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 "Leaky Gut" as possible contributor to LBD? 
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post "Leaky Gut" as possible contributor to LBD?
I received this interesting journal article today in my e-mail:

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=historysearch&querykey=1

Increased Intestinal Permeability Correlates with Sigmoid Mucosa alpha-Synuclein Staining and Endotoxin Exposure Markers in Early Parkinson's Disease. Forsyth CB, Shannon KM, Kordower JH, Voigt RM, Shaikh M, Jaglin JA, Estes JD, Dodiya HB, Keshavarzian A.
Source Department of Internal Medicine, Section of Gastroenterology, Rush University Medical Center, Chicago, Illinois, United States of America.

It leaves me wondering if supplementing with berberine and other supplements might prove effective in preventing/halting LBD. I do remember my mother complaining of gut problems and constipation for many years before onset of LBD. She also took aspirin and Sleep-Eze for many years, but no other medications and had no other notable illness, or accidents that I am aware of. So puzzling is this LBD.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sun Dec 11, 2011 6:33 am
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Location: WA
Post Re: "Leaky Gut" as possible contributor to LBD?
I find it even more interesting that your mother took diphenhydramine [Sleepeze, Benadryl and many other 'PM' compounds] for many years. My husband also took diphenhydramine for many years before Lewy for sleep. Since it is anticholinergic [an effect which is known to exacerbate LBD] I sometimes wonder if years of taking this type of medication depletes or inhibits the production of acetylcholine in the brain.

_________________
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 Dec 11, 2011 10:26 am
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Joined: Tue Feb 06, 2007 8:35 pm
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Location: Toronto, Canada
Post Re: "Leaky Gut" as possible contributor to LBD?
I constantly wonder about that causal link too, but more worrisome is the seemingly familial pattern at play. Two of mom's sisters were diagnosed with tradititional Alzheimers (one was an active nurse in a nursing home at the time), the other was an elderly homemaker and four years ago her brother was diagnosed with dementia - not yet specified. He had been an upper management executive with a national firm for many years (swam almost every day)...very sad...my family is wondering about the genetic component; however, there has never been a family member with an early diagnosis...yet. They were all in their 70's. Nurse might have been late 60's in age. My mom used to tell us about a wacky uncle she had who was pretty much ostracized back in the 1930's, nothing clinical available on him, but the whole family preferred not to speak about him. Mom used to freak out if anyone even joking called her "crazy". It's as though she feared being like him, even when I was a child. He died when I was young, so I had never met him. I often wonder if I should go for some kind of genetic testing, but then would I really want to know?

I'm 59 years old today and still working. What would the very earliest signs be that are distinct from normal aging??? I know about the MoCA test - I'm fine with that, can still do 3-D shaped drawings, etc., but I find myself preoccupied and forgetful in a transient way, like my calendar is my best friend -- is that normal. I am diabetic type 2 controlled by Janumet and diet. Numbers are pretty good. No complications yet.

My mom was a bookkeeper for years, so my brother for whom she kept books after Dad died and left him his company, started noticing irregularities in her otherwise meticulously-kept books!!! She was not diabetic (I used to test her with my meter.) Mom herself thought her problems were visual and often said, "There's something wrong with my eyes and I can see blinder-like shadows at the sides." Ophthalmological testing however revealed very good eyesight! Then she hid her head on a cement step after a bad fall (from only 6-8 inches). We wondered a la chicken-versus-egg style whether the fall effected head trauma or was the fall caused by pathology in the brain?

Thanks for any information. I stayed up till 7 a.m. reading posts last night. I know I am still pretty good at the visuospatial stuff and can transcribe acute care medical dicta and legal pleadings, etc., regularly without any problems. Do you think I should get testing and which test???

Mom is still aware of who we are when we visit. It is almost five years to the day since her diagnosis. She does have some very lucid moments, but they are certainly less frequent. The post about the stages of awake, REM-sleep and non-REM happening at the same time really rings true for mom. However, today when my brother visited her and mentioned it was my birthday, she replied, "Oh, I didn't get her present wrapped and sent." My brother was very shocked, as normally she is quite nonsensical in her spech. She was such a devoted mom! My brother just phoned me to tell me this. It made my heart sing. How I miss, Mom! I have been praying so much for her physical wellbeing. The nurses are very good with her in this new, modern facility - part of a comprehensive progressive care/living arrangements complex. Residents each have their own rooms and although she is no longer ambulatory, they turn her every hour at night and move her from glider to wheelchair regularly. She still goes to dining room for meals.
I so hope and pray she is comfortable until the end. Hats off to the wonderful nurses/attendants.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sun Dec 11, 2011 3:57 pm
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Location: Minnesota
Post Re: "Leaky Gut" as possible contributor to LBD?
dtb, what would you do differently if you knew you had very early stage dementia of some kind? Select a POA, write up your health care directive, get exercise, eat healthfully, monitor your blood sugar closely, sort purge and file your financial papers to make it easier for someone else to take them over? Wouldn't those all be good things to do/continue doing whether there is dementia in your future or not?

The number of people who couldn't get through their days and weeks without their calendars is legion. They come in all ages and mental capabilities. I once found a day-timer book in the street. There was ID in it, fortunately, and I called the owner. She came and got it immediately, almost crying in relief. She would be lost without that external memory!

Given the state of the diagnostic techniques today, I doubt that there is much point in being evaluated now. That is just a personal opinion, of course. If symptoms develop, that will be time enough to check into it.

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


Sun Dec 11, 2011 5:12 pm
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Joined: Tue Feb 06, 2007 8:35 pm
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Location: Toronto, Canada
Post Re: "Leaky Gut" as possible contributor to LBD?
Thanks, Jeanne. You validate what I'm feeling. Both my husband and I do have a POA and he seems to be pretty much same as I am (forgetful at times and without the family history of any dementia) and he is two years younger! My doctor is not concerned and he has a special research interest in dementia. I know the lawyers for whom I work are lost without their BlackBerries to remind them of their appts, and their even their tasks. They are pretty big on me typing their formal "To Do" lists. I even sometimes ponder their cognitive state!

Once again, thank you ever so much for that rational and practical post. It's true that physical exercise is a great all-around preventative! My prayer is that I won't become a burden on family and friends. Mom is still a joy to us --she has the most heartwarming smile and peace about her now, when her eyes aren't closed and dreaming. I guess if the time should come for me to follow suit, I hope I'll be as peaceful as she seems to be.

I also queried my brother about my uncle's status. He's still quite ambulatory and walks outside a lot, around my brother's housing construction sites to visit, but often does not come directly up to the site. My brother says his dementia appears to be the Alzheimer's type as his motor skills do not seem to be declining like Mom's did. Of interest is that he has been diagnosed with gluten intolerence and possibly celiac disease! I have never heard this was a problem for him before. He was always very thin though -- we just figured he was in great shape. Now I am really wondering about this leaky gut issue.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sun Dec 11, 2011 5:25 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: "Leaky Gut" as possible contributor to LBD?
Dale,
You haven't posted in a long time! So good to see your username again! I'll read this abstract when I get a chance.
Robin


Sun Dec 11, 2011 5:34 pm
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Location: Toronto, Canada
Post Re: "Leaky Gut" as possible contributor to LBD?
Thanks, Robin! I am looking forward to getting your take on that abstract when you get a chance. Mom became very thin many years before her Dx, down from 140 lb at 5'6" to about 110 lb and now if's she's 90 lb., that would be a surprise! She's so tiny that the clothes we buy her to fit her waist are all too short!!! Luckily, Silvert's have some great wrap-around items. Eating and food became an ordeal for her. It seemed there was always some aspect of just about every food that didn't agree with her. A can of soup and a small piece of toast was a regular meal. At other times, she'd have a ravenous appetite, but more often than not, my sister and my niece who lived next door and would cook Mom's meals would later see her go outside to scrape the prepared meal to the roaming animals. She loved her visiting animals (deer, dogs, cats, birds). She had a hummingbird visit regularly outside her kitchen window. She revelled in watching him at her dedicated hummingbird feeder. She is a gentle soul and her hallucinations were torturous, but now she seems to enjoy the "visits" and talks to whomever she sees in them, for example, a red-haired girl with a dog whose hair the little girl combs and an old man. No one in our family ever had red hair. Very puzzling. There's not a day goes buy that I don't think of her and pray for her comfort. One thing for sure, all of this has really pulled our family together in a good way (well, except for one brother and sister who are not on good terms). We are five siblings who largely have a greater appreciation for life and each other. Mom's suffering is not in vain.

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sun Dec 11, 2011 7:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: "Leaky Gut" as possible contributor to LBD?
Hi Dale - I know what it's like to wonder if LBD, AD or some other neurological disease is being carried in our genes. BUT, I really do try to put it out of my mind and not worry about it. It is so hard to know what has caused these terrible illnesses in our LOs, and if they could test US now and give us some meds to prevent it, that would be fantastic. But, the fact is that there is no known and tested prevention,(at least that I've heard of) so just living our lives as healthily as we can is probably the best we can do for right now.
In addition to what others have suggested, here's a question for you - does Canada provide assisted living and SNF care, or do people have to pay for it themselves? Is there such a thing as LTC insurance in Canada? If there is, you may want to purchase that in case you need home health care or to move into a facility and it is not covereds by a gov't program. Hang in there and try not to burden yourself with the "what ifs", just get prepared if the "what ifs" do turn out to be true some day and live your life to the fullest now! 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 Dec 11, 2011 8:11 pm
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Post Re: "Leaky Gut" as possible contributor to LBD?
This is very interesting to me. My mother has had colitis/irritable bowl syndrome for as long as I can remember. She has always used suppositories and other bowl aids. These days she has daily re-occuring gut pain. She doesn't seem to know the difference between gas, heart burn, colon pain, or stomach pain. In her mind they are all the same thing. In addition, she is a strong believer in medicine and the power of doctors to fix everything with a pill. It has been very difficult for her to accept that no one can make the DLB go away. Often I get the impression that she thinks that we are somehow denying her whatever magical pill or procedure that is going to make her well. It is hard. I also know that my mother has never wanted to eat well. She has always eaten tons of bread and candy. I have never been able to get her to eat things that are actually good for her. I am very interested to learn more about this. My husband suggests that perhaps the fecal transplant might be of value for people in this situation (I think I will be heading out tomorrow to the health food store to up my own dose of healthy bacteria). I don't know but it is an interesting question. The article suggests that this is inflammation related. I will be interested in following this research.

I too worry about getting this awful disease and wish I understood if and how the genetics play out. If I could figure out how to prevent triggering this disease with my lifestyle choices, I would definitely do so.

Good luck to everyone and keep sharing - Liz (whose 72 year old mother has DLB and is currently living in an ALF).


Mon Dec 12, 2011 1:12 am
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Joined: Tue Feb 06, 2007 8:35 pm
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Location: Toronto, Canada
Post Re: "Leaky Gut" as possible contributor to LBD?
Thanks, everyone, for your encouraging and supportive comments.

Financial/insurance preparation (Canada does have some good provisions and I have pretty good disability coverage at work -- trick is not getting terminated before I really need it???!!!) and trying to live a healthy lifestyle are really the best one can do right now, as you all mentioned, in the face of no cure on the horizon. I have to ask myself, "How do I want my family to remember me?" and "How would I live my life if I were to come down with LBD?" and therein lies my direction. It will take a lot of mental and physical self discipline to be sure, but it will be my project for the new year, plus to smile and be as loving as possible. Hopefully, my family will remember me as someone who really loved them (I have a daughter & two sons, plus two grandchildren)!

Another interesting note aside from the gut issues was that my mother was found to be moderately dehydrated (high potassium) upon admission to hospital after her fall in 2007, plus low B-12. She used to worry about her kidneys (heaven knows why), so she did not like to drink much water or fluids.

Thanks everyone for taking the time to share my deepest preoccupation which I normally wouldn't share with anyone other than my siblings. My sis feels same way I do. The more self-conscious we get about our preoccupation, the more forgetful we seem to get!

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Last edited by dtb in Toronto on Mon Dec 12, 2011 2:53 pm, edited 1 time in total.



Mon Dec 12, 2011 2:56 am
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Post Re: "Leaky Gut" as possible contributor to LBD?
I also worry about getting dementia and not being a nice person with my kids someday a lot. I think it is pretty common for those of us who have something like this in our families to worry about. Interesting about the B12. My mother has to take B12 shots every two months or so. Her B12 was critically low about a year ago and we have had to deal with it through injections ever since. I love what you say about being remembered. My mother wants to be remembered well by her grandchildren, but she can't control herself and she is very very selfish. I think it is a good thing to think about it now and to be gracious and generous with those that you love now so that someday if the disease does take over, you are able to be remembered for the person you were at heart (and you are able to care and be present for those that you love now and not put things off). I appreciate you mentioning this. I need to also keep this in mind for myself (although my kids are still young).
Thanks for sharing.

Liz


Mon Dec 12, 2011 11:28 am
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Post Re: "Leaky Gut" as possible contributor to LBD?
Dale - I think it's really ironic that your mom worried about her kidneys so she did NOT drink much water or fluids, which is certainly the opposite of what her kidneys need! 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.


Mon Dec 12, 2011 3:13 pm
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Post Re: "Leaky Gut" as possible contributor to LBD?
Well, Lynn, that depends. In advanced kidney failure, fluid restriction is often prescribed.

_________________
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 Dec 12, 2011 3:37 pm
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Post Re: "Leaky Gut" as possible contributor to LBD?
That may be true, but it sounded like she didn't have a kidney problem, let alone advanced kidney disease. At least that was my interpretation! Anyway, it just made me chuckle as it reminded me of my grandmother and great grandparents who thought everyone should regularly take castor oil, Milk of Magnesia, and all sorts of other stomach and intestinal things even though they didn't need to for medical reasons.
BTW, my dad had advanced kidney disease but they were always pushing liquids on him in the hospital, rehab center and ALF. Now your comment makes me wonder if that was just another part of his relatively poor medical care. Hmmmmm.... 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.


Mon Dec 12, 2011 4:35 pm
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Post Re: "Leaky Gut" as possible contributor to LBD?
It depends on the type of kidney failure and whether or not there is edema.

_________________
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 Dec 12, 2011 5:56 pm
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