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 Looking for support and friends 
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Joined: Sat Feb 28, 2009 8:48 am
Posts: 5
Location: United States
Post Looking for support and friends
Hi Everyone:

My husband Frank was diagnosed at Mayos-Rochester in 2004 as having Parkinson's Disease and LBD. His condition has grown progressively but slowly worse. Currently (and to my great relief) we now have Hospice here helping as they have for the past six months. They are wonderful and have given me some relief from the 24/7 life I lead.

It has been a long hard battle fought by a wonderfully gallant man. He is retired military....43 years in the Marines (6) and the Army (37). He has never known the meaning of the word "defeat" and has been even now able to use humor as his friend. He can still make me laugh. I think that has saved my sanity and probably his too.

I am happy to have found this site and to be here among friends who know what it's like to be "in the trenches". Many don't understand.


Sat Feb 28, 2009 10:48 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Dear Dee Dee,
Welcome to the LBDA forums and I am glad you found us and you are with people who really understand the day to day LBD, There is a caringspouses online support group you might find helpful also here is the link!

Irene Selak

Sat Feb 28, 2009 11:54 am
Profile WWW

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Good Morning Dee Dee,

Extending a warm welcome to you and glad you found this site. There is so much good information, caring and support that will be very helpful to you. So feel free to jump in and join in any and all of the discussions.

My hubby has Parkinsons and LBD too. It is a very rough road we are all on. Some days are better than others. Glad to hear your LO has a sense of humor still intact. It can truly lighten the load at times.

See you in the posts!


Dianne C.

Sat Feb 28, 2009 1:07 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Welcome to the Forum. Who at Mayo Rochester is your husband's MD dealing with LBD symptoms?

Sat Feb 28, 2009 1:35 pm

Joined: Sat Feb 28, 2009 8:48 am
Posts: 5
Location: United States
Robin....our marvelous physician at Mayos was Dr. David S. Knopman.

Sat Feb 28, 2009 2:40 pm

Joined: Wed Feb 25, 2009 5:28 am
Posts: 45
Location: New Hampshire/Somerset UK
Post Marine humor
Hi, DeeDee, I just joined here a couple of days ago, too. I look forward to hearing how it's going with you. My sisters and I are caring for my Dad (age 91 and also a Frank) who has LBD.

Your LO sounds like a gem. My spouse isn't a marine, but works with them -- some U.S. marines, but mostly British marines, who for no reason I understand (being an American in the UK) are called "booties." Anyway, my hubby works in the chaplaincy at a naval airbase here and just has some wonderful stories about the booties. Caring for their mates is one rule and a sense of humor is definitely another. A 'bootie' last year joined the small ranks of people who have survived after throwing themselves on grenades to save his mates. (He survived because he threw his back, complete with backpack, on the thing. A large battery in the backpack took the blow and all survived.) At any rate, instead of getting Britain's TOP military honor, he got sort of the next-to-top honor because, technically, he was not "under fire" when he made the split-second decision to make what everyone thought would be the ultimate sacrifice. ANYWAY, what do you imagine this bootie had to say about the commotion over the award? "This has been blown up out of all proportion." Please tell this one to your Frank.

Well I just got a kiss from my hubby who was looking over my shoulder. He tells me 'bootie' is a contraction of "bootneck." I can't say that really helps me understand the nickname. The Brits, especially the military folk, do seem to have their own nicknames for everything though.
all the best,

Sat Feb 28, 2009 3:24 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post A pun?
The unintended pun by the Hero bootie, "This has been blown up out of all proportion", was not wasted on me. How sadly appropriate.

My husband was a GI during WWII and I have three daughers [and one son] so I have been reading your posts and caring arrangements with utmost interest. Bless you and yours.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Sat Feb 28, 2009 3:53 pm

Joined: Sat Feb 28, 2009 8:48 am
Posts: 5
Location: United States

Love the bootie story and hadn't heard it before. I found this on Google:
Royal Marine (British Special Forces). Known to each other as "Royal" but the rest of the British Forces know them as bootnecks. This nickname is derived from them cutting the top from a leather boot and wearing it like a modern neckbrace to stop sailors cutting their throat while they guarded officers on board British sailing ships in the days of old.
"Don't anoy those Bootnecks over there unless you want to wake up with a crowd round you!"

Our Marines are called leathernecks. Definition of leatherneck:
A Marine. The phrase comes from the early days of the Marine Corps when enlisted men were given strips of leather to wear around their necks. The popular concept has it that the leather was to protect the neck from a saber slash. Truth is that it was to keep the Marines from slouching in uniform by forcing them to keep their head up

Maybe I need to put a leather strip around my neck so I'll keep my head up! I keep nodding off these days from lack of sleep.

Laughingly, DeeDee

Sat Feb 28, 2009 4:05 pm

Joined: Wed Feb 25, 2009 5:28 am
Posts: 45
Location: New Hampshire/Somerset UK
Post Wow! Booties, Leathernecks, GIs and Dorthea!
DeeDee -- Great research -- Can't wait to tell hubby these facts. I hadn't been able to figure out the bootneck and how it related to US leathernecks. Ah just did tell him -- he loved it. Sadly, he tells me they lost a few more of their boys (and they really are kids -- the same age as his son, my step-son) this week. Hugs to your ex-Marine son, ManyMoons.

And Dorthea!!! You are a STAR. I am such a fan of yours .... You are my heroine here ... I wish I could get your autograph over the internet! If I didn't have a friend here (Kay) -- next village over -- who is 90 and as sharp as you are, I'd never believe anyone could be so brilliant in their 8th decade of life and beyond. It sure gives me hope. I want to be YOU (or Kay) when I grow up! (Well, okay, I am 56, so I guess I mean when I grow up a bit more.)

My Dad (Frank) was a weather forecaster in the Army Aircorps (as it was before there was such as thing as the Air Force) during WWII. He was stationed in Alaska and forecast the weather over the Bering Straits. (We did actually have planes flying that way over to Europe, not just over the Atlantic...) My Mom's sister, Louise, was in the Red Cross -- so some of the family's best WWII stories came from her. Mom (Grace) and Louise came from Omaha. When my Mom went back for a class reunion a few years before she died, there were almost no guys -- a huge percentage of them died on the beach of the same name as their home town.

Back to the Marines, my hubby says the humor thing really IS a part of the bootie code, so I actually do believe that Marine's joke was very intentional humor on his part.

Just another example from the base where hubby works: There's a construction project and a big sign, "Hardhats must be worn on site". A bootie is walking through the site and the construction foreman yells at him, "Can't you read? You have to have a hardhat on the site!" The bootie points at his beret. "That's a hardhat, mate."

It's getting late over here. I'll see if I can get a phone call through to Dad and Franks3rdaughter and turn in. G'night DeeDee, Dorthea, ManyMoons. And even more, here's wishing your LOs a good night's sleep.

Sat Feb 28, 2009 7:36 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Dear F2D --
Thanks for sharing your stories and inspiring the history lesson. My father was in the Polish Air Force when the country was overrun in 1939. The PAF had advance knowledge and made their way to England where they became the Polish Squadron of the British Royal Air Force. My parents settled in England after the war, where my brother and sister were born. My family emigrated to the US in the mid-50s (expecting to find streets paved with gold) and then I came into the world. My sister holds dual citizenship, and her UK citizenship has come in handy several times, so do what you can to keep to those 34 days! Best,

Renata (and Jerome-in-Heaven)

Sun Mar 01, 2009 3:48 am

Joined: Wed Feb 25, 2009 5:28 am
Posts: 45
Location: New Hampshire/Somerset UK
Post Polish air force
Renata -- I do know of that Polish air force. There was a big contingent of them attached to the airfield just up the road from where I live here on the Somerset levels. Yesterday my son's (ex) girlfriend went for her first practice driving lesson with her Dad on that redundant air strip (something we need to do with my son soon.) Now there is a resurgence of Polish immigration here. They had to get an English-Polish translator to serve as foreman at the rendering plant (abbatoire sp?) near here and the small town where we shop has three stores -- a grocery, a quick-stop, and a Polish shop! My late was a Polish American, so my son has a Polish last name. He got to lay a wreath at the last memorial day service, representing the UK's attachment to both the Polish and Americans stationed around here who gave their lives in WWII. I sometimes think it is the UK's long memories of those loveable yanks ("over-sexed, over-paid, and over HERE") and Polish service-people that makes them so kind to my son and me. And yes, this is why I am over-stressing my poor younger sister by only taking 34 days out of country. I do want to be part of this country (my Mom's Dad immigrated from England to the U.S. at age 18.) best to you and Jerome! p.s. Did your family come from Somerset? We've had tons of U.S. folks coming back to our little church to look for their ancestors...

Sun Mar 01, 2009 4:27 am
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