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Re: Re: PLS web site

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Bonnie,

I was so very pleased to see a post from you. I have followed your notes for a

year and a half and have always been inspired by your perseverence and wonderful

attitude. During your " posting " absence I have thought of you and Don often. I

am sad to learn of the progression of Don's illness and the loss of your job. I

believe he is very lucky to have you and I pray that your needs are met during

this rough time.

Take care.

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

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Bonnie,

I was so very pleased to see a post from you. I have followed your notes for a

year and a half and have always been inspired by your perseverence and wonderful

attitude. During your " posting " absence I have thought of you and Don often. I

am sad to learn of the progression of Don's illness and the loss of your job. I

believe he is very lucky to have you and I pray that your needs are met during

this rough time.

Take care.

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

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Ditto!

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

Re: Re: PLS web site

Bonnie,

I was so very pleased to see a post from you. I have followed your notes for

a year and a half and have always been inspired by your perseverence and

wonderful attitude. During your " posting " absence I have thought of you and Don

often. I am sad to learn of the progression of Don's illness and the loss of

your job. I believe he is very lucky to have you and I pray that your needs are

met during this rough time.

Take care.

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Guest guest

Ditto!

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

Re: Re: PLS web site

Bonnie,

I was so very pleased to see a post from you. I have followed your notes for

a year and a half and have always been inspired by your perseverence and

wonderful attitude. During your " posting " absence I have thought of you and Don

often. I am sad to learn of the progression of Don's illness and the loss of

your job. I believe he is very lucky to have you and I pray that your needs are

met during this rough time.

Take care.

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Guest guest

Ditto!

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

Re: Re: PLS web site

Bonnie,

I was so very pleased to see a post from you. I have followed your notes for

a year and a half and have always been inspired by your perseverence and

wonderful attitude. During your " posting " absence I have thought of you and Don

often. I am sad to learn of the progression of Don's illness and the loss of

your job. I believe he is very lucky to have you and I pray that your needs are

met during this rough time.

Take care.

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  • 4 weeks later...

HI SHIRLEY,

BOY IT LOOKS LIKE I HAVE BEEN IGNORING YOUR MAIL BUT I HAVEN'T. I JUST DID

NOT HAVE THE ANSWERS FOR YOU AT THAT TIME. WE WENT TO SEE DR. FRINK LAST

FRIDAY . DON'S DX. WAS CHANGED TO ALS. HIS PROGRESSION WAS MUCH FASTER

THAN THE PLSERS WE HA MET AND WHAT HAS BEEN DESCRIBED HERE IN THIS GROUP.

THAT IS WHY I ASKED FOR A REFERRAL TO DR. FINK. DON HAS A VERY GOOD

NEUROLOGIST HERE BUT HE HAS VERY LIMITED EXPERIENCE IN THIS ARIA. HE ALSO

GAVE US A REFERRAL WHEN WE EXPLAINED ABOUT DR. FINKS BACKGROUND.

SO THEY ARE WORKING TOGETHER. THE EMG THAT DON HAD THE LAST TIME WE WERE

UP THERE SHOWS UPPER AND LOWER INVOLVEMENT. HIS REFLEXES AVER REACT IN HIS

ARMS AND FACE. AND WHEN HE COUPLED THIS TOGETHER WITH OTHER SYMPTOMS DON IS

HAVING IT GIVE A MORE COMPLETE STORY. THIS DID NOT SIRPRIZE US IT WAS WHAT

WE EXPECTED. NOW WE JUST TAKE EACH DAY AS IT COMES AND THERE ARE OTHER

DECISIONS THAT MUST BE MADE ALONG THE LINE TO DETERMINE HIS LIFE EXPECTANCY.

DON WANTS TO SEE HIS GRANDCHILDREN GROW UP AND DR. FINKS TOLD HIM THAT MAY

BE POSSIBLE. SO NOW HE MUST LOOK AT HIS LIFE CHOICES TO MAKE THAT WISH COME

TRUE.

BY THE WAY - FOR EVERYONE

WE HAPPENED TO BE UP THERE FOR THE PLS & HSP SUPPORT GROUP. I TOLD THEM

ABOUT YOU ALL AND TOLD THEM TO COME MEET YOU AT PLS FRIENDS. THEY WERE

WONDERFUL PEOPLE

SO WHEN THEY COME GIVE THEM A BIG WELCOME. THEY ARE ALSO PLANNING MONEY

MAKING PROJECTS AND WANT A WAY TO EDUCATE THEIR DRS. SOUND LIKE WHAT WE

ALL ARE DOING.

THEY ARE PLANNING A GET TOGETHER IN MICHIGAN PROBABLY THE LATTER PART OF

APRIL NEXT

YEAR.

HOPE YOU ALL HAVE A GOOD DAY.

LOVE,

BONNIE & DON OH

Re: Re: PLS web site

> hello Bonnie just read your posting and I am wondering why you think ALS

now

> and not PLS? What is going on to make you think this? My husband also is

not

> doing well and I am wondering if this may not be the problem with him.

Where

> is your husband at with his physical ability? Mine is in a wheelchair full

> time speech is all but gone lots and lots of bladder problems. He is

always

> chocking when eating. Has lost weight in the last month. Just wonder if

any

> of this is going on with your husband and that is why you are thinking ALS

> rather then PLS? The last time I spoke with Dr. Fink I asked him how to

tell

> the differance with symtoms and his response was that it really did not

> matter ALS or PLS all depends on how fast it progresses. Will any answers

you

> can give me will be of great help thanks and hope all goes well for you

with

> Dr Fink. Shirley (michigan)

>

>

>

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hi AGAIN SHIRLEY,

I HAVE BEEN READING YOUR MAIL AND AM SO SORRY FOR ALL THE PROBLEMS YOU ARE

HAVING. I WANT TO SEND OUR BEST WISHES ALONG TO YOU AND YOUR HUSBAND.

I WOULD STILL LIKE TO GET TOGETHER SOMETIME FOR A NICE VISIT. MAYBE WE CAN

STILL GET

PATTI AND I THINK MIKE IS UP THAT WAY AND ANY ONE ELSE THAT MIGHT BE

INTERESTED.

I THINK WE NEED ALL THE LOVE AND SUPPORT THAT WE CAN. DON MAY NOW BE AN ALS

ER BUT WE ARE NOT ABOUT TO GIVE UP THIS SITE. WE HAVE BELONGED TO LIVING

WITH ALS SUPPORT GROUP FOR A WHILE AND THEY ARE ALSO WONDERFUL PEOPLE AS

WELL. BUT WE SEEM TO HAVE MORE FUN!!!!!!!!!!! :+) NOT THAT I'M PUTTING

THEM DOWN. THEY HAVE A LOT OF HEAVY ISSUES TO HANDLE. LOVE TO ALL

BONNIE & DON OH

Re: Re: PLS web site

>

>

> > Bonnie...I am also the caregiver here...my husband was diagnosed with

PLS

> on

> > January 3, 2002 at the U of M...Dr. Fink is also our doctor...we don't

see

> > him till Sept.13...hope all goes well for you....Patti in Michigan

> >

> >

> >

> >

> >

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Hello Bonnie I am so sorry to hear your news. We just saw Dr. Fink on the 6th

of this month. He also said that he felt my husband was progressing faster

then some. How can I tell if it is ALS or PLS ????????? I guess just have to

have the test done. Don't know how you can tell. Don't know what else could

be affected. Speech is all but gone. Has to self cath. to use the bathroom.

Bladder not working at all anymore. chokes on everything he eats. Dr. Fink

took his hammer to his chin and that shows the increase in reflex. I just

don't know what to think. I hope all goes will with you and Don keep us

informed. Good Luck and God Bless you both. Shirley (Michigan)

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So sorry to hear that Don's diagnosis has worsened to ALS. Wish him

well for me and continue to help him for the big fight. My best wishes

go out to you both.

Levy

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Bonnie & Don, Sorry to hear about Don's new dx with ALS. You both

are in my prayer list. Tell Don not to give up do those things he wants to

do.................Flora Brand/St Pete FL.

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I'm sorry to hear that Don dx has changed to ALS. Now you both have a new

stress to deal with and decisions to make. I'm sure you both will make them

wisely.

((((BONNIE & DON))))

gloria

Re: Re: PLS web site

> >

> >

> > > Bonnie...I am also the caregiver here...my husband was diagnosed with

> PLS

> > on

> > > January 3, 2002 at the U of M...Dr. Fink is also our doctor...we don't

> see

> > > him till Sept.13...hope all goes well for you....Patti in Michigan

> > >

> > >

> > >

> > >

> > >

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Bonnie,

I read with sorrow that Don's diagnosis had changed, but was gladdened when

Dr. Fink said he may be able to see his grandchildren grow up. Now you

really have to take one day at a time. Boy! When you and Don start having

problems, you go all out! Wishing the best to both of you and hoping that

things change rapidly and that good things come your way.

Mike Gray

At 06:44 PM 8/11/02 -0400, you wrote:

>hi AGAIN SHIRLEY,

>

>I HAVE BEEN READING YOUR MAIL AND AM SO SORRY FOR ALL THE PROBLEMS YOU ARE

>HAVING. I WANT TO SEND OUR BEST WISHES ALONG TO YOU AND YOUR HUSBAND.

>I WOULD STILL LIKE TO GET TOGETHER SOMETIME FOR A NICE VISIT. MAYBE WE CAN

>STILL GET

>PATTI AND I THINK MIKE IS UP THAT WAY AND ANY ONE ELSE THAT MIGHT BE

>INTERESTED.

>I THINK WE NEED ALL THE LOVE AND SUPPORT THAT WE CAN. DON MAY NOW BE AN ALS

>ER BUT WE ARE NOT ABOUT TO GIVE UP THIS SITE. WE HAVE BELONGED TO LIVING

>WITH ALS SUPPORT GROUP FOR A WHILE AND THEY ARE ALSO WONDERFUL PEOPLE AS

>WELL. BUT WE SEEM TO HAVE MORE FUN!!!!!!!!!!! :+) NOT THAT I'M PUTTING

>THEM DOWN. THEY HAVE A LOT OF HEAVY ISSUES TO HANDLE. LOVE TO ALL

>

>BONNIE & DON OH

>

>

> Re: Re: PLS web site

> >

> >

> > > Bonnie...I am also the caregiver here...my husband was diagnosed with

>PLS

> > on

> > > January 3, 2002 at the U of M...Dr. Fink is also our doctor...we don't

>see

> > > him till Sept.13...hope all goes well for you....Patti in Michigan

> > >

> > >

> > >

> > >

> > >

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Bonnie,

I am so sorry to hear about Don. I hope he gets to do all the things he

wants to do. I am sure the grand children will keep him busy.

Jane Anne King

Re: Re: PLS web site

Bonnie & Don, Sorry to hear about Don's new dx with ALS. You both

are in my prayer list. Tell Don not to give up do those things he wants to

do.................Flora Brand/St Pete FL.

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Bonnie,

I am so sorry to hear about Don. I hope he gets to do all the things he

wants to do. I am sure the grand children will keep him busy.

Jane Anne King

Re: Re: PLS web site

Bonnie & Don, Sorry to hear about Don's new dx with ALS. You both

are in my prayer list. Tell Don not to give up do those things he wants to

do.................Flora Brand/St Pete FL.

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