Status
Not open for further replies.
Hi Everyone,

I'm not sure how many of you are presently drawing Social Security Disabiliy, but i am. So i can tell you my experience with it. In Feb. 2005 i was put on Short Term Disability from my place of work. Which only covered me until June. I had to be off work for 6 months before our Long Term Disability,, kicked in. So i was without any money except for my family , friends, and church. Until the end of August when my 6 months waiting period ,for my Long Term Disability was up from Perrigo,, (where i had worked). While, i was waiting for this time to pass, i was also having all the tests ,, you've all been through. When i was diagnosed in,,,June , 2005 the doctors had me start the process of signing up for S.S. Disability. This does take alittle time, getting appointments etc. However, My first neuro. sent a letter to my caseworker , stating my diagnosis, and unability to work any longer. My Social Security, worker ,then told me that there is usually a waiting period. However , there is ONE exception to the rule. The only people without a waiting period is,, people with ,, ALS. I was very surprised,, cause there are a lot of other terrible diseases in the world, but according to her ,, everyone else has to wait. I did get a letter in the mail,, stating this as well. All i can tell ya for sure is, that i received my first partial check,,from ,, S.S. Disability the end of August 2005. In my case because i had disability from Perrigo,, it teamed up with S.S Dis. to decide how much i would receive from the State.
I hope by sharing my experience,, it has helped to enlighten ,, and encourage, some of you. Have a good day ,, and remember ,, wer're all in this together.

Love and Prayers
Marlo
 
HI,
I have not been diagnosed as yet (waiting), have not been able to work since Aug. 2, 2006. I applied for SS disability 2months after. Well to make a long story short I received a letter in the mail today from the state saying they wanted me to see a neurologist that they chose on Dec. 14th, I suppose that want to make sure that what my doctors and I are telling them is true. I figure if they are going to send and pay for another opinion why not. My neurologist suspects ALS have had all the normal test all negative Dec. 18th scheduled for a EMG and Nerve Conduction Test. Has anyone gone through this type of thing with SS Disability's own Doctor evaluations?

Ellisa
 
ellisa said:
HI,
I have not been diagnosed as yet (waiting), have not been able to work since Aug. 2, 2006. I applied for SS disability 2months after. Well to make a long story short I received a letter in the mail today from the state saying they wanted me to see a neurologist that they chose on Dec. 14th, I suppose that want to make sure that what my doctors and I are telling them is true. I figure if they are going to send and pay for another opinion why not. My neurologist suspects ALS have had all the normal test all negative Dec. 18th scheduled for a EMG and Nerve Conduction Test. Has anyone gone through this type of thing with SS Disability's own Doctor evaluations?

Ellisa

Hi Ellisa,

Sorry you are having to go thru all of that. It's hard enough to have this disease, without being put thru the ringer,, so to speak. I was very fortunate in that area i guess. As i said in my other letter,, my branch requested a letter from the original neuro. and i had already had a second opinion,, if they had asked for it. I don't know if anyone else on here had to have it to get their S. S. but my first neuro,, told me i would need it. Thats why he made me go for another one. I pray you have a good day.
Love and Prayers,
Marlo
 
Help!

Why is my mum acting so weird nothing is sinking in shes not a bit well but why do i feel so angry and unable to cope My mum never slept all last night she sat with her coat on and opened and closed the door about fifty times. She came to mine about 12 30 am and paced up and down all day till 6 30 pm sat down slept for ten minutes and went home at 9 pm. Do you think there is any cause for concern.Help because i dont know what to do.:cry:
 
Nita,
If I understand correctly, your mum has ALS, is acting wierd, and you don't know what to do. Right?
I'm wierd too. A lot of times I want to run and hide, leave and not come back. I think my family doesn't understand; fersher my friends don't.
Your post doesn't give us any idea your age or hers; it would help to know. It would help if we knew if you two are able to talk, or does SHE not want to talk, or do YOU not want to talk?
Speaking only for myself, people with ALS can be wierd. We have a terminal illness with too many unknowns, and what we DO know is terribly frightening. It tends to make one wierd.
I suppose I'd like to sit down with MY daughter and discuss what she understands, what she plans to do in my darkest days. A lot of relatives don't want to deal with such morbid and unpleasant things.
And if your mother has ALS, I can imagine you are scared too. I have ALS, and a few years ago my brother died from ALS. I was scared then, and now. Tell us what's going on and I'm sure there are members here who can help.
Alan
 
Hi Nita. I'd be a bit concerned. That behavior goes beyond weird. Has she showed any other signs of dementia? That can be one of the symptoms in some people. AL.
 
Hi this is Nita again ill try and explain a bit more.
My mum is 64 years old we started noticing something was wrong about 16 months ago we thought she was secretly drinking her speech was slurred she couldnt hold things properly
Anyway she was diagnosed with MND in June 2006 after some tests where done it was then confirmed. This is her daughter
Anita writing this i am 43 , my mum still works they have adapted for her illness she used to have 4 part time jobs
an active social life now its all fading away
The detereation is quite unbelievable and the saddest thing is that its happening to my mum and thats whats the hardest
thing to deal with but there is definitly more going on than
MND .Thank you for your reply it really means alot and i wish you well .
 
Hi Nita- Al has a point. The first thing I thought of was dementia since this is my Mom's DX and it fits her behavior. Hopefully a good neuro can sort thinks out. And I am not sure but isn't there a brand of ALS that has dementia-like symptoms along with it? Am I right, Al?
 
Hello Cindy
Thanks for your reply there is rare cases where dementia can occur i think its
happening to my mum shes like a child i didnt think a day would come that
id be caring for her its breaking my heart how old is your mum and do you care for her
does she have ALS as well .
 
Nita-

I think the others raise a good point about the possibility of dementia. Another thing to consider is medication interactions which can result in dementia-like symptoms. Make sure every doctor prescribing for your mom knows what else she's taking and if you can get her different docs to talk to each other that would be even better or get a pharmacist to review all the meds she's taking. Sometimes you have to be really pushy to get doctors to talk to each other - they don't like to challenge each other for fear someone will challenge them.

Liz
 
Hi Nita. My Mom only has the one DX of Alzheimer’s but it was a neurologist who uncovred it. And if your Mom has ALS she probably also has a neuro too, right? Because Liz is correct- lots of conditions could cause this behavior. Good luck with the experts. Let us know how it works out...
 
Thanks for taking the time to reply to my messages it means a lot, i will let you know how my mum gets on. merry christmas to everyone and have a good new year xx NITA
 
Hello there-

My mom was diagnosed a few months ago, quit her job immediately and moved in with me and my family. I went right to work in getting her every resource available. People with ALS get a special "pass" for Social Security Disability and typically only wait for 5 months before receiving money and Medicare. (Medicare will cover her medical expenses-- not prescriptions) Disability usually takes 2 years to get. She had a small pension from her employer and therefore did not qualify for SSI. Unfortunately getting the money from that pension will take 3 months-- she's using her credit card to pay for her Cobra insurance for now. My advice to you would be to start the process now.
Best of luck! Shannon
 
Leo

I think financial and medical coverage has been discussed thoroughly, so I would like to mention a few other things I learned retiring because of ALS. I had a very stressful job, and, although I don't know of any studies to back this up, I believe stress contributes to ALS. My progression was rapid until the disease forced me to quit. I saw an immediate decline in the rate of my progression. As I slowly learned how to enjoy life and not try to control everything, my progression continued to decline. My ability to enjoy life actually improved. If you are one of the lucky few who truly enjoys your work, disregard this post.
 
Hi Quadbliss. Welcome to the forum. You are not the first to have noticed the link between stress and ALS symptom progression. I think myself that it is a definite link and should be looked into but then I don't control the research dollars. AL.
 
Status
Not open for further replies.
Back
Top