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Hello: Bill saw his neurologist today for six months

follow up. I am upset- to put it mildly. His bp was

140 standing and 140 sitting. The dr. said apparently

the central autonomic system had responded, and

suggested Bill stop taking florinef. Bill was all

smiles. I reminded them that the last time he was off

Florinef for three days, his bp fell to 60. When the

dr. asked if he could bathe, dress, and eat by

himself, Bill quickly responed " yes. " I was hoping to

get some assistance at home. Without the dr referral,

I can do very little. I just can't keep taking care of

him alone. He told the doctor he could recall no

falls. He didn't remember passing out in the hall in

August. We did get a referral for physical therapy

becuase I insisted.When I mentioned his legs

'freezing " so he couldn't take a step, Bill replied it

was as a result of the angiogram he had 4 years ago.

I guess he is still in denial- and I feel devastated.

Sorry for the long message, but I don't want to be

angry with Bill.

Aida and Bill

__________________________________________________

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Aida,

You NEED to speak up. If Bill is not telling the whole truth, the doctor

needs to hear the whole truth from someone. Even if it is only bathing help

you need, that is the easiest to get help on from government sources.

Write out all the problems with caregiving that you are having and take them

to your GP. Get them there BEFORE taking Bill back for a checkup. Any

medical doctor can prescribe help for you.

Take care, Bill Werre

Aida Ruiz wrote:

> Hello: Bill saw his neurologist today for six months

> follow up. I am upset- to put it mildly. His bp was

> 140 standing and 140 sitting. The dr. said apparently

> the central autonomic system had responded, and

> suggested Bill stop taking florinef. Bill was all

> smiles. I reminded them that the last time he was off

> Florinef for three days, his bp fell to 60. When the

> dr. asked if he could bathe, dress, and eat by

> himself, Bill quickly responed " yes. " I was hoping to

> get some assistance at home. Without the dr referral,

> I can do very little. I just can't keep taking care of

> him alone. He told the doctor he could recall no

> falls. He didn't remember passing out in the hall in

> August. We did get a referral for physical therapy

> becuase I insisted.When I mentioned his legs

> 'freezing " so he couldn't take a step, Bill replied it

> was as a result of the angiogram he had 4 years ago.

> I guess he is still in denial- and I feel devastated.

> Sorry for the long message, but I don't want to be

> angry with Bill.

>

> Aida and Bill

>

> __________________________________________________

>

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Aida,

Oh dear, you must be furious and frightened. Bill clearly doesn't

want to face this problem and the burden of that denial is falling on

you. I guess I agree with Bill Werre that you have to speak up. You

could make an appointment to see his doctor by yourself and explain

the problem. Or you might be able to speak to the doctor on the

telephone.

I'm not sure what kind of personality Bill has, but I know my mother

faced similar problems with my father in the last couple of years of

his life. (He didn't have SDS, but many of the issues were the same.)

He was VERY stubborn and didn't care about(or refused to face) the

burden he was putting on her by not facing his health issues. I know

that Rob and I could talk it through, but my Mom and Dad could not.

So, depending on how you think Bill will react, you might try having

a conversation with him about the effect his illness has on you.

Also, you might try enlisting the help of your chldren to speak to

him and try to get him to face the realities of the illness.

If worse comes to worse, you may jsut have to let him discontinue the

florinef and see what happens. If his blood pressure starts dropping

again, he may be more willing to accept the facts.

Aida, I feel for you and I hope you can get some resolution for this

problem.

Carol & Rob

> Hello: Bill saw his neurologist today for six months

> follow up. I am upset- to put it mildly. His bp was

> 140 standing and 140 sitting. The dr. said apparently

> the central autonomic system had responded, and

> suggested Bill stop taking florinef. Bill was all

> smiles. I reminded them that the last time he was off

> Florinef for three days, his bp fell to 60. When the

> dr. asked if he could bathe, dress, and eat by

> himself, Bill quickly responed " yes. " I was hoping to

> get some assistance at home. Without the dr referral,

> I can do very little. I just can't keep taking care of

> him alone. He told the doctor he could recall no

> falls. He didn't remember passing out in the hall in

> August. We did get a referral for physical therapy

> becuase I insisted.When I mentioned his legs

> 'freezing " so he couldn't take a step, Bill replied it

> was as a result of the angiogram he had 4 years ago.

> I guess he is still in denial- and I feel devastated.

> Sorry for the long message, but I don't want to be

> angry with Bill.

>

> Aida and Bill

>

> __________________________________________________

>

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