To Missy/ New to Group

[Guest guest]

Hi, Missy. When I first asked my mother's neurosurgeon (she had a benign brain

tumor in 1996 that required annual follow-up) late in 2005 about some changes

noted in Mom, he referred her to a neurologist. In the meantime, I had done

some reading on the Internet and had a thought that her problem might be NPH.

Her neurologist was firm in her belief that was not the problem but diagnosed

Mom with Mild Cognitive Impairment with the possibility of Alzheimer's or Lewy

Body Dementia. It was not until late in 2007 that a more definitive diagnosis of

LBD was made following the development of additional symptoms. Mom's decline by

that time was very noticeable.

At first, Mom had only visual hallucinations. Depth perception issues were part

of the hallucinations but there were definitely other things going on, too.

Over time, she began to feel rain falling on her (when inside) and she also

began to hear voices speaking to her.

It would be my opinion that, if you're marking 80% of the symptoms as being

present, I would go with the LBD thought and learn about good med's, bad med's.

I would also ensure that a medical directive is in place as well as papers for

power of attorney. I would read everything I could in order to be prepared for

what might happen, especially if I had the power of attorney. The progression

of the disease is not steady and affects each individual differently. There is

no solid guide as to stages of decline. This is my recommendation because I was

where you were at one point...the lack of a definitive diagnosis and a general

lack of information at that time created a situation where I permitted a doctor

to make decisions that were not in Mom's best interest. He did not do so out of

incompetence or intent but out of a lack of information. Armed with knowledge,

that should never happen.

There is a tremendous amount of knowledge on this group, based on individual

experiences and time. That can not be replaced by what is generally available

to most people. Often, we end up educating those who care for our loved ones.

Good luck to you and your family. Always remember to look for the bright spots

in each day...

Best wishes,

Lynn in Florida

>

> Thank you for your reply. My father probably has 80% of the symptoms as

listed. However, he's never passed out and the hallucinations are visual only.

So much does fit though, one day he carries on a confused conversation and the

next two days he's very sleepy, weak voiced and can't understand much of what he

says. His drs didn't seem to look at much other than the nph, although he has

such a multitude of problems I can see why it would be confusing even to them.

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