Re: [MSA]Byron...New Diagnosis

[Guest guest]

Dear Byron,

You don't sound like a person who could ever be idle or bored. Your

mind would probably prevent that from happening and your positive

attitude and drive will be an asset to you in the years to come.

Keep writing, we will all be excited to see one of your works in

print whether or not we find the topic interesting. It will be your

accomplishment we will find inspiring and some us might even enjoy

the ethics topic.

Jan

> > > > > Thanks for the information and advice. I'll look at the

> > resources

> > > > you have

> > > > > given.

> > > > >

> > > > > Yes, I want to get on with my life, as soon as possible. I

have

> > > > been

> > > > > semi-retired from teaching since June of 2001. I plan to

teach

> > > > just one

> > > > > course per quarter as long as my health permits. Also, I am

> > > > chairman and

> > > > > CEO of a non-profit foundation; I have to drive 500 miles to

> > attend

> > > > meetings

> > > > > of the Board of Directors. I have written 67% of each of

two

> > > > books, and I

> > > > > have an outline in my mind for a third. I have long

planned for

> > > > these as my

> > > > > retirement activities, and I will do my utmost to keep this

> > newly-

> > > > discovered

> > > > > condition from interfering with them.

> > > > >

> > > > > I note in the June 22 TV interview, there is cognitive

> > impairment

> > > > associated

> > > > > with this condition. I wonder if continuing to learn

something

> > > > new, so that

> > > > > new neural pathways are activated, will help to forestall

> > this. For

> > > > > example, I was forced to learn a lot about two areas of the

law

> > > > when my

> > > > > foundation was involved in a lawsuit and I was actively

> > involved in

> > > > the

> > > > > process (law is not my chosen field), even presenting part

of

> > the

> > > > oral

> > > > > argument before an appeals court last year. We'll see.

> > > > >

> > > > > Thanks again for your help.

> > > > >

> > > > > Byron

> > > > >

> > > > > RE: New Diagnosis

> > > > >

> > > > >

> > > > > > Greetings Byron!

> > > > > >

> > > > > > Sorry you have to be here, but hopefully you will find the

> > > > support you

> > > > > > need here.

> > > > > >

> > > > > > Yes, a long-term care policy is vital for someone with MSA

> > (the

> > > > new name

> > > > > > for Shy-Drager). When my work offered it, shortly after

> > symptoms

> > > > > > surfaced, I decided to purchase it.

> > > > > >

> > > > > > When to look into different housing? I would recommend

now.

> > > > Find out

> > > > > > what facilities are available now. Find out how long the

> > waiting

> > > > lists

> > > > > > are. Determine which set of facilities appear to have the

> > best

> > > > ongoing

> > > > > > care. Likewise be certain to make out wills and the like.

> > > > > >

> > > > > > Then continue to enjoy your life. Don't focus on the MSA.

> > Why

> > > > do I say

> > > > > > this? Well, you yourself mention the symptoms are

progressing

> > > > slowly.

> > > > > > Also you mention:

> > > > > >

> > > > > > I had difficulty in walking fast, in buttoning

> > > > > > clothes, and in tying my shoes. Occasionally,

> > > > > > I had slurred speech, hunted for words, and spoke

> > > > > > words that did not express my thoughts well. My

> > > > > > reasoning ability remained as sharp as ever. In

> > > > > > addition, I occasionally realized that I had not

> > > > > > taken a breath in a while, and I would gasp for air.

> > > > > >

> > > > > > It appears you have MSA-C, that is symptoms that start as

> > > > Sporadic OPCA.

> > > > > > Or MSA-C (since it progressed into autonomic problems).

You

> > may

> > > > want to

> > > > > > view the following pages:

> > > > > >

> > > > > > http://emedicine.com/neuro/topic671.htm Multiple

Systems

> > > > Atrophy

> > > > > > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> > > > > > http://emedicine.com/neuro/topic354.htm SND (MSA-P)

> > > > > >

> > > > > > Sporadic OPCA is the second item. But you will note that

> > based

> > > > on your

> > > > > > symptoms, it appears to have shifted quite clearly into

MSA.

> > > > Since it

> > > > > > started with problems with the cerebellum, it is

considered

> > to be

> > > > MSA-C.

> > > > > > IF you actively control symptoms, then you stand a good

> > chance of

> > > > a

> > > > > > longer life expectancy.

> > > > > >

> > > > > > One word of warning. With MSA-C, you need to be very

careful

> > > > about

> > > > > > sleep and swallowing problems. The first leads to very

poor

> > > > sleep,

> > > > > > extreme fatigue, high blood pressure, and in extreme

cases,

> > death

> > > > during

> > > > > > sleep. The second often leads to aspiration pneumonia,

which

> > is

> > > > the

> > > > > > leading cause of death for someone with MSA-C.

> > > > > >

> > > > > > To test problems with sleep, you might want to visit the

> > > > following page:

> > > > > >

> > > > > > http://www.sleepnet.com/sleeptest.html

> > > > > >

> > > > > > If you find yourself swallowing food incorrectly, please

go

> > have a

> > > > > > swallowing test done. There are specific therapies to

help

> > > > improve

> > > > > > swallowing problems. In extreme cases a feeding tube can

be

> > > > inserted

> > > > > > directly into the stomach. This greatly reduces the

chance of

> > > > > > aspiration pneumonia. But that is most likely a LONG way

done

> > > > the line.

> > > > > >

> > > > > > And you will get an idea that it is time, when you find

you

> > are

> > > > less and

> > > > > > less able to move around your own home. Be certain to

discuss

> > > > this with

> > > > > > your doctor / neurologist. They should be able to have

you

> > work

> > > > with a

> > > > > > physical therapist to determine when it is time to move.

> > > > > >

> > > > > > Anyway, just some thoughts...

> > > > > >

> > > > > >

> > > > > > Regards,

> > > > > > =jbf=

> > > > > >

> > > > > > B. Fisher

> > > > > >

> > > > > >

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

> > > > > > unsubscribe by sending a blank email to

> > > > > >

> > > > > > shydrager-unsubscribe@y...

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Dear Jan, Belinda, and anyone else interested:

You can see much of the recent history about the farm project by

visiting the Foundation's website: www.blandair.org

Jan, I just looked at your e-mail ID, and I see that you take the name

of a top-of-the-line piano. Do you play the piano?

Byron

RE: New Diagnosis

> > > > > >

> > > > > >

> > > > > > > Greetings Byron!

> > > > > > >

> > > > > > > Sorry you have to be here, but hopefully you will find the

> > > > > support you

> > > > > > > need here.

> > > > > > >

> > > > > > > Yes, a long-term care policy is vital for someone with MSA

> > > (the

> > > > > new name

> > > > > > > for Shy-Drager). When my work offered it, shortly after

> > > symptoms

> > > > > > > surfaced, I decided to purchase it.

> > > > > > >

> > > > > > > When to look into different housing? I would recommend

> now.

> > > > > Find out

> > > > > > > what facilities are available now. Find out how long the

> > > waiting

> > > > > lists

> > > > > > > are. Determine which set of facilities appear to have the

> > > best

> > > > > ongoing

> > > > > > > care. Likewise be certain to make out wills and the like.

> > > > > > >

> > > > > > > Then continue to enjoy your life. Don't focus on the MSA.

> > > Why

> > > > > do I say

> > > > > > > this? Well, you yourself mention the symptoms are

> progressing

> > > > > slowly.

> > > > > > > Also you mention:

> > > > > > >

> > > > > > > I had difficulty in walking fast, in buttoning

> > > > > > > clothes, and in tying my shoes. Occasionally,

> > > > > > > I had slurred speech, hunted for words, and spoke

> > > > > > > words that did not express my thoughts well. My

> > > > > > > reasoning ability remained as sharp as ever. In

> > > > > > > addition, I occasionally realized that I had not

> > > > > > > taken a breath in a while, and I would gasp for air.

> > > > > > >

> > > > > > > It appears you have MSA-C, that is symptoms that start as

> > > > > Sporadic OPCA.

> > > > > > > Or MSA-C (since it progressed into autonomic problems).

> You

> > > may

> > > > > want to

> > > > > > > view the following pages:

> > > > > > >

> > > > > > > http://emedicine.com/neuro/topic671.htm Multiple

> Systems

> > > > > Atrophy

> > > > > > > http://emedicine.com/neuro/topic282.htm OPCA (MSA-C)

> > > > > > > http://emedicine.com/neuro/topic354.htm SND (MSA-P)

> > > > > > >

> > > > > > > Sporadic OPCA is the second item. But you will note that

> > > based

> > > > > on your

> > > > > > > symptoms, it appears to have shifted quite clearly into

> MSA.

> > > > > Since it

> > > > > > > started with problems with the cerebellum, it is

> considered

> > > to be

> > > > > MSA-C.

> > > > > > > IF you actively control symptoms, then you stand a good

> > > chance of

> > > > > a

> > > > > > > longer life expectancy.

> > > > > > >

> > > > > > > One word of warning. With MSA-C, you need to be very

> careful

> > > > > about

> > > > > > > sleep and swallowing problems. The first leads to very

> poor

> > > > > sleep,

> > > > > > > extreme fatigue, high blood pressure, and in extreme

> cases,

> > > death

> > > > > during

> > > > > > > sleep. The second often leads to aspiration pneumonia,

> which

> > > is

> > > > > the

> > > > > > > leading cause of death for someone with MSA-C.

> > > > > > >

> > > > > > > To test problems with sleep, you might want to visit the

> > > > > following page:

> > > > > > >

> > > > > > > http://www.sleepnet.com/sleeptest.html

> > > > > > >

> > > > > > > If you find yourself swallowing food incorrectly, please

> go

> > > have a

> > > > > > > swallowing test done. There are specific therapies to

> help

> > > > > improve

> > > > > > > swallowing problems. In extreme cases a feeding tube can

> be

> > > > > inserted

> > > > > > > directly into the stomach. This greatly reduces the

> chance of

> > > > > > > aspiration pneumonia. But that is most likely a LONG way

> done

> > > > > the line.

> > > > > > >

> > > > > > > And you will get an idea that it is time, when you find

> you

> > > are

> > > > > less and

> > > > > > > less able to move around your own home. Be certain to

> discuss

> > > > > this with

> > > > > > > your doctor / neurologist. They should be able to have

> you

> > > work

> > > > > with a

> > > > > > > physical therapist to determine when it is time to move.

> > > > > > >

> > > > > > > Anyway, just some thoughts...

> > > > > > >

> > > > > > >

> > > > > > > Regards,

> > > > > > > =jbf=

> > > > > > >

> > > > > > > B. Fisher

> > > > > > >

> > > > > > >

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

> > > > > > > unsubscribe by sending a blank email to

> > > > > > >

> > > > > > > shydrager-unsubscribe@y...

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

Byron,

Are you in County, MD or is the farm???

Take care, Bill

=============================

Byron Hall wrote:

> Dear Jan, Belinda, and anyone else interested:

>

> You can see much of the recent history about the farm project by

> visiting the Foundation's website: www.blandair.org

>

> Jan, I just looked at your e-mail ID, and I see that you take the name

> of a top-of-the-line piano. Do you play the piano?

>

> Byron

[Guest guest]

Bill:

The farm is in County, MD -- I'm in Dayton, Ohio. That's why I

need to drive 500 miles for meetings of the Board of Directors.

Byron

Re: Byron...New Diagnosis

> Byron,

>

> Are you in County, MD or is the farm???

>

> Take care, Bill

>

> =============================

>

> Byron Hall wrote:

>

> > Dear Jan, Belinda, and anyone else interested:

> >

> > You can see much of the recent history about the farm project by

> > visiting the Foundation's website: www.blandair.org

> >

> > Jan, I just looked at your e-mail ID, and I see that you take the

name

> > of a top-of-the-line piano. Do you play the piano?

> >

> > Byron

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Byron,

Be careful with driving as that skill can disappear VERY quickly. We have a

couple of members in County and I visit Baltimore County every week.

Let us know if you are going to be in the area as we have a very active support

group with over 30 members. We may be able to set up a meeting around your

visit. Sunday afternoons are our best time to hold meetings.

Take care, Bill Werre

----------------------------------------

Byron Hall wrote:

> Bill:

>

> The farm is in County, MD -- I'm in Dayton, Ohio. That's why I

> need to drive 500 miles for meetings of the Board of Directors.

>

> Byron

[Guest guest]

Bill,

Thanks for the warning about driving. So far, I just have to be

careful about not falling asleep as an effect of medication. I've had two

experiences in the last few days that have tested my alertness and reflexes

when in both instances another driver cut me off and I had to hit the brakes

essentially instantaneously. As long as I can respond as well, I don't

think I'll have problems with driving. I'll keep monitoring my responses,

however.

Byron

Re: Byron...New Diagnosis

> Byron,

>

> Be careful with driving as that skill can disappear VERY quickly. We have

a

> couple of members in County and I visit Baltimore County every

week.

> Let us know if you are going to be in the area as we have a very active

support

> group with over 30 members. We may be able to set up a meeting around

your

> visit. Sunday afternoons are our best time to hold meetings.

>

> Take care, Bill Werre

>

> ----------------------------------------

>

> Byron Hall wrote:

>

> > Bill:

> >

> > The farm is in County, MD -- I'm in Dayton, Ohio. That's why

I

> > need to drive 500 miles for meetings of the Board of Directors.

> >

> > Byron

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

,

How are you going to know the reflexes are not there?

By possibly killing yourself or another driver in a crash. It's not worth

the risk!

God bless,

Judy & Jim Stark

Re: Byron...New Diagnosis

>

>

> > Byron,

> >

> > Be careful with driving as that skill can disappear VERY quickly. We

have

> a

> > couple of members in County and I visit Baltimore County every

> week.

> > Let us know if you are going to be in the area as we have a very active

> support

> > group with over 30 members. We may be able to set up a meeting around

> your

> > visit. Sunday afternoons are our best time to hold meetings.

> >

> > Take care, Bill Werre

> >

> > ----------------------------------------

> >

> > Byron Hall wrote:

> >

> > > Bill:

> > >

> > > The farm is in County, MD -- I'm in Dayton, Ohio. That's

why

> I

> > > need to drive 500 miles for meetings of the Board of Directors.

> > >

> > > Byron

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Bryon,

One of the hardest things I had to do was to give up driving. It sounds like that you're about at that point. I hate the thought of needing someone else to get me to where I want to go. But, you must remember your saafety as well as other drivers. You need to have someone you trust ride with you and evaluate your reaction times and reflexes.

This is HARD to give up your independence by not being able to drive. I hate it. I can no longer go fishing when I want or evn to the store.

Just my two cents

Dr. Ray

-- Re: Byron...New Diagnosis

Bill,Thanks for the warning about driving. So far, I just have to becareful about not falling asleep as an effect of medication. I've had twoexperiences in the last few days that have tested my alertness and reflexeswhen in both instances another driver cut me off and I had to hit the brakesessentially instantaneously. As long as I can respond as well, I don'tthink I'll have problems with driving. I'll keep monitoring my responses,however.Byron Re: Byron...New Diagnosis> Byron,>> Be careful with driving as that skill can disappear VERY quickly. We havea> couple of members in County and I visit Baltimore County everyweek.> Let us know if you are going to be in the area as we have a very activesupport> group with over 30 members. We may be able to set up a meeting aroundyour> visit. Sunday afternoons are our best time to hold meetings.>> Take care, Bill Werre>> ---------------------------------------->> Byron Hall wrote:>> > Bill:> >> > The farm is in County, MD -- I'm in Dayton, Ohio. That's whyI> > need to drive 500 miles for meetings of the Board of Directors.> >> > Byron>>> If you do not wish to belong to shydrager, you may> unsubscribe by sending a blank email to>> shydrager-unsubscribe >>>>>

[Guest guest]

Dr. Ray,

My mother, who lives with me, just lost her drivers license because she cannot pass the vision test. She depends on me to get to the grocery store, doctors appointments, gym, and golf course (she still plays at age 84). When I have to give up driving, we'll really be in trouble. I'll know when that time comes, but it has not come yet.

Byron

Re: Byron...New Diagnosis> Byron,>> Be careful with driving as that skill can disappear VERY quickly. We havea> couple of members in County and I visit Baltimore County everyweek.> Let us know if you are going to be in the area as we have a very activesupport> group with over 30 members. We may be able to set up a meeting aroundyour> visit. Sunday afternoons are our best time to hold meetings.>> Take care, Bill Werre>> ---------------------------------------->> Byron Hall wrote:>> > Bill:> >> > The farm is in County, MD -- I'm in Dayton, Ohio. That's whyI> > need to drive 500 miles for meetings of the Board of Directors.> >> > Byron>>> If you do not wish to belong to shydrager, you may> unsubscribe by sending a blank email to>> shydrager-unsubscribe >>>>>

[Guest guest]

Byron,

My husband drove for a while after dx. until I started to notice that

he had trouble keeping the car " between the lines " . His balanced

continued to get worse and it became very obvious to him (after I

kept pointing out that we were swerving around) that he needed to

stop. Drive with others occasionally and have them point out any

problems they perceive, you may not notice as soon as some one else

does. Until then, happy trails to you and your mom.

Jan

> >

> > > Bill:

> > >

> > > The farm is in County, MD -- I'm in Dayton,

Ohio. That's why

> I

> > > need to drive 500 miles for meetings of the Board of

Directors.

> > >

> > > Byron

> >

> >

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

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe@y...

> >

> >

> >

> >

> >

[Guest guest]

Jan:

Thanks for the info and advice. Although Mom is not permitted to

drive, she's a good observer and critic. If I do not see that it's becoming

dangerous for me to drive, she certainly will.

I imagine I'll see the need to stop driving before others -- I pretty

sensitive to what my body tells me. For example, no one close to me noticed

the symptoms I perceived 3 years ago. I voluntarily sought a medical

diagnosis when my body told me that something was radically wrong.

Byron

Re: Byron...New Diagnosis

> Byron,

> My husband drove for a while after dx. until I started to notice that

> he had trouble keeping the car " between the lines " . His balanced

> continued to get worse and it became very obvious to him (after I

> kept pointing out that we were swerving around) that he needed to

> stop. Drive with others occasionally and have them point out any

> problems they perceive, you may not notice as soon as some one else

> does. Until then, happy trails to you and your mom.

> Jan

>

>

>

> > >

> > > > Bill:

> > > >

> > > > The farm is in County, MD -- I'm in Dayton,

> Ohio. That's why

> > I

> > > > need to drive 500 miles for meetings of the Board of

> Directors.

> > > >

> > > > Byron

> > >

> > >

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

> > > unsubscribe by sending a blank email to

> > >

> > > shydrager-unsubscribe@y...

> > >

> > >

> > >

> > >

> > >