 1/4 of his meds, just couldn't swallow even though I know he was trying. He kept motioning that he wanted to spit it out but he tried keeping it in beause I asked him to try which led to his eyes filling with tears. This horrible disease has infuriated me for a long time now but now it's just breaking my heart more a little every day.
Lynn, when we filled out our health directives we were both adamant about nothing life-prolonging if we're in a coma, vegetative state, had a terminal illness, etc. We didn't address this specifically but I know to do so on mine now. I know Ken wouldn't want one and I know he is very frustrated with his life right now, but as his wife it is harder to make a decision like that that may shorten his life. We're not there yet, thankfully, but everything is just spiraling downward so quickly that I have to think of all those 'what ifs".
Curiously, I haven't seen the drooling in quite some time. He used to drool a lot when he fell asleep sitting up but it really isn't bad now, so he doesn't need to be dried out that I can tell.
Well, horrible headache from crying so much for 2 days. Anyone got a trick for stopping crying. Thanks to all, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Sep 12, 2010 1:23 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: swallowing issues: How do they start?
I would be interested, too, if someone could give me a remedy for tears that appear at the drop of a hat....especially when someone gives me that 'You poor thing, you' look. Why does sympathy seem to open the waterworks?

We've had the fire department here three times this week. I'm afraid we are becoming frequent flyers.

Nan


Sun Sep 12, 2010 1:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: swallowing issues: How do they start?
Nan, we are also on a first-name basis with the paramedics. LOL! They are so nice about it, though, and make sure I don't feel guilty for phoning them.

Although I seldom cry any more, last night I was watching the great DVD In Memoriam, about 9/11, and tears flowed readily.

_________________
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.


Sun Sep 12, 2010 3:03 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
Nan,
Have you ever watched a small child get hurt and carry on just fine until Mom (who everyone knows has more sympathy than anyone)shows up then the child just breaks down? Maybe we think we've got it handled until that sympathetic persons brings out what is just barely being held back.
I think the worst is when someone tells me how lucky Ken is to have me or 'what an angel" I am.
I think the past few days have been my worst since his diagnosis because now I have added in the broken promise that we'd always live together into everything else there is to cry about. Of course (as Ken would sometimes gently remind me) it could be hormones, lol.
I, so very much, hope I get flattened by a beer truck when it's my time go so as to not make my daughter go through this all over again with a debilitating disease. Thanks for sharing and listening, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Sep 12, 2010 3:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3118
Location: Vermont
Post Re: swallowing issues: How do they start?
I'd probably be healthier if I actually DID cry more often. I just stuff it all down, even when I think I'm not, and the only time I cry is when I am so $$###@@@ frustrated with the CNP or a dr. not listening to me I can't take it any more! Then the flood gates open. I'm so busy trying to manage and coordinate things I don't deal with the emotions.
I am also rewriting my advanced directive and am including language having to do with being debilitated because of dementia. Most people just don't think about this as a health issue unless you've experienced it with a LO, and most ADs don't seem to address the special issues of dementia-related illness. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Sep 12, 2010 7:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: swallowing issues: How do they start?
Yes, Lynn, this is a very good idea. I have done that, too. I specifically wrote in 'dementia'.

_________________
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.


Sun Sep 12, 2010 7:28 pm
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