View unanswered posts | View active topics It is currently Sun Dec 21, 2014 11:32 pm



Reply to topic  [ 46 posts ]  Go to page Previous  1, 2, 3, 4  Next
 swallowing issues: How do they start? 
Author Message

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: swallowing issues: How do they start?
Roxy, that's very interesting information. I did a quick Google and found the web site http://www.vitalstimtherapy.com/. I guess the 'stim' is for 'stimulation'. Thank you for posting about this FDA-approved treatment!

_________________
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 Nov 27, 2010 5:54 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3437
Location: Vermont
Post Re: swallowing issues: How do they start?
Just curious - what are nosey glasses?

_________________
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.


Sat Nov 27, 2010 6:16 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: swallowing issues: How do they start?
Please read what a speech pathologist thinks about VitalStim therapy before you expose your loved ones to it! After a local support group member was physically harmed by this therapy, the family and I started looking into it and uncovered this editorial about the lack of clinical evidence to support VitalStim:

http://www.springerlink.com/content/q23 ... ltext.html


Sat Nov 27, 2010 6:48 pm
Profile

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
Lynn,
I, too, was curious about a nosey glass. It's a glass with one side cut out so your nose 'fits' into the far side so you do not have to tip so far back to drink from it. I cut out a paper cup and it works! There are so many terms I read here that I've never heard. Thank goodness for google! Hope you're hangin' in there, I'm thinking about you, Sher

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


Sat Nov 27, 2010 11:23 pm
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: swallowing issues: How do they start?
I got 2 sizes of nosy cups but found Frank did better with a straw.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Nov 28, 2010 6:30 am
Profile

Joined: Fri Oct 15, 2010 6:41 pm
Posts: 4
Post Re: swallowing issues: How do they start?
Hi all,

We were told not to use a straw, if you are a silent aspirator. I guess the liquids tend to shoot toward the back of the throat which was not good in my husbands case. The doctor said the point of the nosey glass is to keep the chin from tilting up while drinking.
As for Vital Stim Therapy, I can only say it worked for my husband. He does not need to thicken his drinks. My husband was able to tolerate high does of electronic inpulses to his neck but they always asked him before they raised it. So I guess they did stimulate the muscles in his neck and even though we read about the process before hand, we don't completely understand the process.

hope it helps others,
roxy


Sun Nov 28, 2010 9:31 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: swallowing issues: How do they start?
Actually we were also told no straws for this reason!

_________________
Irene Selak


Sun Nov 28, 2010 10:11 pm
Profile WWW

Joined: Sat Sep 11, 2010 6:25 am
Posts: 9
Post Re: swallowing issues: How do they start?
Sher -

First, let me say that my prayers are with you. This is an agonizing illness in every way. I'm very sorry to tell you that in my experience the swallowing issues did not get better. Mom struggled with swallowing for a long time. I thought she was being stubborn but looking back I realize this was all part of this disease. Mom suffered a )stroke? Not really ever diagnosed) two years ago - one day we were able to walk her to the bathroom, she enjoyed looking out her windows and looking at her hummel collection on the way to the toilet (big smiles and a long pause every time) and the next day she was unresponsive. We were asked at that time about a feeding tube. Because we all (six kids) felt Mom had some quality of life and, if I am honest about it, we weren't ready to let go of her so we opted for a feeding tube. Mom never really came back completely from that stroke - we did get some quality time with her but it was all dementia-tinged. Looking back, I think my mother would have said yes to the feeding tube for her kids purpose only - because she was not selfish in any way . If it were strictly her wish for herself she would have said no.

Mom died September 10th this year and I still feel so bruised it is hard to even type this. I thought I had cried my buckets of tears in advance but that really isn't the case. I have become so accustomed to sudden waves of anguish over the horrors of her illness over the last four years.. This illness changes by day - every morning there is a new "normal".

One thing I was surprised to learn was that a feeding tube doesn't prolong natural death when the body is ready to go. The food doesn't absorb and you have no choice but to stop feeding. Of course no food at all hastens death - either from lack of nutrition or aspiration/pneumonia. Utilize hospice all you can. I was very surprised to learn that hospice isn't a "death sentence" and that hospice manages comfort - you can even change your mind. We would have had hospice involved much sooner if we had known their philosophy and understood the services they offer. When Mom did pass it was very, very peaceful and as soon as she passed the suffering left her face and she was my beautiful mother again.


Mon Nov 29, 2010 1:36 am
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: swallowing issues: How do they start?
Vicabn...what a tender and touching post. Thank you so much for sharing this. Lots of stories come through this forum, but yours was special to me. Nan


Mon Nov 29, 2010 1:43 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: swallowing issues: How do they start?
I have found that whether or not to use straws is either a "religious" decision on the part of the SLP (some like, some do not) or either a case-by-case decision. If the straw doesn't make the fluid run to the back of the mouth very quickly, then it's use should be OK. This is very easily determined by a modified barium swallow study where a straw is used.


Mon Nov 29, 2010 1:55 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: swallowing issues: How do they start?
When Frank was in rehab, they said no straws but when he used the glass he had difficulty swallowing, so they went back with the straw. He had a swallow test and other than it was delayed, it was ok. I do give him his pills with a glass of water, he'll swallow, with the expression of someone with a very soar throat, and then he swallows again. It's as if he has a bubble in his throat. We do have the "nosy glass", but a few times he tried to drink from the opening, for his nose, and well you know what happened. Like everything else with this disease, it's all what works with each individual.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Nov 29, 2010 7:00 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: swallowing issues: How do they start?
Vicabn,
If I haven't already let me extend my condolences on the loss of your Mom, it's obvious how much she was loved and cared for.

_________________
Irene Selak


Mon Nov 29, 2010 1:52 pm
Profile WWW

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
Vicabn,
Thank you for the reply and for sharing. I'm very sorry for your loss. Your mother sounds very special, to have had 6 children who all loved her dearly. On a bright note (and we don't get a lot of those, do we?) my husband's swallowing has improved tremendously since my original swallow issues query. He went from having to have everything pureed to actually eating a hamburger the other day. I still have to watch bits and hulls, and I still crush his pills but he is doing almost as well as he was before his big swallowing decline. I'm so thankful for that because food is just about the last bit of enjoyment he has. You mentioned the 'stroke' decline your mom had- I have actually told friend on several occasions that Ken's behavior from one day to the next was as if he had had a stroke (he hadn't). It seems that just about when I get used to a phase and think "okay, I can do this" then there is a downward turn, sometime for no apparent reason. The swallowing thing is the only time I've seen him improve after something changes for the worse. One day at a time! Sher

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


Mon Nov 29, 2010 11:13 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: swallowing issues: How do they start?
Sher, Lewy is so like that, isn't it? Up and down. Glad your LO got his swallowing back! At least for now. As you say, we only have today so we must make the most of it. Hugs.

_________________
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.


Tue Nov 30, 2010 12:03 am
Profile

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: swallowing issues: How do they start?
Pat,
Even though we've been going through "lewy" for years I am only now truly comprehending that I cannot expect anything. Early-on I didn't know about the fluctuations and I had to learn about the trauma declines by experience. I honestly attribute the swallowing issues to his being at the nursing home: unfamiliar surroundings, roommates, caregivers, etc. It changed literally from one day to the next, and of course I'll never know if there was an incident that wasn't reported to me at the time. I am so happy that he can enjoy some of his favorites again. On another happy note: Ken has become his old, sweet self again. Although he barely talks he will still tell me daily how beautiful and wonderful I am and he doesn't seem to get riled at people like he did for a while. I haven't had food spit at me for quite some time now! I miss my old Ken but I will cherish this new one for as long as I can. One day at a time! Hugs, Sher

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


Tue Nov 30, 2010 7:07 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 46 posts ]  Go to page Previous  1, 2, 3, 4  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr