Re: from the guinea pig's desk

[Guest guest]

Aletta,

I am so glad that you were able to see the doctor. I am also glad

that you found a medication that helps you. Is your daughter doing

better that she is able to come and see you? I am sorry she also

suffers from neurological problems. I hope that you enjoy your time

together. Time is too short not to. What is the temperature up there

to need a blanket? I am in Georgia and the temperatures are in the

90's and very humid. I would die in a blanket! Hope today is better

for you!

God bless,

Belinda

> Saw the doctor today, very pleased with the buscopan clearing up a

number

> of symptoms. Extending my script for another three months. Having

> bloodwork done on Monday. If my iron levels are still excessive,

or RBC

> high he will consider ordering a phlebotomy. Still feels unreal to

have

> him refer to Shy-Drager as definite, but I need to hear it. This

is the

> first time I actually heard his voice, I've always lip-read him,

never

> heard him (not in memory), completely different, and I could 'hear'

him

> even when he turned away. I'm also able to idetify far-away sound

(no

> longer a noise blur).

>

> My oldest daughter Shari is coming over tomorrow, haven't seen her

for

> almost a year. She's still plagued by neurological problems. At

least

> she's able to work again. I often worry that all of us having

neurological

> problems is linked, and with her I know it can't be hereditary (I'm

not her

> biological mother). I've heard molds and toxins can trigger

neurological

> problems. Also in the J. Fox special they mentioned the

set of

> Family Ties seemed to produce a nest of Parkinsons, and other such

clusters

> have also been identified. Does anyone have specific literature or

links

> for this.

>

> Thanks to the vertigo being at bay I can walk much better, I've

extended my

> walks to about eight blocks. I've also been able to do exercises

standing

> up (it's been months). According to the doctor, if I'm not

experiencing

> any negative effects it is completely safe to take the buscopan for

an

> extended period of time. It may not be a standard treatment, but

I'm

> terribly pleased with how well it works for me. Quality of life is

everything.

>

> He did not think ablation was the way to go for the facio/cranial

pain. He

> will try to help me get the Sage Mouth Moisturizer, and the

Citrucel -

> which has still not been possible. My mother in law could not find

any in

> Toronto either. The Glaxxo Welcome people were not helpful at

all. My

> doctor will call them and see if he can get me some (maybe they

just don't

> want to deal with the great unwashed). He signed a request for a

liguid

> food allowance, but we'll see if that actually cmes through - would

be nice.

>

> Aside from that I've been sitting wrapped in blankets on a summer's

day -

> limbs blue and stiff. Ah well, one thing at a time. Optimistic

maybe, but

> seeing any improvement is possible, gives me the incentive to beat

this

> dragon, no matter how bad the odds.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

[Guest guest]

Aletta,

I am so glad that you were able to see the doctor. I am also glad

that you found a medication that helps you. Is your daughter doing

better that she is able to come and see you? I am sorry she also

suffers from neurological problems. I hope that you enjoy your time

together. Time is too short not to. What is the temperature up there

to need a blanket? I am in Georgia and the temperatures are in the

90's and very humid. I would die in a blanket! Hope today is better

for you!

God bless,

Belinda

> Saw the doctor today, very pleased with the buscopan clearing up a

number

> of symptoms. Extending my script for another three months. Having

> bloodwork done on Monday. If my iron levels are still excessive,

or RBC

> high he will consider ordering a phlebotomy. Still feels unreal to

have

> him refer to Shy-Drager as definite, but I need to hear it. This

is the

> first time I actually heard his voice, I've always lip-read him,

never

> heard him (not in memory), completely different, and I could 'hear'

him

> even when he turned away. I'm also able to idetify far-away sound

(no

> longer a noise blur).

>

> My oldest daughter Shari is coming over tomorrow, haven't seen her

for

> almost a year. She's still plagued by neurological problems. At

least

> she's able to work again. I often worry that all of us having

neurological

> problems is linked, and with her I know it can't be hereditary (I'm

not her

> biological mother). I've heard molds and toxins can trigger

neurological

> problems. Also in the J. Fox special they mentioned the

set of

> Family Ties seemed to produce a nest of Parkinsons, and other such

clusters

> have also been identified. Does anyone have specific literature or

links

> for this.

>

> Thanks to the vertigo being at bay I can walk much better, I've

extended my

> walks to about eight blocks. I've also been able to do exercises

standing

> up (it's been months). According to the doctor, if I'm not

experiencing

> any negative effects it is completely safe to take the buscopan for

an

> extended period of time. It may not be a standard treatment, but

I'm

> terribly pleased with how well it works for me. Quality of life is

everything.

>

> He did not think ablation was the way to go for the facio/cranial

pain. He

> will try to help me get the Sage Mouth Moisturizer, and the

Citrucel -

> which has still not been possible. My mother in law could not find

any in

> Toronto either. The Glaxxo Welcome people were not helpful at

all. My

> doctor will call them and see if he can get me some (maybe they

just don't

> want to deal with the great unwashed). He signed a request for a

liguid

> food allowance, but we'll see if that actually cmes through - would

be nice.

>

> Aside from that I've been sitting wrapped in blankets on a summer's

day -

> limbs blue and stiff. Ah well, one thing at a time. Optimistic

maybe, but

> seeing any improvement is possible, gives me the incentive to beat

this

> dragon, no matter how bad the odds.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

[Guest guest]

Aletta,

I am so glad that you were able to see the doctor. I am also glad

that you found a medication that helps you. Is your daughter doing

better that she is able to come and see you? I am sorry she also

suffers from neurological problems. I hope that you enjoy your time

together. Time is too short not to. What is the temperature up there

to need a blanket? I am in Georgia and the temperatures are in the

90's and very humid. I would die in a blanket! Hope today is better

for you!

God bless,

Belinda

> Saw the doctor today, very pleased with the buscopan clearing up a

number

> of symptoms. Extending my script for another three months. Having

> bloodwork done on Monday. If my iron levels are still excessive,

or RBC

> high he will consider ordering a phlebotomy. Still feels unreal to

have

> him refer to Shy-Drager as definite, but I need to hear it. This

is the

> first time I actually heard his voice, I've always lip-read him,

never

> heard him (not in memory), completely different, and I could 'hear'

him

> even when he turned away. I'm also able to idetify far-away sound

(no

> longer a noise blur).

>

> My oldest daughter Shari is coming over tomorrow, haven't seen her

for

> almost a year. She's still plagued by neurological problems. At

least

> she's able to work again. I often worry that all of us having

neurological

> problems is linked, and with her I know it can't be hereditary (I'm

not her

> biological mother). I've heard molds and toxins can trigger

neurological

> problems. Also in the J. Fox special they mentioned the

set of

> Family Ties seemed to produce a nest of Parkinsons, and other such

clusters

> have also been identified. Does anyone have specific literature or

links

> for this.

>

> Thanks to the vertigo being at bay I can walk much better, I've

extended my

> walks to about eight blocks. I've also been able to do exercises

standing

> up (it's been months). According to the doctor, if I'm not

experiencing

> any negative effects it is completely safe to take the buscopan for

an

> extended period of time. It may not be a standard treatment, but

I'm

> terribly pleased with how well it works for me. Quality of life is

everything.

>

> He did not think ablation was the way to go for the facio/cranial

pain. He

> will try to help me get the Sage Mouth Moisturizer, and the

Citrucel -

> which has still not been possible. My mother in law could not find

any in

> Toronto either. The Glaxxo Welcome people were not helpful at

all. My

> doctor will call them and see if he can get me some (maybe they

just don't

> want to deal with the great unwashed). He signed a request for a

liguid

> food allowance, but we'll see if that actually cmes through - would

be nice.

>

> Aside from that I've been sitting wrapped in blankets on a summer's

day -

> limbs blue and stiff. Ah well, one thing at a time. Optimistic

maybe, but

> seeing any improvement is possible, gives me the incentive to beat

this

> dragon, no matter how bad the odds.

>

> aletta mes

> vancouver, bc Canada

> web: http://aletta.0catch.com

[Guest guest]

Aletta,

I love to go to thrift stores, flea markets, etc. It is fun to find

something you are collecting or something to wear that still has the

tag on it and you get it for 69 cents. Those simple things make me

happy.

I am sorry your body temperature does the chill and cold for you. I

am the reverse. I get extremely hot and sweat more than I should. It

sure is hard to figure this stuff out.

My oldest son, his new wife and her 2 sons,(my new ready-made

grandchilren) have moved in with me and the rest of my bunch. I asked

them to. I want to be able to spend more time with them and she is a

wonderful help to me around the house. I told them they could save

money to buy them a place to live instead of renting. They help out

with groceries and such here so that helps us also. As I said time is

short and I want to be with my loved ones as much as possible.

I haven't been doing well lately. I am not sure what is wrong with

me. I go to my neurologist Tuesday and on the 20th to another

neurologist that he wants me to see. I fall asleep at the drop of a

hat. I never know I am falling asleep until I wake up. I fell asleep

in church, on the toilet, in a chair, I prefer when I fall asleep in

bed but oh well. I have never fallen asleep on in church or the

toilet before. GO Figure!

As usual I pray that you are having a good day!

Love and gentle hugs,

Belinda

> > > Saw the doctor today, very pleased with the buscopan clearing

up a

> >number

> > > of symptoms. Extending my script for another three months.

Having

> > > bloodwork done on Monday. If my iron levels are still

excessive,

> >or RBC

> > > high he will consider ordering a phlebotomy. Still feels

unreal to

> >have

> > > him refer to Shy-Drager as definite, but I need to hear it.

This

> >is the

> > > first time I actually heard his voice, I've always lip-read

him,

> >never

> > > heard him (not in memory), completely different, and I

could 'hear'

> >him

> > > even when he turned away. I'm also able to idetify far-away

sound

> >(no

> > > longer a noise blur).

> > >

> > > My oldest daughter Shari is coming over tomorrow, haven't seen

her

> >for

> > > almost a year. She's still plagued by neurological problems.

At

> >least

> > > she's able to work again. I often worry that all of us having

> >neurological

> > > problems is linked, and with her I know it can't be hereditary

(I'm

> >not her

> > > biological mother). I've heard molds and toxins can trigger

> >neurological

> > > problems. Also in the J. Fox special they mentioned the

> >set of

> > > Family Ties seemed to produce a nest of Parkinsons, and other

such

> >clusters

> > > have also been identified. Does anyone have specific

literature or

> >links

> > > for this.

> > >

> > > Thanks to the vertigo being at bay I can walk much better, I've

> >extended my

> > > walks to about eight blocks. I've also been able to do

exercises

> >standing

> > > up (it's been months). According to the doctor, if I'm not

> >experiencing

> > > any negative effects it is completely safe to take the buscopan

for

> >an

> > > extended period of time. It may not be a standard treatment,

but

> >I'm

> > > terribly pleased with how well it works for me. Quality of

life is

> >everything.

> > >

> > > He did not think ablation was the way to go for the

facio/cranial

> >pain. He

> > > will try to help me get the Sage Mouth Moisturizer, and the

> >Citrucel -

> > > which has still not been possible. My mother in law could not

find

> >any in

> > > Toronto either. The Glaxxo Welcome people were not helpful at

> >all. My

> > > doctor will call them and see if he can get me some (maybe they

> >just don't

> > > want to deal with the great unwashed). He signed a request for

a

> >liguid

> > > food allowance, but we'll see if that actually cmes through -

would

> >be nice.

> > >

> > > Aside from that I've been sitting wrapped in blankets on a

summer's

> >day -

> > > limbs blue and stiff. Ah well, one thing at a time. Optimistic

> >maybe, but

> > > seeing any improvement is possible, gives me the incentive to

beat

> >this

> > > dragon, no matter how bad the odds.

> > >

> > > aletta mes

> > > vancouver, bc Canada

> > > web: http://aletta.0catch.com

> >

> >

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

> >unsubscribe by sending a blank email to

> >

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> >

> >

> >

> >

> >