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 We hold these "truths" to be not at all evident 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 252
Post Re: We hold these "truths" to be not at all evident
First - thank you all for all of your kind help by just being here on this site and for sharing your hopes and experiences.....

In some ways, some days, I have felt almost excited about the freedom I might soon enjoy.....On the other hand, my fatigue is so severe it is hard to leave the house many days....I always wanted to go to Ireland and Europe, but I know from domestic travel last year it might likely be a waste of money - I end up staying in bed for days after the travel and missing many things because I can no longer walk for any significant distances....I guess a wheelchair might be an option but my husband cannot push it - his back and neck are in too bad a shape....It kinda exhausts me just thinking of any kind of I'm trying to think of other things to do that are new and enjoyable....I joined my church choir about 6 weeks ago (I used to sing a decade ago! lol - and I read it was good for the effect of PD on the vocal chords) but they took me and have full understanding of when I have had to miss due to my fatigue....It's been a "novelty" experience as Jeanne says and I get out of the house and actually see some people who are very very kind to me - which is much different than my work environment which is/was very competitive. Since I work mostly from home now, I am not really sure where I stand with my part-time job....The aricept has made it possible for me to work again but I'm not sure I'm enjoying it that much anymore - I still cannot do anything close to what I used to....

As for brain stimulation and physical activity - I danced ballet for over 35 years including performances on pointe up to the year I became ill....lack of exercise or being physically unfit sure wasn't an issue for me - furthermore - dance required significant visual-spatial skills...irony.....Second I am/was a research scientist and had a minor in mathematics and my work demanded high level mathematics, computer programming and scientific interpretations, as well as technical writing....I don't think I was lacking for brain stimulation either. I also traveled extensively, sewed my own clothes and crafts, did needlework of all kinds, the chicago tribune crossword everyday, sang, took art classes, tried all kinds of new things, back country camped, hiked, kept the household going, took care of family members - I can't even believe I did all those things now!....thank you all for defending us about that issue of "who" gets Lewy and why.....I don't think I could have done anything else to prevent it!

I own and have tried to read parts of Schwartz's book - I think it gives me the most hope of many things out there - that my brain can and has compensated for many losses...fascinating really....

Thank you all for being here!!


First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........

Thu May 05, 2011 12:45 pm

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: We hold these "truths" to be not at all evident
Tonya, I am not sure where hyou live, but if you want to travel, I would definately look at cruising as a neat way to experience different ports of call while not having too great an expendiure of energy. You can do as much as you want or as little. It is a great substitute for extensive touring. And you have hyour own bed to sleep in every night. Smiles, Nan

Thu May 05, 2011 5:25 pm

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
Tonya, I'm exhausted just listening to your activities. Even if some are in the past, you must be an incredible woman.

Not having any specific evidence, just perception, I will bet that the choir is good for you. My mom, who is in the early advanced stages, gets speech therapy just to help her swallow. (It's rare for her to talk as she has such trouble with wordfinding.) Singing would really exercise your vocal cords, your diaphram, and your mind while providing all you need to know on a sheet of music - no trouble finding the words, just pronouncing the Latin. If the PD kicks in, you could just say you have a strong vibrato.

Enjoy the music!


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Tue May 10, 2011 2:06 pm

Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: We hold these "truths" to be not at all evident
I'm definitely skeptical of even the "brain reserves" theory. There seem to be questions about causality vs coincidence--or even just propinquity--that aren't easily answered. My husband is into his second year of dx with LBD, but fiercly rejects the dx. I've found that every attempt at a trip or foray outside of his comfort zone takes enormous amounts of energy from him, and usually results in further irreversible decline. It is also a great test of patience for me. As a result, we try to keep him on a fairly simple routine.

Thu Jun 09, 2011 2:27 am

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: We hold these "truths" to be not at all evident
I took a trip…

I went to Disneyworld with one of my children and her children…

they had a trip planned for a while….meanwhile in helping me plan for the end and taking an active role in my future daughter helped me see if my travel trailer was road worthy and last month we brought it to her home in Louisiana. My travel trailer had sat in storage for the last four years…

we talked, plotted and schemed…..were able to change their resort plans to Fort Wilderness Campground at Disneyworld….we rented a ECV…a scooter…had it delivered to the campground….

I joined them at the parks on 3 of the six days….but returned to my camper when I wanted too…

it was very tiring….the two days in the middle had no park trips for me….but it was very refreshing…even more…it was great to spend time with the kids….

it really made me think hard about what I have lost in last few years trying to beat this thing before even knowing what it was…it had consumed me…

I am so ready and I am living again….I am living with Lewy….unlike those who say things like I have Lewy and it doesn't have me…..Lewy has me….I am not fighting Lewy anymore….I am working with Lewy….I recognize my limits and realize they will diminish…everytime I have fought…I have lost the battle and lost I will try real hard to work with what I have….maximize that….and be happy

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 Jun 09, 2011 11:34 am

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: We hold these "truths" to be not at all evident
Wow, Craig, I think you've got it exactly right for you! I'm glad you got to do a stimulating trip. I'm glad that no one -- especially you -- expected you to be able to keep up 100% with healthy children. It took a lot of special planning, and I am so glad your daughter was there for you! You've lost a lot, but it sounds like you are gaining some things, too.

I think Challenge may be perfectly right for her husband, and that keeping him in a comfortable safety zone is best.

For you, and for Coy, and for many other early-stage LBDers, "novelty" experiences are worth the effort, not just because they theoretically build new brain pathways but because, as Coy says, "I have to have things in life to enjoy."

Hang in there, Craig. Lewy may have you, but I'm glad you could take him to Disney World!

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 Jun 09, 2011 1:14 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: We hold these "truths" to be not at all evident
I am not fighting Lewy anymore….I am working with Lewy….

That is very wise, Craig. SO GLAD you enjoyed your trip and hope you can take many more enjoyable excursions. :P

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 Jun 09, 2011 3:22 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: We hold these "truths" to be not at all evident
I am so glad that you were able to make planss for a trip with your daughter and family and it really showed you there is still a lot of life to live and we all have to make the most of each day, don't we ?

Irene Selak

Thu Jun 09, 2011 11:11 pm
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