Diagnosed with Pls and scared

[DEIDRA]

Hi my name is Deidra age 43 retired from Marines have been experiencing symptoms for about 4.5 years finally got an diagnosis in early 07 Pls. My life has changed drastically concerned about the progression I use an walker outside of the house inside there are plenty of walls haha.Thinking seriously about stopping work I have an excellent neuro currently taking neurontin.Does anyone know about disability ss and how long it may take trying to continue working although some days it is almost impossible resources are limited since i am single with a 19 year old, son. Any guidance or encouragement anyone can provide will be appreciated. God Bless:?:

 

[olly]

hi deidra
im caroline/40/single parent of 19yr old son/pls 8yrs.
i was very ill first few yrs,so had to give up work which was for the best as i was physically unable to cope.my pls stabilized for 3yrs,then last 2yrs ive deteriorated again.
in the begining it was my legs but now my upper body,speach and swallowing,i also have some lmn involvment now.
everyone is different in progression and disability.
you sound like you are in good hands with neuro,try not to worry too much.
as for work,do whats best for you and your child.its pointless running yourself into the ground with work if you have no quality of life for more important things.
you should see about getting disability allowance etc,your neuro can help with this.
there is no stigma in this if you have no quality of life.i tried to go back to work 3 times,but when you come home and cant do basic things,then you have to call"time out".
hope this helps.take care and best wishes.hope to keep in touch.

 

[DBowman]

Hello, Deidre...

It is pretty frightening at first when a lot of stuff starts happening to you...for me it was a slurred word here and there...then my swallowing became a little compromised...my voice "dried" out easier...I began tripping and falling a LOT...more than I ever did as a child(I'm sure)...my legs went into their own stretching "mode" when I woke up each morning...they would lock up(while the rest of me kept going)...they began to feel heavy, and I lost my shock absorbers-my legs felt like wood...I went from shuffleing, to a cane, to a rolling walker, though I can still shuffle, still use a cane and I can move over bigger distances with my rolling walker. All this has happened over a period of ,say, 7 years...My actual walking went drastically downhill in just a year! That had me sobbing to God and begging Him to help me keep my walking ability...
But, now that everything IS happening I have this inner driving force telling me to TRY to do as much as I can as LONG as I can...I am taking this on as a CHALLENGE! O.K...I have to do things in a different way...sure it takes longer but, I take comfort in being able to do as much as I can for myself...I do realize everyone's situation is different...I fear, if I stop trying then this will "consume" me in some way...
Medicine and doctors can only diagnose and use what is available in this world, but they do not know everything and are not our Lord God. I am determined to set my mind on acheivements brought around by prayer and faith. I have learned that you must keep using and doing what you can so your brain can "remember' how. I recently saw a medical program on a YOUNG woman who had a stroke, had several operations to remove parts of her brain after infection and who still learned to walk and go to college. A doctor said certain parts of your brain will adapt to help you do things that these sections weren't orginally meant for!

Challenge yourself..ask God for strength...don't give up!

I don't know what the SS benefits are in your state...your Neuro can help you get it faster than other maladys. Check with your SS office. By the way,...what is Neurontin?

 

[Geo]

Deidra SS goes by what you have paid in over the years ,if you have had jobs that paid SS in you should have been getting statements once a year stating what you would get retirement age . Or check The SS office and ask them and after 24 months you'll be eligible for Medicare . But you must get your doctors records and his diagnoses SS will be in touch with him . Your SS statement will tell you what you'll get per month . Your Disability will be what you would get at retirement . i would seriously consider it as you know you'll progress . they go by your Doctors recommendations . Geo

 

[Walter]

VA and SS Benefits

Depending on the level of your disability I am pretty sure you will get SS disability. (the amount as Geo said depends on how much you paid in)
My symptoms started in early 2001 and finally got bad enough that my HR department said I couldn't do my job. I lost my job in June of 2005, About six months later I applied for SS disability and got it. There is a lot of paperwork to fill out but it can be done.
Start now and get it going.
Just FYI: The VA is doing a study to find out the connection between ALS, PLS and two other neuromuscular disorders and military service. (I'm in it) People who have served in the military have a 60% great chance of getting ALS that people who have never served. The VA is not giving any disability as of yet.
However, you might check with your county's VA office, because when I checked into it I found that some neurological disorders do get VA disability if they occur within a specified time after discharge. I didn't qualify but you might. Good luck.
Walter

 

[lsmith1162]

I don't get it. Kinda new to all this but I assumed you couldn't "lose" your job due to a disability. Did you have short-term and long-term disability with your employer? How does that all fit into the picture?

 

[Geo]

Walt I have a Theory on why Gulf war vets got ALS .Ok keep in mind a Virus is 20,000 times smaller than a head on a pin ,can go through almost anything ,hard to imagine something that small that can go through skin ,bone ,blood Brain barrier etc etc . Picture bombs going off like crazy lots of soil being flung into the air
lots of air polution ,these viruses live in soil and everywhere .Ive read alot of Pilots got it more than others ?
Our good ole Uncle Sam problably never checked soil samples or air samples ,just like Agent Orange in Veitnam . I have a theory of a Virus or Viruses that when in air can infiltrate the Mucous Membranes then they find a way into the Brain . Geo

 

[Walter]

Job

If they do a "fitness for duty" and find that they cannot "reasonably" accommodate your condition or considerate you a liability, they can legally get rid of you.

 

[easy]

If they do a "fitness for duty" and find that they cannot "reasonably" accommodate your condition or considerate you a liability, they can legally get rid of you.

im 41 and was "separated" from my job in 2003. i know a person who works in the SS/disability offices. one of the disease categories that gets processed without question is progressive mnd's e.g. pls and als. go to your local ss office asap! bring all you dr. records and prognosis. its your right. also check wheather you have long term dissability or short term disability at wk...you can collect ltd/std AND govt dissability pmts at the same time. you should not be working if you have pls. it will decrease your quality of life. i only had a slight limp and minor dysarthria when they mad me go on std which turned into ltd. i had a company car and thats why my company "separated" so early (lets say its americas largest candy company and rhymes with "hershey" ;-) the piont is these diseases take a long time to fully manefest to a definate diagnosis and they may keep progressing...hope not for you.

i wanted to work so bad because i wanted to deny my disease, but looking back im glad i didnt. your company only needs to make "reasonable" (a lot of room for interpretation in that word) accomidations for you to perform the job in your job desription. but they should have your best interest in mind. im very surprised they havent "separated" yet...what if you fall in their work place while they knew you were sick? you should meet with your human resources dept. and your neuro and have them pull you off the job. good luck. keep your head up. peace, easy

 

[Geo]

Well Easy i was similar to you ,with sligfht dysarthria and limp ,i had a part time job giving out change and cleaning the grounds at a do it yourself car wash when they got wind of me going to Mayo they sent a consent form out for me to get my doc. to sign off on as to my ability to work ,he refused saying thats rediculous you are fine ,well they fired me ,i got my attorney and he made them take me back as there was no prerequisite as to health condition at time of hire ,well geuss what they rehired me only to cut my hours from 25 to 2 hours ,i then quit and went to SS and applied and was accepted in about 2 weeks . We are a big liability as we dont know when we might fall . Prior to that i was a Plumber 40 yrs. and got a real good Union pension ,moved to Florida where the weather is warm and now help my friends with little projects .
Geo

 

[Whitsend]

Ssd

I second (or is that third?) about fast SSD. I filed for SSD on January 23. Yesterday, Febuary 14, Social Security just dumped a chunk of change in my bank account.

Boy was I surprised. They tell you about the waiting period. And then you hear the horror stories of people getting turned down and they're still fighting for benefits when they die.

Must be we get an automatic pass. I called the SSD just to make sure I'd been approved. Don't want to start spending what I may have to give back. The guy told me I was approved. Go ahead and spend it.

Yesterday was a bright day for me. I think I'm still glowing some.

 

[Geo]

We we sold out up north and put the money in the bank here so if she needs it when im gone she'll have it
Meanwhile i'll try and enjoy the time i have left . Geo

 

[olly]

things are the same in uk,i tried to go back to work 3 times but then told to write my resignation as i was uncapable of doing my job, i said no, so i got company sick pay for 1yr and then just before that ran out the company made redundancies as i was still officially an employee i got 10yrs redundancey money,im sure they had advance notice of this and wanted me to resiegn so as not to give me pay out.
also disability is nearly same, what gets me is there are people who lie and claim, then those who need it get turned down, that really makes me sooooo mad:evil:

 

[easy]

whistend,geo,olly-i was really surprised too with how simple the process was. go ahead spend it-they wont deny you later...if anyone has kids theyll get pmts too. olly it makes me mad too. i dont know how it is in the u.k. but loopholes, red tape and inefficiencies abound here. by the way i wanted to go to the isle of man motorcyle races before i got sick (we had a euro bike club when i lived in chicago-nortons, triumphs, ducati) how accessable is it?

 

[pmbenb83]

Hi easy,
You mentioned if we have kids they will get payments too. Our youngest is 20 and a FT student, will she get something? My husband has been checking into his disability, retiring early and ss, but I wasn't sure if she would get anything. I sure hope she can, because we have 3 in college right now, but the other 2 are 22 and 23, so I'm pretty sure they do not qualify. Any $$ help would be wonderful.

Thanks.
Pam B in Va