Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 wendy, my father had 2 distinct personalities while i was growing up, the kind loving man that everyone else knew, adn teh drunken asshole that i knew. even if he wasnt drunk, he was always an asshole at home to me and /or mom. i was born a parent to my parents, and wasnt allowed to be a kid unitl i got out on my own. so i can relate to the uglies that you are talking about, this was enhanced more when my dad had lbd, and this is going back to when his symptoms first showed, not when he was diagnosed. it was awul, i called itthe dr jekyll mr hyde routine. and dad only showed his ugly side to me and normally when i was alone not when donnie was home or sissy or other caregiver was here with me. so it always seemed as if i was 'against ' him, i belive that lbd makes their emotions and mental state exaggerated, whether it be nice and loving or whether it was evil and mean or whether like my dad, dr jekyll/mr hyde. 'i wish there was a magic pill or magic answer for you but there isnt. the person that had to change was ME, not him, he couldnt change,so instead i had to change how i approached him on things. dad would throw temper tantrums like a two year old if we wanted to bathe him esp after he messed in his pants and wanted to play in it, ughhhhhh, so how i dealt with it was giving him a choice of something. for example, i would offer him clean clothes to wear and i would pull out 2 of his fav shirts and say which one do you want to put on after your shower. he would tell me which one and then he would try to take his shirt off, and i would help him so now he had his shirt off, and wanted to put on his clean shirt and i woudl say only after a shower, and then he would nt argue abuot the shower as he wanted his fav shirt. as for gagging, does she have too much in her mouth??? or are the pieces of food to big?? that is 2 of the reason why an lbder may gag/choke etc. maybe you need to start chopping her food or even mincing it, we eventaully had to puree it , make it baby food consistency. i would cook meals for all of us, and i used teh magic bullet system to puree dads food into puree so he could eat them i loved the magic bullet as ithad several different containers so i could use one for each part of the meal, potatoes, veggies and meat /gravy and dad would have hot meals just like us, same food as us, but easier for him jusxt a few thoughts, hugs, sharon m -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away ---- Robin Riddle wrote: Odd that none of the attempted posts below made it through. I'm re-sending this because some of you may have some advice for how can " manage " her mother.... >Date: Fri, 04 Aug 2006 14:19:32 -0700 >To: lbdcaregivers@... > >Subject: Re: gagging/swallowing > >Here's 's reply to my earlier post... (She didn't know how to >post it to the group.) > >Note to - If REPLY ALL (rather than REPLY) doesn't do the >trick, you can manually type in the email address for the list in >the " To " field. That address is lbdcaregivers@.... > > >>From: WTheri1022@... >>Date: Fri, 4 Aug 2006 14:54:31 EDT >>Subject: Re: gagging/swallowing >>To: rriddle@... >> >>Hi Robin >>Thanks for your response. When she starts to eat, very often on the >>first bite, she starts gagging as if she cannot swallow. She will >>spit the food into a napkin and continue to gag and spit saliva >>into the napkin. She doesn't actually throw up like from her >>stomach but sometimes I have to ask her to go to the restroom >>because she is making a scene and I am afraid she will hurl all >>over the restaurant. >> >>Most recently the DR didn't have any reason to mention PD as she >>has no symptoms and the gagging problem was brought up only by me >>several years ago and not again recently. Once we received the dx >>of dementia possibly LBD because of the hallucinations, I started >>looking back over the past few years at her behaviors, comments >>that various nurses have made along the way,( and this gagging >>thing) & realized that she has probably had this dementia for a >>while. It is hard to know because some of her life long personality >>traits are abnormal. Paranoia, anger, hostility, antisocial and >>making up the story or excuse to suit her own agenda. The big tip >>off was when she started adamantly telling stories to anyone that >>would listen of people coming in her apt. Off to the DR we went for >>a battery of tests which lead to the LBD diagnosis. >> >>The DR is aware of the weight loss but has not addressed it. He is >>also well aware of her resistance and tries to deal with the most >>important issue at hand as to not overwhelm her. All medical >>personnel who see her are very careful to not alienate her because >>they know how hard it is for me to even get her to go to the Dr. We >>all walk the rice paper so to speak. >> >> I can't even get her to use the 30 day pill box I got her so she >> can remember to take the Aricept. Yesterday I went to her house >> and put the pills in the box myself. Of course the amount of pills >> left didn't jive with how many she should have taken by now, they >> were three short, she has taken too many, and of course she >> insisted that she took them properly. I expect she will start >> saying someone stole the other three pills. So I don't hold much >> hope that I can get her to cooperate with supplements or anything >> else. It is exhausting. >> >>I would love to take her to a neurologist or specialist of some >>kind and get to the bottom of everything but she is very resistant, >>like her whole life. This is a woman who didn't go to the DR, like >>ever, never, for about 35 years until she needed cataract surgery >>and had to have a physical to clear her for that surgery. Several >>little issues were discovered during the pre-op exam and she >>refused to deal with them. She never even went back to the eye DR >>for the final little procedure she had to have and has not been >>back for an eye exam since. This was 5 or so years ago. >> >>Even if I got her to go to various DR she won't cooperate in doing >>what they say so it seems like a whole lot of unnecessary stress >>for everyone. One day we had a very simple office visit and then >>went to the pharmacy and she said it was the worst day of her life, >>this was when she was well. >> >>Even when she was " well " my encouragement to follow through on her >>medical stuff was met with things like " Cut the crap " " Quit trying >>to control me " " These DR are just trying to make money on me " anger >>and slamming the phone down etc etc. >> >>She is difficult in the best of times and I have not read about >>anyone like her on the group. Some LO's have behaviors like this >>caused by the disease. Mom just seems to have them naturally. >> >>I am stressing over what is to come and how difficult she will really get. >> >>I don't know if this note will post on the site because the reply >>button looks like it is going directly to you. How can it get on >>the site? Maybe someone has some insight on this difficult Mom. >> >>Thanks for listening >> > > >>Date: Fri, 04 Aug 2006 10:42:08 -0700 >>To: lbdcaregivers@... >> >>Subject: Re: gagging/swallowing >> >>, >> >>I'm not sure I know the difference between gagging and >>swallowing. Does gagging mean you are about to throw up but you >>fight it?? Can you describe your mother's problems in a bit more detail? >> >>The MD may not have mentioned Parkinson's because he didn't want to >>confuse the diagnosis. LBD is related to Parkinson's in the sense >>that LBDers can have many parkinsonian symptoms (or features of >>parkinsonism). You can understand these features by reading up on >>Parkinson's Disease on the many websites dealing with PD. >> >>Those with PD do get swallowing problems but usually it's later in >>the disease course. Those with PD can have normal >>lifespans. Those with Atypical Parkinsonism can get PD symptoms >>but they often occur earlier in the disease course. Sadly, those >>with LBD and other Atypical Parkinsonism disorders don't live a >>normal lifespan. Swallowing is not necessarily an early symptom of >>PD or LBD. The disease course is highly individualized: some >>people have swallowing problems early and some not til the very end. >> >>If your mother did have swallowing problems that could not be >>explained by any other factor long before she had dementia, >>hallucinations, RBD, fluctuating cognition, etc, then she might >>have Parkinson's Disease Dementia (PDD). PDD is on the Lewy Body >>Disease spectrum. It depends on which came first -- LBD symptoms >>or PD symptoms -- in determining if you have PDD or LBD. >> >>Swallowing problems are a parkinsonian symptom. The brain is not >>receiving the correct instructions from the nerves. And the tongue >>muscle starts to atrophy through disuse. >> >>Shoveling food is very common among those with PD and related diseases. >> >>Because of the drastic weight loss, I would *highly* recommend you >>call the neurologist today and get your mother scheduled for a >>modified barium swallow study. This study is done by a radiologist >>and speech language pathologist. They can see via xray what kinds >>of swallowing problems your mother is having. (Or at least what >>problems she is having at the time of the test.) The SLP can >>recommend what techniques will work the best whether it be pureed >>food, chin tuck, turning the head to one side when eating, double >>swallows, alternating food and liquid, etc. >> >>Have you told the MD about the weight loss? What's his >>response? You might consider Ensure or Boost to be confident that >>your mother is receiving proper nutrition. You could give your >>mother creatine, a supplement. This may add some weight. Creatine >>is being studied as a possible neuro-protector to prevent people >>from getting PD. >> >>By the way, it's very common for those with any sort of >> " unexplained " symptoms to come up with strange things to blame them >>on. I know a woman who kept blaming her shoes when she fell! My >>father kept saying that he fell when he was unfamiliar with the >>surroundings! Another woman would blame her dentures when she >>coughed and choked on food. >> >>Robin >> >> >> >>9c. Re: Gagging problem >> Posted by: " Gwen Ross " gwenross23@... gwenross23 >> Date: Fri Aug 4, 2006 12:41 am (PDT) >> >>Hi , >> >> There is a difference between the gagging problem and swallowing >> problems. Swallowing problems can be just a problem with >> aging. Parkinson's can make swallowing problems worse. My MIL >> (did not have LBD) but had swallowing problems and aspiration >> pneumonia for over 3 years. She passed away in Jan. of aspiration >> pneumonia. My dad (LBD) has a gagging problem at times. I think >> what is going on with my dad is that sometimes he has so much >> mucus in his sinuses and nose and it just slides down his throat >> and then he brings it up. It seems to be worse when he eats. He >> is in an assisted living facility and gets very embarassed when >> this happens. The other day he was having some major problems >> with this and as he was trying to get the mucus out of his throat >> he had just as much coming out his nose. (Sorry folks I know that >> this sounds terrible) Did we ever think that we would have to >> deal with so many different body functions with our LOs? >> Most of dad's caregivers think that it is his stomach and I have >> to go through a mini training that it is not his stomach but the >> amount of mucus. I have small trash cans with plastic bag liners >> in his room. He is also constantly blowing and wiping his nose >> but sometimes is worse. Dripping noses have been discussed here >> from time to time and from what I've read is common with >> Parkinson's. Does your mom have a runny nose or seem to have alot >> of mucus? I am planning on asking his dr. about giving dad a >> plain decongestant or mucinex. I don't know if it will help or >> not. Unfortunately his dr. is on vacation so I will have to wait >> to ask him. Dad has had a swallow test but I haven't heard the >> results yet. Your mom's doctor can order a swallow test if they >> think that she is having a swallowing problem. This might rule >> out a swallowing problem. By the way, when the congestion problem >> is brought up to drs. they don't really think it is a symptom. Again trying to >> educate. Hope some of this helped and that I didn't gross you >> out too much. >> >> Gwen >> >>________________________________________________________________________ >> >>9b. Re: Gagging problem >> Posted by: " LadySmilingAtU2@... " LadySmilingAtU2@... >> daddyscaregiver >> Date: Thu Aug 3, 2006 11:58 pm (PDT) >> >>wendy, >>i am not sure if the swallowing issues is actually PD or LBD, but i >>know it is a serious issue. my dad had swallowing issues early on >>but they werent often, he too put it off as eating too fast etc. >>we found that we had to cut up dads food into bite size *toddler >>size bites* for him to eat without choking and he also always tried >>to stuff as much as he could in his mouth, it was like his eating >>skills were going backwards in time, he would stuff his mouth so >>full he couldnt swallow any of, or he would swallow whole pieces >>of carrots or meat or potatoes. sometimes he would choke on his >>drink, again, claiming he drank too fast or inhaled it >>instead. the improper swallowing of food and drink can be very >>dangerous as it causes aspiration pnuemonia. you may have to start >>cutting up her food and eventually pureeing it, and you may need >>to add Thick It to her beverages to make the consistency a little >>thicker and easier for her to swallow it. we tried several brands >>and yes i mean we tried as i tasted them as well, Thick It brand >>is what we like the most, others tend to have a slimy feel to >>them thsi one didnt have that as much. >>i also will suggest teh Magic Bullet, you may have seen them >>advertised on tv, they are the mini blender/food processor set that >>you put all your ingredients in and count 10 and it is done. this >>set has a variety of sizes of containers where you can fix a >>regualr meal for everyone and then take several containers and put >>veggies in one, meat and gravy in another and potatoes in another >>and have the meal ready for your lo in less than 1 extra minute., >>also avoid lettuce, spinach and leafy vegetables as they tend to >>stick to the back of the throat which makes it even harder to swallow. >>oh the magic bullet is on the resources links that victoria has set up. >>good luck and hugs, sharon m >> >>________________________________________________________________________ >>________________________________________________________________________ >> >>9a. Gagging problem >> Posted by: " wmtpower " wtheri1022@... wmtpower >> Date: Thu Aug 3, 2006 11:05 pm (PDT) >> >>I may have already sent this post but it seems like it didn't go >>through, some error message, so here goes again. >> >>My Mom, 83, was recently diagnosed with LBD but there was no mention >>of Parkinson's as she is spry and not having such physical symptoms. >> >>However, several years ago she started having a gagging problem when >>eating. Ever the woman who will blame someone or something else she >>insisted that she just had phlegm or was eating too fast. Sometimes >>it was so severe she could not finish eating. She eats very small >>portions of food. She has dropped about 25 lbs in two years and she >>was not overweight to begin with. Today I witnessed it again. >> >>I mentioned this several years ago to the Dr wondering if it was >>something to do with her acid reflux or hiatus hernia. He said that >>sometimes the swallowing mechanism just doesn't work as well with >>age. This comment was well before the LBD dx. >> >>Now as I educate through this group I see alot of discussion about >>swallowing problems with Parkinson's and I wonder....is this an early >>symptom of Parkinson's? Should I mention it to the Dr again? Please >>weigh in on this if you have some experience with this as an early >>symptom as she seems to not have any other symptoms of PD. What are >>the early symptoms of PD? >> >>Thanks again everyone >> > > Quote Link to comment Share on other sites More sharing options...
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