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Kennedy's Disease Chat Transcript 04-20-02

Topic: Social Security & Disability

Chat Participants:


terryw
kdfl
bruce
butch 

Begin Chat


terryw -- {welcome terryw}
butch -- {welcome butch}
kdfl -- {welcome kdfl}
bruce -- {welcome bruce}
terryw -- Hello
butch -- Good morning Terry. Hope you are feeling much better. The last
chat we heard you were extremely tired by days end. Hope you are feeling better.
kdfl -- {welcome kdfl}
terryw -- I have been getting more sleep lately since the doc put me on Klonopin
butch -- I am so glad you came up with today's topic. I think it is one
which we must all face at some time in our lives. Just what is Klonopin
and what does it do?
terryw -- Klonopin is a relaxant that is also used for seizures for some
people. But for me it counter effects the pain med wiring me up so I cant sleep
butch -- Glad to hear that it is working for you.
terryw -- Hello Kdfl
kdfl -- Good morning or whatever it is where you are.
bruce -- {welcome bruce}
kdfl -- I should probably change my login name to JohnM
terryw -- that would be good John
bruce -- Good Morning World!
butch -- Kdfl and Bruce good to see you again.
bruce -- I am ready for fall now. We just had our August (temperatures in
the low to mid 90's every day.
terryw -- I fell a few weeks ago, down the steps into the garage
bruce -- Terry, you are doing a "Bruce", my fall into the garage was this
summer. It really messed me up. Are you recovering okay?
terryw -- had a glass in one hand when I fell, when I hit the ground hands
first it shattered, I was lucky I did not get cut up.
kdfl -- Terry, that is so easy to do. You think you are being careful
and all of a sudden you are on the floor.
terryw -- I am fine, just got a little bruised.
bruce -- You now what the spouse's continue to tell us. "Use your head and
your hands. Don't try to go up or down steps with something in your
hands?" I hear it all the time, but never quite have learned to listen....
terryw -- sometime spouse is not around and you have to do it yourself.
bruce -- I find that the trauma from a fall takes a lot out of me for
several days. Fortunately, I haven't had one in almost a year now. (knock on wood)
butch -- We all know our limitations but try to push them at times when we
think we can,
bruce -- Is that an male ego thing or just being stubborn?
kdfl -- I took care of the steps. My only step into the house is only
about 4" high and I have a ramp for that.
bruce -- I am not as fortunate. Our master bedroom is still upstairs. I
sometimes find it a blessing (that I can still do it) and other times a curse....
kdfl -- I think we all want to remain as independent as we can for as long
as we can. I'm not so sure it is a male thing as I see many older women doing the same.
terryw -- John,, I see now that the MDA site now puts the transcripts in
the right order. Did you notice that?
kdfl -- Terry, I didn't get a chance to check it out.
terryw -- I think they fixed it.
terryw -- I will Be right back, chat amongst yourselves for a min.
butch -- Hey Bruce-- How about our summer weather here in PA. it sure has
been hot here this past week.
bruce -- As I mentioned earlier, I am ready for Fall. 90's is just too hot....
terryw -- I am back
terryw -- I love Hot weather
kdfl -- I'm with you Terry. The hotter the better.
kdfl -- We also have warm weather but it isn't as hot as some of the
places further north.
butch -- Cold still affects me alot worse than the heat. We all don't get
our muscles to work as well during cold spells.
butch -- muscles is meant to be muscles. I must read what I type before
sending to the chat.
terryw -- I have the same problem butch,, I always press send before proof reading
terryw -- see
bruce -- Has anyone noticed that when you type that sometimes letters are
dropped or doubled even though you thought it was okay? I sometimes wonder
if the nerve signal didn't get to the fingers at the right time.
terryw -- yes bruce
terryw -- all the time
terryw -- But Bruce, I have that happen to me all the time when typing
bruce -- Butch, we still need to get together sometime maybe a weekend
lunch with the spouses someplace....
butch -- Bruce that is an excellent idea. We met John Coakley recently and
it was a very interesting meet.
bruce -- Terry, how has the circulation been in the legs and feet?
terryw -- My legs & feet still have the problems
bruce -- I have been working on improving the circulation in my legs and
feet - twice daily massage, etc. - it seems to have really helped this past winter.
terryw -- We have reserved our hotel rooms for the conference.
terryw -- I am not an expert but are there any ? about SS and disability?
terryw -- Expert
kdfl -- I got my disability and SS so long ago that I have forgotten what
I went through to get it. I really didn't have too much trouble. I had to
get the doctors approval but then it went pretty smoothly.
kdfl -- Terry, what happened to your talking to the computer? Has the
program given you problems?
terryw -- I have never reinstalled it.
bruce -- I run Windows XP and this speech recognition software came
installed. I really like it. But, you still have to proof your work.
terryw -- We are looking for volunteers to be a chat moderator like
myself, Susanne & patrick.
terryw -- to host chats every now & then
butch -- Terry--I understand you applied for disability. How long did it
take? Did you first have to go on short term disability before getting
total disability? compensation?
terryw -- I filed on 11/11/2000, started collecting STD 90 days later, I
filed for SSD on 11/12/2000 started getting it on 5/1/2001.
kdfl -- I went on short term disability for six months. I then went to
long term with my SS kicking in.
terryw -- my LTD kicked in on 6/1/2001
bruce -- Within the year I will probably go on STD and move towards LTD
and SSD after that. Terry, did you have to hire an attorney to help get
SSD or was it pretty clean cut? Were you denied the first time?
kdfl -- I didn't have an attorney. Everything went pretty smoothly. I
think if you get the right proof documents there isn't too much of a problem.
bruce -- I have always heard that SS turns down the first one or two
applications to decide if you are serious or not. A friend had to hire an
attorney before he finally received approval.
terryw -- Bruce, Its pretty clean cut as long as you have tons of
supporting documentation from your Doctors,, Not your Regular doctor, Get
a leading Neuro doctor to write up the recommendation and long term effects.
terryw -- No Cure & no Treatment at this time, Progressive degenerative
disease and good terms for him to use
terryw -- disabling
terryw -- Make sure they state the DNA test for positive ID in the
paperwork so there is no doubt in their minds
bruce -- I stopped seeing an specialist a couple of years ago after they
said they really couldn't do anything to help. Fischbeck was my original
specialist. I guess I might have to go back and see these guys again.
terryw -- I can scan my letter for anyone that is interested to see from my top

doctor at UCLA
bruce -- Please - that would help. Thank you.
terryw -- E-mail me to remind me OK Bruce
butch -- Terry I would appreciate seeing your letter from your doctor.
terryw -- OK
terryw -- I need to dig it up in the files
kdfl -- I got my approvals while I was still diagnosed with ALS.
bruce -- How about LTD? I have been reading up on this and after two years
they review the disability and if they determine you are qualified for
"any" type work, they can reduce or eliminate the payments. Do you have
something like this in your plan?
terryw -- I have not had to deal with that bruce.
terryw -- Any type of work for me is out of the ?. I cant type for long
straight. Cant write more than a few lines without my writing going to
crap, after talking a few mins my voice goes hoarse, I get really tired
just sitting up for hours.
kdfl -- Bruce, I guess when they saw ALS they felt they didn't have to
question me any further.
bruce -- I guess that could be considered a side benefit (if there is such
a thing) for a mis-diagnosis.
butch -- When you have not applied through the system for disability, there
are so many questions we have. How to apply. When should we apply? How
long does it take to secure it? What type of medical insurance can we get
if we aren't ready for SS.
terryw -- you can go here to get many of them answered
http://www.ssa.gov/disability/
kdfl -- I'm still able to talk pretty good. I am a volunteer teacher for
our computer. I really enjoy it. I also make house calls to help people in
our Senior community.
bruce -- I spoke to our company doctor about applying for LTD and SSD. He
said you have to treat this whole process like you would any business
deal. Be patient. Understand that there will be opposing points of view.
Don't get angry. Document everything. Prepare an excellent presentation binder, etc.
terryw -- Exactly Bruce
kdfl -- When I went on SS, Medicare became my primary health insurance
with my employer as my secondary.
terryw -- I am on my wifes medical plan
bruce -- Well, I have a lot of patience, as long as I get what I want
RIGHT NOW!
terryw -- LOL
bruce -- At times, even though I have been a manager for years, I still
become a little overwhelmed with all the forms, documentation, visits,
reviews, interviews, etc. to apply for LTD and SSD. It is like preparing
my income tax forms... ugly.
terryw -- our 24hr chat room went away on the site. not many used it and
the wanted to begin charging for it.
kdfl -- I think we are just too busy to try and go on a chat that isn't
scheduled in advance. There are just too many hours in a day.
bruce -- So, John and Terry, do I get the opinion that applying and being
approved for SSD wasn't too difficult?
terryw -- when you go in to file for SSD, have everything you can think
of, school records, report cards, birth cert, Military records, all past
jobs since you were 18, addresses of those employers, Pay at each of those
jobs. They want all of this.
terryw -- I had all this info with me when I went and they were surprised.
kdfl -- Yes Bruce, I don't really feel that I had too much problem getting accepted.
terryw -- I got approved No Problem
terryw -- they also want any marriage info you may have, how many
marriages, who you were married to and for how long etc.
terryw -- places you lived and from what dates
terryw -- so much
terryw -- be prepared
bruce -- Thanks, this is good stuff. I will need to develop a checklist to
make certain I have everything.
terryw -- that's just most of what I remember
terryw -- Basically they want your life story WITH DETAILS
kdfl -- I don't remember having all the things that Terry is talking about
but then that was ten years ago and you know how it is as we get older.
bruce -- Which was more difficult - SSD or LTD?
terryw -- SSD wanted way more information
terryw -- LTD gave me more of a hassle
butch -- I know that I should apply for SSD but I would like to keep
working as long as I can. It is a personal pride thing by not depending on
anyone else or accepting help because of my particular situation.
bruce -- I am write there with you on "personal pride". Cindy said it will
be the death of me someday.
bruce -- I am "right" there... (sorry)
terryw -- Butch, how would you feel if your company was bought out by
another after you working all those years and the new company did not
offer a LTD plan. You would be screwed, excuse my French. Your employer
would not care that you gave 20 yrs. You are just a number to them. Think
about YOU, you come first. Forget the pride thing.
terryw -- that's what I had to do
butch -- Write --right We know what you mean. Some times our fingers and
brains are too far apart.
terryw -- If you lose that LTD benefit that's a bad thing, get it while you can
kdfl -- I guess I'm with Terry on the PRIDE thing. We have to look out for
us and do everything we can to make life as good as possible.
terryw -- Companies go under everyday, just ask ENRON employees
bruce -- Pride and Patience - that's me. Just a couple of years ago I
decided that Cindy wasn't responding to an outdoor tree trimming as
quickly as "I wanted." So, I got our ladder out and began to climb up. It
was pretty tough climbing and about 10 feet up the ladder my weight pulled
the ladder away from the tree. For ten seconds I was suspended in mid air.
Then I went over backwards with the ladder still in my hands. I hit the
ground hard and lay there with the ladder on top of me. Fortunately I wasn't hurt.
terryw -- WOW Bruce
terryw -- you think they are going tell you that the company is about to
be bought, or go under. Think again
butch -- Well as a matter of fact my company was bought out by a much
larger company and in January this year after forth and one half years
with the company they did away with my position as asst. foreman. I am
glad they rescinded and kept me in my present situation.
terryw -- This is all just my personal opinion.
terryw -- Look out for #1
bruce -- Life's most embarrassing moments.... There are stories upon stories
that I could tell....
kdfl -- Bruce, I think all of us could expound on "Life's Most Embarrassing
Moments". Sometimes even more than MOMENTS.
terryw -- because to them you are just a number on a paycheck.
terryw -- OK, I am off my soapbox now.
bruce -- I understand, Terry and John. I have been coming to that
realization recently, but I still enjoy working and the company has been
very accommodating.
terryw -- I did to bruce and I miss it but I could not jeopardize loosing
my LTD benefit.
terryw -- my company was in the process of being sold and when I asked hr
if they could tell me if the new Company offered LTD they said they could
not guarantee me that. So I called a high up executive friend of mine in
the Company to get his opinion on if the sale was going to happen and all
he told me was take my LDT now (HINT HINT)
terryw -- So I did
terryw -- I was ready to do it anyways but this forced the situation
butch -- It sounds if that was good advice for you Terry. It is good to
have friends in high places.
terryw -- Yes it is
kdfl -- That's what they say, it isn't WHAT you know but WHO you know.
butch -- Bruce Have you ever read any of the stories from Coakley's
corner? If you need a laugh-- check it out.
bruce -- I have, Terry. All I can say is that "I have been there." I loved
the one about dumping the drink on the floor. That has happened to me
several times at work with coffee.
bruce -- Sorry, I meant "Butch"
bruce -- Well, I have to run, but I appreciate all the insight from you
two (Terry and John). I need to get off my "high horse" and think this
through further. You guys take care and stay healthy. Until next time.
terryw -- Bye Bruce
bruce -- {goodbye bruce}
terryw -- I hope this chat transcript will give others here today some
things to think seriously about.
terryw -- and those who could not make it to the chat
terryw -- remember
www.kennedysdisease.org
your KD information website
(PLUG PLUG)
butch -- Terry--Alistair Fyfe used to have a personal story at our site. I
see it is no longer there. Did something happen?
terryw -- Butch I can address you off line on this topic if you wish. OK
terryw -- you can e-mail me butch if that's OK?
butch -- Sure whenever you like. I am sure you have my e-mail address.
terryw -- Yes I do, I will E-mail you then OK
terryw -- we are nearing the end of the chat
kdfl -- I'll try to get this one done for you this time Terry. Computer is
back up and running with a new memory chip.
terryw -- That's great John
terryw -- does anyone have anything else?
kdfl -- Anna Lea just signed on to her MSN account. I don't know if you
know of he experience with KD.
terryw -- Yes we have heard.
kdfl -- HER
terryw -- Her husband just fell & got hurt
terryw -- fractured his pelvis
kdfl -- Looks like Charley Lea had a little trouble also and is in rehab.
That's all I know right now.
kdfl -- I guess I'll be signing off now also. We have a memorial to go to
for a neighbor who passed away.
terryw -- OK,, Me to.. Thanks all for coming. Bye
kdfl -- {goodbye kdfl}
terryw -- we are waiting for updates
terryw -- bye
butch -- Good to talk with you Terry and John. Thanks for all the info.
Stay healthy until the next chat.Good bye for now.
terryw -- {goodbye terryw}
butch -- {goodbye butch}


End Chat

ennedy's Disease Chat Transcript 04-06-02 Topics: Social Security & Disability




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