BILL, BUT REALLY ALL > Re: Okay... promise you won't yell... :o)

[Guest guest]

HI BILL. THANKS FOR YOUR RESPONSE. PERHAPS I SHOULD CLARIFY A FEW

THINGS...

YOU WROTE: " The diagnoses is not as important as the symptoms... "

TO ME, THE DIAGNOSIS IS NOT IMPORTANT AT ALL. I KNOW WHAT IS

HAPPENING WITH MY BODY (NOT NECESSARILY " WHY " - BUT " WHAT " ) AND IT

JUST KEEPS GETTING WORSE. AT ONE POINT, THE DIAGNOSIS WAS DESIRED,

TO " KNOW " A BIT BETTER WHETHER IT WAS GOING TO GET WORSE, AND HOW

BAD... BUT NOW, IT IS NO LONGER USEFUL TO ME - BECAUSE THE PATTERN

IS CLEAR. I RECALL WHEN I USED TO HAVE " GOOD " DAYS, IN WHICH ONE OF

MY SYMPTOMS MAY HAVE CLEARED FOR A DAY OR TWO. AT SUCH TIMES, I'D

WONDER IF I'D BEEN HEALED. NOW, I OCCASIONALLY HAVE " GOOD " HOURS.

JUST TO SHOW HOW OPTOMISTIC I AM - I EVEN CATCH MYSELF NOW WONDERING

DURING THOSE HOURS WHETHER I AM HEALED. :-) MIND YOU - I'M NEVER

FREE FROM ALL SYMPTOMS - BUT WHEN ONE LETS UP - EVEN IF JUST FOR AN

HOUR... :-) ISN'T IT INTERESTING HOW SOME OF US ARE GEARED?

YOU ALSO WROTE: " Your doctor will need to certify that you are too

disabled to do your normal job " THAT IS NOT TOO HARD TO SHOW. I HAD

SOME NUMBERS BROUGHT TO MY ATTENTION RECENTLY. A YEAR AGO, MY

COMPUTER CRASHED. IT TOOK WITH IT 2 WEEKS' INCOME. IN AUGUST, IT

CRASHED AGAIN, AND TOOK WITH IT AN ENTIRE MONTH. HOWEVER,

COMPARATIVELY... IT TOOK 3 TIMES AS MUCH IN 2 WEEKS A YEAR AGO, AS

IT TOOK IN AUGUST. YEP. THE FACTS ARE HARD FOR ME TO IGNORE. I

EARNED FOR OUR PRACTICE - A WHOPPING 1/6 OF THE INCOME PER MONTH THAT

I EARNED A YEAR AGO. THE GOOD THING ABOUT MY JOB IS THAT I CAN DO IT

TO WHAT EVER DEGREE POSSIBLE, AND VIRTUALLY NEVER BE FIRED. PEOPLE

ARE HAPPY TO GET INPUT FROM ME REGARDLESS OF WHETHER I CAN WORK 40

(OR 60 OR 80) HOURS PER WEEK, OR 5. OF COURSE, THAT IS ALSO A

PROBLEM, BECAUSE FEW OF US CAN WORK 5 HOURS PER WEEK, AND STILL

AFFORD TO PROVIDE A LIVING FOR OUR FAMILIES. THIS IS THE DILEMNA WE

ARE CURRENTLY FACING, AS WE HAVE LITERALLY EXHAUSTED ALL FINANCIAL

RESOURCES, AND ARE NOW FACING THAT " DRY " 6 MONTH WAITING PERIOD FOR

SOC SEC DISABILITY INCOME. LET'S JUST SAY I'M A SORRY COMBINATION OF

HOPEFULLY AND DETERMINED (AND YES, IN SOME CASES TRULY IGNORANT :-)

YOUR NEXT PART GETS INTERESTING, AND PLEASE UNDERSTAND I'M JUST

ASKING FOR CLARIFICATION, NOT PICKING ON YOU. THIS IS ALL QUITE

CONFUSING, AND I WANT TO MAKE SURE I HAVE THIS ALL RIGHT BEFORE WE

PROCEED...

YOU SAID: " and that it will not get better (it's permanent). " HOW

ON EARTH CAN A DOC SAY IT WON'T GET BETTER, OR THAT IT'S PERMANENT,

IF THERE IS NOT A FIRM DIAGNOSIS (AS FIRM AS THEY CAN BE) OF MSA OR

SOME OTHER (AS OF YET) UNTREATABLE AND PROGRESSIVELY DEGENERATIVE

DISEASE? I HAVE THE AUTONOMIC DIAGNOSIS. I ALSO HAVE THE DOC WHO

RECOMMENDED I APPLY. SHE SAID I DID NOT NEED TO BE WORKING ANY

MORE. AND, SHE IS AN INTERNIST. MY MAIN CONCERN IS, THAT NOW THAT I

HAVE ACCEPTED (AT LEAST FOR THE MOMENT :-) THAT I AM GETTING WORSE,

AND DON'T APPEAR TO BE ABLE TO GET BETTER (EXCEPT FOR A GENUINE

MIRACLE)... I WANT TO MAKE SURE THIS APPLICATION WORKS. THE FIRST

TIME. WE'VE WATCHED MY ABILITY TO EARN AN INCOME DROP BY 50%, 75%

AND NOW 83%... THE PATTERN IS EVIDENT. (AND THIS IS BASICALLY A

SINGLE-INCOME HOUSEHOLD - WHICH HAS BEEN A BLESSING, BECAUSE I'D HAVE

ALREADY HAD TO QUIT IF NOT FOR MY WIFE BEING ABLE AND WILLING TO

DRIVE ME TO SEE MY CLIENTS).

THERE IS ANOTHER POINT THAT I AM CONSIDERING... AND THAT IS THAT

APPLICATION PROCESSES CAN TAKE YEARS, AND I DO NOT WANT TO WATCH MY

FAMILY SUFFER NEEDLESSLY. THE REALITY IS... PRIOR TO ANY DIAGNOSIS,

MY DOC WAS CONCERNED ABOUT MY ABILITY TO LIVE. NOW, AFTER LEARNING

MY DIAGNOSIS, SHE IS NONE-THE-LESS CONCERNED. OF COURSE, I THINK SHE

HAS HAD A LESSON IN MY TENACITY SINCE FIRST HOSPITALIZING ME.

BECAUSE IN SPITE OF MY ABSOLUTELY " OFF THE SCALES " TEST RESULTS WHICH

INDICATED I HAD LITTLE TIME LEFT... I HAVE MIRACULOUSLY SURVIVED. I

DO COUNT IT A MIRACLE TOO. IT IS ONLY BY PRAYERS THAT I AM ABLE TO

DO ALL I CAN, AND THAT I HAVEN'T GOTTEN SOME INFECTION AND DIED. I

MEAN, SHE MADE ME GO IN THE HOSPITAL IN FEBRUARY, SAYING IF I DIDN'T

I WOULD DIE. NOTHING HAS CHANGED (FOR THE BETTER, PLENTY HAS GOTTEN

WORSE) SINCE THEN.

ANYWAY, I'M RAMBLING. PLEASE FORGIVE ME. I'LL TRY TO STICK MORE TO

THE POINT...

OF COURSE, ALL OF THIS IS MOOT, AS I CAN'T CONTINUE TO WORK ANYWAY -

IT'S JUST NOT REALISTIC. BUT, ASK VERA HOW LONG IT'S TAKEN ME TO

COME TO GRASP THAT REALITY :-)

YOU ALSO WROTE: " Note that you do not have to be completely

disabled - only disabled to the point that you can not do the job you

were trained for and the reasons you can not do it. " WELL... THAT

IS GOOD NEWS. GUESS THOUGH, IN REALITY, I HAVE HAD TO COME TO THIS

POINT - WHERE I ACCEPT THAT I'M NOT DOING ENOUGH TO BENEFIT MY

FAMILY - AND NEED TO BOW OUT...

JUST FYI... YOU APPROPRIATELY STATED: " They can offer you training

in another job, but it is rare (I have not heard of them doing that

but they may ask your doctor). " GIVEN MY HISTORY OF THE PAST YEAR,

THEY'LL BE MORE LIKELY TO ASK - " HOW DID YOU DO IT? " BUT TO ME, MY

WORK IS AN ESCAPE. AS I'VE TOLD OTHERS, WHEN I WORK - AT LEAST WITH

MY REALLY INTENSE CLIENTS - I CAN FORGET ABOUT SOME OF THE SYMPTOMS.

PROBLEM IS... WHEN I ATTEMPT TO DO THE PAPERWORK END - THESE

COMPUTERS - OR EVEN PAPERS - GIVE ME FITS - WITH MY EYES MESSING UP

AS THEY DO - SO I GET NO RELIEF FROM SYMPTOMS WHEN DOING ANYTHING

OTHER THAN 1:1 WORK.

YOU WROTE: " They will also need to recertify that you are still

disabled every 2-3 years as long as you get SSDI. " AT THIS POINT,

I'LL COUNT IT A BLESSING TO STILL BE AROUND 2 YEARS FROM NOW. THE

PAST YEAR HAS BEEN A GIFT, AND I TRY TO TAKE EACH DAY AS ONE (THOUGH

I ADMITTEDLY SOMETIMES FORGET, AS I TEND TO " ADJUST " TO THINGS -

WHICH, AS ALL, IS BOTH GOOD AND BAD :-)

REGARDING SYMPTOMS AND OTHER THINGS MORE IMPORTANT TO SSDI PEOPLE,

YOU WROTE: " Things like gait disorder, ataxia and dysautonmia are

more important than calling it MSA or something else (which the SSDI

people do not know anyway). " ACTUALLY, AGAIN, THE REASON FOR AN MSA

OR SIMILAR DIAGNOSIS IS TO PROVIDE SOME EVIDENCE AS TO

THE " PROGRESSIVE DEGENERATION " OR " TERMINAL " CONDITION. OF COURSE,

AGAIN, IF I (AND THEY) WILL SIMPLY LOOK BACK AT MY LAST YEAR, THERE

IS NO NEED TO BE CONCERNED ABOUT A DIAGNOSIS OF THAT KIND - THE ONES

I ALREADY HAVE WILL LIKELY SUFFICE.

REGARDING TIMING... YOU WROTE: " Since you can not get Medicare

until two years after you get SSDI, it may be well to apply now

especially if things are moving faster. " AS I SAID, IT'S A BLESSING

(AND PERPLEXITY TO MY DOCS) THAT I'M EVEN STILL AROUND NOW, SO I AM

NOT CONCERNED ABOUT BENEFITS I MIGHT RECEIVE 2 YEARS DOWN THE ROAD

(IF OUR GOVERNMENT IS EVEN ABLE TO STILL PROVIDE THEM AT THAT

POINT).

YOU CONTINUED: " I would definitely ask by the time you are falling

often. Ask your doctor about disability and they will probably know

what the criteria are for getting it. " WELL, AGAIN, IT WAS MY DOC

(INTERNIST) WHO RECOMMENDED I GET IT. I HAVE BEEN DENYING IT ALL

ALONG, BUT SHE IS MUCH MORE OBJECTIVE IN HER VIEW AND

RECOMMENDATIONS. IN FACT, I THINK SHE MAY HAVE MENTIONED SOMETHING

BEFORE THAT FATEFUL APPOINTMENT A COUPLE OF MONTHS AGO - BUT I JUST

DID NOT HAVE " EARS TO HEAR " AT THAT TIME. YOU KNOW, THAT " MALE

SELECTIVE HEARING LOSS " THING :-) {AS OPPOSED TO MY ORGANIC,

PREMATURE, PROGRESSIVE, UNEXPLAINABLE (EXCEPT RE AUTONOMIC

DYSFUNTION) HEARING LOSS.}

FINALLY, YOU WROTE: " Note too, that almost every patient of brain

disorders claims that stress makes the symptoms worse. You are not

alone there. " THANKS. NEVER HURTS TO KNOW THAT I HAVE MORE

COMMONALITIES :-)

THANKS AGAIN BILL, AND ALL WHO READ AND REPLY. WHAT I WAS GETTING AT

EARLIER, IN A NUTSHELL, IS THAT I WANT THIS TO WORK THE FIRST TIME.

MY FAMILY HAS SUFFERED ENOUGH, AND I DON'T WANT THEM TO SUFFER

NEEDLESSLY. AND, PERSONALLY, ADMITTEDLY SELFISHLY, IF I INDEED AM

FACING END-OF-LIFE ISSUES HERE, THEN I DON'T WANT TO HAVE MY LAST

MEMORIES OF MY FAMILY BEING THOSE OF THEM SUFFERING FOR ANY LACK.

AFTER ALL, ONE OF MY GREATEST HONORS HAS BEEN TO PROVIDE FOR THEM AS

WELL AS I COULD (AND YES, I REALIZE I'VE DONE THAT - TO NOW... THAT

I HAVE TRULY DONE MY BEST, AND THAT IS ALL ANYONE CAN ASK :-)

PAUL

PS: TO THOSE OF YOU WHO ARE USED TO A MORE LIGHT-HEARTED PABLITO...

HOPE I HAVEN'T LET YOU DOWN, BUT WE ALL HAVE ISSUES WHICH TEND TO

WEIGH US DOWN FROM TIME TO TIME. I'VE STILL TRIED TO KEEP THIS

LIGHT, BUT YOU KNOW... WHEN YOU'RE TALKING ABOUT SAYING " GOOD-BYE "

TO A PART OF YOUR LIFE THAT HAS LITERALLY BEEN ONE OF THE MAIN

FOCUSES, AND SOMETHING THAT I SPENT ABOUT A DECADE AFTER HIGH SCHOOL

PREPARING FOR... AND HAVING TO DO SO AT LEAST 20 YEARS PRIOR TO WHEN

YOU'D PLANNED ON - AND WITH NO REAL CONTROL IN THE SITUATION (OTHER

THAN TO PERSIST UNTIL I TRULY CANNOT WORK AT ALL - WHICH MAY NOT BE

THAT FAR DOWN THE ROAD...) IT CAN BE A BIT OF A BUMMER. OF COURSE,

AT LEAST I GOT TO ENJOY SOME PROFESSIONAL SUCCESS. AND, AT LEAST MY

WORK IS NOT, NOR HAS IT EVER BEEN - " MY LIFE " . MY LIFE HAS BEEN

GROUNDED IN GOD, AND THEN MY FAMILY, WITH MY JOB FALLING SOMEWHERE IN

AFTER THAT. AND... NOW... I ADMITTEDLY DO WHAT I DID TODAY,

SPENDING THE BETTER PART OF THE DAY CONSTRUCTING THE FRAMEWORK FOR MY

WIFE'S BED - BECAUSE CHANCES ARE SHE'LL REMEMBER THAT FAR MORE THAN

ME SPENDING THE TIME EARNING A BIT OF INCOME (PLUS, I WAS ADMITTEDLY

IN TOO BAD OF SHAPE TODAY TO DO ANY " JOB " WORK OR SEE ANYONE.)

> ==============================================================

>

> pulalupu wrote:

>

> >Hi .

> >

> >I am an extrovert, so it is a problem for me. :-)

> >

> >Anyway, thanks for the comments. Valued as always.

> >

> >I was quite curious, as it seems any stress - emotional or

physical

> >seems to be bringing new " gems " to the surface.

> >

> >I've copied your post and will deliver to my internist. I don't

have

> >a neurologist. My neuro from Tulsa has not expressed a desire to

see

> >me again since he is not familiar with what is going on - and I

> >haven't had a response from my neuro at Mayo in quite some time

> >(except a brief phone message telling me not to pursue one avenue).

> >

> >We are considering going to Dr. on.

> >

> >Curious, have you been diagnosed with MSA? I have not. Just

> >autonomic neuropathy. Of course, when doc at Mayo saw me,

> >uncontrolled muscle movements were not such a significant issue.

> >And, even now, they seem to have died back down.

> >

> >I wasn't concerned with Dx, but now that I am facing applying for

> >disability, it seems a more firm diagnosis might be beneficial.

> >(I've been as reluctant to pursue " disability " as I have been to

use

> >a cane, but the point has come that we can no longer live off my

> >ability to generate an income - making basically 1/6 - at best -

of

> >what I was a year ago.)

> >

> >Catcha later.

> >

> >Pablito

> >

[Guest guest]

,

Actually most people on the list have not had an excessively hard time from

SSDI. There HAVE been some horror stories, BUT once you apply your benefits

DO get based on the date you actually apply if it is finally determined you

have a disability. If you don't get a satisfactory answer ask to speak to

a supervisor - BUT insist on filing a claim.

On applying - the documentation your doctor sends in (they will send lots

of paperwork to your poor doctor) and how fast they send it in - will determine

if you get the SSDI. Ataxia is easy to prove along with the other things

they ask about symptoms. The doctor has all your test results also which

will help prove your case. I do not think you will have a problem with SSDI,

but you need to get it started now. Call your Social Security office and

apply now - they can do everything except a physical over the phone. We

did have an advantage as Charlotte had been to NIH (a government doctor)

as well as two other neurologists AND our family doctor who also does pilot

medical certifications. So we were able to do the whole thing with letters

and telephone. We did get it 4 months from the time we first called them

and actually applied. We did goof a year earlier as we were told she had

to be "totally" disabled and we did not apply (she was able to use a computer

- to our minds that was not totally disabled).

Yes a brain disorder of any kind can devastate your income. Charlotte had

fatigue and a few minor problems as early as 1988 and left a $37k per year

job for an easier job at $14k (at the same time I got a $6k raise to a manager

position). In 1994, she had to quit her job altogether so we lost about

$15k that year and the next year I had to retire to take care of her which

cut our income by about $24k again. I did take a part time job making about

$12k Later that year she got SSDI which was about about $9k But in 1999,

she needed full time care and I had to drop another $15k from my part time

job. When she died, her SSDI stopped immediately, actually our last SSDI

check was 23 days before she died. So until I recently took a new part time

job, I was going on savings also. AND, I am one of the lucky people who

can still afford to pay my $1100 per month mortgage ) I see people here

on the list everyday who can not pay their mortgage and it boils me.

What frosts me most is that we have a national "leader" who says: we need

to execute criminals for the good of all (I agree actually that it is necessary

but it does KILL people); drop $1 million (ea) bombs on suspected terrorists

(I agree, but feel we need to actually know who the enemy is and it does

KILL people including babies); THEN says that saving about 2/3rds of the

blastocyst cells from being flushed down the toilet is "killing babies".

Sorry I AM a Christian (born and bred) and do NOT see the logic in that

stand. Especially when there are over 30 million americans with diseases

and disorders which might be helped by those cells. People with PD (M. J.

Fox), Altzheimers ( Reagan), severed nerves (Reeves), Juvenile

Diabetes ( Tyler ) and a host of cancers and brain disorders NEED

the research to continue. The USA needs these cures or we will go broke

trying to support people with disorders which keep them from being productive.

Sorry, but I do NOT see the churches (who fight stem cell research) supporting

these people these days. I see some people from some churches

trying to help, but none actually helping support the families. I agree

with and Tony - - something has to be done NOW. If the USA wants

to be called a "Christian Nation", we need to think of what Christ taught

"Love thy neighbor as thyself" and ACT accordingly. When we do, I will be

glad to pay my taxes to support research and even war, but when most of my

medical research taxes are going to fight AIDS ($1.1 Billion next year alone)

and we can't get a couple million over five years - something is wrong with

the leadership of our country.

Back to your case (after I "yelled" ) This two year wait for Medicare

after getting SSDI is also a "stinker" of a rule. They admit you are disabled

and therefore need added medical care, BUT they make you wait so you can

exhaust your funds while waiting. We have caregivers working their asses

off AND taking care of the house, being a nurse, giving physical therapy,

speech therapy, shopping, and some even caring for kids. BUT some politicians

say they are lazy and don't need help! Even Reagan who has money and

can afford the help, is saying it is too much to ask of a person emotionally.

Personally, I think they should ask every politician who votes against stem

cell research to be a caregiver for a week - while the primary caregiver

takes a vacation. They need to actually deal with constipation (there is

a thought - Bush manually unblocking a MSA bowel ), how about bedsores

(Louise - write Trent Lott and ask if he would help you out for a day), however

- there is one area you can get help. Every House member to my knowledge

has a staff member who does help break red tape - use them!!!!!!!!

Barb Sellect and Barb have posted links here before which help

you find government programs designed (but not always funded) to help people

in need. I know that you are not old enough to be a "senior" but the

Area Agency on Aging did help us anyway by referring us to agencies which

could help some. If you are in danger of losing your home - there are some

things they will do to help you - BUT they require that you do tons of paperwork

to prove you are in trouble. Sorry, I am still fighting bills from the last

month of Charlotte's life - "she is dead, how can she have bills".

I am not "yelling" at you - just our lawyer/accountant system of a "Christian

Nation" - remember what Christ thought of the money changers ) Sorry

to go off, but I am dealing with paperwork on Charlotte's estate - just trying

(still) to get her stock - about $18k transferred to me. We had everything

else in joint ownership with right of survivorship.

To all, MAKE SURE you take care of paperwork - ALL of it - NOW!

Take care and good luck with SSDI - I hope you find a good government SSDI

worker as most of us did.

Hugs, Bill Werre

P.S. I DO know what you and your family are going through, I dealt with

this sort of problem for twelve years.

[Guest guest]

, please dont get discouraged, even if they turn you down twice, just

get you a lawyer and go to court. the lawyer will work on contingency and

its a law he can charge no more than i think its 4,000 or 25% or your back

social security whichever is lesser of the two. i went through this

process with my husband, it took two years but we finally got it. look in

the yellow pages if you have to get a lawyer and get that one that

specializes in social security. paula BILL, BUT REALLY " ALL " > Re: Okay... promise you won't

yell... )

> HI BILL. THANKS FOR YOUR RESPONSE. PERHAPS I SHOULD CLARIFY A FEW

> THINGS...

>

> YOU WROTE: " The diagnoses is not as important as the symptoms... "

> TO ME, THE DIAGNOSIS IS NOT IMPORTANT AT ALL. I KNOW WHAT IS

> HAPPENING WITH MY BODY (NOT NECESSARILY " WHY " - BUT " WHAT " ) AND IT

> JUST KEEPS GETTING WORSE. AT ONE POINT, THE DIAGNOSIS WAS DESIRED,

> TO " KNOW " A BIT BETTER WHETHER IT WAS GOING TO GET WORSE, AND HOW

> BAD... BUT NOW, IT IS NO LONGER USEFUL TO ME - BECAUSE THE PATTERN

> IS CLEAR. I RECALL WHEN I USED TO HAVE " GOOD " DAYS, IN WHICH ONE OF

> MY SYMPTOMS MAY HAVE CLEARED FOR A DAY OR TWO. AT SUCH TIMES, I'D

> WONDER IF I'D BEEN HEALED. NOW, I OCCASIONALLY HAVE " GOOD " HOURS.

> JUST TO SHOW HOW OPTOMISTIC I AM - I EVEN CATCH MYSELF NOW WONDERING

> DURING THOSE HOURS WHETHER I AM HEALED. :-) MIND YOU - I'M NEVER

> FREE FROM ALL SYMPTOMS - BUT WHEN ONE LETS UP - EVEN IF JUST FOR AN

> HOUR... :-) ISN'T IT INTERESTING HOW SOME OF US ARE GEARED?

>

> YOU ALSO WROTE: " Your doctor will need to certify that you are too

> disabled to do your normal job " THAT IS NOT TOO HARD TO SHOW. I HAD

> SOME NUMBERS BROUGHT TO MY ATTENTION RECENTLY. A YEAR AGO, MY

> COMPUTER CRASHED. IT TOOK WITH IT 2 WEEKS' INCOME. IN AUGUST, IT

> CRASHED AGAIN, AND TOOK WITH IT AN ENTIRE MONTH. HOWEVER,

> COMPARATIVELY... IT TOOK 3 TIMES AS MUCH IN 2 WEEKS A YEAR AGO, AS

> IT TOOK IN AUGUST. YEP. THE FACTS ARE HARD FOR ME TO IGNORE. I

> EARNED FOR OUR PRACTICE - A WHOPPING 1/6 OF THE INCOME PER MONTH THAT

> I EARNED A YEAR AGO. THE GOOD THING ABOUT MY JOB IS THAT I CAN DO IT

> TO WHAT EVER DEGREE POSSIBLE, AND VIRTUALLY NEVER BE FIRED. PEOPLE

> ARE HAPPY TO GET INPUT FROM ME REGARDLESS OF WHETHER I CAN WORK 40

> (OR 60 OR 80) HOURS PER WEEK, OR 5. OF COURSE, THAT IS ALSO A

> PROBLEM, BECAUSE FEW OF US CAN WORK 5 HOURS PER WEEK, AND STILL

> AFFORD TO PROVIDE A LIVING FOR OUR FAMILIES. THIS IS THE DILEMNA WE

> ARE CURRENTLY FACING, AS WE HAVE LITERALLY EXHAUSTED ALL FINANCIAL

> RESOURCES, AND ARE NOW FACING THAT " DRY " 6 MONTH WAITING PERIOD FOR

> SOC SEC DISABILITY INCOME. LET'S JUST SAY I'M A SORRY COMBINATION OF

> HOPEFULLY AND DETERMINED (AND YES, IN SOME CASES TRULY IGNORANT :-)

>

> YOUR NEXT PART GETS INTERESTING, AND PLEASE UNDERSTAND I'M JUST

> ASKING FOR CLARIFICATION, NOT PICKING ON YOU. THIS IS ALL QUITE

> CONFUSING, AND I WANT TO MAKE SURE I HAVE THIS ALL RIGHT BEFORE WE

> PROCEED...

>

> YOU SAID: " and that it will not get better (it's permanent). " HOW

> ON EARTH CAN A DOC SAY IT WON'T GET BETTER, OR THAT IT'S PERMANENT,

> IF THERE IS NOT A FIRM DIAGNOSIS (AS FIRM AS THEY CAN BE) OF MSA OR

> SOME OTHER (AS OF YET) UNTREATABLE AND PROGRESSIVELY DEGENERATIVE

> DISEASE? I HAVE THE AUTONOMIC DIAGNOSIS. I ALSO HAVE THE DOC WHO

> RECOMMENDED I APPLY. SHE SAID I DID NOT NEED TO BE WORKING ANY

> MORE. AND, SHE IS AN INTERNIST. MY MAIN CONCERN IS, THAT NOW THAT I

> HAVE ACCEPTED (AT LEAST FOR THE MOMENT :-) THAT I AM GETTING WORSE,

> AND DON'T APPEAR TO BE ABLE TO GET BETTER (EXCEPT FOR A GENUINE

> MIRACLE)... I WANT TO MAKE SURE THIS APPLICATION WORKS. THE FIRST

> TIME. WE'VE WATCHED MY ABILITY TO EARN AN INCOME DROP BY 50%, 75%

> AND NOW 83%... THE PATTERN IS EVIDENT. (AND THIS IS BASICALLY A

> SINGLE-INCOME HOUSEHOLD - WHICH HAS BEEN A BLESSING, BECAUSE I'D HAVE

> ALREADY HAD TO QUIT IF NOT FOR MY WIFE BEING ABLE AND WILLING TO

> DRIVE ME TO SEE MY CLIENTS).

>

> THERE IS ANOTHER POINT THAT I AM CONSIDERING... AND THAT IS THAT

> APPLICATION PROCESSES CAN TAKE YEARS, AND I DO NOT WANT TO WATCH MY

> FAMILY SUFFER NEEDLESSLY. THE REALITY IS... PRIOR TO ANY DIAGNOSIS,

> MY DOC WAS CONCERNED ABOUT MY ABILITY TO LIVE. NOW, AFTER LEARNING

> MY DIAGNOSIS, SHE IS NONE-THE-LESS CONCERNED. OF COURSE, I THINK SHE

> HAS HAD A LESSON IN MY TENACITY SINCE FIRST HOSPITALIZING ME.

> BECAUSE IN SPITE OF MY ABSOLUTELY " OFF THE SCALES " TEST RESULTS WHICH

> INDICATED I HAD LITTLE TIME LEFT... I HAVE MIRACULOUSLY SURVIVED. I

> DO COUNT IT A MIRACLE TOO. IT IS ONLY BY PRAYERS THAT I AM ABLE TO

> DO ALL I CAN, AND THAT I HAVEN'T GOTTEN SOME INFECTION AND DIED. I

> MEAN, SHE MADE ME GO IN THE HOSPITAL IN FEBRUARY, SAYING IF I DIDN'T

> I WOULD DIE. NOTHING HAS CHANGED (FOR THE BETTER, PLENTY HAS GOTTEN

> WORSE) SINCE THEN.

>

> ANYWAY, I'M RAMBLING. PLEASE FORGIVE ME. I'LL TRY TO STICK MORE TO

> THE POINT...

>

> OF COURSE, ALL OF THIS IS MOOT, AS I CAN'T CONTINUE TO WORK ANYWAY -

> IT'S JUST NOT REALISTIC. BUT, ASK VERA HOW LONG IT'S TAKEN ME TO

> COME TO GRASP THAT REALITY :-)

>

> YOU ALSO WROTE: " Note that you do not have to be completely

> disabled - only disabled to the point that you can not do the job you

> were trained for and the reasons you can not do it. " WELL... THAT

> IS GOOD NEWS. GUESS THOUGH, IN REALITY, I HAVE HAD TO COME TO THIS

> POINT - WHERE I ACCEPT THAT I'M NOT DOING ENOUGH TO BENEFIT MY

> FAMILY - AND NEED TO BOW OUT...

>

> JUST FYI... YOU APPROPRIATELY STATED: " They can offer you training

> in another job, but it is rare (I have not heard of them doing that

> but they may ask your doctor). " GIVEN MY HISTORY OF THE PAST YEAR,

> THEY'LL BE MORE LIKELY TO ASK - " HOW DID YOU DO IT? " BUT TO ME, MY

> WORK IS AN ESCAPE. AS I'VE TOLD OTHERS, WHEN I WORK - AT LEAST WITH

> MY REALLY INTENSE CLIENTS - I CAN FORGET ABOUT SOME OF THE SYMPTOMS.

> PROBLEM IS... WHEN I ATTEMPT TO DO THE PAPERWORK END - THESE

> COMPUTERS - OR EVEN PAPERS - GIVE ME FITS - WITH MY EYES MESSING UP

> AS THEY DO - SO I GET NO RELIEF FROM SYMPTOMS WHEN DOING ANYTHING

> OTHER THAN 1:1 WORK.

>

> YOU WROTE: " They will also need to recertify that you are still

> disabled every 2-3 years as long as you get SSDI. " AT THIS POINT,

> I'LL COUNT IT A BLESSING TO STILL BE AROUND 2 YEARS FROM NOW. THE

> PAST YEAR HAS BEEN A GIFT, AND I TRY TO TAKE EACH DAY AS ONE (THOUGH

> I ADMITTEDLY SOMETIMES FORGET, AS I TEND TO " ADJUST " TO THINGS -

> WHICH, AS ALL, IS BOTH GOOD AND BAD :-)

>

> REGARDING SYMPTOMS AND OTHER THINGS MORE IMPORTANT TO SSDI PEOPLE,

> YOU WROTE: " Things like gait disorder, ataxia and dysautonmia are

> more important than calling it MSA or something else (which the SSDI

> people do not know anyway). " ACTUALLY, AGAIN, THE REASON FOR AN MSA

> OR SIMILAR DIAGNOSIS IS TO PROVIDE SOME EVIDENCE AS TO

> THE " PROGRESSIVE DEGENERATION " OR " TERMINAL " CONDITION. OF COURSE,

> AGAIN, IF I (AND THEY) WILL SIMPLY LOOK BACK AT MY LAST YEAR, THERE

> IS NO NEED TO BE CONCERNED ABOUT A DIAGNOSIS OF THAT KIND - THE ONES

> I ALREADY HAVE WILL LIKELY SUFFICE.

>

> REGARDING TIMING... YOU WROTE: " Since you can not get Medicare

> until two years after you get SSDI, it may be well to apply now

> especially if things are moving faster. " AS I SAID, IT'S A BLESSING

> (AND PERPLEXITY TO MY DOCS) THAT I'M EVEN STILL AROUND NOW, SO I AM

> NOT CONCERNED ABOUT BENEFITS I MIGHT RECEIVE 2 YEARS DOWN THE ROAD

> (IF OUR GOVERNMENT IS EVEN ABLE TO STILL PROVIDE THEM AT THAT

> POINT).

>

> YOU CONTINUED: " I would definitely ask by the time you are falling

> often. Ask your doctor about disability and they will probably know

> what the criteria are for getting it. " WELL, AGAIN, IT WAS MY DOC

> (INTERNIST) WHO RECOMMENDED I GET IT. I HAVE BEEN DENYING IT ALL

> ALONG, BUT SHE IS MUCH MORE OBJECTIVE IN HER VIEW AND

> RECOMMENDATIONS. IN FACT, I THINK SHE MAY HAVE MENTIONED SOMETHING

> BEFORE THAT FATEFUL APPOINTMENT A COUPLE OF MONTHS AGO - BUT I JUST

> DID NOT HAVE " EARS TO HEAR " AT THAT TIME. YOU KNOW, THAT " MALE

> SELECTIVE HEARING LOSS " THING :-) {AS OPPOSED TO MY ORGANIC,

> PREMATURE, PROGRESSIVE, UNEXPLAINABLE (EXCEPT RE AUTONOMIC

> DYSFUNTION) HEARING LOSS.}

>

> FINALLY, YOU WROTE: " Note too, that almost every patient of brain

> disorders claims that stress makes the symptoms worse. You are not

> alone there. " THANKS. NEVER HURTS TO KNOW THAT I HAVE MORE

> COMMONALITIES :-)

>

> THANKS AGAIN BILL, AND ALL WHO READ AND REPLY. WHAT I WAS GETTING AT

> EARLIER, IN A NUTSHELL, IS THAT I WANT THIS TO WORK THE FIRST TIME.

> MY FAMILY HAS SUFFERED ENOUGH, AND I DON'T WANT THEM TO SUFFER

> NEEDLESSLY. AND, PERSONALLY, ADMITTEDLY SELFISHLY, IF I INDEED AM

> FACING END-OF-LIFE ISSUES HERE, THEN I DON'T WANT TO HAVE MY LAST

> MEMORIES OF MY FAMILY BEING THOSE OF THEM SUFFERING FOR ANY LACK.

> AFTER ALL, ONE OF MY GREATEST HONORS HAS BEEN TO PROVIDE FOR THEM AS

> WELL AS I COULD (AND YES, I REALIZE I'VE DONE THAT - TO NOW... THAT

> I HAVE TRULY DONE MY BEST, AND THAT IS ALL ANYONE CAN ASK :-)

>

> PAUL

>

> PS: TO THOSE OF YOU WHO ARE USED TO A MORE LIGHT-HEARTED PABLITO...

> HOPE I HAVEN'T LET YOU DOWN, BUT WE ALL HAVE ISSUES WHICH TEND TO

> WEIGH US DOWN FROM TIME TO TIME. I'VE STILL TRIED TO KEEP THIS

> LIGHT, BUT YOU KNOW... WHEN YOU'RE TALKING ABOUT SAYING " GOOD-BYE "

> TO A PART OF YOUR LIFE THAT HAS LITERALLY BEEN ONE OF THE MAIN

> FOCUSES, AND SOMETHING THAT I SPENT ABOUT A DECADE AFTER HIGH SCHOOL

> PREPARING FOR... AND HAVING TO DO SO AT LEAST 20 YEARS PRIOR TO WHEN

> YOU'D PLANNED ON - AND WITH NO REAL CONTROL IN THE SITUATION (OTHER

> THAN TO PERSIST UNTIL I TRULY CANNOT WORK AT ALL - WHICH MAY NOT BE

> THAT FAR DOWN THE ROAD...) IT CAN BE A BIT OF A BUMMER. OF COURSE,

> AT LEAST I GOT TO ENJOY SOME PROFESSIONAL SUCCESS. AND, AT LEAST MY

> WORK IS NOT, NOR HAS IT EVER BEEN - " MY LIFE " . MY LIFE HAS BEEN

> GROUNDED IN GOD, AND THEN MY FAMILY, WITH MY JOB FALLING SOMEWHERE IN

> AFTER THAT. AND... NOW... I ADMITTEDLY DO WHAT I DID TODAY,

> SPENDING THE BETTER PART OF THE DAY CONSTRUCTING THE FRAMEWORK FOR MY

> WIFE'S BED - BECAUSE CHANCES ARE SHE'LL REMEMBER THAT FAR MORE THAN

> ME SPENDING THE TIME EARNING A BIT OF INCOME (PLUS, I WAS ADMITTEDLY

> IN TOO BAD OF SHAPE TODAY TO DO ANY " JOB " WORK OR SEE ANYONE.)

>

> > ==============================================================

> >

> > pulalupu wrote:

> >

> > >Hi .

> > >

> > >I am an extrovert, so it is a problem for me. :-)

> > >

> > >Anyway, thanks for the comments. Valued as always.

> > >

> > >I was quite curious, as it seems any stress - emotional or

> physical

> > >seems to be bringing new " gems " to the surface.

> > >

> > >I've copied your post and will deliver to my internist. I don't

> have

> > >a neurologist. My neuro from Tulsa has not expressed a desire to

> see

> > >me again since he is not familiar with what is going on - and I

> > >haven't had a response from my neuro at Mayo in quite some time

> > >(except a brief phone message telling me not to pursue one avenue).

> > >

> > >We are considering going to Dr. on.

> > >

> > >Curious, have you been diagnosed with MSA? I have not. Just

> > >autonomic neuropathy. Of course, when doc at Mayo saw me,

> > >uncontrolled muscle movements were not such a significant issue.

> > >And, even now, they seem to have died back down.

> > >

> > >I wasn't concerned with Dx, but now that I am facing applying for

> > >disability, it seems a more firm diagnosis might be beneficial.

> > >(I've been as reluctant to pursue " disability " as I have been to

> use

> > >a cane, but the point has come that we can no longer live off my

> > >ability to generate an income - making basically 1/6 - at best -

> of

> > >what I was a year ago.)

> > >

> > >Catcha later.

> > >

> > >Pablito

> > >

>

>

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[Guest guest]

Hi ,

I just wanted to tell you I send my prayers and good wishes to you. I hope

that all goes smoothly for you in getting SSDI or other financial help for

you and your family.

My Tom was diagnosed Parkinson's 3/1999 and MSA 1/2000. He was 62 at the

time and had planned to retire at 65 but that didn't happen. Thankfully he

was able to get State Disability for a year and then SSDI. He wakes up and

thinks he's still selling cans for Crown, Cork & Seal, the company he worked

with for 32 years.

A friend sent this by email recently; If God leads you to it, He'll get you

through it.

That's the thought I try to keep foremost in my mind each day.

Sandy B.

Fremont, CA