One more time.Letter to AAS

[Guest guest]

Don, I will write a note for you to carry along.

Doing it will not be an easy task. But nothing worthwhile is easy. May

God bless you on your trip.

Dr. Felicia Axelrod. and Associates.

Don Summers has asked for some letters of commendation for you. I will

let him carry along my thoughts.

As I see what has been done and what has to be done in the future, my

heart aches because there are so many who will die in misery before a

cure comes for MSA/SDS. Research is a much needed task, I appreciate

those who have taken an interest in this awful illness. Along with

several others, this one is such a life taker. One little bit at a time.

Then all at once when you least expect it, the loved one is gone and you

wonder what might have been done differently. Then you wake up to the

fact that nothing could have been done differently.

All of the care givers I have learned to love and respect on this list,

wish there was a way out. But so far there isn't. I wish you well in

trying to get the funds you need to explore all of the possibilities.

When my husband, Ralph, was first diagnosed, Don Summers was one of the

first to call me and let me know we were not alone. That was in 1995

after so many tests and heart aches we were about to the end of our

rope.

Dr. Dewey at SWMC in Dallas was our helper and advisor as we all

tried to contend with what he told us was terminal with no cure and no

way out. He would not let us give up tho. He said use whatever made life

better and let him know how it worked. He prescribed medication that he

told us would work for a while but in time it would not make any

difference whether Ralph used it or not. Half of the battle was

believing it would help.

Our family physicians , Brock and Q. Mark

worked together as a team to make what days we had on the up side good.

The down times, they saw as a way to watch and try to do what was best.

They could not tell us why the illness worked as it did. Nor from

whence it came. No way to know when it would run it's course. They could

only tell us that in time everything would begin to close down and

pneumonia or a heart attack would take him.

They were so right in the diagnosis. The autopsy proved the diagnosis.

We had falls, we had wrecks, we had surgeries, we had one blind eye. We

had dementia, hallucinations, bowel impaction, impotence,

and great anger along with confusion. We had a PEG and a Garshon feeding

tube. All of those things that were foreign to a very well organized and

gentle man.

One truly amazing thing that happened when Ralph had surgeries was

this. The anesthesia wearing off caused him to be able to speak plainly

and loudly as tho he was not ill at all. He could sing every word along

with his Gaither music videos. But when it wore off he was like a new

born babe. Completely helpless. A friend of mine who is a physical

therapist asked me one day if there was a way to keep some of the pain

killer in him so we could see what was happening.

In all of this Ralph never gave up but he was adamant

about not using embryos to help him.

As so many others have told you, I saw my loving husband turn into

someone I hardly knew anymore and he saw me change into a different

person as the toll of care giving wore me down to a weary and frustrated

wife. There came a time when I was not able to give him the care he

needed at home so I had to admit him to a nursing home. It was a good

place but " not home " . He died there of pneumonia as the nurses were

taking care of him. He just slipped away into God's arms where he no

longer had to suffer the humiliation of not being able to speak, nor

see, nor able to do the common comfort things of caring for his personal

needs.

All of the care givers do things that we never dreamed we would have to

do for and to our mates.

It has been two years since Ralph was taken and it makes my heart ache

to read some of the notes from friends who are bound to go through what

we did when the time came. Many have already given up their mates or

loved ones.

We were fortunate in the fact that Ralph was not completely helpless but

he would have been if the Lord had not taken him. He told our grand kids

he was ready to go and they would ask me, " Why can't Grand dad go on and

go? He does not want to stay here. "

Yes it was a very hard ten years. Part of them just trying to figure out

what was wrong. Dr. had written on the medical records he gave to

me after Ralph died, " I do not know what this illness is. "

In closing let me tell you this. In all my time of caring for my

husband, I hoped for a cure or at least something to stop the

progression of it. But it was not to be. if you and your associates can

make it happen you will be blessed.

Thank you for caring.

Mrs.Barbara Selleck 905 Belvedere Drive Arlington, Texas 76010.

--

" Love may be priceless, but it demands a huge expenditure of time. "

--Suzanne Fields

--

" Love may be priceless, but it demands a huge expenditure of time. "

--Suzanne Fields

[Guest guest]

Don, I will write a note for you to carry along.

Doing it will not be an easy task. But nothing worthwhile is easy. May

God bless you on your trip.

Dr. Felicia Axelrod. and Associates.

Don Summers has asked for some letters of commendation for you. I will

let him carry along my thoughts.

As I see what has been done and what has to be done in the future, my

heart aches because there are so many who will die in misery before a

cure comes for MSA/SDS. Research is a much needed task, I appreciate

those who have taken an interest in this awful illness. Along with

several others, this one is such a life taker. One little bit at a time.

Then all at once when you least expect it, the loved one is gone and you

wonder what might have been done differently. Then you wake up to the

fact that nothing could have been done differently.

All of the care givers I have learned to love and respect on this list,

wish there was a way out. But so far there isn't. I wish you well in

trying to get the funds you need to explore all of the possibilities.

When my husband, Ralph, was first diagnosed, Don Summers was one of the

first to call me and let me know we were not alone. That was in 1995

after so many tests and heart aches we were about to the end of our

rope.

Dr. Dewey at SWMC in Dallas was our helper and advisor as we all

tried to contend with what he told us was terminal with no cure and no

way out. He would not let us give up tho. He said use whatever made life

better and let him know how it worked. He prescribed medication that he

told us would work for a while but in time it would not make any

difference whether Ralph used it or not. Half of the battle was

believing it would help.

Our family physicians , Brock and Q. Mark

worked together as a team to make what days we had on the up side good.

The down times, they saw as a way to watch and try to do what was best.

They could not tell us why the illness worked as it did. Nor from

whence it came. No way to know when it would run it's course. They could

only tell us that in time everything would begin to close down and

pneumonia or a heart attack would take him.

They were so right in the diagnosis. The autopsy proved the diagnosis.

We had falls, we had wrecks, we had surgeries, we had one blind eye. We

had dementia, hallucinations, bowel impaction, impotence,

and great anger along with confusion. We had a PEG and a Garshon feeding

tube. All of those things that were foreign to a very well organized and

gentle man.

One truly amazing thing that happened when Ralph had surgeries was

this. The anesthesia wearing off caused him to be able to speak plainly

and loudly as tho he was not ill at all. He could sing every word along

with his Gaither music videos. But when it wore off he was like a new

born babe. Completely helpless. A friend of mine who is a physical

therapist asked me one day if there was a way to keep some of the pain

killer in him so we could see what was happening.

In all of this Ralph never gave up but he was adamant

about not using embryos to help him.

As so many others have told you, I saw my loving husband turn into

someone I hardly knew anymore and he saw me change into a different

person as the toll of care giving wore me down to a weary and frustrated

wife. There came a time when I was not able to give him the care he

needed at home so I had to admit him to a nursing home. It was a good

place but " not home " . He died there of pneumonia as the nurses were

taking care of him. He just slipped away into God's arms where he no

longer had to suffer the humiliation of not being able to speak, nor

see, nor able to do the common comfort things of caring for his personal

needs.

All of the care givers do things that we never dreamed we would have to

do for and to our mates.

It has been two years since Ralph was taken and it makes my heart ache

to read some of the notes from friends who are bound to go through what

we did when the time came. Many have already given up their mates or

loved ones.

We were fortunate in the fact that Ralph was not completely helpless but

he would have been if the Lord had not taken him. He told our grand kids

he was ready to go and they would ask me, " Why can't Grand dad go on and

go? He does not want to stay here. "

Yes it was a very hard ten years. Part of them just trying to figure out

what was wrong. Dr. had written on the medical records he gave to

me after Ralph died, " I do not know what this illness is. "

In closing let me tell you this. In all my time of caring for my

husband, I hoped for a cure or at least something to stop the

progression of it. But it was not to be. if you and your associates can

make it happen you will be blessed.

Thank you for caring.

Mrs.Barbara Selleck 905 Belvedere Drive Arlington, Texas 76010.

--

" Love may be priceless, but it demands a huge expenditure of time. "

--Suzanne Fields

--

" Love may be priceless, but it demands a huge expenditure of time. "

--Suzanne Fields