I'm not going to comment on the diagnostic process anymore. I would like to say that as a retired lawyer that there is absolutely no need to involve a lawyer in an initial SSDI application. There is no legal expertise required and if one felt that they did need assistance there are better folks to turn to. Anyone with a medical, insurance, or social services background would probably be fine. Getting the insurance folks from a private disability policy is terrific as they have a vested interest in getting it right. Even someone with a financial or business background would probably be helpful. The system was not intended to include lawyers at the fIrst stage and does not officially bring them in until the appeals process. I will add though that if someone does not feel comfortable doing it themselves (try Phil Hardt's stuff, it's better than a lawyer's) you should welcome assistance from anyone that you trust even if that person happens to be a lawyer.

DJ and Indigo thank you for your messages you brought light into my life.
I have done a ton of reading on this and the "sacred" lab tests is not the only test to diag this condition I also read that huntingson disease can show normal lab tests because you are in the "pre huntingston disease phase" and 5 years it shows up. So I can see why some choose not to be tested. Now before anyone goes psycho on my about this information I have read on mayo clinics web site about this, it is an opinion. I will wait till I see my brain doctor and go from there. But thank you again to you two for calming me down

I agree with Howard - an attorney is not necessarily needed. When I submitted my husband's paperwork it was approved the first
time. My BIL had gone through an attorney and had gotten nowhere - after 3-4 years I asked if I could help him and I did. It was
approved right away. Sadly, however, the attorney took his cut even he didn't help in getting it accomplished. Backpay is awarded so
if you do not get it approved the first time you have not lost anything.

Thank you for your input. I have not signed the retainer paperwork yet so should I choose to do this on my own (with legal guidence) .

Unfortunatly I have also come to the conclusion that we are dealing with the unknown if we were dealing with the known we would have a cure.
We dont have a cure so I will put my faith in my Lord and move forward. I have received some great advise and suggestions to all of this and I will let "him" sort it out with me.
No one is an expert on this disease but many of you have suffered for many years and I feel for you.

God bless you all

Nancy

True true. My husband was already symptomatic, and the neurologist was pretty sure it was HD. He did not go through the counseling process, and we had the results within 2 weeks. As for his initial SSDI application, he was already mid process applying for SSDI with a friend's help, and having the neurologist include his documentation, changing the diagnosis to HD did the trick for us. He was approved on the first try.

Phil Hardt's article already linked in this thread is a great tool. Many of the questions are focused on your abilities to perform every day tasks and tasks related to your chosen profession. I would not go through a lawyer for this first application. I would definitely have medical documentation. The cut the lawyer takes is quite large.

Take care,
Patty

I applied myself the first time and was denied. I had an advocate apply for me the second time and it was approved. However, this was before HD was on the Compassionate Allowance List. Hopefully that will make things a little easier and faster.

As far as the test for HD. It is a blood test. Any doctor can order it. I had always read that you were required to go to a HD Center of Excellence, have the counseling with a psychiatrist, then get the blood test, then have more counseling. This took a couple of months to complete if I remember right. Then my sister told me her regular doctor told her if she wanted to test, she could have it done there.

Long story short, I went to my regular General Practitioner and he ordered the blood test for me. We kept it off my record. I have two sisters who also tested this way. My cousin tested this way, all in different states. The blood is drawn, then sent off to a lab for testing. It takes about 10 days or two weeks to get the results.

I think it is dependent on the person whether or not they need counseling prior to testing. My son went through the formal process of testing by going to a COE, etc. For him this was the right way to do it since he was young and not symptomatic. He wanted to know so he could start a family. Thank God he is negative!

The blood test shows your HD CAG number. It does not change with time. You are born with the number and die with the number always being the same. What does show up in time are symptoms. If you have a CAG count that is within the HD positive range, and don't die of something else first, you will be symptomatic at some point in your life. Lower numbers usually mean you start showing symptoms later in life. Of course, nothing is absolute.

Good luck with your SSDI. I hope things go smoothly for you.

Patty



Edited 1 time(s). Last edit at 03/16/2013 09:01AM by pattyxlynn.

Patty-
You could not have been more correct or explained better the issue of the blood test. Also, your opinion on feeding tubes was very practical. You managed to contain the emotion explaining a couple of emotional issues. Good job! Keep contributing, you will be a great asset here!
Howard

Thanks Howard. I know how polarizing and emotional these topics can be. I've had a lot of help from this board and am happy to contribute when I can.

Patty

My opinion would be to try to get SSDI on your own before using an attorney. When I applied for my husband we had no trouble
and he was granted SSDI on the first try. My BIL in another state used an attorney. After 2-3 years and no luck I told him I would help
him. I did and we did get him SSDI with no problem, however, his attorney took a portion of his money as he had retained an attorney
prior who had tried to help him.

Some doctors will order the genetic test without using the protocol, mine is willing to for my kids. One expert on HD at a University said be careful getting a lawyer especially if they get a percentage of the back pay he said some will not try to get approved the first time so they make more money.
Melissa

Well Yesterday was my appointment with the nero dr. He did numerous exercises with me and studied my ct scan and said, I am sorry to say dear but you have huntinson disease, we can do an mri and a bunch of lab tests but I have seen over 325 pts with HD and you are more advanced then them. Doing the MRI next week but I did apply for ssi under compassionate diseases. Listing early unset of adult huntinson disease. Followed all of Phil H's tips and I will let you all know how long it takes to get approved. Now SSi did call me yesterday to ask a bunch of question of me because I stated I could not do an inpt interview hopefully this is going fast. Also my daughter is having the lab tests done.
Hear is something odd that was told to me by the NEO dr. He stated that the reason I am getting earlier than my mother (70) is from the head trauma I had when I was about 6yrs old. I got in the way of a bat during a baseball game with older men. Any head trauma can effect you later in life and it has sent my HD on warp speed. Who knows

I'm sorry your news was not better. I hope you have some good family and friends to help you through this time. There are many good treatments to help control the symptoms of Huntingtons and allow a person a more fulfilling life. Good luck in your journey.

Yes, it has been well documented that HD in the setting of brain injury can affect age of onset.

PattyC

If I applied now instead of when I first became symptomatic and it was on the compassionate list, I would try on my own. The attorney's I contacted didn't want to talk until you were turned down the first time.

Mike

has anyone applied for ssi AFTER this disease was moved to compassionate level ? I am just trying to get a time frame, I keeo seeing 10 days which I think is impossible but hey let me know how long it took please.

gabbi, I know nothing about the Compassionate Allowance consideration as it relates to HD and SSDI.

I can share with you that five years or so ago, I had to take on the SSDI battle and it was tricky because of my wife's last date insured, which was five years after she stopped working full-time. She took time off after we got married and had a baby. So we were in a fix in proving her disability prior to her last insured date (which was two years prior to when we first filed).

They denied us the first time (with an SSDI attorney), and we got denied on an appeal. We finally had success on the third go-around, in front of judge again since our first judge was on his death bed and it got re-assigned. I had to do it all on my own as the attorney advised that we likely would not get a favorable verdict.

Everything hung on the date of the HD diagnosis by the neurologist, when she was deemed to not be able to work for a solid month without have 5 or more sick days in that month, and whether this all checked out prior to her last insured date.

That's my story so please let me know if I can help. I too used Phil Hardt's stuff as much as I could. You need your neurologist to step up and state that you cannot work and maintain full-time work. That is the key in all of this. Let me know please, I 'll check back.

I have been approved for ssi disability !!!!!!!!!!!!!!!!!!!!
WOO HOO

Followed all instructions from Phil Hardts colume.
They did try to get mw to come in person for the interview and I told them to come and pick me up. Ha they weren't willing to do that.

thanks to all who helped me I did it on my own and paid nothing to an attrny.

Check to arrive in 5 days

Once I have my ssi card going down to IU MED CENTER to get more answers and get involed in a study.
Bless you all

Hi,

It's been a long time since I posted, but I wanted to let you know that I applied for disability online, and there didn't seem to be a way to save it, so I accidently submitted it. This was a few months ago, when I thought I was losing one of my part-time jobs. An agent called a few days later, and at that time, I was back to both of my jobs, so definitely didn't qualify. The agent was very nice though, and knew that I would be needing disability for real in the near future. She sent me a denial letter. Now, a few months later, I have lost my principal part-time job, and I definitely won't be getting it back. So, I spoke with my neurologist yesterday, and she agreed that this would be a good time to apply again. A social worker will be calling this week to help me with the application, but I feel pretty confident that I will get it -- as long as I quit my little 20-hour a week job.

FYI, I am 58 years old with a CAG count of 42.

tellie



Edited 2 time(s). Last edit at 05/15/2013 06:36PM by tellie1.

Great news Gabbigirl1. I think it's the pressure of not knowing the future (considering we don't have a clue anyway).

Tellie, best of luck to you as well.

It's difficult to stop working, especially if you have a good work ethic. Not only that, you have to sever some of your independence in doing so. When you reach that point it seems like you are giving up so much of your life. Unfortunately, corporations, government agencies can't clearly differentiate those in need and those in "want". How a diagnosis of HD could be anything but need, I cannot comprehend.

June 1, my private disability company has to decide if I can go from my own occupation to any occupation. I've been worried about the direction they will take. I guess they'll let me know when ready. Two weeks to go.

Mike

Hi Gabbigirl1,
That's great news about your getting approved! How long did it finally take for you to hear from them? I applied last week, so I'm interested in finding out what the new time line is.

Mikee,
Thanks for your good wishes! I hope you get good news, too. I'm trying to keep working at a 2-3 day a week job, where I do music therapy with Alzheimer's patients. Kind of like the blind leading the blind...

tellie

First things first. Did you do this in person or on the web ? I followed all the advice of phil hardt. MAKE sure the rep or you put down Adult onset of huntingstons disease. It needs to match for the ssi system to pick you up for front of the line service.
I personally called Indy to make sure my case was being handled as a compassion diag. Even with putting the disease in correctly I was put in the wrong place and was moved to a different case worker. DO CALL WEEKLY. Total time I believe was about 3 weeks my first check is arriving tomorrow, but as I said, don't get nasty but be consistant.
After receiving my new case worker it was 2 weeks, I would suggest if you can get a copy of your med records and fax them to your case worker. It goes alot faster that way.