update from today

[Guest guest]

Well, Len had his appointment at Booth Gardner today. After all the

rudimentary tests, the doctor said what I have suspected for months. he has

Lewy Body Disease and not Parkinson's. She separated the two, which I had

read were different, but I still thought LBD was a type of Parkinson's. So

often they are used in the same sentence. I have so much to learn. After

the meeting she met with me separately. I couldn't help myself, the tears

fell freely as I told her what was going on at home. She asked if I had a

POA, which I do not yet, since I am " trying to take everything he has " and

he was resistive of even a will. She assured me after the memory / neuro

testing she would get us to some counselors who would assist in making that

happen.

She referred him for a reaction test, which he is starting on Thursday. She

advised me that the first order of business is to get the keys out of his

hands. I naively said he was good " most of the time " and felt this was

premature. She said one time of me being frightened was too many! Just like

the drunk driver who kills someone the first time they drove after drinking,

it only takes once. Never really occurred to me that way. So much to

consider!! It will kill him to give up his keys. It is really all his has

left after losing his job. Part of me wants him to pass the darn test. I

am not ready to take on that battle, too. She offered to have someone do

home checks, but I don't think we are there yet.

I have to think of a way to get the rifles out of the house. She was very

concerned about the guns. Again, I will face wrath if anything is missing,

since I am already accused of taking so much. Anyone have any ideas? " He

is completely in denial that he has any issues, self diagnosing to the

doctor that his problem is just that he is getting " old " (at 63) and that

his issues were " natural and age related. " The doctor listened

compassionately, and then told him he had LBD. He didn't seem to listen or

understand what she said.

On the way home he asked me if I had learned anything from the meeting. My

mind raced as I thought of everything that was discussed. I finally said,

gently, no. I explained that she had confirmed what I had suspected ever

since I heard his other neurologist thought it was a possibility he had LBD.

I told him of all my research. I also reassured him we were in this battle

together, and reaffirmed the words " together " so he would know he wasn't

alone in this battle. If only he knew, but he doesn't. I am not sure he

really is capable of fully comprehending this diagnosis, especially with the

denials.

It was very apparent to me that this center was as much devoted to caregiver

support as patient care. I found warmth, caring and support there. I know

my journey will not be alone.

Thank you for listening.

Monroe WA