Rob

[Guest guest]

Rather than typing out the story again with my broken fnger (long story), here

is the email I just sent to Dr. Passo. It explains where we are right now. I

know Michele can sooooo relate!

Any thoughts on this are appreciated. See below:

and Rob 19 JAS

Dr. Passo:

So sorry to bother you again. I received your letter telling us Rob needs to

transition to an adult rheumatologist. This is fine, but I am in a quandry.

I could have him go to my rheumatologist in Louisville (you may remember I have

RA), Dr. Stern. However, Rob is moving to Indianapolis in August and may

end up living there year round while he is in college.

I am wondering if we should find an adult rheumy in Indy. Of course, when I

mention this to Rob, he states " I am in remission and I don't need a

rheumatologist " . Geesh. I told him it was likely he was in a MEDICATED

remission, but that going off his meds and acting like he doesn't have AS is

silly. I'm sure you have seen many patients go through this. I explained that he

might feel well for awhile if he goes off his meds, but who knows, maybe 6

months, a year, or longer it might hit him again and he will be in need of a

rheumatologist.

I'm in sore need of advice and really can't wait to figure this out till our

appointment with you in mid August. By then, he will have moved to Indy.

Any advice you could offer would be appreciated. I know you are very busy and I

apologize for the intrusion, but I'm at a loss. This is such a difficult stage.

[Guest guest]

,

it must be a " man " thing, this denial when it comes to their health.  I don't

think any of us likes drs visits, but the guys seem less tolerant of the

inconvenience.  I know Rob has some specific career goals that will require him

to be the best Rob he can be...perhaps approaching this topic from that angle

(if you haven't already..)?? And perhaps emphasizing having a new rheumy in

place just in case (as you suggested) will appeal to his sense of reason? Would

it help to have his Dad talk to him?  Sometimes my son will hear things from his

Dad when he won't from Mom.

My thoughts and prayers are with you both.  Hope your finger heals quickly -

ouch! 

From: and Schulz <snooksmama@...>

Subject: Rob

" JRA, List " < >

Date: Monday, July 7, 2008, 5:47 PM

Rather than typing out the story again with my broken fnger (long

story), here is the email I just sent to Dr. Passo. It explains where we are

right now. I know Michele can sooooo relate!

Any thoughts on this are appreciated. See below:

and Rob 19 JAS

Dr. Passo:

So sorry to bother you again. I received your letter telling us Rob needs to

transition to an adult rheumatologist. This is fine, but I am in a quandry.

I could have him go to my rheumatologist in Louisville (you may remember I have

RA), Dr. Stern. However, Rob is moving to Indianapolis in August and may

end up living there year round while he is in college.

I am wondering if we should find an adult rheumy in Indy. Of course, when I

mention this to Rob, he states " I am in remission and I don't need a

rheumatologist " . Geesh. I told him it was likely he was in a MEDICATED

remission, but that going off his meds and acting like he doesn't have AS is

silly. I'm sure you have seen many patients go through this. I explained that he

might feel well for awhile if he goes off his meds, but who knows, maybe 6

months, a year, or longer it might hit him again and he will be in need of a

rheumatologist.

I'm in sore need of advice and really can't wait to figure this out till our

appointment with you in mid August. By then, he will have moved to Indy.

Any advice you could offer would be appreciated. I know you are very busy and I

apologize for the intrusion, but I'm at a loss. This is such a difficult stage.

[Guest guest]

Hugs, . You know I can relate. I watched take his Arthrotec

last night, but " nothing is really wrong and I don't need the MTX " . I am

sorry that Rob has made this decision. All I know to do is to keep the

gentle reminders on him, and be there (as you will be) when he can't

deny he needs to go back. He does need to be monitored while on those

meds as you know. I hope he does not decide to go off them. Perhaps a

talk with Dr. Passo at the next visit will help him to realize what he

needs to do. Maybe they can work something out where he goes only

occasionally to the rheumy. I do know exactly how you feel and all I

have done is hold on to the advice and support I've gotten here. I

always remember what said, that he will go back when he is ready.

Hearing from the adults here who had JRA since childhood helps too.

Can't say much more, just know I am with you and adding Rob to my

prayers! Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of and Schulz

Sent: Monday, July 07, 2008 7:48 PM

JRA, List

Subject: Rob

Rather than typing out the story again with my broken fnger (long

story), here is the email I just sent to Dr. Passo. It explains where we

are right now. I know Michele can sooooo relate!

Any thoughts on this are appreciated. See below:

and Rob 19 JAS

Dr. Passo:

So sorry to bother you again. I received your letter telling us Rob

needs to transition to an adult rheumatologist. This is fine, but I am

in a quandry.

I could have him go to my rheumatologist in Louisville (you may remember

I have RA), Dr. Stern. However, Rob is moving to Indianapolis in

August and may end up living there year round while he is in college.

I am wondering if we should find an adult rheumy in Indy. Of course,

when I mention this to Rob, he states " I am in remission and I don't

need a rheumatologist " . Geesh. I told him it was likely he was in a

MEDICATED remission, but that going off his meds and acting like he

doesn't have AS is silly. I'm sure you have seen many patients go

through this. I explained that he might feel well for awhile if he goes

off his meds, but who knows, maybe 6 months, a year, or longer it might

hit him again and he will be in need of a rheumatologist.

I'm in sore need of advice and really can't wait to figure this out till

our appointment with you in mid August. By then, he will have moved to

Indy.

Any advice you could offer would be appreciated. I know you are very

busy and I apologize for the intrusion, but I'm at a loss. This is such

a difficult stage.

[Guest guest]

in reading this, i was thinking about my therapist I had the other year with

JAS. She siad she had a lot of thing sshe wasn't 'supposed' to do like using

steps and things but she did it anyways. Also going to concerts but she said

'mosh pits were not out of the question'... lol. We had gone to the same

undergrad institution and she had a wonderful time there whereas, I didnt

but she also didnt use a wheelchair however in talking about some of the

issues I faced there, she mtentioned some of the crazy things that would

happen at her graduate school like the maintenance people shutting off the

elevator in the middle of the day and students that use wheelchairs not

being able to get down and her throwing a fit with them about it.. but she

had 'forgotten about that' until I started talking about similar issues.

I had wanted to ask her if she considered herself disabled and if she told

people about her disease but I never did... already had a feeling that the

answers to both of those were NO and NO. lol. She had mentioned that her

last quarter at UCSD was spent with double pneumonia and she pushed through

anyways but really shouldnt have....

I know on a few occasions, I would ask her how her joints were and she would

say something evasive. It really mademe laugh being that she's a

psychologist and so evasive about admitting that she has problems. She is

very rebel type.... sarcastic and admitted that much like me, she has coped

with her illness by not thinking tmuch about it, doing what she wanted to do

as much as she could anyways, using humor and sarcasm and yeh... so we were

around the same age and it just makes me think that those of us who have

dealt with this stuff for so long...w e go into that stage of " Im fine' and

nothing you can say will convince me otherwise even if it hurts to do

everything... I'm fine....

Issadora

On Tue, Jul 8, 2008 at 9:39 AM, Tepper, Michele <MTepper@...>

wrote:

> Hugs, . You know I can relate. I watched take his Arthrotec

> last night, but " nothing is really wrong and I don't need the MTX " . I am

> sorry that Rob has made this decision. All I know to do is to keep the

> gentle reminders on him, and be there (as you will be) when he can't

> deny he needs to go back. He does need to be monitored while on those

> meds as you know. I hope he does not decide to go off them. Perhaps a

> talk with Dr. Passo at the next visit will help him to realize what he

> needs to do. Maybe they can work something out where he goes only

> occasionally to the rheumy. I do know exactly how you feel and all I

> have done is hold on to the advice and support I've gotten here. I

> always remember what said, that he will go back when he is ready.

> Hearing from the adults here who had JRA since childhood helps too.

> Can't say much more, just know I am with you and adding Rob to my

> prayers! Michele ( 21, spondy)

>

> ________________________________

>

> From: < %40> [mailto:

> < %40>] On

> Behalf Of and Schulz

> Sent: Monday, July 07, 2008 7:48 PM

> JRA, List

> Subject: Rob

>

> Rather than typing out the story again with my broken fnger (long

> story), here is the email I just sent to Dr. Passo. It explains where we

> are right now. I know Michele can sooooo relate!

> Any thoughts on this are appreciated. See below:

> and Rob 19 JAS

> Dr. Passo:

> So sorry to bother you again. I received your letter telling us Rob

> needs to transition to an adult rheumatologist. This is fine, but I am

> in a quandry.

> I could have him go to my rheumatologist in Louisville (you may remember

> I have RA), Dr. Stern. However, Rob is moving to Indianapolis in

> August and may end up living there year round while he is in college.

> I am wondering if we should find an adult rheumy in Indy. Of course,

> when I mention this to Rob, he states " I am in remission and I don't

> need a rheumatologist " . Geesh. I told him it was likely he was in a

> MEDICATED remission, but that going off his meds and acting like he

> doesn't have AS is silly. I'm sure you have seen many patients go

> through this. I explained that he might feel well for awhile if he goes

> off his meds, but who knows, maybe 6 months, a year, or longer it might

> hit him again and he will be in need of a rheumatologist.

> I'm in sore need of advice and really can't wait to figure this out till

> our appointment with you in mid August. By then, he will have moved to

> Indy.

> Any advice you could offer would be appreciated. I know you are very

> busy and I apologize for the intrusion, but I'm at a loss. This is such

> a difficult stage.

>

>

[Guest guest]

Geez , tell Rob we said hello and more importantly to hang tight. I sure

hope he gets the needed attention soon and feels better quickly!!!

Donna

[Guest guest]

I never met him, but he was always good to me and listened to my rants about pt

care overseas etc.  May our brother rest in peace up on streets of Gold now

RIP Brother Rob

Mike and my lovely wife Marla will miss you<><

Growing old is inevitable, growing up is optional.

 

Medical Traveling Soldier of Fortune Conventional and Tactical Medical Support

 

Mike " Major Dad " Reisman Maj-Ret RN CS FNP

 

" Every strike brings me closer to the next home run. "

--Babe Ruth,

American baseball player

 

From: Larry Torrey <ltorrey@...>

Subject: Rob

Date: Monday, October 3, 2011, 6:02 PM

 

It has been reported that Rob , formerly a regular on this list, has

passed away. I know he had developed a progressive and debilitating

illness.

LT

Sent by DROID2 Global

[Guest guest]

Rob was a long-time paramedic from the early days of EMS in Fort

Worth, Texas. Like many from this area in those days, he worked first for

Crowder Funeral Home, an early 9-1-1 provider for Fort Worth and much of the

surrounding areas. He worked alongside many of the old dinosaurs of EMS,

some of whom have gone on to become quite well known, as well as some who

have become somewhat infamous. In his career Rob spent many years working in

some of the most remote and austere environments, and he never failed to be

a strong promoter of expanding and perfecting the role of pre-hospital and

remote medical services.

Rob had been diagnosed with ALS a few years back. Those of us who knew him

well respected his wish that this not be publicly revealed. Rob fought the

progression of the disease valiantly and only lately was it able to deny him

the ability to communicate. In 2008 he attended the last EMStock, and the

following year he spent several hours at my annual Labor Day party. He was

using a walker at that time.

He is gone now and it no longer matters, but I feel certain he would feel

distain at even this brief mention of his life. I¹m quite sure he would much

rather we get to the nearest pub and hoist a glass rather than grieve even

for a moment. As was his wish, final arrangements are to be private. There

will be no services.

Best regards,

Donn

On 10/3/11 8:02 PM, " Larry Torrey " <ltorrey@...> wrote:

>

>

>

>

>

> It has been reported that Rob , formerly a regular on this list, has

> passed away. I know he had developed a progressive and debilitating

> illness.

>

> LT

>

> Sent by DROID2 Global

>

>

[Guest guest]

Hi all,

 

It is sometimes great to know that we have wonderfull people out there, who are

really considerate. This makes me feel good to be part of a great group of

people on this website. You are all wonderfull people on this website and thank

you for guys like you!!

 

Yes RIP Rob!!

 

Thanks Ian for a wonderfull " band of medical brothers! " Stay well and be safe

guys.

 

Kind regards

Byron Fawcus

 

PS: It brings me to tears and gives me goose bumps! If only I could play

'Amazing Grace' with a Bagpipe right now!! 

________________________________

From: Mike Reisman RN CS FNP <kenpomed@...>

Sent: Tuesday, October 4, 2011 4:07 AM

Subject: Re: Rob

 

I never met him, but he was always good to me and listened to my rants about pt

care overseas etc.  May our brother rest in peace up on streets of Gold now

RIP Brother Rob

Mike and my lovely wife Marla will miss you<><

Growing old is inevitable, growing up is optional.

 

Medical Traveling Soldier of Fortune Conventional and Tactical Medical Support

 

Mike " Major Dad " Reisman Maj-Ret RN CS FNP

 

" Every strike brings me closer to the next home run. "

--Babe Ruth,

American baseball player

 

From: Larry Torrey <ltorrey@...>

Subject: Rob

Date: Monday, October 3, 2011, 6:02 PM

 

It has been reported that Rob , formerly a regular on this list, has

passed away. I know he had developed a progressive and debilitating

illness.

LT

Sent by DROID2 Global

[Guest guest]

Amen to that Brother Byron

Mike<><

Growing old is inevitable, growing up is optional.

 

Medical Traveling Soldier of Fortune Conventional and Tactical Medical Support

 

Mike " Major Dad " Reisman Maj-Ret RN CS FNP

 

" Every strike brings me closer to the next home run. "

--Babe Ruth,

American baseball player

 

From: Larry Torrey <ltorrey@...>

Subject: Rob

Date: Monday, October 3, 2011, 6:02 PM

 

It has been reported that Rob , formerly a regular on this list, has

passed away. I know he had developed a progressive and debilitating

illness.

LT

Sent by DROID2 Global

[Guest guest]

Larry:

I thought it important to forward BEBs note from EMTCity where Rob was a regular

participant (5000 post count ~) and where I was introduced to (call sign)

DUSTDEVIL, he one of the strongest advocates for the development for

Paramedicine, if one wishes to see just how positively an influence he became,

please do not hesitate to visit EMT city the thread of course: " Rob " . The

world has lost an outstanding man and human being today. I will personally very

much miss my friend yet curiously torn and almost pleased that he is no longer

suffering. Rob was a veteran of Viet Nam and Iraq and may other " campaigns " ,

well enough said.

RIP brother DUST until we meet again.

Wilf

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

Many of you know Rob from these EMS forums. He often posted and would have

a picture of Wayne or Chuck Norris as his avatar. Rob passed away last

night after a long and horrendous battle with Lou Gehrig's disease (ALS). I

actually diagnosed him after the last EMStock and he asked that I not tell

anybody (which I did not). He died at his mother's house in Mansfield, TX. I

heard less and less from him toward the end. Like many with ALS, he was angry.

Many of us from Fort Worth worked with Rob in EMS. He was a bright and

passionate guy. He did like to stir the sh*t as well. Per his request, no

funeral will be held. There may be some memorial service later but I have not

heard.

Thanks.

Bledsoe, DO, FACEP, FAAEM, EMT-P

Rob

It has been reported that Rob , formerly a regular on this list, has

passed away. I know he had developed a progressive and debilitating

illness.

LT

Sent by DROID2 Global