Sally, KS et al, Pick's, AIDES update, whatever--

[Guest guest]

Thanks for sending your pretty day our way - ws 93 and steamy yesterday.

Ran the AC far too much and Jan's eyes are bloodshot and swollen. Despite

purifiers the blooms and fumes tear into him, too. Oil drillers must have

hit a gas pocket yesterday AM and the racket and stench were MOST offensive.

Neighbors tore out old driveway and dumped detritus in low spot across the

road dusting mailboxes with dirt and concrete. Not a great day but TODAY--

LA was fantastic! Breeze blowing fluffy clouds across a blue sky and sun on

green vegetation gorgeous.

Jan has severely atrophied frontal and temporal lobes causing dementia--I

have seen the " progress " on two sets of scans. Would appreciate elaboration

on experience with Mother and any research info you have at hand. Jan is

able now to blink his eyes yes or no at queries but I'm never sure about

accuracy,

My Council on Aging untrained aides are really something. First came Tiny,

big, black and beautiful and my spirits soared. Three 4 hour sessions and I

trusted her with suction and feeding tubes enough to go to the grocery and

drugstore. BIG OUTING FOR ME. Three miles and one hour away from home

after months of " velcroed to the hospital bed. " Then a Texas vacation - for

her - after all the hassle of consistent time scheduling so's I could make

appointments that I had to cancel. A day and an hour after Tiny's vacated

slot " Goldie " arrived unnanounced. A heavenly ? vision, golden slippers

with turned up toes, scads of chains dangling waist long, rings on every

manicured finger, teeth, earrings - all gleaming. A wrong address and her

unadorned carcass might have ended up in a swamp. Said she could do

everything. Gentle inquiry - I was impressed - revealed that dusting,

vacuuming and pouring Pine Sol completed her accomplishments. Easy out - I

had just completed those tasks. Apologies to Council managerphoned.

`Nuther scheduled session and second sub for Tiny's forthcoming two week

second vacation in California arrives in tow " to get acquainted. " I'll

graciously call her Sloppy Sue. Longest artificial nails imaginable. No

way she could touch Jan and no way she could even fold the bandages or paper

goods that touch Jan. Tiny DID stay and I saw the newest local doctor with

my customary begging for house calls, got my broken glasses fixed and

consulted with the druggist about additions to current meds. All in all,

more than I expected. Cancelled appointments are rescheduled for Tiny's

return.

As for me, I am dead in the water, falling apart and coot dizzy from sleep

deprivation. Jan barely hangs on while I do all his living. Terrible

diseases. In addition to MSA/SDS, tentatively dx'd thrice,

frontal-temporal degeneration twice, he may have some genes for PSP,

epilepsy, schizophrenia and manic depressive episodes

if these are inheritable. Brilliant, accomplished, healthy until 51 (MY

opinion), he is now mute and helpless.

What would I do without youse guys? Thanks for caring and `specially for

sharing your exceptional talents AND your family doin's. Will let you know

IF something unusual happens and I find time to write.

LA Louise in Springhill where a big black bear has taken over Main Street

and the City Park Fountain.

[Guest guest]

Louise:

I sure hope you do find the time to write. We all look forward to hearing what you have to say, it bring's your life and puts a smile on our face. Not that we're laughing at all the hardships you are in right now, but that you still can look at life with rose color glasses. If ever you do find the time , you should write a book on MSA.I know you could put it to words and we'd all want to read it. You do paint a picture with your words.

We're all thinking of you and sending our hugs.

Vera

********

Thanks for sending your pretty day our way - ws 93 and steamy yesterday.

Ran the AC far too much and Jan's eyes are bloodshot and swollen. Despite

purifiers the blooms and fumes tear into him, too. Oil drillers must have

hit a gas pocket yesterday AM and the racket and stench were MOST offensive.

Neighbors tore out old driveway and dumped detritus in low spot across the

road dusting mailboxes with dirt and concrete. Not a great day but TODAY--

LA was fantastic! Breeze blowing fluffy clouds across a blue sky and sun on

green vegetation gorgeous.

Jan has severely atrophied frontal and temporal lobes causing dementia--I

have seen the "progress" on two sets of scans. Would appreciate elaboration

on experience with Mother and any research info you have at hand. Jan is

able now to blink his eyes yes or no at queries but I'm never sure about

accuracy,

My Council on Aging untrained aides are really something. First came Tiny,

big, black and beautiful and my spirits soared. Three 4 hour sessions and I

trusted her with suction and feeding tubes enough to go to the grocery and

drugstore. BIG OUTING FOR ME. Three miles and one hour away from home

after months of "velcroed to the hospital bed." Then a Texas vacation - for

her - after all the hassle of consistent time scheduling so's I could make

appointments that I had to cancel. A day and an hour after Tiny's vacated

slot "Goldie" arrived unnanounced. A heavenly ? vision, golden slippers

with turned up toes, scads of chains dangling waist long, rings on every

manicured finger, teeth, earrings - all gleaming. A wrong address and her

unadorned carcass might have ended up in a swamp. Said she could do

everything. Gentle inquiry - I was impressed - revealed that dusting,

vacuuming and pouring Pine Sol completed her accomplishments. Easy out - I

had just completed those tasks. Apologies to Council managerphoned.

`Nuther scheduled session and second sub for Tiny's forthcoming two week

second vacation in California arrives in tow" to get acquainted." I'll

graciously call her Sloppy Sue. Longest artificial nails imaginable. No

way she could touch Jan and no way she could even fold the bandages or paper

goods that touch Jan. Tiny DID stay and I saw the newest local doctor with

my customary begging for house calls, got my broken glasses fixed and

consulted with the druggist about additions to current meds. All in all,

more than I expected. Cancelled appointments are rescheduled for Tiny's

return.

As for me, I am dead in the water, falling apart and coot dizzy from sleep

deprivation. Jan barely hangs on while I do all his living. Terrible

diseases. In addition to MSA/SDS, tentatively dx'd thrice,

frontal-temporal degeneration twice, he may have some genes for PSP,

epilepsy, schizophrenia and manic depressive episodes

if these are inheritable. Brilliant, accomplished, healthy until 51 (MY

opinion), he is now mute and helpless.

What would I do without youse guys? Thanks for caring and `specially for

sharing your exceptional talents AND your family doin's. Will let you know

IF something unusual happens and I find time to write.

LA Louise in Springhill where a big black bear has taken over Main Street

and the City Park Fountain.

[Guest guest]

Oh Louise, I hope some suitable aid or aide comes to you soon. You indeed

sound at the end of your rope. Your life is just unimaginably

difficult. We hope for better things soon, very soon. Lou R. At

10:40 PM 6/15/2002 -0500, you wrote:

>Thanks for sending your pretty day our way - ws 93 and steamy yesterday.

>Ran the AC far too much and Jan's eyes are bloodshot and swollen. Despite

>purifiers the blooms and fumes tear into him, too. Oil drillers must have

>hit a gas pocket yesterday AM and the racket and stench were MOST offensive.

>Neighbors tore out old driveway and dumped detritus in low spot across the

>road dusting mailboxes with dirt and concrete. Not a great day but TODAY--

>LA was fantastic! Breeze blowing fluffy clouds across a blue sky and sun on

>green vegetation gorgeous.

>

>Jan has severely atrophied frontal and temporal lobes causing dementia--I

>have seen the " progress " on two sets of scans. Would appreciate elaboration

>on experience with Mother and any research info you have at hand. Jan is

>able now to blink his eyes yes or no at queries but I'm never sure about

>accuracy,

>

>My Council on Aging untrained aides are really something. First came Tiny,

>big, black and beautiful and my spirits soared. Three 4 hour sessions and I

>trusted her with suction and feeding tubes enough to go to the grocery and

>drugstore. BIG OUTING FOR ME. Three miles and one hour away from home

>after months of " velcroed to the hospital bed. " Then a Texas vacation - for

>her - after all the hassle of consistent time scheduling so's I could make

>appointments that I had to cancel. A day and an hour after Tiny's vacated

>slot " Goldie " arrived unnanounced. A heavenly ? vision, golden slippers

>with turned up toes, scads of chains dangling waist long, rings on every

>manicured finger, teeth, earrings - all gleaming. A wrong address and her

>unadorned carcass might have ended up in a swamp. Said she could do

>everything. Gentle inquiry - I was impressed - revealed that dusting,

>vacuuming and pouring Pine Sol completed her accomplishments. Easy out - I

>had just completed those tasks. Apologies to Council managerphoned.

>`Nuther scheduled session and second sub for Tiny's forthcoming two week

>second vacation in California arrives in tow " to get acquainted. " I'll

>graciously call her Sloppy Sue. Longest artificial nails imaginable. No

>way she could touch Jan and no way she could even fold the bandages or paper

>goods that touch Jan. Tiny DID stay and I saw the newest local doctor with

>my customary begging for house calls, got my broken glasses fixed and

>consulted with the druggist about additions to current meds. All in all,

>more than I expected. Cancelled appointments are rescheduled for Tiny's

>return.

>

>As for me, I am dead in the water, falling apart and coot dizzy from sleep

>deprivation. Jan barely hangs on while I do all his living. Terrible

>diseases. In addition to MSA/SDS, tentatively dx'd thrice,

>frontal-temporal degeneration twice, he may have some genes for PSP,

>epilepsy, schizophrenia and manic depressive episodes

>if these are inheritable. Brilliant, accomplished, healthy until 51 (MY

>opinion), he is now mute and helpless.

>

>What would I do without youse guys? Thanks for caring and `specially for

>sharing your exceptional talents AND your family doin's. Will let you know

>IF something unusual happens and I find time to write.

>

>LA Louise in Springhill where a big black bear has taken over Main Street

>and the City Park Fountain.

>

>

>

>

>

>

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