Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every few days a baby boy is born with this DNA defect"

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

2003 - October 04, Social Security - Disability

Kennedy's Disease Chat Transcript 10-4-2003

Topic: Social Security Disability

Host: Bruce Gaughran

Chat Participants:

bruce
billeric
michigander
johnm
bruce
butch
murf
don48312

BEGIN CHAT

bruce -- Good Morning, how are you this wonderful day?
butch -- Good morning Bruce--It is 47 deg in Penna. I guess you are glad
you moved south to warmer climates.
bruce -- We have been cool down here this past week. Lows in the 40's and
50's and highs in the 70's. It was a major change from the previous three
weeks.
butch -- Not only is it cool but, it is raining again.
bruce -- The high today is supposed to be 75.
butch -- Did you get on line with Dr. LaSpada on thurs night?
bruce -- No, I had planned to, but we got tied up in something else.
ANything new or exciting?
bruce -- You can have the cool damp temperatures - they play hell on my
muscles and joints.
bruce -- My brother, another KD'r, moved to Arizona several years ago. He
said the year-round heat does wonders for his condition. He previously
lived in Minnesota.
butch -- Last chat you said you had a major change in your condition. I
have been having problems which I don't normally have. No, I wasn't on the
chat Thurs but I was wondering about its content.
bruce -- Thank goodness, it was only a temporary change. Things are fine
again.
bruce -- What kind of problems are you having right now?
butch -- Are you going to the convention and are you driving to NOLA. I
was thinking about driving from PA. It is about 1175 miles. I have been
having trouble with my thigh muscles.
bruce -- No, we opted out this year. We have a family gathering about the
same time. WIth the move, the new house, the family gathering, it was just
too much at one time.
bruce -- What is going on with the thighs?
butch -- The muscles get tight then you walk differently causing other
muscle problems.
bruce -- Okay, I understand. I call it the stiff-legged walk. That happens
to me at times.
billeric -- {welcome billeric}
bruce -- Wecome!
butch -- Hi Bill, How are you?
bruce -- What is going on in your world Bill?
butch -- I guess only the "B" section is here today. Bill, Bruce and
Butch.
bruce -- I am not certain whether Terry or Susanne will be joining us
today. They have their house-warming party today.
mischigander -- {welcome mischigander}
bruce -- Welcom Mischigander
bruce -- What do we call you (for short) this morning?
butch -- Hi Mischigander. What is your name and do you or someone in your
family have KD?
billeric -- Hi guys, In the process of moving stuff to our kids in
Cincinnati and Atlanta. We are half way there. Tomorrow the van and u-haul
head for Atlanta.
billeric -- Not a great summer for me. 3 falls including one down the
stairs. Sold the house with stairs so that should help.
billeric -- My falls this year seem to stem from one of my legs suddenly
giving out leaving me on the floor. Does this happen to anyone else?
butch -- Mosdt of my falls involve catching my heel or toe and not being
able to catch myself before hitting the floor.
mischigander -- Billeric...this is RickEric formally Mischigander...use to
belong to a FSH support group for 10 years in Oregon...yes we'd exchange
fall "crash and burn" stories every month
bruce -- I understand. I have been doing a lot of exercises to eliminate
or minimize the dropped toe. It seems to help.
bruce -- Bill - smart move. Since we moved into a single level house -
falls have declined dramatically and the muscles are better because of it.
bruce -- Bill, did you buy in the same area?
billeric -- We have a house in Sun City Az. so we will spend most of the
year there. Probably spend 3 mo. in Minnesota. Had too many houses to
maintain.
bruce -- Butch, I think you said have not applied for SS Disability. Is
that correct? How about you Bill?
butch -- Bruce, No I haven't applied yet but, will be doing so very soon.
I hate having to stating that I am disabled. I know alot of folks are
worse off than I am. Bill, there are some perks from disibility.
bruce -- Bill, no advantage to someone already on SS. There is an
advantage for someone not already on, however.
billeric -- Thanks Bruce.
bruce -- Mischigander - I gather you are in or from Michigan - correct?
mischigander -- Originally from Michigan, H.S. in NY state, 25 yrs in
Oregon, past yr in SLC
bruce -- Is this your first time to the KD Chatroom?
mischigander -- 1st time to chatroom...lost a yr of Quest in last yrs
move...borrowing daughters computer
bruce -- Mischigander - welcome, again. What should we call you -
Mischigander is tough to type every time.
mischigander -- would love to meetanyone who ever travels thru SLC...yrs
ago found VT pen-pal...nothing since......you can call me Rick
billeric -- Rick eric, we will get through slc in Nov. If you give me a
phone number I will give you a ring. We have friends in Ogden we visit
yearly.
billeric -- Butch, I am already on social security. Is there any advantage
in applying for disability s.s.
bruce -- I have put together a 21 page guide based upon my experience with
the SS Adm this summer. I was approved in six weeks - they said it was
almost a record. The guide should be available on the KD site within a
week or so.
butch -- Thanks Bruce, I will look forward to using your info to make my
transition easier.
bruce -- Mischigander - are you retired? Are you on Social Security -
Disability?
john-c. -- {welcome john-c.}
bruce -- Butch - use me as a resource if you like. I have several 'helpful
hints' in the guide to smooth the process. It is a great benefit to me -
since I didn't plan on receiving the benefits until 62.
bruce -- Welcome John
john-c. -- Hi all
bruce -- Rick - do you have KD (or someone in your family)?
mischigander -- Bruce, I have had symptoms of KD for just over 10
years...don't know if my young grandkids do??
bruce -- Rick, have you had the KD DNA blood test to confirm the symptoms?
butch -- Rick--You say you have symptoms of KD. Did you ever have tests to
conform KD or not?
mischigander -- Yes, U 0f Penn confirmed back in 1992?? MY phone number for
anyone coming thru SLC is 801-918-1046
butch -- Hi Johnc--Hope you got oer the hoe down. It was a great time.
john-c. -- After 2 weeks, almost back to normal. It took a LOT out this
year, but worth it to be able to see a few good friends.
bruce -- John, I can only assume from your current work patterm, that you
don't plan on retiring for several years. Is that correct?
johnm -- {welcome johnm}
john-c. -- At least 10. I'll stay the course as long as the mind & body
hold out.
john-c. -- But, I think the mind is s l o w ing down.
bruce -- Butch, do you have MS Word on your computer?
bruce -- Welcome Johnm
johnm -- Good Morning All
don48312 -- {welcome don48312}
john-c. -- Hey Johm m -- thanks for the smiles!!
johnm -- John-c, hope the smiles don't interupt your work too much.
john-c. -- Johnm - they are just perfect!
bruce -- Welcome Don
butch -- Hi Johnm--How are you?
don48312 -- morning all
butch -- Hey Don. Good to see you again.
bruce -- Don, I can't remember. Are you retired? Are you on SS-
Disability?
johnm -- I couldn't be any better. I got up this morning with no new
problems.
john-c. -- Hi Don, Haven't seen you for a month
bruce -- Johnm - is that how you judge your days?
billeric -- Sounds like a good day Johnm.
john-c. -- Rick & Bill-- are you 2 "erics" related?
murf -- {welcome murf}
john-c. -- Howdy Murray
bruce -- Well guys, I had this whole chat planned out for Social
Security-Disability, but if you don't need it. We should just chat. Your
thoughts?
john-c. -- You're the boss, Bruce
murf -- Good morning all
bruce -- Welcome Murf
billeric -- Don't think so but with my family background--who knows?
don48312 -- mischigander, what is SLC
mischigander -- SLC...Salt Lake City..my last name starts with Lock...maybe
I'm related to Billeric
don48312 -- tu mich
butch -- Bruce--I think SS disibility is a very good topic. I know some
have alot of trouble getting approved. I guess it all depends on your info
provided to SS administration.
johnm -- I've been on SS disability for 11 years now. I was very fortunate
that my employer let me go on Long Term Disability when I did.
don48312 -- retired, federal pension, no ss yet, on medicare
bruce -- Well, it might be more enjoyable to just chat about a variety of
subjects if no one has the need to learn more about SS-D at this time. Did
anyone attend the LaSpade MDA chat?
johnm -- Bruce, I was there and have been trying to get the transcript but
it keeps telling me that it is being edited and will be posted shortly.
don48312 -- i was at dr laspada chat
bruce -- Don, did anything interesting come out of the chat?
don48312 -- not sure to be honest.
don48312 -- waiting for transcript
billeric -- I have been on ss for 6 years. I found them very easy to work
with.
don48312 -- john-c ill mail the IRS pubs to hotel for NOLA
john-c. -- Thanks, Don. That makes more sense.
john-c. -- ALL: Don has gotten IRS "deductability" info for those going to
New Orleans.
mischigander -- Bruce, I'm 57 and went from 60 hours a week of work to
20... so in the future knowing how to go on disability will be great!
bruce -- Bill, when you went on SS-D, did you receive Medicare right away
or have to wait the two years?
bruce -- Okay, lets do the Disability chat...
billeric -- Bruce, I had to wait untill I was 65. 3 years.
bruce -- In regards to SS-D, 'preparation' is half the battle. Below are
several comments on how to help ease the reviewer (and others) through
your disability application process. 1) Discuss with your manager your
intentions and the need for their support. 2) Advise your doctor(s) and
his/her staff that you are applying for Social Security-Disability
benefits. a) Ask the doctor(s) for his/her support. b) Review your current
symptoms and any health-related issues that affect your ability to perform
your current duties. 3) In the initial submission, provide the reviewer
with as much information as possible - the more the better in this case.
a) The more information the reviewer has to work with initially, the less
information he/she has to write off for - meaning a delay in the process.
i) The more information requested by the reviewer, the greater the chance
the doctor's office will not be able to find it and/or it will be delayed.
b) If you control the information, you can make certain the most important
information is in the front and that the important sections are
highlighted so the reviewer can easily find the critical information
he/she needs to make a decision. c) Make certain the information submitted
is readable and prioritized - in the order you want it presented. d) Be
sure to sign and date all the forms. e) Use the 'Supplemental Section' to
educate the reviewer on what Kennedy's Disease (SBMA) is, its symptoms,
its treatment, etc. 4) Provide the information in a 'report' format -
tabbed, with page numbers and a table of contents, etc. - so the reviewer
can easily locate the information he/she is looking for. 5) Keep a copy of
everything submitted - just in case. a) Prepare a three-ring binder with
the major sections tabbed. i) In this way all of your information is in
one place and easy to find. ii) The information should be in the same
order and page numbers as submitted with the disability application. b) If
called, refer to the information by section and page number so the
reviewer can easily find the information he/she is looking for. c) Take
the binder with you to any reviews or hearings. 6) Be patient and
responsive to follow-up inquiries by the reviewer. 7) If needed, follow-up
with your doctor(s) to insure he/she has provided the requested
information.
johnm -- I went on Medicare as soon as I went in SS Disability.
bruce -- I just sent a lot of info - but, it is meant for reading later.
(For the record so to speak). It comes from my personal experience with
the SS Adm.
john-c. -- OK Bruce: @#$%^&* you can really type fast!! If you are on full
disability at age 61 and get $1.00 a month, what happens to the disability
payment when you turn 65 & are eligible for SS??
bruce -- You can't get both - SS-D is only there until you turn 65 (or
66).
johnm -- John-c, not both. I guess I just got my Social Security check
when I went on disability from my company.
john-c. -- That's (one aamount) really what I thought.
bruce -- I think the key message and John might be able to confirm this
is: Get copies of all your medical records from your doctors, keep a
journal of your health related issues, and submit more information than
asked for if at all possible.
johnm -- John-c, my SSD didn't change when I got to 65.
bruce -- The benefit of SS-D for me (age 56) is I received my full benefit
amount as if I retired at 66.
john-c. -- Johnm-- so you get BOTH disability and SS$ ??
bruce -- Now, I also received Long-Term Disability from my company. The
SS-D benefit is deducted from the LTD benefit amount, however.
johnm -- Bruce, that is the same way mine worked.
john-c. -- Bruce: How long does that LTD $ come to you?
johnm -- John-c, my LTD $ came to me until I reached 65 and retired. Now
it just my retirement income.
johnm -- Plus Social Security $.
john-c. -- Again, that's how I understood it. Thanks for confirming it
though.
bruce -- Disability under Social Security is based on your inability to
work. You will be considered disabled if you cannot do work you did before
and they decide that you cannot adjust to other work because of your
medical condition(s). Your disability also must last or be expected to
last for at least a year or to result in death. [Guide Note: Progressive
disorders are different and this is why you need to work with your doctor
in order to explain the gradual and continual loss of certain functions]
bruce -- The real key is that your employer and your doctor agree that you
cannot perform the work you are currently responsible for and that your
condition will continue to decline - making it 'unaffordable' for them to
retrain you. (My opinion anyway)
bruce -- The SSA maintains a list of impairments for each of the major
body systems that are so severe they automatically mean you are disabled.
If your condition is not on the list, they have to decide if it is of
equal severity to an impairment on the list. If it is, they will find that
you are disabled. If it is not, they go to the next step. [Guide Note:
Include in your description of KD a reference to the disease's
similarities to ALS (ALS is on the list of impairments)]
bruce -- I think another key message is to not wait until you are totally
disabled before applying. The process could take 90-120 days or longer
(with appeals).
bruce -- If you cannot do the work you did in the past, they see if you
are able to adjust to other work. They consider your medical conditions
and your age, education, past work experience and any transferable skills
you may have. If you cannot adjust to other work, your claim will be
approved. If you can, your claim will be denied. [Guide Note: Include some
form of personal history reflecting the progressive nature of the
disorder]
bruce -- Since I was considered untrainable and uneducated - it was an
easy call for the SSA.
johnm -- My initial diagnoses was ALS so that probably entered into how my
application went through.
bruce -- Johnm - YEP - that is probably true. But, KD is becoming
something that the review board is becoming more familiar with each year.
bruce -- In general, your benefits will continue as long as you are
disabled. However, the SSA will review your case periodically to see if
you are still disabled. The frequency of the reviews depends on the
expectation of recovery. . If medical improvement is "expected," your case
normally will be reviewed within six to 18 months. . If medical
improvement is "possible," your case normally will be reviewed no sooner
than three years. . If medical improvement is "not expected," your case
normally will be reviewed no sooner than seven years. [Guide Note:
Progressive disorders normally fall into this category]
bruce -- For example, they plan on reviewing my case every seven years.
I'll be 63 at that time.
john-c. -- LOL, Bruce for the 2 "uns".
butch -- WOW!!What a great amount of information you all have shared
today. It certainly should make the SSA disibility process alot easier.
THANKS.
bruce -- I understand where Butch is coming from. I was there mentally
also, but my company Disability Manager told me to swallow my pride and go
for it. I paid for it and deserve it. I still wasn't sure, but Cindy
kicked me in the butt and that was the motivation I needed.
john-c. -- ALL: At the conf in NOLA we have the head of SSA/Disability for
30 minutes of a talk + an hour of Q & A.
bruce -- The SSA recommended that they automatically deposit the checks
for SS-D benefits into your checking or savings account. It is nice to see
that deposit around the 15th of each month.
billeric -- Thanks for the chat guys. Got to check out the u-haul for
tomorrows run. Take care and no falls.
mischigander -- What's NOLA???
john-c. -- New Orleans, LA
john-c. -- Thanks.....With the ?? I have from this conversation, I'll be
able to be more precise & specific when I meet her.
bruce -- Take care Bill. Drive Safe
billeric -- {goodbye billeric}
butch -- So long Bill. Hpope the move goes smoothly. See you next chat.
bruce -- I was told ahead of time to expect the worst and be prepared for
one or two appeals. When I received approval in six weeks, I was delighted
as well as shocked.
john-c. -- Rick: the KDA is having a conference Nov 5, 6, & 7th in NOLA.
Do you need info?
johnm -- Bruce, I don't believe I had any trouble either.
bruce -- Again, I think the key is in that long paragraph I sent below, be
prepared, expect the worst, make certain you have copies of all the
medical information, have your exployer's support, etc.
mischigander -- JOHNc that would be great, will anyone be taking minutes??
john-c. -- Bruce, the 6 weeks shows youwent into the process with
knowledge and a lot of homework: but it paid off in spades.
john-c. -- Give me email address & I'll drop you a note.
mischigander -- E-MAIL address This e-mail address is being protected from spambots. You need JavaScript enabled to view it
bruce -- Does anyone else have any thoughts or experiences to share on
their SS-D process?
butch -- I guess I was not too smart when I accepted early retirement from
my company. I didn't look into LTD and what it might have ment to me. I
wish I had the info I needed because it might have made the disibility
problem financially easier.
bruce -- SS-D will be helpful, Butch.
john-c. -- We all have heard horror srories about denials, lawyers,
appeals, etc. but you John & Bruce have shown that it can be almost
pleasant if done right.
bruce -- The best piece of advice this doctor told me was: consider the
application process 'business' - personal business (your financial
security)
johnm -- Bruce is absolutely right about going in with ALL the information
you can get your hands on.
john-c. -- 10-4 Rick
butch -- OK Coakley--What is your quip of the day?
john-c. -- I defer to Johnm today. He writes most of my material.
johnm -- John-c, I don't have any today that I can safely put in this
chat.
bruce -- The other thing is to not take the process including denials or
request for additional information 'personal'.
mischigander -- butch, I feel similarly bad at looking at financial
alternative...my spouses job relocated to SLC and I passed up my LTC
insurance in Oregon and now only work PT... 20 hrs instead of 60
john-c. -- Butch: can that be re-opened thru the HR dep't as it looks
(from here) like you might have been short-changed.
butch -- I don't knbow if HR can open that can of worms or not. I'll have
to check into it.
bruce -- Another nice benefit is that I did not have to wait until age 62
and take a reduced amount for early retirement. That over my life is some
big bucks.
butch -- As you can see I still have trouble hitting only one key at a
time.
bruce -- I will also offer my services/support to anyone involved in the
process. If I can help in any way, don't hesitate to ask.
mischigander -- Your topic today was extra informative and excited to have
found others with KD... thank you all
bruce -- Don, what did LaSpada have to say on the MDA chat?
bruce -- Rick, come join us every other week. We enjoy the company.
john-c. -- Good to meet you Rick.
bruce -- Murf, you have been exceptionally quiet today. When is your big
trip?
murf -- I got up and loged on before I woke-up, needed coffee and just
listening, goog chat!
butch -- Rick--You will learn something new at each chat. We always come
away with a smile or just sharing our troubles with someone who really
ujnderstands the troubles.
john-c. -- ....."My wife & I divorced over Religious differences: she
thought she was God & I didn't"...
bruce -- GOOD ONE!
butch -- Johnc--You will be going to hell for sure.
murf -- good chat
bruce -- Well, before we lose anyone else. Thanks for attending. I hope to
talk with you again in a couple of weeks. Be safe, healthy and happy.
mischigander -- Got to run...have manditory meeting at my PT job when you
have your next chat... so will sign up for KDA when I get a chance...
anyones welcome to use my e-mail address or phone number I listed ...
thanks again, glad to have met you all
bruce -- Take care, Rick.
murf -- Bye Rick will we meet you in NOLA?
johnm -- Good being her AGAIN. Always enjoy what others have to say.
butch -- So long Bruce--Good chat, Good interaction.So long Rick.
bruce -- As the sun sets on another chat .....
john-c. -- Butch, it was great that you all came to the party. I have
MaryLou's tongs. Have forgotten to mail them for 2 weks. I'll see you all
in 2 weeks. Stay upright!
john-c. -- Bye all. Thanks everyone.
john-c. -- {goodbye john-c.}
murf -- John-c will we be talking later today?
murf -- OK+
bruce -- At noon EDT?
butch -- Must go for now. Stay healthy and strong. See you in 2 weeks.
murf -- Talk to you then Bruce.
butch -- {goodbye butch}
johnm -- Bye All.
johnm -- {goodbye johnm}
murf -- Bye all, Take care.
murf -- {goodbye murf}
bruce -- Take care....
bruce -- {goodbye bruce}

END CHAT