FW: MY mom/Olivopontocerebellar atrophy/MSA

[Guest guest]

I just had to share this success story!

Love,

Pam

MY mom/Olivopontocerebellar atrophy/MSA

Dear Pam,

So incredibly greatful to have found this group! I have been

monitoring your group since early winter. Symptom Management

and providing my mother with the best quality of life day to day

is our families goal. Through this group I have been able to

educate myself and gather information to give to my mom's health

careproviders. All I can do is print out the information and

hope they will read it so they will be able to help us care for

our mother. We have found ourselves in a position where the

disease was progressing faster then the care that was being

provided for her. Although my mother has a neurologist,GP,

physical therapist,occupational therapist,speech

therapist,dietician and case manager it became apparent that we

had no leader ( " the left hand did not know what the right hand

was doing " ) Her first neurologist went state side and her

second neurologist went to the UK. My step-father is the

primary caregiver and as such needs to have a strong support

network, people that are knowledgeable and caring and can offer

him direction in the care and management of my mothers symptoms.

After my mother spending the last 12 months in bed except for

15 min. stretches where she transfers to her wheelchair to

toilet,eat and dress in constant discomfort I am delighted to

report, finally! We now have a new occupational therapist and a

wonderful man (wheelchair )who heard our pleas, listened to

her and her family, then asked us for her medical history, took

the time to read it and educate themselves etc. etc. My mother

is now able to be out of bed for 8 to 10 hrs. a day. She is

able to travel, socialize, get back control of her house, shop

and direct meal preparation (loves to cook)etc. etc. Vera

(occupational therapist)has also agreed to facilitate

coordination of providing proper care for my mother. To this

end she will accompany me to an appointment with my mother's

neurologist to diguss management of symptoms, this as you can

imagine is long waited for, tangible support,long awaited.

Thank you! Pam this group has given me the necessary

information I required to be able to successfully advocate on

both my mother's and step-fathers behalf! Pam to this end I am

always looking for more information specifically in support of

the importance in Management of symptoms, caregiver information,

handouts I can give to (Quickly read, but not overwhelm).

Written material in support of good therapy services and

importance they provide with respect to " Quality of Life " . I am

still in the gathering information stage and any handouts I can

give to my moms healthcare providers to gentley educate them

would be of enormous help, not only for my mother, but, for

others to follow. Also, Pam I am interested in finding more

support closer to home.

Very greatful for this group!

Jeannette XXXXXX (daughter)

XXXXX XXXX, Ontario. Canada.

45 min. drive to London, Ontario and 2 hr. drive to Toronto,

Ontario.

1 hr. plus drive to Detroit, Michigan.

[Guest guest]

Jeannette:

How were you able to find an OT capable of providing all these

services? This is truly a " success story " as Pam suggested.

Message: 7

Date: Mon, 3 Jun 2002 10:59:50 -0300

Subject: FW: MY mom/Olivopontocerebellar atrophy/MSA

I just had to share this success story!

Love,

Pam

MY mom/Olivopontocerebellar atrophy/MSA

Dear Pam,

So incredibly greatful to have found this group! I have been

monitoring your group since early winter. Symptom Management

and providing my mother with the best quality of life day to day

is our families goal. Through this group I have been able to

educate myself and gather information to give to my mom's health

careproviders. All I can do is print out the information and

hope they will read it so they will be able to help us care for

our mother. We have found ourselves in a position where the

disease was progressing faster then the care that was being

provided for her. Although my mother has a neurologist,GP,

physical therapist,occupational therapist,speech

therapist,dietician and case manager it became apparent that we

had no leader ( " the left hand did not know what the right hand

was doing " ) Her first neurologist went state side and her

second neurologist went to the UK. My step-father is the

primary caregiver and as such needs to have a strong support

network, people that are knowledgeable and caring and can offer

him direction in the care and management of my mothers symptoms.

After my mother spending the last 12 months in bed except for

15 min. stretches where she transfers to her wheelchair to

toilet,eat and dress in constant discomfort I am delighted to

report, finally! We now have a new occupational therapist and a

wonderful man (wheelchair )who heard our pleas, listened to

her and her family, then asked us for her medical history, took

the time to read it and educate themselves etc. etc. My mother

is now able to be out of bed for 8 to 10 hrs. a day. She is

able to travel, socialize, get back control of her house, shop

and direct meal preparation (loves to cook)etc. etc. Vera

(occupational therapist)has also agreed to facilitate

coordination of providing proper care for my mother. To this

end she will accompany me to an appointment with my mother's

neurologist to diguss management of symptoms, this as you can

imagine is long waited for, tangible support,long awaited.

Thank you! Pam this group has given me the necessary

information I required to be able to successfully advocate on

both my mother's and step-fathers behalf! Pam to this end I am

always looking for more information specifically in support of

the importance in Management of symptoms, caregiver information,

handouts I can give to (Quickly read, but not overwhelm).

Written material in support of good therapy services and

importance they provide with respect to " Quality of Life " . I am

still in the gathering information stage and any handouts I can

give to my moms healthcare providers to gentley educate them

would be of enormous help, not only for my mother, but, for

others to follow. Also, Pam I am interested in finding more

support closer to home.

Very greatful for this group!

Jeannette XXXXXX (daughter)

XXXXX XXXX, Ontario. Canada.

45 min. drive to London, Ontario and 2 hr. drive to Toronto,

Ontario.

1 hr. plus drive to Detroit, Michigan.

Sennewald Charlottesville, Virginia