Re: Posting>

[Guest guest]

Hi

Thank you for your kind and gentle statement :>) but I'm afraid it

doesn't apply to our " family " here!! We do send private replies to

members we talk to on a regular basis " off list " but for the most part

our comments are meant to be posted on the list.

Most of us are family. We are a very close knit group and we share life

details with all on the list. We get to know each and every family

member not just the person diagnosed with MSA. I know that might be a

little hard to understand but for many of our members this may be the

only contact they have with others who share their problems and believe

me, MSA has many, many problems to share. It affects every aspect of

life for the family dealing with it.

We are aware of the normal mode of egroups but we tend to run slightly

" amuck " from the norm both with this disease and with our responses. We

enjoy the new babies, dogs, deer stories, weddings, trips, frustrations,

gentle banter, humor and family updates. We take our " family " time

seriously and we take our losses to this disease just as seriously.

When we lose a member, it is a family loss and we know many of the

people who are mourning sitting in those pews on that day.

We maintain our support group feelings long distance, world wide. For

many, this is their only outlet or touch with the human side of life

other than the person who is suffering from the disease. Many of our

people are 100% home bound or at least 95% home bound so words and the

hugs they get across the line may be as close as they get to human

contact for quite some time. We share tears, joy, frustrations,

stumbles, and defeats.

We appreciate your comment and take it in the manner in which it was

offered, we thank you. We are glad you have joined us and hope we can

be of some help to you in your search for information. Please feel free

to join in at any time and send comments. We are glad to have you.

>From the KS farm girl

Sally

[Guest guest]

Makes sense. Thanks for your reply. Take

care.

At 01:34 PM 10/12/00 -0500, you wrote:

>Hi

>

>Thank you for your kind and gentle statement :>) but I'm afraid

it

>doesn't apply to our " family " here!! We do send

private replies to

>members we talk to on a regular basis " off list " but for

the most part

>our comments are meant to be posted on the list.

>

>Most of us are family. We are a very close knit group and we

share life

>details with all on the list. We get to know each and every

family

>member not just the person diagnosed with MSA. I know that

might be a

>little hard to understand but for many of our members this may be

the

>only contact they have with others who share their problems and

believe

>me, MSA has many, many problems to share. It affects every

aspect of

>life for the family dealing with it.

>

>We are aware of the normal mode of egroups but we tend to run

slightly

> " amuck " from the norm both with this disease and with our

responses. We

>enjoy the new babies, dogs, deer stories, weddings, trips,

frustrations,

>gentle banter, humor and family updates. We take our

" family " time

>seriously and we take our losses to this disease just as

seriously.

>When we lose a member, it is a family loss and we know many of

the

>people who are mourning sitting in those pews on that day.

>

>We maintain our support group feelings long distance, world

wide. For

>many, this is their only outlet or touch with the human side of

life

>other than the person who is suffering from the disease. Many

of our

>people are 100% home bound or at least 95% home bound so words and

the

>hugs they get across the line may be as close as they get to

human

>contact for quite some time. We share tears, joy,

frustrations,

>stumbles, and defeats.

>

>We appreciate your comment and take it in the manner in which it

was

>offered, we thank you. We are glad you have joined us and hope

we can

>be of some help to you in your search for information. Please

feel free

>to join in at any time and send comments. We are glad to have

you.

>

>>From the KS farm girl

>Sally

>

>

>

[Guest guest]

,

Thank you for your kind offers of help. I could use your advice on

medicare and wheelchairs. My dad is 80 with a 30+ year career in the

military. He has the use of the VA and is covered by an HMO. HMO provided a

good wheelchair for about a year. Then they called and said they had another

company providing the chair. The new chair is awful. Do we have any choice?

Or does the HMO control that choice?

I know what you mean about it being such a wonderful privilige to care

for your mom. We are glad for each new day with my dad.

/ Phoenix

[Guest guest]

Greetings !

I've got to agree with Sally on this. Oh, don't get me wrong, with my job

and family I often find I can not read each and every message. I try to

skim. If the message is long and/or confusing, I may just delete it.

Sorry, with my blurry and doubled vision if the message isn't readily found,

I go onto the next challenge. But you'll find most of the important

messages are clearly labeled.

Believe me, this group acts as a 'support' group more than an information

sharing group. You see, we face so many life altering challenges it's

important to know to whom you are sharing your soul. And that requires

sharing the little stuff ... not just information.

But welcome! No, really! Tell us more about yourself. If you did already,

my apologies! (That would mean I was lost in space again ... nothing new

for me!)

Regards,

=jbf=

B. Fisher

[Guest guest]

Actually I agree with Sally too. I wrote my note for

people who actually didn't know how to respond to only one person without

posting to the entire group. Now they know and they can make a

choice.

MSA, aka Shy-Drager, as we all know can only be described as fickle and

unpredictable. It is great to belong to this group both for the

information and for the support. Oh yes, and for the jokes.

My mom is 83 years old and was misdiagnosed for at least 2 years (they

said she was having a series of small strokes and they also put in a

pacemaker.)

When we finally got her to a neurologist, he made the correct

diagnosis. Unfortunately, the frequency and severity of her

symptoms have accellerated and we just moved her to an assisted-living

group home where she can get additional supervision and care.

We consider it an honor to look after her and will never equal her

efforts at looking after our family.

I'll certainly post to the group if we learn anything new. So far

neither Sinemet nor elevating the head of her bed have helped much.

She enjoys being " driven " in her wheelchair on long walks

outside.

One area in which I can help is in helping folks learn of web sites where

we bought mom's wheel chair and lift chair at considerable savings and no

sales taxes or delivery charges. I can also help folks learn how to

get Medicare pay (in part) for these items.

Perhaps these items have already been covered so I'll await inquiries to

see if there is any interest.

That's it for now. Take care.

At 04:16 PM 10/12/00 -0400, you wrote:

>Greetings !

>

>I've got to agree with Sally on this. Oh, don't get me wrong,

with my job

>and family I often find I can not read each and every message.

I try to

>skim. If the message is long and/or confusing, I may just

delete it.

>Sorry, with my blurry and doubled vision if the message isn't readily

found,

>I go onto the next challenge. But you'll find most of the

important

>messages are clearly labeled.

>

>Believe me, this group acts as a 'support' group more than an

information

>sharing group. You see, we face so many life altering

challenges it's

>important to know to whom you are sharing your soul. And that

requires

>sharing the little stuff ... not just information.

>

>But welcome! No, really! Tell us more about

yourself. If you did already,

>my apologies! (That would mean I was lost in space again ...

nothing new

>for me!)

>

>

>Regards,

>=jbf=

>

> B. Fisher

>

>

>

[Guest guest]

,

I'm interested in the wheelchair sites, you mentioned.

Take care, Bill and Charlotte

[Guest guest]

Georg

>,

, I am also interested in those sites. You might want to also add

them to the egroups links site ( /links/shydrager/ )

probably under the symptom management folder.

Thanks for sharing the information. I'm betting (based on my balance

problems) I will need a wheelchair in a year or so. (See, Bill & Sally, I

really do listen! ;-)

Regards,

=jbf=

B. Fisher

[Guest guest]

Great idea. I just took your suggestion and added a

link under symptom management.

At 06:46 PM 10/12/00 -0400, you wrote:

>

>Georg

>

>>,

>

>, I am also interested in those sites. You might

want to also add

>them to the egroups links site (

/links/shydrager/

)

>probably under the symptom management folder.

>

>Thanks for sharing the information. I'm betting (based on my balance

>problems) I will need a wheelchair in a year or so. (See, Bill & Sally, I

>really do listen! ;-)

>

>

>Regards,

>=jbf=

>

> B. Fisher

>

>

>

[Guest guest]

Well I know nothing about HMOs but perhaps I can help a bit

regarding getting a wheelchair partly paid for by Medicare.

The first thing is that you must have your Doctor agree that a wheel

chair is medically required. If your doctor agrees, he/she will

have to fill out some forms. The tricky part is to call your

medicare provider and they will refer you to another medicare phone

number that is just for equipment such as wheelchairs.

These people should be willing to provide you with the forms you will

need to fill out. They should also be able to tell you whether you

will qualify and how much they will pay toward the purchase of the

chair.

Let's assume that they will pay something for the chair based on what you

tell them. Armed with that knowledge, you will know how much they

will pay and you can decide how much more you are willing to pay

yourself. My hunch is that you will have to pay something, but

perhaps it will be affordable.

If you decide to proceed, you should then find someone to sell you the

chair you want. You may wish to visit some local store first to try

out different models and see what you like. And if the price is

right, I always prefer to shop locally.

Unfortunately, my local dealers all wanted about double what I could buy

our chair for by shopping via Internet. So that's what I did.

Earlier I posted a website of the place I used. Once you purchase

the chair, you will need to fill out as much as you can of the forms and

then forward them to your doctor for completion. You should arrange

to get back the completed forms from the doctor and then you can copy

them and submit them along with a copy of the receipt to Medicare...again

the special office designated on the forms, not to the regular Medicare

office.

Reimbursement should arrive within 6-8 weeks, again, only for the amount

they allow which may be less than the full amount you paid.

I hope this is clear. Don't hesitate to contact me if I need to

clarify this. Take care.

At 07:39 PM 10/12/00 -0400, you wrote:

>,

>

> Thank you for your kind offers of help. I

could use your advice on

>medicare and wheelchairs. My dad is 80 with a 30+ year career

in the

>military. He has the use of the VA and is covered by an HMO. HMO

provided a

>good wheelchair for about a year. Then they called and said

they had another

>company providing the chair. The new chair is awful. Do

we have any choice?

>Or does the HMO control that choice?

> I know what you mean about it being such a

wonderful privilige to care

>for your mom. We are glad for each new day with my dad.

>

>

/ Phoenix

>

>

[Guest guest]

Welcome to our world ................... as you can see, it can get

pretty goofy. I normally caution people to enter at their own risk

because we go from poop to hysterical laughter at the drop of a hat.

Please feel free to share any wisdom you have. Believe me, some days it

takes all our brains put together to come up with 1 functioning brain.

And then, there are the really bad days, when we can't even manage that.

All help is appreciated.

Sally