Re: Recent Diagnosis - Sunnie

[Guest guest]

Hi Abby,

Thanks for the quick response. I think the reason my daughter is having so

much difficulty is due to the fact, which I just found out today, that he was

diagnosed two years ago. In those two years, his memory has gotten better, he

has no dementia, he has no hallucinations, he still drives to and from work

every day, he still is doing his job. He also handles the portfolio for himself

and my daughter. From what I have read, it would seem that in two years the

symptoms would be much worse by now and that a lot of things would have

changed.

She is getting in touch with Yale New Haven Hospital to see if she can get a

second opinion there. I am praying the diagnosis is wrong. I realize that it

may not be.

You have a tough road ahead of you as do all the others who are suffering

through this horrible disease. I wish there were something more I could do to

help everyone. Please know that my prayers and my best wishes go to you and

your family. Someone once gave me a card, during a very depressing time in my

life, the essence was: What do you do when you get to the end of your rope?

The answer: Tie a knot and hang on like hell. Guess I have started tying that

knot and hope you do too. The world is moving quickly and perhaps they will

find something soon that will all the victims and families that are suffering

with this horrible disease.

I will stay in touch and advise you when there is a second opinion.

Thank you again for caring and for letting me get this out.

Sunnie

[Guest guest]

Sunnie:

I know how discouraging a diagnosis can be. My sister still refuses

to accept my father's diagnosis and seems more willing to accept the

fact that he has Parkinson's and that the hallucinations are only

caused by a reaction to anesthesia.

My father was diagnosed only 3 months ago but we've been dealing

with this since he came out of his surgery for the removal of a brain

tumor in August. For months we wavered back and forth waiting for

his hallucinations to lift. I had actually done some research on my

own on Alzeheimers and then thought LBD seemed to fit what was

happening to my dad better. When the geriatric specialist suggested

he may have LBD I wasn't surprised but I was somewhat relieved only

because we finally had an answer and we could stop waiting for this

to go away. We were given some direction re: what was wrong with my

dad. We then had his neurologist confirm the diagnosis. (still my

sister tends to disbelieve...)

I can understand why your daughter is having a difficult time

accepting her husband's diagnosis. He is so young and the disease

and the prognosis is so bleak that it's easy to see why she may need

more time to take it in.

Getting a second diagnosis is a great idea. While they can look at

your son in law's symptoms and monitor his performance on some

cognitive tests as a means of detecting LBD, the only sure

confirmation can be detected in an autopsy after death. My sister

clings to that as the reason why she's not ready to accept absolutely

that my dad has LBD. For my part, I don't need an autopsy to tell me

what my dad's symptoms and behaviours already make clear.

It's nice that you are willing to do what you have to in order to

help your daugther and son in law. And you are right in suggesting

no one deserves this disease - except of course the most heinous and

brutal child killers and/or molesters.

My prayers and good thoughts go out to you, your daughter and son in

law. Let us know when they have the second diagnosis(but I'm praying

that he gets diagnosed with something far less brutal).

Abby

[Guest guest]

Thank you Donna. All tips are greatly appreciated. I feel as tho I'm taking

a crash course. I will post the second opinion as soon as I know. Thank you

again. Sunnie

[Guest guest]

Sunnie,

It is important to remember that " early diagnosis " is different than

what most of us have gone through.

If I remember from your other posts, you SIL is in his forties? It will

be important for them to get past denial after a second opinion, and if

it is LBD and get their legel stuff in order. They can save a lot with

a good account and good lawyer. It will allow your daughter to take

care of him without worry about losing all their assets.

And he will still be able to agree and sign all the papers while he

still can understand what is happening.

Hope this tip helps.

Donna