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 What was the very FIRST symptom of LBD in ur LO 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: What was the very FIRST symptom of LBD in ur LO
:idea: A light bulb has really gone on for me.

Many people think that Coy's situation is unusual because he has been in early stage so long, and continues to do so well. After reading what you've all shared about early symptoms, I think that Coy's situation is unusual because he had a crisis very early after the onset and was diagnosed much earlier in the disease than most people are. And, once diagnosed, he could be treated appropriately. And I mean treated both medically and in daily living. His family, our friends, social service workers, the people he bowls with -- everyone knows he has limitations and adjusts their expectations accordingly. This has contributed to his quality of life, in my opinion.

It sounds like many LOs here had the disease many years before they got a diagnosis or before it even became bad enough to seek a diagnosis. Their early stage experience was as long as Coy's has been -- but nobody knew that is what it was!

I'm kind of an odd duck on this board. Not many other caregivers are dealing with LOs in early stage. I suspect now that is because diagnosis often occurs toward the end of early stage or even after early stage.

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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


Wed Apr 06, 2011 6:58 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: What was the very FIRST symptom of LBD in ur LO
I'm sure you're right, Jeanne. Derek refused for several years to see a physician about what I saw as neurological problems. I think he knew something was amiss but he didn't want the diagnosis.

That said, he spent several years in an undiagnosed early stage so maybe it makes no difference.

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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.


Wed Apr 06, 2011 7:39 pm
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Location: Ocala, FL
Post Re: What was the very FIRST symptom of LBD in ur LO
You are absolute correct, Jeanne. Dale knew that there was dizziness and 'restless leg' in 2002. He went from one neurologist to another - six in all. No one could diagnose the disease and finally in 2005, one in Tampa said, "If I had to guess, I'd say Parkinson's." We didn't keep going to that doctor because he was two hours away from us. However, I kept looking for answers and finally found this forum!

From advice here, I tried to find a knowledgable doctor. It was a long road! If he had been diagnosed in 2002, we might have avoided some problems. However, we did have a full life in those years. We traveled - India, China, Turkey, Syria, Cyprus, Germany, Italy, Canada... and several trips to California. I don't think we could have done more.

I'm in the process of sorting his medicine chest. I can't believe the number of 'remedies' he tried. We could stock a store! He was totally frustrated... and so was I.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Apr 06, 2011 8:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: What was the very FIRST symptom of LBD in ur LO
I agree, too, Jeanne. My dad's dr. noticed the signs years before any attempt at a diagnosis. He was also very frustrated because my dad refused to see a neuro. or have any tests, like the mini mental. I didn't know all this was going on because the dr. never contacted me, despite the handwritten letter from my dad in his file at the dr. office saying that my sister and I should have all his medical info.
My dad was still aware enough to know that he probably had something untreatable, and he just got stuck in the denial phase until there were a number of falls. After the last bad fall at his house I insisted he go to the ER, be hospitalized, so the dr. could determine what was wrong and insist he live somewhere that he could get proper care. By that time there was no denying something significant was wrong.
If my mom had still been alive, or if I had lived in the same town, he would probably have been diagnosed much earlier because we would have dragged him (kicking and screaming probably) to see a neuro and convinced him to have testing done.
It does seem like there are very few on here whose LO has had an early diagnosis. However, if you will notice the no. of people who read the forum but don't ever post, there are about 10 x as many readers as posters, and maybe some of those readers are folks with early diagnoses. Just a guess... 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.


Wed Apr 06, 2011 9:30 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
Lynn,
Actually I think it is a probable good guess, I know for a fact that my husband knew something was wrong but wouldn't admit it, every so often early on he would say things like I do know why (Brain) isn't working as he pointed to his head but yet wouldn't discuss it with his doctor. Most of the Dementia Type drugs are only helpful in early -mid cognitive issues and by the time many are somewhat DX'ed it is already too late for them to help, he took the Exelon, I will never really know how much if in fact at all if it helped !

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Irene Selak


Wed Apr 06, 2011 10:07 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
mockturtle wrote:
That said, he spent several years in an undiagnosed early stage so maybe it makes no difference.


That is an interesting question -- does it really make a difference to quality of life to get an early diagnosis? Is ignorance bliss, allowing us to enjoy doing what we can, without dark knowledge hanging over us? If the diagnosis keeps people from doing the possible -- if they go into an overprotective shell -- if Leone and Dale didn't take their trips, etc., then maybe ignorance is better. Maybe just treating any symptoms that pop up without seeing the big picture isn't such a bad thing.

I'm not at all glad for the crisis that lead to Coy's diagnosis early, but I am glad for the diagnosis. Thinking of a relative who is bipolar, I know it made a huge difference in my attitude and my tolerance to know that diagnosis. Hey, he isn't just being an obnoxious jerk -- he has a mental health issue. I think that it would be much, much harder to accept Coy's behaviors if I didn't realize they were beyond his control. I think I would be much more apt to snap at him, "hey, if you'd just pay attention when I tell you something, you wouldn't forget all the time," if I didn't know that in fact his ability to "attend" is impaired. I'd be more upset and he'd be miserable if we didn't know the big picture. I might have continued to let him handle the finances (scary thought). So I am glad for the early diagnosis.

We've had about seven years experience of early stage, and about a year of advanced stage. In our case, the advanced came first! :lol: (Which is not to say that it is not coming again. I know that. We're doing what most of you are doing -- taking one day at a time.)

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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


Wed Apr 06, 2011 10:32 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: What was the very FIRST symptom of LBD in ur LO
I believe that my experiences go back...way further back than imaginable...this has been a slow ride of diminishing capacities...some of my capacities have been declining for many decades....some of my capacities never reached their possibilities... all have been declining for at 4 years, and the speed picked up about a year ago...

I hope that I am early...and the speed that I perceive is overrated...and that I have a long time to decline ever so much more...

I reached a milestone yesterday...a permanent handicapped tag for my truck...my biggest fear is the loss of driving....and the loss of independence

After watching Dr. Boeve’s presentation at the seminar I went to a few days ago...I think the researcher’s are on to something...this all starts a long time before you see it....I won’t be surprised if it is earlier than I can imagine....and I am imagining a very long time ago....of course my symptom list is like a buffet menu...and the symptoms didn’t occur all at one time....and they presented themselves at times that coincide with the slides I saw...they think this stuff moves up the spine to the brain...which makes sense that I was looking for a doctor to diagnose me with MS...the areas of the CNS that are ‘affected’ are the same that could be ‘affected’ by MS....just with a different kind of attack....

I believe that if we are early on....we get treated like we are faking...and then the harder we try to be normal...the harder it is for them to believe us...when we fail...over and over...right after we blow everyone else out of the water....because when we aren’t failing we are overachieving to compensate for when we are ‘off’...part time superman...

I had the same Neuro treatment....my third Neuro sent me to two Neuro-Psych exams 3 years apart....both came up with Cognitive Disorder NOS (Not Otherwise Specified...could be faking) they were not consistent in findings....although second tester recommended Long Term Disability from then current job of Systems Analyst....the Neuro’s response....he wouldn’t make another appointment with me....said he had done all he could do....he gave up....or flat didn’t believe me...

My switch was flipped to all systems decline by a Gastro Doctor giving me Amitriptilene for a side effect of relieving unexplained chest pains....at least that is what I think....the chest pains and the unneeded angiogram 20 years ago for the heart....all part of this....my thoughts....and this goes back aways....

There is something that I experience...that is not really confusion...but might be interpreted that way...I just find it a real effort to do ‘anything’ even turn my head...I don’t want to initiate anything....now, that is not all the time....only a small fraction....and if I need to...(at least now)...I can do something....just at that time, just would rather not....

just some thoughts to some of the postings in this thread...

_________________
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


Wed Apr 06, 2011 11:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: What was the very FIRST symptom of LBD in ur LO
If you haven't already read the book, Life in the Balance, by Thomas Graboys, MD, please consider doing so. He is a cardiologist who developed Lewy Body Disease and wrote the book describing his life with Lewy and eventual--difficult--acceptance of it.

_________________
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.


Thu Apr 07, 2011 12:06 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: What was the very FIRST symptom of LBD in ur LO
BC, I wonder if what you are calling part time superman is what we caregivers know as "show time." Our LOs can put forth surprising effort and appear "normal" for a limited period of time for certain occasions, and then revert back to their impaired states. Often this is beneficial. It can allow them to enjoy interacting with friends at a social event, for example. The effort may put them to bed the rest of the day, but at least they had that pleasant experience. Other times it does not work in their favor. Show time at the doctor's office just makes diagnosis/treatment more uncertain. My sisters would visit for a few hours and couldn't quite figure out what I thought was wrong with my husband. They believed me, but they just didn't see it first hand. Various people who see a LO during show time (or in the part time superman role) can think he or she must be exaggerating when they see them again and they are impaired. Do you think that I am getting at the kind of thing you mean? If so, be assured it is extremely common behavior.

BC, if you'd like to share your experience at Mayo this week, I hope you will start a new thread. I think many of us would like to hear about it. Was it useful? Tiring? Scary? Inquiring minds want to know! 8)

Jeanne

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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


Thu Apr 07, 2011 12:12 am
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: What was the very FIRST symptom of LBD in ur LO
I am building a reading list…I have no related books…today…

I will preface this with this….I know I am impaired…it says so…I know that I am not always the best judge of me, maybe never…but, that won't stop me from guessing….

part time superman/showtime

I think two different things….but I could be wrong…here's why…

showtime….your observation of your L/O trying to be normal…
part time superman….my attempt to be normal…

wow! that didn't work out….

actually I was talking about the attempt to be way above normal….which I was able to do…in limited niches that I learned to exploit for fun and profit…to stay employed…I had to excel in short bursts to be able to average out in projects…as long as my work was project based….this became impossible when I was taken off long projects and put on piece work….where I might be expected to return something in a matter of hours…instead of months….showtime took on a whole nother meaning as I would become stressed and loaded down and give a real show! Tremors, word blocking, jibberish, a whole bunch of unconnected phrases (similar to my writing)….really nice whiteboard scribbles (instead of nicely prepared handouts)…that….was Show Time!

so, I would say….what I was talking about was part time superman…extreme compensation….what you said….show time….kinda….sorta….maybe...

_________________
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


Thu Apr 07, 2011 1:28 am
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: What was the very FIRST symptom of LBD in ur LO
also…the part about making up for the effort of 'show time'…

my payback for part time superman….and I am sure for others….the same….days of payback sometimes….especially if the task is physical…

I learned an analogy over on the MS forums….spoons….if you haven't read this…please do….google, spoon story and ms and fatigue….about lady explaining her payback for effort as starting out the day with a certain number of spoons that equates to expending energy…and having to choose as the day goes on what to spend those spoons on…and if at the end of the day you borrow from tomorrow…..payback is fierce…..then she turns the table….and has the person she is telling this hold a number of spoons and spend them on the regular activites of her day…..this is a must read if you haven't….probably you all have read it….

_________________
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


Thu Apr 07, 2011 1:35 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: What was the very FIRST symptom of LBD in ur LO
BC - I hope that through education your wife will gain some insight into the disease and what you are going through. Can you print out some of the forum postings that might be helpful? Perhaps if she sees the information and the support exchanged in this forum community she will be motivated to join, and stop being in denial about your condition.
Ignorance is certainly not bliss in this situation. The more information you both have, I believe, the better you and she can deal with what is happening. I wish you all the best in this journey. 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.


Thu Apr 07, 2011 11:01 am
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Post Re: What was the very FIRST symptom of LBD in ur LO
One of the nice developments about taking so many trips with Dale was that he was always almost normal away from home. At home, he would have delusions and hallucinations but he rarely had those symptoms away from home. It was obviously 'show time' when we left home. I would worry (every time!) about taking the trip ... but my worries were always groundless.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Apr 07, 2011 12:40 pm
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Post Re: What was the very FIRST symptom of LBD in ur LO
I'm so glad you did all the things you did when Dale was still able. I'm so glad I went to my dad's Battle of the Bulge Army reunion with him a few years ago. By the next year his walking was so bad and so painful for him he wouldn't have made it. Good lesson for us all - do what you can while you still can, and make the most of every day. 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.


Thu Apr 07, 2011 2:51 pm
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