Re: Pet Scans & jbf's progress >JBF

[Guest guest]

Hello :

I have to agree with you, for some the Pet Scan would help, but for other's

it wouldn't. When Fred was first DX with MSA we asked his Neurologist about a

Pet Scan, he told us it wouldn't change anything , he was sure it was MSA. At

the time there were few places that had the Pet Scan. So we went with what

the Dr. said. I'm sure that the Neurologist is right with the DX he made.

The Pet Scan would of only been a shorter road to something we know now, but

the road is still the same. No changes along the way.

I'm glad you are a stubborn person and refuse to give into all of this.

Get the w/c and go wherever you can. Just watch for the speed bumps your body

is telling you and rest when you need to. Sit down and have that beer then.

Me! I've never been big on beer , taste like soap to me. I think that's

because I got sick on it when I was about 18 months old ( months ) ) . My

folks went to a friends house and all of them were drinking beer. They were

so busy talking that no one saw me drinking alittle from each glass. Made me

sick and now if I even try just a little , I can taste soap. Guess that will

show me. I did like to have one of those frozen Ice breaker once in awhile,

but now the one's I have frozen I use for ice pack's for Fred. They can shape

to what you want to put it on and you can refreeze them over & over again.

Don't think this what they had in mind when they made them, but hey it works.

Always good to see you posting .

Takecare

Vera

*************

Greetings Deborah & MSAers!

As the saying goes, I think we are in violent agreement. I might not have

said how I feel about this as clearly as you. But yes, if your doctor feels

the PET scan is warranted, then by all means pursue it. And yes, emotional

well being is part of that decision. But it should always be an informed

decision, based on cost versus possible benefit. For some the cost is

prohibitive. For others the time and effort part of the cost is

prohibitive. And for some the benefits just do not justify neither the

cost, nor the time and effort.

Again, my own experience shows me additional testing would not benefit me.

It is very clear for me that a cerebellar problem exists. Some symptoms may

indicate autonomic problems. But they are not 'clear enough' nor severe

enough to warrant further testing of this - at this time. In the future,

additional testing may be needed.

In the meantime, I will probably need to focus on getting a wheelchair.

Going into public situations GREATLY increases my loss of balance. I would

rather walk, and do in my neighborhood. Unfortunately I become so confused

so quickly, and it is so severe, even walking becomes very, very difficult.

In most situations, I will not require the wheelchair. Yet, without it, I

will become housebound. As it is, I restrict my public adventures due to

the unpleasantness of the feeling for me.

I wish I could describe it better...

It almost feels as if I had too much to drink. But alcohol impacts thinking

if it gets to that point. Rather, imagine seeing through the eyes of a

drunk. Imagine feeling the sensations of terrible equilibrium problems a

drunk must feel. Imagine how that loss of equilibrium impacts the drunks

ability to retain food. Imagine feeling the sense of confusion with all the

activity around the drunk. Imagine how this overload impacts the drunks'

ability to talk and use hands and arms. Imagine the trouble a drunk has

sorting out all the sounds and activity. Imagine how this same situation

even makes the act of walking difficult - not due to weakness, instead due

to complete loss of coordination.

Now imagine you are trapped in that body, fully aware how the situation

impacts you, but unable to escape. That is how I felt when I went to the NC

State Fair last week. Overwhelmed. I slept the entire next day.

Exhausted.

By the way, if you are wondering ... Yes, I do drink. One beer every two to

four weeks.

So, the question I face: Should I restrict my public adventures? Or should

I do something to control the confusion? I choose the later. It will not

eliminate the confusion. But avoiding the need to walk at the same time

should make it easier for me. That is my struggle. On one hand I know it

will help. On the other, I am a very stubborn person and refuse to give

into this.

I realize this is a simple situation in comparison to what others face. I

have helped others through similar decisions. Even so, it is both different

and harder when I face the situation. In the end, I will almost certainly

make my decision based on the impact it will have on my wife and family.

And so it goes...

Regards,

=jbf=

[Guest guest]

Hello :

I have to agree with you, for some the Pet Scan would help, but for other's

it wouldn't. When Fred was first DX with MSA we asked his Neurologist about a

Pet Scan, he told us it wouldn't change anything , he was sure it was MSA. At

the time there were few places that had the Pet Scan. So we went with what

the Dr. said. I'm sure that the Neurologist is right with the DX he made.

The Pet Scan would of only been a shorter road to something we know now, but

the road is still the same. No changes along the way.

I'm glad you are a stubborn person and refuse to give into all of this.

Get the w/c and go wherever you can. Just watch for the speed bumps your body

is telling you and rest when you need to. Sit down and have that beer then.

Me! I've never been big on beer , taste like soap to me. I think that's

because I got sick on it when I was about 18 months old ( months ) ) . My

folks went to a friends house and all of them were drinking beer. They were

so busy talking that no one saw me drinking alittle from each glass. Made me

sick and now if I even try just a little , I can taste soap. Guess that will

show me. I did like to have one of those frozen Ice breaker once in awhile,

but now the one's I have frozen I use for ice pack's for Fred. They can shape

to what you want to put it on and you can refreeze them over & over again.

Don't think this what they had in mind when they made them, but hey it works.

Always good to see you posting .

Takecare

Vera

*************

Greetings Deborah & MSAers!

As the saying goes, I think we are in violent agreement. I might not have

said how I feel about this as clearly as you. But yes, if your doctor feels

the PET scan is warranted, then by all means pursue it. And yes, emotional

well being is part of that decision. But it should always be an informed

decision, based on cost versus possible benefit. For some the cost is

prohibitive. For others the time and effort part of the cost is

prohibitive. And for some the benefits just do not justify neither the

cost, nor the time and effort.

Again, my own experience shows me additional testing would not benefit me.

It is very clear for me that a cerebellar problem exists. Some symptoms may

indicate autonomic problems. But they are not 'clear enough' nor severe

enough to warrant further testing of this - at this time. In the future,

additional testing may be needed.

In the meantime, I will probably need to focus on getting a wheelchair.

Going into public situations GREATLY increases my loss of balance. I would

rather walk, and do in my neighborhood. Unfortunately I become so confused

so quickly, and it is so severe, even walking becomes very, very difficult.

In most situations, I will not require the wheelchair. Yet, without it, I

will become housebound. As it is, I restrict my public adventures due to

the unpleasantness of the feeling for me.

I wish I could describe it better...

It almost feels as if I had too much to drink. But alcohol impacts thinking

if it gets to that point. Rather, imagine seeing through the eyes of a

drunk. Imagine feeling the sensations of terrible equilibrium problems a

drunk must feel. Imagine how that loss of equilibrium impacts the drunks

ability to retain food. Imagine feeling the sense of confusion with all the

activity around the drunk. Imagine how this overload impacts the drunks'

ability to talk and use hands and arms. Imagine the trouble a drunk has

sorting out all the sounds and activity. Imagine how this same situation

even makes the act of walking difficult - not due to weakness, instead due

to complete loss of coordination.

Now imagine you are trapped in that body, fully aware how the situation

impacts you, but unable to escape. That is how I felt when I went to the NC

State Fair last week. Overwhelmed. I slept the entire next day.

Exhausted.

By the way, if you are wondering ... Yes, I do drink. One beer every two to

four weeks.

So, the question I face: Should I restrict my public adventures? Or should

I do something to control the confusion? I choose the later. It will not

eliminate the confusion. But avoiding the need to walk at the same time

should make it easier for me. That is my struggle. On one hand I know it

will help. On the other, I am a very stubborn person and refuse to give

into this.

I realize this is a simple situation in comparison to what others face. I

have helped others through similar decisions. Even so, it is both different

and harder when I face the situation. In the end, I will almost certainly

make my decision based on the impact it will have on my wife and family.

And so it goes...

Regards,

=jbf=