a tribute

[Guest guest]

Hi all,

I want to share this experience with everyone, for it is a touching story of

remarkable people, what a difference we make in all our various efforts and

how important we all are.

In December of 2003, a man with PLS named Gerry Leary and his wife Barbara

attended a Lunch Connection that I organized in MA. There were a couple of

dozen of us funny walkers there, with either HSP or PLS and lots of spouses.

Gerry was still working as a financial advisor and had recently begun to use

a cane. He said he started to have walking problems many years ago. He

was a charming man with a great smile and vivacious personality. His wife was

also charming. Everyone liked them immediately.

Since then, they have attended the various events we've had in MA - formal

Connections with a speaker, informal Lunch Connections that served as

support group meetings, social Dinner Outings, Holiday gathering, group outing

to a

Medical Supply Store, formal Conferences, two TeamWalks and a celebration

post-TeamWalk dinner. They also served on the National Conference/TeamWalk

Committee, attending meetings and helping us plan and execute that major event.

They got their family involved and raised a lot of money. Additionally,

Gerry made efforts to get a $5,000 corporate donation for the Research Fund and

thanks to that inroad, we got the same gift last year.

All the while, Gerry's health began to deteriorate in a major way (not the

typical path for PLS or HSP) and he had to quit work. They had to renovate

their home and put in ramps, etc. to meet his changing needs. He went from a

cane to a walker and then a w/c. His upper body mobility became more

compromised and his speech became more and more difficult and he began to have

a lot

of fasciculations in his shoulders.

When our group met for a social Dinner outing just over a year ago, two

years after I had met him, you could really see how his condition had

drastically

changed. Barbara was retiring from work a bit early, so she could have

time with him. Also, despite the house renovations, they were in the process

of

buying (building) a condo in a new over-55 development that has the master

bedroom on the main floor.

Despite everything, Gerry maintained the same twinkle in his eye and smile

through the dinner. He listened well, contributed to converstation and

offered his dry wit.

Barbara talked about the trip she was planning for them. She was going to

take Gerry to Key West for 6 weeks to get out of our horrid winter and enjoy

the warmth and rest in FL.

She had rented a lovely condo and its family room had a sliding glass door

that opened to a patio and view of the ocean. It faced west so they had

wonderful sunsets every evening to view.

There was an extraordinary amount of planning and organizing Barbara had to

do for this trip because of Gerry's serious needs. She had to arrange to

rent a lift chair for him and rent or buy lots of special daily living aids,

mobility devices and bathroom items. She set up medical services for him so

specialists could come to the condo. They packed the van full of all types of

equipment for Gerry and drove down.

We visited them for dinner at the condo in Key West one night while we were

in FL last February. I could see that every day, Barbara had to transfer

Gerry from his bed to a roller seat to take him in the bathroom to get him ready

for the day. From there he went into the w/c and from the w/c to the lift

chair in the family room each day. Every time he needed to use the bathroom,

she transfered him from the lift chair to the w/c to take him in, which of

course happened once while we were there. He could still speak a bit, but it

was belabored and we had to listen well. Despite it all, he still had the

twinkle in his eye and smile and we had a lovely time there.

It was very clear that these were not easy days for them, but that they were

both doing everything they could to make them as good and comfortable as

they could.

Last spring they moved into their new home, which was adjusted in

configuration to allow him easy access in his w/c and make the bathroom

accessible.

Gerry's health continued to detriorate and he soon became so impaired that he

pretty much had to stay in bed. Health services were set up to come a bit

each day to give some help. However, Barbara's job was still more than 24-7

and it was soon clear that there wasn't a lot of time left and she just

couldn't manage the challenge with just a few hours of help each day. The

hard

decision to move him into a Hospice came about 2 months ago.

We got the word out to our local group and several of us went to visit him

at various times over the past 6 weeks. We also spoke to Barbara on the

phone and via email.

Gerry passed away last Tuesday. He was 62. Barbara sent us all an email

to let us know, addressed to " Wonderful Support Group " . Many of us attended

the Calling Hours on Friday. On one of the photo boards were two photos taken

from our TeamWalks. One was Barbara with her arm around Gerry in his w/c

and the other was a group of TeamWalk participants with them.

We and one other couple attended the funeral mass yesterday morning. It was

beautiful. Afterwards, at the lunch, many people spoke about Gerry.

Although I had only known him the past 3 years as his health deteriorated, I

could

see what a remarkable man he had been. It was a delight to hear how his fun

spirit, twinkle, and smile had been such a part of so many people's lives.

And what a go-getter he was.

I was so moved that I elected to go up to the podium and share as well. I

spoke about Gerry's involvement in our group and how I could see what a

remarkable man he was and what a champion he was with his illness and also,

what a

remarkable wife he had.

I said that I never would have met Gerry if I hadn't had HSP and he hadn't

had PLS. I don't wish these conditions on anyone and hate that I have it,

but there has been a silver lining....

I have met remarkable people like Gerry and Barbara whom I never would have

ever met. I have had the opportunity to get involved and make a difference.

I believe there will be a cure someday, and in the meantime, we all do

amazing things to help one another.

I have found out, acutely, how wonderful people are and how important we all

are to one another.

I am now planning our Spring Connection for May 21, with the help of our

local group members. It will have an extra special aura to it.

best,

Kathi

[Guest guest]

Kathi...thank you for sharing that very touching and honest tribute.

In spite of the statistics...I know that some people do, in fact,

die from PLS and my neurologist confirmed that is so...though rare.

But more to the point......what a wonderful contribution he and his

wife made......he left an indelible mark....and THAT is what really

counts.

Take good care

Di......PLS..........Canada

>

> Hi all,

>

> I want to share this experience with everyone, for it is a

touching story of

> remarkable people, what a difference we make in all our various

efforts and

> how important we all are.

>

> In December of 2003, a man with PLS named Gerry Leary and his wife

Barbara

> attended a Lunch Connection that I organized in MA. There were a

couple of

> dozen of us funny walkers there, with either HSP or PLS and lots

of spouses.

>

> Gerry was still working as a financial advisor and had recently

begun to use

> a cane. He said he started to have walking problems many years

ago. He

> was a charming man with a great smile and vivacious personality.

His wife was

> also charming. Everyone liked them immediately.

>

> Since then, they have attended the various events we've had in

MA - formal

> Connections with a speaker, informal Lunch Connections that

served as

> support group meetings, social Dinner Outings, Holiday gathering,

group outing to a

> Medical Supply Store, formal Conferences, two TeamWalks and a

celebration

> post-TeamWalk dinner. They also served on the National

Conference/TeamWalk

> Committee, attending meetings and helping us plan and execute

that major event.

> They got their family involved and raised a lot of money.

Additionally,

> Gerry made efforts to get a $5,000 corporate donation for the

Research Fund and

> thanks to that inroad, we got the same gift last year.

>

> All the while, Gerry's health began to deteriorate in a major way

(not the

> typical path for PLS or HSP) and he had to quit work. They had

to renovate

> their home and put in ramps, etc. to meet his changing needs. He

went from a

> cane to a walker and then a w/c. His upper body mobility became

more

> compromised and his speech became more and more difficult and he

began to have a lot

> of fasciculations in his shoulders.

>

> When our group met for a social Dinner outing just over a year

ago, two

> years after I had met him, you could really see how his condition

had drastically

> changed. Barbara was retiring from work a bit early, so she

could have

> time with him. Also, despite the house renovations, they were in

the process of

> buying (building) a condo in a new over-55 development that has

the master

> bedroom on the main floor.

>

> Despite everything, Gerry maintained the same twinkle in his eye

and smile

> through the dinner. He listened well, contributed to

converstation and

> offered his dry wit.

>

> Barbara talked about the trip she was planning for them. She was

going to

> take Gerry to Key West for 6 weeks to get out of our horrid

winter and enjoy

> the warmth and rest in FL.

>

> She had rented a lovely condo and its family room had a sliding

glass door

> that opened to a patio and view of the ocean. It faced west so

they had

> wonderful sunsets every evening to view.

>

> There was an extraordinary amount of planning and organizing

Barbara had to

> do for this trip because of Gerry's serious needs. She had to

arrange to

> rent a lift chair for him and rent or buy lots of special daily

living aids,

> mobility devices and bathroom items. She set up medical services

for him so

> specialists could come to the condo. They packed the van full of

all types of

> equipment for Gerry and drove down.

>

> We visited them for dinner at the condo in Key West one night

while we were

> in FL last February. I could see that every day, Barbara had to

transfer

> Gerry from his bed to a roller seat to take him in the bathroom to

get him ready

> for the day. From there he went into the w/c and from the w/c to

the lift

> chair in the family room each day. Every time he needed to use

the bathroom,

> she transfered him from the lift chair to the w/c to take him in,

which of

> course happened once while we were there. He could still speak a

bit, but it

> was belabored and we had to listen well. Despite it all, he

still had the

> twinkle in his eye and smile and we had a lovely time there.

>

> It was very clear that these were not easy days for them, but that

they were

> both doing everything they could to make them as good and

comfortable as

> they could.

>

> Last spring they moved into their new home, which was adjusted in

> configuration to allow him easy access in his w/c and make the

bathroom accessible.

> Gerry's health continued to detriorate and he soon became so

impaired that he

> pretty much had to stay in bed. Health services were set up to

come a bit

> each day to give some help. However, Barbara's job was still

more than 24-7

> and it was soon clear that there wasn't a lot of time left and

she just

> couldn't manage the challenge with just a few hours of help each

day. The hard

> decision to move him into a Hospice came about 2 months ago.

>

> We got the word out to our local group and several of us went to

visit him

> at various times over the past 6 weeks. We also spoke to Barbara

on the

> phone and via email.

>

> Gerry passed away last Tuesday. He was 62. Barbara sent us all

an email

> to let us know, addressed to " Wonderful Support Group " . Many of

us attended

> the Calling Hours on Friday. On one of the photo boards were two

photos taken

> from our TeamWalks. One was Barbara with her arm around Gerry in

his w/c

> and the other was a group of TeamWalk participants with them.

>

> We and one other couple attended the funeral mass yesterday

morning. It was

> beautiful. Afterwards, at the lunch, many people spoke about

Gerry.

> Although I had only known him the past 3 years as his health

deteriorated, I could

> see what a remarkable man he had been. It was a delight to hear

how his fun

> spirit, twinkle, and smile had been such a part of so many

people's lives.

> And what a go-getter he was.

>

> I was so moved that I elected to go up to the podium and share as

well. I

> spoke about Gerry's involvement in our group and how I could see

what a

> remarkable man he was and what a champion he was with his illness

and also, what a

> remarkable wife he had.

>

> I said that I never would have met Gerry if I hadn't had HSP and

he hadn't

> had PLS. I don't wish these conditions on anyone and hate that

I have it,

> but there has been a silver lining....

>

> I have met remarkable people like Gerry and Barbara whom I never

would have

> ever met. I have had the opportunity to get involved and make a

difference.

> I believe there will be a cure someday, and in the meantime, we

all do

> amazing things to help one another.

>

> I have found out, acutely, how wonderful people are and how

important we all

> are to one another.

>

> I am now planning our Spring Connection for May 21, with the help

of our

> local group members. It will have an extra special aura to it.

>

> best,

> Kathi

>

>

>

[Guest guest]

Kathy,

What a beautiful tribute to Gerry (and to his loving wife). Thank you

for writing such a moving piece for one of our own. He died too young.

He will obviously be greatly missed.

Lyndal