RE: Is autopsy of benefit to understanding Shy Drager?

[Guest guest]

Hi ,

I'm sorry to hear your father-in-law is so sick. And how wonderful

of you to be thinking of others at this most difficult time.

Yes indeed, an autopsy and especially brain tissue donation can give

researchers many important clues as to the underlying cause of Shy-

Drager/Multiple System Atrophy. Shy-Drager usually appears after age

50 but there are people with a younger onset and people with an older

onset.

There are two brain donation programs in the US that specifically

look for tissue from people suspected of having Shy-Drager/Multiple

System Atrophy. I will forward information about the Mayo Clinic and

Vanderbilt University brain tissue donation programs.

It's important to contact them as soon as possible to make the

arrangements prior to death as the tissue only remains viable for a

short time.

You and your family will be in my thoughts.

Take care,

Pam

> My 81 year old father-in-law has a working diagnosis of Shy drager

syndrome.

> The things we thought were just part of the aging process

certainly fit the

> symptoms I have seen described, except he does not snore!

The " brain fogs "

> that occasionally occur, I thought might have been " mini-strokes " .

He

> finally had a complete " freezing " episode and was hospitalized.

The initial

> thought was Parkinsons, but he had no response to the sinimet

(sic), in fact,

> it seemed to increase jerking movements of his arm. The brain

scan showed

> atrophy of the brain. At this point he is in a nursing home with

his

> kidneys shutting down. He is quite rational, but is refusing food

and

> refusing any medical treatment. His death is expected within a

week to two

> days.

> In reading all of your posts, I get the impression that shy drager

usually

> appears in younger persons. My question is ....IF an autopsy

would help at

> all in research, I would try to encourage my mother-in-law to

request it.

> I do not think she would want to do this if it would be of no use

to other

> persons suffering with this condition.

> Thank you

>

> K.

[Guest guest]

Greetings!

First, I am so sorry to hear about your father-in-law. This can be a hard situation.

Though Shy-Dragger does seem to occur long before the 8th decade, it is not too far out of line. But his symptoms seem to fit the picture, as best I understand it.

You wondered:

> IF an autopsy would help at all in research, I would try to

> encourage my mother-in-law to request it. I do not think

> she would want to do this if it would be of no use to other

> persons suffering with this condition.

Yes, it will help. Even if they decide it is not Shy-Dragger, having another condition that seems to fit the Shy-Dragger profile will help. Researchers are working on trying to find a way to better diagnose these conditions. So, yes, it will help.

Regards,

=jbf=

B. Fisher

[Guest guest]

Hi!

I'm sorry to hear about your FIL. MSA is such a

terrible disease.

My father passed away a month ago from complications

of MSA. We made the decision to donate his brain

tissue and spinal cord to Mayo Clinic. We made the

decision after my father passed away. However, I

highly recommend making arrangements now if at all

possible. If not for the help of a family friend who

is a doctor, we wouldn't have been able to make

arrangements in time. There is a small window of

opportunity after death to preserve the tissue.

The folks at Mayo were wonderful. They have a research

grant which paid for all costs involved.

Somehow, donating his tissue and knowing we might be

helping someone else with this terrible disease helped

ease our pain a bit.

in OK

--- buckykoos@... wrote:

> My 81 year old father-in-law has a working diagnosis

> of Shy drager syndrome.

> The things we thought were just part of the aging

> process certainly fit the

> symptoms I have seen described, except he does not

> snore! The " brain fogs "

> that occasionally occur, I thought might have been

> " mini-strokes " . He

> finally had a complete " freezing " episode and was

> hospitalized. The initial

> thought was Parkinsons, but he had no response to

> the sinimet (sic), in fact,

> it seemed to increase jerking movements of his arm.

> The brain scan showed

> atrophy of the brain. At this point he is in a

> nursing home with his

> kidneys shutting down. He is quite rational, but is

> refusing food and

> refusing any medical treatment. His death is

> expected within a week to two

> days.

> In reading all of your posts, I get the impression

> that shy drager usually

> appears in younger persons. My question is ....IF

> an autopsy would help at

> all in research, I would try to encourage my

> mother-in-law to request it.

> I do not think she would want to do this if it would

> be of no use to other

> persons suffering with this condition.

> Thank you

>

> K.

>

__________________________________________________

[Guest guest]

Hi!

I'm sorry to hear about your FIL. MSA is such a

terrible disease.

My father passed away a month ago from complications

of MSA. We made the decision to donate his brain

tissue and spinal cord to Mayo Clinic. We made the

decision after my father passed away. However, I

highly recommend making arrangements now if at all

possible. If not for the help of a family friend who

is a doctor, we wouldn't have been able to make

arrangements in time. There is a small window of

opportunity after death to preserve the tissue.

The folks at Mayo were wonderful. They have a research

grant which paid for all costs involved.

Somehow, donating his tissue and knowing we might be

helping someone else with this terrible disease helped

ease our pain a bit.

in OK

--- buckykoos@... wrote:

> My 81 year old father-in-law has a working diagnosis

> of Shy drager syndrome.

> The things we thought were just part of the aging

> process certainly fit the

> symptoms I have seen described, except he does not

> snore! The " brain fogs "

> that occasionally occur, I thought might have been

> " mini-strokes " . He

> finally had a complete " freezing " episode and was

> hospitalized. The initial

> thought was Parkinsons, but he had no response to

> the sinimet (sic), in fact,

> it seemed to increase jerking movements of his arm.

> The brain scan showed

> atrophy of the brain. At this point he is in a

> nursing home with his

> kidneys shutting down. He is quite rational, but is

> refusing food and

> refusing any medical treatment. His death is

> expected within a week to two

> days.

> In reading all of your posts, I get the impression

> that shy drager usually

> appears in younger persons. My question is ....IF

> an autopsy would help at

> all in research, I would try to encourage my

> mother-in-law to request it.

> I do not think she would want to do this if it would

> be of no use to other

> persons suffering with this condition.

> Thank you

>

> K.

>

__________________________________________________

[Guest guest]

Hi!

I'm sorry to hear about your FIL. MSA is such a

terrible disease.

My father passed away a month ago from complications

of MSA. We made the decision to donate his brain

tissue and spinal cord to Mayo Clinic. We made the

decision after my father passed away. However, I

highly recommend making arrangements now if at all

possible. If not for the help of a family friend who

is a doctor, we wouldn't have been able to make

arrangements in time. There is a small window of

opportunity after death to preserve the tissue.

The folks at Mayo were wonderful. They have a research

grant which paid for all costs involved.

Somehow, donating his tissue and knowing we might be

helping someone else with this terrible disease helped

ease our pain a bit.

in OK

--- buckykoos@... wrote:

> My 81 year old father-in-law has a working diagnosis

> of Shy drager syndrome.

> The things we thought were just part of the aging

> process certainly fit the

> symptoms I have seen described, except he does not

> snore! The " brain fogs "

> that occasionally occur, I thought might have been

> " mini-strokes " . He

> finally had a complete " freezing " episode and was

> hospitalized. The initial

> thought was Parkinsons, but he had no response to

> the sinimet (sic), in fact,

> it seemed to increase jerking movements of his arm.

> The brain scan showed

> atrophy of the brain. At this point he is in a

> nursing home with his

> kidneys shutting down. He is quite rational, but is

> refusing food and

> refusing any medical treatment. His death is

> expected within a week to two

> days.

> In reading all of your posts, I get the impression

> that shy drager usually

> appears in younger persons. My question is ....IF

> an autopsy would help at

> all in research, I would try to encourage my

> mother-in-law to request it.

> I do not think she would want to do this if it would

> be of no use to other

> persons suffering with this condition.

> Thank you

>

> K.

>

__________________________________________________