Re: Re: Joking on the list >

November 22, 2002

:

Fred also has problems with his respiratory. Not breathing deeply and the

lungs not expanding. I had him to the MD yesterday and he said that he was

worried about this and want's to get him back to the pulmonary doctor again.

With the lungs not expanding the way they should it can lead to pnuemonia

,etc. The MD told me until we can get him back into the pulmonary doctor ,to

set Fred up with him CPAP during the day also. He said that it would force

the air into the lungs helping to expand the lungs. I've also put the CPAP on

him when his had pressure across the front of the head, it seems to help with

that sometimes.

Take Care Vera

************

Bill:

Terry is still having what appears to be significant respiratory

distress. Neuro tells us it is MSA and FTD being antagonistic with each

other. Results is trying to hold breath - freezing - and trying to breath

at the same time with many audible sounds; e.g. gasping, etc. Sounds

awful, but we are assured by lots of tests and by neuro that it is not life

threatening. Interestingly, if the family shows concern in front of Terry,

it exacerbates her symptoms. We are all learning to stay cool in front of

her - it is referred to as shielding the patient. The FTD is affecting her

executive function, and she becomes seemingly emotional at times; this

appears to be frustration at not be able to do what she feels she should be

able to do.

Please do call if you think you will be in the area Thanks giving

weekend. Sorry I had to miss the new members and not meeting Margaret last

weekend. Recent events have put me way behind schedule. It has been

awhile since I have been on the chat room.

November 22, 2002

Vera:

As I remember, one of the things that the Silverman Speech Therapy did

was help Ken's lungs expand so his voice would be stronger. Have you had this

therapy for Fred? I don't know if it is available near you, but they do have

it at Hoag Hospital which is where Ken went. I just got a note this week from

another friend whose husband is much better after this therapy. of course

Fred has to do the exercises daily, but he is one who might if he really

thought it would help.

Love, Barbara smith

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