Re: My Mother has just been diagnosed with MSA

August 10, 2001

My heart goes out to you. I was where you are just

seven short months ago when my father was dx. It is

overwhelming, but it does get better. At first, it's

hard to sort through all of the information here and

make sense of everything. Pam's suggestion is great

and she gave you some good links.

I have found it to be true that there is no set

" staging " of this disease. What I have also found is

that my father will go through a period of somewhat

rapid decline followed by a period where he seems to

" plateau " for a while. For me, I have new questions

all the time as my father's symptoms worsen or when he

develops something new. You will find a wealth of

information in this group. There are many

knowledgeable people here who are more than willing to

patiently answer any question you may have. I am

constantly amazed that someone has an answer for every

question asked. It seems that no matter what someone

is dealing with, someone else in this group has dealt

with the same issues.

So, welcome, although I'm sorry you have to be here.

Ask away!

--- elizabarker@... wrote:

> My Mother has just been diagnosed with MSA. We have

> been trying to

> learn all we can. I must say that that it is

> overwhelming. At a

> minimum, we're scared and confused. It just seems so

> overwhelming. I

> have tried to do research and it is coming along.

> However, it feels

> as if I have just gotten in on the middle of a

> conversation that I

> know nothing about.

>

> Can someone please tell me how to go about beginning

> at ground zero

> and working my way up? There is so much information

> out there that it

> is difficult to know where to start. My mother has

> just been

> diagnosed (thankfully my sister (her caregiver)

> decided to change her

> neurologist, or she would have gone undiagnosed. She

> has her second

> visit soon).

>

> Can anyone please tell me what stage she might be

> at?

>

> She is 72 years old. She began falling 2-4 years

> ago. Her gait and

> speech has changed dramatically over the last year

> or so. Sometimes,

> she will take a step even when she senses it is not

> safe. It is as if

> she knows it is unsafe, but cannot understand what

> might happen. She

> has uncontrollable tremors mostly in her hands (but

> sometimes in her

> feet). She has started wearing Depends now, as she

> has trouble

> controlling her bladder/bowels. She began becoming

> fatigued easily

> about two years ago. She is confused very easily. On

> top of all this,

> she is in the early stages Alzheimers and has

> Crohn's disease. Also

> has sometimes uncontrollable nosebleeds, is this

> related?

>

> We don't know where to turn. It is almost unbearable

> to wait until

> her next Dr's appointment. We can't stand not

> knowing how much time

> we have left with her. We love her so much.

>

> This website is great, we've gotten some really good

> information. But

> there is so much to digest, we are just so confused.

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

August 10, 2001

Eliza,

MSA does not have real stages as PD has. Often the patient is becomes

wheelchair bound fairly quickly, then stays there for many years. Others

walk aroung for 20 years or more and have other problems, but don't need a

wheelchair. The nosebleeds are not normal as usually MSA patients have low

BP. Ask you doctor about the nosebleeds.

Confusion is always a sign that she should be checked for infection, often a

UTI. Is she getting speech and physical therapy through Medicare? That can

help the speech problem and possibly prevent infections.

Take care, Bill and Charlotte in Herndon, Virginia, USA

August 10, 2001

Welcome, though sorry you are here. I joined the list for my mother, too,

who was diagnosed with Parkinson's, then less than 2 years later, with MSA.

My mother Joyce died at 71 from complications.

She had much imbalance, too. She was told never to walk unassisted, but

didn't pay much attention to that good advice. I hope if your mother is

falling that someone is with her all the time.

Pam gave you good leads. Also, being on this list will expose you to lots of

MSA issues--some will apply to your mother and some won't. My mother didn't

have any BP problems, but shared the others. She, too, had problems with

incontinence.

The best you can do is be knowledgeable, be aware of any sudden decline

(that may signal an infection to be addressed), make sure your mother

exercises (even range of motion if that is all that is possible), monitor

the drugs carefully along with diet. Most of all, be with your mother as

much as you can. You don't know the course of this disease: my mother had it

for 2 years; others on the list for 22 years.

I am sure the dementia just makes everything so much worse. Many have found

benefit from Aricept.

If your mother is having bowel incontinence, which is common, there is a

product that many say is good (I don't remember the name).

You are at the right place. Debbie

My Mother has just been diagnosed with MSA

My Mother has just been diagnosed with MSA. We have been trying to

learn all we can. I must say that that it is overwhelming. At a

minimum, we're scared and confused. It just seems so overwhelming. I

have tried to do research and it is coming along. However, it feels

as if I have just gotten in on the middle of a conversation that I

know nothing about.

Can someone please tell me how to go about beginning at ground zero

and working my way up? There is so much information out there that it

is difficult to know where to start. My mother has just been

diagnosed (thankfully my sister (her caregiver) decided to change her

neurologist, or she would have gone undiagnosed. She has her second

visit soon).

Can anyone please tell me what stage she might be at?

She is 72 years old. She began falling 2-4 years ago. Her gait and

speech has changed dramatically over the last year or so. Sometimes,

she will take a step even when she senses it is not safe. It is as if

she knows it is unsafe, but cannot understand what might happen. She

has uncontrollable tremors mostly in her hands (but sometimes in her

feet). She has started wearing Depends now, as she has trouble

controlling her bladder/bowels. She began becoming fatigued easily

about two years ago. She is confused very easily. On top of all this,

she is in the early stages Alzheimers and has Crohn's disease. Also

has sometimes uncontrollable nosebleeds, is this related?

We don't know where to turn. It is almost unbearable to wait until

her next Dr's appointment. We can't stand not knowing how much time

we have left with her. We love her so much.

This website is great, we've gotten some really good information. But

there is so much to digest, we are just so confused.

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

August 10, 2001

Don't feel bad about lack of knowledge about MAS, Probably 80% of the

doctors have never even heard the terms multiple system atrophy or the old

term, Shy Dragger syndrome.

Just hang in there and this family or support group will get you through it.

God Bless,

Jim Stark

My Mother has just been diagnosed with MSA

> My Mother has just been diagnosed with MSA. We have been trying to

> learn all we can. I must say that that it is overwhelming. At a

> minimum, we're scared and confused. It just seems so overwhelming. I

> have tried to do research and it is coming along. However, it feels

> as if I have just gotten in on the middle of a conversation that I

> know nothing about.

>

> Can someone please tell me how to go about beginning at ground zero

> and working my way up? There is so much information out there that it

> is difficult to know where to start. My mother has just been

> diagnosed (thankfully my sister (her caregiver) decided to change her

> neurologist, or she would have gone undiagnosed. She has her second

> visit soon).

>

> Can anyone please tell me what stage she might be at?

>

> She is 72 years old. She began falling 2-4 years ago. Her gait and

> speech has changed dramatically over the last year or so. Sometimes,

> she will take a step even when she senses it is not safe. It is as if

> she knows it is unsafe, but cannot understand what might happen. She

> has uncontrollable tremors mostly in her hands (but sometimes in her

> feet). She has started wearing Depends now, as she has trouble

> controlling her bladder/bowels. She began becoming fatigued easily

> about two years ago. She is confused very easily. On top of all this,

> she is in the early stages Alzheimers and has Crohn's disease. Also

> has sometimes uncontrollable nosebleeds, is this related?

>

> We don't know where to turn. It is almost unbearable to wait until

> her next Dr's appointment. We can't stand not knowing how much time

> we have left with her. We love her so much.

>

> This website is great, we've gotten some really good information. But

> there is so much to digest, we are just so confused.

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

August 10, 2001