Re: Safety

[Guest guest]

this surely is a huge concern. i, too, had to work full time during the

course of my husband's illness. part of the problem has to do with the short

term memory. i know i must have sounded like a haggy nag to my poor man some

days. john would cough while eating and yet continue to attempt to put

food/drink in his mouth! even when i insisted he put the fork/glass down, he

would begin to, and then in the same moment start to eat or drink again. as

for falling, you might want to consider poles and rails in your dad's home.

also, i took my husband's favorite chair and literally 'broke' it so that

when he leaned forward it wouldn't topple over on him. he was able to

successfully use this chair up until he became bedridden. i don't even know

how to explain what i did....it was a lazyboy rocker and by some stroke of

luck i managed to bust the mechanism so that john controlled the movement of

the chair, rather than the other way around. he would lean forward and his

knees would literally touch the floor and then off he would crawl. as for

home health, this was an eventual God send for us, but it came too late.

unfortunately, i didn't have the primary physican support that i needed

during our journey....and his primary had to OK everything, so it wasn't

until an extended hospital stay that the hospital authorized home health. i

could actually have a relaxing drive home from work....something i had long

forgotten!

good luck

kaye

[Guest guest]

In a message dated 2/26/01 6:39:24 PM Eastern Standard Time,

GRIMMESEY-E@... writes:

<< Oh - do all MSA patients " fib " also? >>

you know, i honestly don't think it's " fibbing " as much as it truly is a loss

of short term memory. john would have big gashes on his back or arm and he

couldn't remember how they got there. he would also swear that he ate

nothing....this with crumbs around his mouth <smile>. i do miss him.

kaye

[Guest guest]

In a message dated 2/26/01 6:39:24 PM Eastern Standard Time,

GRIMMESEY-E@... writes:

<< Oh - do all MSA patients " fib " also? >>

you know, i honestly don't think it's " fibbing " as much as it truly is a loss

of short term memory. john would have big gashes on his back or arm and he

couldn't remember how they got there. he would also swear that he ate

nothing....this with crumbs around his mouth <smile>. i do miss him.

kaye

[Guest guest]

In a message dated 2/26/01 6:39:24 PM Eastern Standard Time,

GRIMMESEY-E@... writes:

<< Oh - do all MSA patients " fib " also? >>

you know, i honestly don't think it's " fibbing " as much as it truly is a loss

of short term memory. john would have big gashes on his back or arm and he

couldn't remember how they got there. he would also swear that he ate

nothing....this with crumbs around his mouth <smile>. i do miss him.

kaye

[Guest guest]

In a message dated 2/26/01 6:57:20 PM Eastern Standard Time,

bwerre@... writes:

<< Both Tony and I have been accused of beating Anne and Charlotte. >>

while not blatantly accused, john's primary care physican asked me a ton of

questions while removing 33 stitches from john's head after a fall. believe

me, if it were legal, i would have used the bat on that doctor!!!!! he asked

john point blank if i had hit him, or pushed him. wasn't it obvious to him

that the man was neurologically impaired? this was the SAME doctor who

refused to prescribe a sleeping aid for john nor would he authorize a hospice

evaluation....and both these requests from me were within five weeks of

john's death. needless to say, the AMA as well as our insurance carrier got

quite a letter when i was finally up to it..........

kaye

[Guest guest]

In a message dated 2/26/01 6:57:20 PM Eastern Standard Time,

bwerre@... writes:

<< Both Tony and I have been accused of beating Anne and Charlotte. >>

while not blatantly accused, john's primary care physican asked me a ton of

questions while removing 33 stitches from john's head after a fall. believe

me, if it were legal, i would have used the bat on that doctor!!!!! he asked

john point blank if i had hit him, or pushed him. wasn't it obvious to him

that the man was neurologically impaired? this was the SAME doctor who

refused to prescribe a sleeping aid for john nor would he authorize a hospice

evaluation....and both these requests from me were within five weeks of

john's death. needless to say, the AMA as well as our insurance carrier got

quite a letter when i was finally up to it..........

kaye

[Guest guest]

In a message dated 2/26/01 6:57:20 PM Eastern Standard Time,

bwerre@... writes:

<< Both Tony and I have been accused of beating Anne and Charlotte. >>

while not blatantly accused, john's primary care physican asked me a ton of

questions while removing 33 stitches from john's head after a fall. believe

me, if it were legal, i would have used the bat on that doctor!!!!! he asked

john point blank if i had hit him, or pushed him. wasn't it obvious to him

that the man was neurologically impaired? this was the SAME doctor who

refused to prescribe a sleeping aid for john nor would he authorize a hospice

evaluation....and both these requests from me were within five weeks of

john's death. needless to say, the AMA as well as our insurance carrier got

quite a letter when i was finally up to it..........

kaye

[Guest guest]

It is my father who is diagnosed with MSA - OPCA type. My mother, also on this

list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

[Guest guest]

It is my father who is diagnosed with MSA - OPCA type. My mother, also on this

list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

[Guest guest]

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

Wow, your husband sounds JUST like my Dad. My Mom will read this well - I'd be

curious to her thoughts. Thank you so much for the supportive feedback.

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> kaymac55@... 02/26/01 03:23PM >>>

this surely is a huge concern. i, too, had to work full time during the

course of my husband's illness. part of the problem has to do with the short

term memory. i know i must have sounded like a haggy nag to my poor man some

days. john would cough while eating and yet continue to attempt to put

food/drink in his mouth! even when i insisted he put the fork/glass down, he

would begin to, and then in the same moment start to eat or drink again. as

for falling, you might want to consider poles and rails in your dad's home.

also, i took my husband's favorite chair and literally 'broke' it so that

when he leaned forward it wouldn't topple over on him. he was able to

successfully use this chair up until he became bedridden. i don't even know

how to explain what i did....it was a lazyboy rocker and by some stroke of

luck i managed to bust the mechanism so that john controlled the movement of

the chair, rather than the other way around. he would lean forward and his

knees would literally touch the floor and then off he would crawl. as for

home health, this was an eventual God send for us, but it came too late.

unfortunately, i didn't have the primary physican support that i needed

during our journey....and his primary had to OK everything, so it wasn't

until an extended hospital stay that the hospital authorized home health. i

could actually have a relaxing drive home from work....something i had long

forgotten!

good luck

kaye

[Guest guest]

Wow, your husband sounds JUST like my Dad. My Mom will read this well - I'd be

curious to her thoughts. Thank you so much for the supportive feedback.

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> kaymac55@... 02/26/01 03:23PM >>>

this surely is a huge concern. i, too, had to work full time during the

course of my husband's illness. part of the problem has to do with the short

term memory. i know i must have sounded like a haggy nag to my poor man some

days. john would cough while eating and yet continue to attempt to put

food/drink in his mouth! even when i insisted he put the fork/glass down, he

would begin to, and then in the same moment start to eat or drink again. as

for falling, you might want to consider poles and rails in your dad's home.

also, i took my husband's favorite chair and literally 'broke' it so that

when he leaned forward it wouldn't topple over on him. he was able to

successfully use this chair up until he became bedridden. i don't even know

how to explain what i did....it was a lazyboy rocker and by some stroke of

luck i managed to bust the mechanism so that john controlled the movement of

the chair, rather than the other way around. he would lean forward and his

knees would literally touch the floor and then off he would crawl. as for

home health, this was an eventual God send for us, but it came too late.

unfortunately, i didn't have the primary physican support that i needed

during our journey....and his primary had to OK everything, so it wasn't

until an extended hospital stay that the hospital authorized home health. i

could actually have a relaxing drive home from work....something i had long

forgotten!

good luck

kaye

[Guest guest]

Wow, your husband sounds JUST like my Dad. My Mom will read this well - I'd be

curious to her thoughts. Thank you so much for the supportive feedback.

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> kaymac55@... 02/26/01 03:23PM >>>

this surely is a huge concern. i, too, had to work full time during the

course of my husband's illness. part of the problem has to do with the short

term memory. i know i must have sounded like a haggy nag to my poor man some

days. john would cough while eating and yet continue to attempt to put

food/drink in his mouth! even when i insisted he put the fork/glass down, he

would begin to, and then in the same moment start to eat or drink again. as

for falling, you might want to consider poles and rails in your dad's home.

also, i took my husband's favorite chair and literally 'broke' it so that

when he leaned forward it wouldn't topple over on him. he was able to

successfully use this chair up until he became bedridden. i don't even know

how to explain what i did....it was a lazyboy rocker and by some stroke of

luck i managed to bust the mechanism so that john controlled the movement of

the chair, rather than the other way around. he would lean forward and his

knees would literally touch the floor and then off he would crawl. as for

home health, this was an eventual God send for us, but it came too late.

unfortunately, i didn't have the primary physican support that i needed

during our journey....and his primary had to OK everything, so it wasn't

until an extended hospital stay that the hospital authorized home health. i

could actually have a relaxing drive home from work....something i had long

forgotten!

good luck

kaye

[Guest guest]

All good input. What about using the restroom? This would require a transfer

from the wheelchair to the toilet. But I suppose the answer will be to use the

urinal which will require that he " agree " to do so when left alone! I ask

because this seems to be one of his main motivations to get up when left alone.

Again, thank you.

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> bwerre@... 02/26/01 03:27PM >>>

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

All good input. What about using the restroom? This would require a transfer

from the wheelchair to the toilet. But I suppose the answer will be to use the

urinal which will require that he " agree " to do so when left alone! I ask

because this seems to be one of his main motivations to get up when left alone.

Again, thank you.

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> bwerre@... 02/26/01 03:27PM >>>

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

All good input. What about using the restroom? This would require a transfer

from the wheelchair to the toilet. But I suppose the answer will be to use the

urinal which will require that he " agree " to do so when left alone! I ask

because this seems to be one of his main motivations to get up when left alone.

Again, thank you.

Suzanne Grimmesey-Kirk, MFT

Quality Care Management

Voice: 884-1647

FAX: 884-1633

>>> bwerre@... 02/26/01 03:27PM >>>

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

Suzanne,

Depending on the layout of the bathroom - if he can get the w/c beside the

commode, he can drop the arm of the w/c on most w/c's and transfer by himself.

) However I don't have a bathroom that big in my house )

We use a bedside potty.

Take care, Bill and Charlotte.

Suzanne Grimmesey-Kirk wrote:

> All good input. What about using the restroom? This would require a transfer

from the wheelchair to the toilet. But I suppose the answer will be to use the

urinal which will require that he " agree " to do so when left alone! I ask

because this seems to be one of his main motivations to get up when left alone.

>

> Again, thank you.

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

> >>> bwerre@... 02/26/01 03:27PM >>>

> Suzanne,

>

> ) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

>

> Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

>

> Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

>

> If he will accept a wheelchair, it can help. He can get around the house in

it. A cell phone can help keep in contact. An aide could help if you can find

one and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

>

> Boy I hear the sticks and stones coming my way now )

>

> Take care, Bill and Charlotte

>

> ==========================================

>

> Suzanne Grimmesey-Kirk wrote:

>

> > It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

> >

> > He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

> >

> > As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

> >

> > Does anyone have suggestions as to how to maintain his safety in the home

when left alone? Or is the only option a home health aide?

> >

> > Suzanne Grimmesey-Kirk, MFT

> > Quality Care Management

> > Voice: 884-1647

> > FAX: 884-1633

> >

> >

[Guest guest]

Suzanne,

Depending on the layout of the bathroom - if he can get the w/c beside the

commode, he can drop the arm of the w/c on most w/c's and transfer by himself.

) However I don't have a bathroom that big in my house )

We use a bedside potty.

Take care, Bill and Charlotte.

Suzanne Grimmesey-Kirk wrote:

> All good input. What about using the restroom? This would require a transfer

from the wheelchair to the toilet. But I suppose the answer will be to use the

urinal which will require that he " agree " to do so when left alone! I ask

because this seems to be one of his main motivations to get up when left alone.

>

> Again, thank you.

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

> >>> bwerre@... 02/26/01 03:27PM >>>

> Suzanne,

>

> ) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

>

> Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

>

> Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

>

> If he will accept a wheelchair, it can help. He can get around the house in

it. A cell phone can help keep in contact. An aide could help if you can find

one and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

>

> Boy I hear the sticks and stones coming my way now )

>

> Take care, Bill and Charlotte

>

> ==========================================

>

> Suzanne Grimmesey-Kirk wrote:

>

> > It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

> >

> > He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

> >

> > As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

> >

> > Does anyone have suggestions as to how to maintain his safety in the home

when left alone? Or is the only option a home health aide?

> >

> > Suzanne Grimmesey-Kirk, MFT

> > Quality Care Management

> > Voice: 884-1647

> > FAX: 884-1633

> >

> >

[Guest guest]

Suzanne,

Depending on the layout of the bathroom - if he can get the w/c beside the

commode, he can drop the arm of the w/c on most w/c's and transfer by himself.

) However I don't have a bathroom that big in my house )

We use a bedside potty.

Take care, Bill and Charlotte.

Suzanne Grimmesey-Kirk wrote:

> All good input. What about using the restroom? This would require a transfer

from the wheelchair to the toilet. But I suppose the answer will be to use the

urinal which will require that he " agree " to do so when left alone! I ask

because this seems to be one of his main motivations to get up when left alone.

>

> Again, thank you.

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

> >>> bwerre@... 02/26/01 03:27PM >>>

> Suzanne,

>

> ) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

>

> Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

>

> Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

>

> If he will accept a wheelchair, it can help. He can get around the house in

it. A cell phone can help keep in contact. An aide could help if you can find

one and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

>

> Boy I hear the sticks and stones coming my way now )

>

> Take care, Bill and Charlotte

>

> ==========================================

>

> Suzanne Grimmesey-Kirk wrote:

>

> > It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

> >

> > He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

> >

> > As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

> >

> > Does anyone have suggestions as to how to maintain his safety in the home

when left alone? Or is the only option a home health aide?

> >

> > Suzanne Grimmesey-Kirk, MFT

> > Quality Care Management

> > Voice: 884-1647

> > FAX: 884-1633

> >

> >

[Guest guest]

Kaye - when you speak of poles, do you mean " super-poles " that go from floor to

ceiling? I'm about to order something on that order - what do you suggest?

Even if Bob (husband) doesn't walk far, as my daughter suggests, he could at

least safely stand and sit (he has a lift chair). Thanks so much for your

suggestions.

Elaine Grimmesey

>>> 02/26/01 03:23PM >>>

this surely is a huge concern. i, too, had to work full time during the

course of my husband's illness. part of the problem has to do with the short

term memory. i know i must have sounded like a haggy nag to my poor man some

days. john would cough while eating and yet continue to attempt to put

food/drink in his mouth! even when i insisted he put the fork/glass down, he

would begin to, and then in the same moment start to eat or drink again. as

for falling, you might want to consider poles and rails in your dad's home.

also, i took my husband's favorite chair and literally 'broke' it so that

when he leaned forward it wouldn't topple over on him. he was able to

successfully use this chair up until he became bedridden. i don't even know

how to explain what i did....it was a lazyboy rocker and by some stroke of

luck i managed to bust the mechanism so that john controlled the movement of

the chair, rather than the other way around. he would lean forward and his

knees would literally touch the floor and then off he would crawl. as for

home health, this was an eventual God send for us, but it came too late.

unfortunately, i didn't have the primary physican support that i needed

during our journey....and his primary had to OK everything, so it wasn't

until an extended hospital stay that the hospital authorized home health. i

could actually have a relaxing drive home from work....something i had long

forgotten!

good luck

kaye

[Guest guest]

Bill - you surely hit the nail on the head!!! I think the problem we have with

an aide (other than monetary - but there's always a way), is that the only help

he needs right now is getting up to go the restroom when I'm not home, so what

would an aide do - just sit and watch TV with him? Bob has always picked his

friends carefully (being in sales with IBM, he dealt with so many people that

he preferred to be with only whom he chose during non-working hours!). I'm

afraid he wouldn't like having a stranger in the home. It's a difficuilt

situation. Oh - do all MSA patients " fib " also? " I didn't get up! " and, in

the same breath - " I didn't have any problems - I didn't fall. " When asked why

he should fall if he didn't get up, he LAUGHS!!! Boy, oh boy!!!

Thanks for your feedback.

Elaine Grimmesey

>>> Werre 02/26/01 03:27PM >>>

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

Bill - you surely hit the nail on the head!!! I think the problem we have with

an aide (other than monetary - but there's always a way), is that the only help

he needs right now is getting up to go the restroom when I'm not home, so what

would an aide do - just sit and watch TV with him? Bob has always picked his

friends carefully (being in sales with IBM, he dealt with so many people that

he preferred to be with only whom he chose during non-working hours!). I'm

afraid he wouldn't like having a stranger in the home. It's a difficuilt

situation. Oh - do all MSA patients " fib " also? " I didn't get up! " and, in

the same breath - " I didn't have any problems - I didn't fall. " When asked why

he should fall if he didn't get up, he LAUGHS!!! Boy, oh boy!!!

Thanks for your feedback.

Elaine Grimmesey

>>> Werre 02/26/01 03:27PM >>>

Suzanne,

) You know we talk (behind the backs of the patients) about the

hardheadedness of a MSA patient ) About two years ago Ford

('s Fordy) PROMISED me when the time came, he would use the wheelchair.

He doesn't and every time I hear from he has a knot or split head.

Charlotte used to throw the clothes down the steps, then go down and step over

them. Bang! She fell and I had to take her to the ER. By the time we got to

the ER, she had two blackeyes. Within days she had a black face. They were

worried about blood clots. Since then she has used the wheelchair, but even

turned it over twice leaning too far forward.

Maybe a baseball bat would get their attention ) All you patients that are

not already writing me nasty emails, take heed. We caregivers do NOT like to go

to the ER anymore than you do, so help us out. Both Tony and I have been

accused of beating Anne and Charlotte. I think little was accused of

beating up big Fordy also.

If he will accept a wheelchair, it can help. He can get around the house in it.

A cell phone can help keep in contact. An aide could help if you can find one

and he will accept the aide. Sorry, most of us have faced this problem, and

none of us have a good answer. It's like having a teen all over again.

Boy I hear the sticks and stones coming my way now )

Take care, Bill and Charlotte

==========================================

Suzanne Grimmesey-Kirk wrote:

> It is my father who is diagnosed with MSA - OPCA type. My mother, also on

this list, is his primary caregiver. As is the case with OPCA, Dad's balance is

significantly affected. He spends the day in a lift chair. When he walks he

goes very short distance with the assistance of another, otherwise uses a

walker. During the daytime, he is alone while my Mom is at work. Although she

is home mid-day for lunch and assures that he has all he needs nearby, he still

gets up on his own.

>

> He tries to stand for what I believe to be a combination of agitation and

difficulty with feeling comfortable in the chair, and wishing to use the

restroom. He does have a urinal to use from his chair (and a condom catheter

which he has not yet used during the day). Even so, he stands and lunges to his

walker, or the nearest wall. He falls frequently. Even after promising my

mother that he will not get up, he does.

>

> As result of the falls, he has fractured his ribs several times, a few times

resulting in pneumothoraxes (sp).

>

> Does anyone have suggestions as to how to maintain his safety in the home when

left alone? Or is the only option a home health aide?

>

> Suzanne Grimmesey-Kirk, MFT

> Quality Care Management

> Voice: 884-1647

> FAX: 884-1633

>

>

[Guest guest]

I would like to hear the answer to safety issues, as well. Marilyn in TN

----------

>

[Guest guest]

I would like to hear the answer to safety issues, as well. Marilyn in TN

----------

>