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 150 Days Later 
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
Post 150 Days Later
150 days ago, I spent the night in a locked geropsychiatric ward with Cal.

150 days ago, I'd *heard* of DLB just seven days before.

150 days ago, Cal denied he was Jon's father, was convinced I was the good son, and was evaluated by the county-designated mental health professional for an involuntary commitment after he threw a styrofoam cup of water at a nurse who got in his face before he was awake.

Today, 150 days later, there's a neurologist who watched us walk in from the parking lot, "in awe". He doesn't believe it's the same guy he saw 155 days ago. He doesn't believe it's the same guy he saw 124 days ago. He'll see us in 180 days, barring any changes.

Today, 150 days later, there was a great lunch of Chinese food, and nothing ended up on the pale khaki slacks because of the mysterious force known as gravity. Shrimp were eaten, tea was drank, fortune cookie was read. "You have a great many talents."

Today, 150 days later, an 84 year old guy with DLB, a bad back, a bum knee, a torn rotator cuff and a fake hip *waxed* me on the putt-putt golf course. Two strokes, and do *NOT* think that he got any special consideration. Free advice: don't play putt-putt golf with a guy who has more golf sweaters than Arnold Palmer, more putters than a pro shop and more golf balls than the bottom of a water hazard. You will learn how badly a $5 Nassau can hurt.

This isn't everyone's experience with DLB. It is ours, though, and if you're new to this disease, if you're wondering what happens in the future, if you're wondering what action you need to take now, I suggest you do the following:

1) Find experienced professionals who share the vision that DLB can be a treatable condition. Nihilism is not an attractive personality trait in a medical professional.

2) Relentlessly advocate for your LO - there's always *something* that can be done to improve function or alleviate suffering.

3) Be willing to accept setbacks - we've had a couple of doozies.

4) Find a sunny spring afternoon; if the stars are aligned and it's a very good day, go find yourself a putt-putt course and get ready to lose $15 in the name of recreation. Whoever make the first hole-in-one has to buy the DQ.

Eric

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Jun 12, 2007 9:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Wonderful story! So, how much were you out today -- $15 and the cost of a DQ cone?


Tue Jun 12, 2007 9:53 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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$15 in greens fees, $30 between Jon and I on the Nassau, and $10.50 at DQ - Cal had the hot fudge sundae. ;0) And I bought lunch!

ROLLED. HUSTLED. TAKEN.

Honestly, you could do worse on testing visual-spatial performance than putt-putt. It really shocked me. I don't totally suck, but he can really putt.

E

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Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Tue Jun 12, 2007 10:06 pm
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
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Eric, how very heartwarming and ENCOURAGING. I know it was money most happily spent, and the improvement Cal shows gives hope to so many of us. Cal is 84, and my husband is 81, but unlike Cal, he never played golf or had any hobby that was dear to his heart other than being an avid reader. Unfortunately, with DLB, his reading comes in spurts and is generally limited to the newspaper or Newsweek magazine. Books, hundreds of which grace our bookcases, no longer draw his attention.

Thank you for advising to "Find experienced professionals who share the vision that DLB can be a treatable condition. Nihilism is not an attractive personality trait in a medical professional." I believe our neurologist is just such a doctor. Unfortunately, here in southern FL neurologists are overburdened with elderly patients, so the time and attention given to any one patient is somewhat limited. I am my husband's best advocate, and now armed with a lot more information about this disease than I had on April 6th (the first time I ever heard of it), I intend to barage the neurologist with questions when we see him on June 21st. We haven't seen him since the diagnosis of DLB was rendered on April 6th by the Memory Center.

Again, thank you for such a wonderful account of your day. I wish you many, many more of them.

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Marilyn


Wed Jun 13, 2007 10:22 pm
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Joined: Wed May 30, 2007 12:09 pm
Posts: 114
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I would like to congratulate you Eric on your father's wonderful improvement. Your efforts really paid off. :P
#1daughter


Wed Jun 13, 2007 11:09 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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And if you can't find a knowledgeable doctor or specialist, find one who is willing to learn -- including from you. We've struck out with every neurologist in our home community. None of them were familiar with DLB, and even when we brought them the dx from the Mayo, they continued to try and "make" his problem into AD since that's what they were familiar with. Unfortunately, their egos prevented them from looking into DLB a little further -- I'm nervous thinking about how many of their patients they have misdiagnosed and are treating for AD. So, locally, we are working with our internist and his PA who have treated Jerome for years and who are eager to build on their knowledge and understanding of DLB in order to be able to serve him. We rely on the Mayo for periodic neurological reviews.

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Renata (and Jerome-in-Heaven)


Fri Jun 15, 2007 1:38 am
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Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
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Dear Eric,

How upbeat your letter was and I congratulate you on your caring attitude-always positive. Would it be that everyone in the forum could say the same. For PE, the memamentine seems to be working a little, but I don't think we could go out and hike in the mountains, as we used to do!

Thanks for all your counsel. I wrote a message to Renata but since my high speed DSL doesn't work that well, it didn't go through. Dinny Wolff


Sat Jun 16, 2007 1:04 pm
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