My Frontotemporal Dementia (FTD) and Social Security Disability Insurance (SSDI)
I was diagnosed with FTD just a week before Christmas in 2013. https://www.theaftd.org/what-is-ftd/disease-overview/
In December 2014 I applied for SSDI. I learned that Social Security considers FTD a "Compassionate Allowances" (CAL). I was still sitting on pins and needles until I was approved for SSDI. Because of this I didn't have to hire a lawyer.
Frontotemporal Dementia (FTD), including Pick's disease and Primary Progressive Aphasia (PPA), is eligible for Social Security Disability Insurance (SSDI) benefits. The Social Security Administration (SSA) includes FTD within its "Compassionate Allowances" (CAL) program, which expedites the application process for individuals with severe, debilitating conditions like FTD
As most of you know, because of some warning signs, my doctor recently had me take a 3-hour driver's test (I passed). Taking Trazodone has helped slow the advance of my FTD.
The reason I'm posting this is because DUer JMCKUSICK (John) is applying for SSDI. He does this at a time when Trump is closing Social Security offices. This means longer wait times for services, appeals, etc.
Because of the standard to reject the first time application, he has filed an appeal with the help of his lawyer. It is a waiting game.
John has come to us for financial help before. John has always been open about his case. He updates us often. He has named his doctors and hospital. He has been open to advice.
I'm asking the DU to again help john, who has nowhere else to turn. If you can afford a few dollars, that would be great. A kick to keep this visible and an R would do wonders.
Here is john's post from last night: https://www.democraticunderground.com/10182173667
John's gofundme page: https://www.gofundme.com/f/help-john-mckusick-overcome-health-and-financial-struggles It has $5,917 raised as of now.
I'm a platelet donor. I never get to see those that I'm helping. I'll enjoy watching John get some much-needed help from the DU community.
I can't post this in the Lounge because of the reference to Trump.
Regards,
Omaha Steve (OS)
= new reply since forum marked as read
I had an attorney and SS wanted me to go see a doctor somewhere.
I went blind instead and the denial was overturned.
It was a hell, a sheer hell. No one should have to become so far gone to get what they deserve!
One of my parents succumbed to what was thought to be FTD. Yes, only fifteen years ago there was no means to directly diagnose FTD in patients. Let alone any treatment or support.
Yet, here we are today and it thrills and fills me with joy to see you actively participating in life every day, Omaha Steve. Speaking of therapies and programs that work!
I have personally seen what happens when they are absent.
You have come so far and have so much more to give.
Thanks! 
Our system is so wrong to make it this hard to cope when our struggles are beyond difficult. So glad we have our DU family to support us.
I initially applied 2022. I didn't get my first denial until last August, filed for reconsideration and when FatAss got elected I had all but given up. Surprisingly my case flew through the second round and I was approved 2 weeks ago. I have spoken to many at SS and Medicare and also the local office and both national FFSA and the local FFSA. I don't want to give anyone false hope because yes it can be hard and drive your anxiety level through the roof (I had a second heart attack during the process!) BUT I know, personally from speaking with these people, that FatAss has lit a fire and these people are working their freaking asses off right now to do everything they can to get people the ever so important assistance that they not only need but DESERVE!!
And I want to add, even though I knew this going in, the amount of money you get on disability is a shame. Very, and I mean very few people will get a living wage. I will be getting less than a full time Taco Bell worker per year. It's a pathetic amount of money for people with severe disabilities like myself who can't work along with disability. And if you combine that with the fact that if you have to wait over 2 years like I did you suddenly have to wade the through the insanity of Medicare because they will put you directly into the Medicare program after 24 months of eligible benefits no matter your age unless you currently have employer insurance or a pension insurance to carry you to 65 or like me 67 (I am speaking of SSDI only). I had no idea. I thought I had until 67, 4 more years, to worry about Medicare. As such I've put myself through a crash course navigating the Medicare, and Medicare assistance if income asset eligible, jungle. As relieved as I was when I got the approval letter my anxiety level once again is through the roof (don't think my ticker could take number 3!!) again especially as I navigate the part D drug options as I'm on some very expensive heart formulary's that I now have to have my Dr's try and get approved. Like 5k a month expensive without insurance and my life expectancy could be shortened even more with out them. If I can't get assistance my Medicare costs will eat up half my check.
BUT besides all of that let me EMPHASIZE this AGAIN and AGAIN. There is HELP for ALL of this I just discovered this week. DONT let it get to you like it did me. YOU WILL HAVE OPTIONS!!! I want this post to be informative and to prepare Jim and anyone else no matter there circumstance. NOBODY prepared me, not my attorney and certainly not my procrastinating self.
Good luck to you Jim and DON'T GIVE UP JIM!! Don't let denial letters or on the very very off chance you get a poor interviewer don't let them get you down. Take every appeal avenue available to you possible. MAKE YOUR ATTORNEY WORK FOR THAT MONEY THEY WILL GET!!! Many dont do anything, like mine, unless it goes to a judge. Once again EVERYONE I've worked with who are under IMMENSE stress from this fucked up administration are seriously working double time to help people.
I hope this doesn't deter you I'm just being very honest. The process actually took me longer before FatAss and his cronies. It seemed like once they starting threatening all these workers the ones who stayed said, pardon my sailor talk, FUCK YOU!!
Seriously I wish you the best of luck and if you have any questions at all, as ignorant as I am about this I am quickly learning, I will be more than happy to do what i can to answer them and help. I'm sure you have all the help you need but hey, you can necer have enough.
Sorry for the long reply but Jim's medical issues and the pain he's going through I can totally sympathisize.
GOOD LUCK TO YOY JIM AND HANG IN THERE!!!!!!!
Peace and Carrots
such a sweetie both you and our other brother who needs a little hand.... I can see both of you smiling, even when down; just let us know...
