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Joined: Sat Oct 17, 2009 8:22 pm
Posts: 3
Location: Houston, TX
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Hello everybody:

I want to say thanks to all the people who have posted their stories on this board. Words don't describe the strength many of you must use to get through your day to day lives.

My father was diagnosed with Alzheimer’s approximately 8 years ago at the age of 55. Having been a manager at an assisted living community, my mother spotted the disease in its very early stages but always said there was something else wrong with him besides the Alzheimer’s. Later, the diagnosis was changed to Dementia with Lewy Bodies. The Parkinson's symptoms are really taking a hold of Dad's body and Mom said he had his first serious hallucination the other night.

One of the frustrations I'm having is figuring out what comes next. What comes next? What to expect? Up until now, I've found my father's doctor appears to be quite "matter of fact" about the whole situation and giving us no warning about anything.

For instance, Dad's legs seem to have locked in place. When we questioned the doctor about it, he said "that can be expected". So we did some research about it on the web and, according to the Mayo Clinic website, symptom "Movement disorders. Parkinson's-like signs may include slowed movement, rigid muscles, tremors or a shuffling walk." This explanation doesn't do the problem justice at all.

It's a surreal experience when at 2:00 AM your in front of the toilet, trying to get your father to sit down and he looks you dead in the eye, says "Its a comin" and proceeds to crap all over everything!

Trust me Doctor, it was unexpected.

Anyway, enough about that. By reading this board, I hope to get a glimpse into our future. While Dad's loss of cognitive thought has been tough, I fear the worst is yet to come.

Sun Oct 18, 2009 11:33 am

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Hagar- Welcome..but so sorry you have the need to be here.
Yes, toileting issues are part of this disease...go to the prior posts under those headings and see how common they are. We cried about it, laughed about it...and just muddled our way through it together. I do think that was one of the toughest parts of this disease for me to handle...scrubbing floors at 3 a.m., showering and changing in the middle of the night, etc. Rest assured, you are not alone and we all understand how difficult it is. Its a wicked disease.
Wishing you strength and wisdom.

Dianne C.

Sun Oct 18, 2009 11:43 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Hagar -

Sorry you've had to join us here.

Be sure to read Boeve's "Continuum" paper on a suggested treatment regimen in LBD. Is your father already on dementia meds (from when he got the AD diagnosis)?

There are lots of "poop" stories here. Read them at your leisure!

The doctor can't really set any expectations as no one knows exactly what will happen with your father. The range for survival time is quite large. And there hasn't been a lot of research done. Along the lines of what to expect, check out the layperson-authored stages of LBD, the research on survival times associated with the clinical milestones of dysarthria and dysphagia, and the research on other predictors of survival time. (The first item is probably under the Practical Caregiving Tips heading, and the other two are certainly under the LBD Research heading.)

Has anyone discussed brain donation with your father or mother? Arrangements are best made for this well in advance of death. You can learn more about this topic from a few posts in the LBD Research area.

Good luck,

Sun Oct 18, 2009 11:55 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Robin - could you please tell me what dysarthria is? I haven't been able to find that term under research or anywhere else. Thanks, Lynn

Mon Jan 25, 2010 3:14 pm

Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
Lynn, I found this when I googled it.
Dysarthria: Speech that is characteristically slurred, slow, and difficult to produce (difficult to understand). The person with dysarthria may also have problems controlling the pitch, loudness, rhythm, and voice qualities of their speech.

Dysarthria is a disorder caused by paralysis, weakness, or inability to coordinate the muscles of the mouth

Mon Jan 25, 2010 3:30 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hey Lorraine - thanks - I just hadn't gotten around to doing that yet today, and I am sure there are others who might need to know this too. My dad definitely has had this for 3 years, way before I realized there was a problem. It got really bad last year. Once in a while, like yesterday, he can say 3 or 4 sentences that are fairly close to normal. Then I think it takes so much energy to hold it together, he gets tired and says "thanks for calling" and hangs up the phone. That only happens about once a month. Usually I cannot understand him at all because he is either trying so hard to think of even simple words, talks in made up syllables. and almost whispers.
His friends had told me for a few years about the quietness of his voice on the phone. I hadn't noticed for quite a while till the other speech things kicked in last summer.
Thanks again, and have a good day! Lynn

Mon Jan 25, 2010 4:07 pm
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