When disability?

[LeoGreene]

A question...
I was diagnosed in August and am still working full time. The disease is progressing and my speech is getting really thick, my right arm is at about 20 percent and my legs are getting unsteady. My bosses say I can stick around and get paid for as long as I want.
However, I don't want to end up in a bind for equipment and waiting for Medicare to get approved when I qualify for SSDI. I may need communication equipment before then. That can take five or six months, I hear. So, I'm not sure what to do. The job provides more income. But my Blue Cross only covers $2000 in equipment costs per year. Any suggestions?

[Al]

Hi Leo. I'd call the local chapter of ALSA and see what they will help with. LA Dave is in California and may be better able to advise you on what Medicare does and doesn't cover.
http://55jer.com/randysalsmanual.htm#COPING_WITH_ALS

Also if you go to this website Randy's Manual for living with ALS at the bottom is quite a bit about SSI and Medicare that might be of use to you. AL.

[LeoGreene]

Thanks bunches. I'll check it out.

[Nita]

My mum :confused:

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What can i say my mums been having symptoms of mnd 4 over a year now she chokes on everything her weight has plumitted to a mere 8 stone she was diagnosed in june with mnd she seems happy enough but cant sleep or eat fasten her coat carry her bag everything is a struggle the doctors say dont try to explain the ilness to her why go with feeding tubes and masks only to prolong the illness has she much time left.
I love my mum what do i do ive never cried so much in my life shes just so brave shes only 64

[hboyajian]

Nita, My dad is getting a feeding tube, and he is 84 years old. Your mom potentially has several years to be with you and feel the love of her family, if not much longer, with a routine procedure such as the PEG tube, and possibly some breathing assistance. The key question here is what does your mom want? It is my opinion that she has the right to know about her condition and make decisions for herself, based on her own personal needs and wishes. I would get another doctor who has more sensitivity and understanding of people's humanity if this is possible.

[Al]

Hi Nita. Your mum doesn't have much time left if the doctors are content to let her starve to death. Too often they write us off because they feel we won't have THEIR idea of quality of life. Has anyone asked your mum what she thinks. Keeping her in the dark is doing her a disservice. Tell her what is wrong with her and what the options are. She just may surprise you and rally. AL.

[CindyM]

Thanks, Leo and AL for the discussion on when to go on disability. It is exactly what is on my mind these days! And thanks for the tip on where to find answers! I Appreciate it. Cindy

[Bill60]

Leo, I'm really sorry that you have this horrible disease.
After I was diagnosed, I fought for a year to keep working. I now regret that, I wish that I would have gone on disability as soon as working and talking became difficult for me. I also believe my working probably sped up the progression of the disease. Use what physical strength you still have for yourself and your loved ones.

[Nita]

Hello again thankyou for your replies the nurse came to see my mum today and the dietition she has put 3lb on:-D we spoke
about the food peg my mum said she wouldnt like it.
In rare cases the mind can be affected by mnd which is happening with my mum she does get a bit forgetful and is sometimes like a child she tells the doctors shes not sick and goes on bus rides into town only to come back again 2 or 3 times
a day. Her quality of life is already changed all we can do is
take each day as it comes.

[CindyM]

Thanks for sharing that, Bill60. I never thought about how I would feel if I used up what little energy I have on something other than my family. I am still conflicted, though, since going to work right now keeps me focused on stuff other than myself. It is hard, though, to find the physical stregnth to put in a full week. THis is one of those things that will work itself out soon, I suppose.

[notgoingtotell]

Leo, if BC only covers $2000 in equipment a year, it seems obvious to me (an insurance attorney) that you should get some equipment THIS year and some next year. It's now Dec. so talk to your neuro and see what he recommends.

You might call BC, too, and see if your understanding is correct. That seems like an odd limit to me.....

[marlo]

A question...
I was diagnosed in August and am still working full time. The disease is progressing and my speech is getting really thick, my right arm is at about 20 percent and my legs are getting unsteady. My bosses say I can stick around and get paid for as long as I want.
However, I don't want to end up in a bind for equipment and waiting for Medicare to get approved when I qualify for SSDI. I may need communication equipment before then. That can take five or six months, I hear. So, I'm not sure what to do. The job provides more income. But my Blue Cross only covers $2000 in equipment costs per year. Any suggestions?

Hello Leo,

I'm not sure how it works in California, but in Michigan,, you will not qualify for SSI as long as you have a 401-k plan. So before you are forced to quit your job and end up like me. ,, you may want to make sure your money is working for you ,, not against you. So you may want to also look into transferring it someplace different or pulling it out. Until mine is used up,, i don't qualify for anything except S.S. disability and the disibiliy from my shop.Cause i supposedly have too much money at my disposal. In reality,, i get 490.00 per month from SS. And if i pull any of my money out of the 401-k plan,, i end up lossing 30% of it each time because i am not old enough to pull it out tax free. Out of the money,, i do get i have to buy BlueCross BlueShield, (Medigap). In order to have doctor and hospital coverage. So please do your homework,, before you fall threw the cracks in our health and retirement system.

Love and Prayers
Marlo

[TRACY22]

You need to get a review of your government benifit vs your co. disability from another person. You have a few sources of income that combined do not work to your benifit With a better Social Security person you can get more returns. I am not giving specifics as each of us are different but what you have stated does not come close to my encounters with others.

The 401k also has not been even asked by SSI when determing entitlement.

A good thing I found was I can use 401 $ FOR medical needs and maintenance of my home WITHOUT penalty.(i still would pay taxes at my current yrs rate) THUS i can use to modify my bathroom and get a new roof.

NOT picking on you Mario but many read our posts.

[marlo]

You need to get a review of your government benifit vs your co. disability from another person. You have a few sources of income that combined do not work to your benifit With a better Social Security person you can get more returns. I am not giving specifics as each of us are different but what you have stated does not come close to my encounters with others.

The 401k also has not been even asked by SSI when determing entitlement.

A good thing I found was I can use 401 $ FOR medical needs and maintenance of my home WITHOUT penalty.(i still would pay taxes at my current yrs rate) THUS i can use to modify my bathroom and get a new roof.

NOT picking on you Mario but many read our posts.

Hey Tracy,

No need to apoligize for your reply. I'd love to get more money , as i'm sure everyone would. But i have checked into this,, and was sent a letter,, from my branch of the SS. stating that because of my age and number of years worked,, this is what i get. And because of my age,, i will be penalized for pulling the 401-K ,, out early. Their letter did tell me, that i could use my 401-K to pay off medical bills, or get house payments,,,, up to date without the extra penalty,,, ONLY IF,,, i was in jepordy of losing my house because of it. So if you are finding the system ,, working better for you ,, and those you know.,,, i'm happy for ya. But it's not the case for some of us. I am grateful for what help i do get from them,, but this is not the way i saw my life going,, before this , disease happened to me. Maybe between the two of us,, we can at least ,, make sure that others do their homework before making any big decissions that will affect them the rest of their life. All i know is,, what i wrote, has been my experience with the Goverment.

Hope you all have a good day, and that more of you find Tracy's info to be what you experience, but i can assure you,, it will not be like that for all. My own sister,, has received (back pay) from the Gov. three times that i know of,, to the tune of Thousands of dollars. Now i am happy for her,, but it sure has not happened to me.

Love and Prayers
Marlo

[Beebe]

Hi there, I do know that a law was put into effect a few years ago that ALS patients are approved the day of dx and there is a maximum of 6 months to receive your first payment and back months are retroactive. There is a link about this a young couple the husband had ALS and they went to Washington and fought for this and had it approved. I'll keep searching. Medicare also goes into effect at the same time. My Best to all, Beebe

[marlo]

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

[ellisa]

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

[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

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

[Nita]

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:

[alan911]

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

[Al]

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.

[Nita]

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 .

[CindyM]

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?

[Nita]

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 .

[liz]

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

[CindyM]

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...

[Nita]

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

[shannonme]

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

[quadbliss]

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.

[Al]

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.