Disability

[Just J]

So far because my husband works from home he is still able to work. I really see this going away in the next 12 - 18 months though as he is declinging more and more. Does anyone know with PLS is it difficult to be declared disabled for Social Security purposes?

 

[olly]

hi i know most people in the usa with pls get disability as it is classed as a mnd like als.
i think they had to get a diagnosed letter from there neuro.
if you call social security they will be able to tell you more.

 

[Roger Sanders]

I discussed it with my Neuro first and he, myself and wife agreed I should file for SSD. The only thing I did was go online and do the disability process on the computer instead of filling out papers. This was the hardest part of it. You have to list all your doctors and your Neuro will probably be your diagnosing doctor. I did not have to get a letter or anything like that. Your primary doctor (Neuro) will get paperwork from Social Security that he will have to fill out and send in. You then set up a phone interview with SS and I think mine lasted about 20 minutes or you can go and do a face to face interview at the SS office. I received an award of benefits letter in about 30 days later. A couple weeks later I received my 1 month back pay check and then started receiving benefits every month. The SS case worker I had was very nice and made things very easy for me. This was very good because at that time I was very stressed out. I know in my heart that God intervened and made the whole process easier for me. My case worker said she would call me in about 2 years to see how I was doing. They know we have a progressive disease so they do not bother us with phone calls all the time is what she told me. All in all I think since I had a good caring Neuro it helped out a lot too. I hope this helps you a little bit. Roger

 

[Geo]

I too had no Problem as a Prognosis of PLS can be changed to ALS ,they give it 5 yrs. I received a Check Direct Deposit in my account in 2 weeks .I was told they do this because an ALS Patient may go fast so they try to cut you a check to help with expenses . I went into the SS office and did my interview and took my Papers .They go by what your Doctor Recommends if he or she says yah its yah . Good Luck Geo

 

[Just J]

Geo and Roger, thanks for the info. It's a relief to know that it doesn't seem like a frustrating torturous process as I would have expected from our Government.

Geo, you mentioned "Prognosis of PLS can be changed to ALS ,they give it 5 yrs". 5 yrs from when...diagnosed or symptoms on set? My husband symptoms began 3 yrs ago. He currently can barely stand/walk. We will be purchasing a walker real soon and have a transport chair already. I asked the Neuro about progressing to ALs and he thought no based on when symptoms began. I know there is no road map for any of this that's why this site is so helpful.

PS - Roger, I too am a Peyton Manning fan but not a Colts fan....Go Ravens :-D

 

[Geo]

It all goes back to the EMG results. from day one .They recommend getting a EMG every year .But what i did was check my strength by the squeeze method .and keep track of it . Have the Patient grab your two fingers and squeeze them ,note how much strength he has ,do this every month ,As soon as you note a weak grip get a EMG because weakness doesnt come to PLSers until it has gone on for a few years . MY grip is still strong .I have 8 yrs. now . My Friends are from Havre De Grace.They have a Condo there on the Ches Bay theyre my neighbors here in Ruskin .Geo

 

[Just J]

Geo, thanks for the tip on "two finger grip test". My husband will have another EMG in March. His last one was over 18 months ago.

 

[Jocelyn]

I'm glad you posted this and even happier that those of you who have applied appeared to not have any problems. I was just telling dh the other day that I am beginning to have issues with driving- as long as I can leave on the cruise control, I'm o.k. but if I have someone in front of me who doesn't appear to be using theirs, my right leg begins to spasm- Ouch!

I have a 45 minute highway commute to work so this may become an issue in the future. Very frustrating. DH doesn't want to live in the city though.

Cheers
Ronda

 

[Connie]

SSD Denied

Thank you all for your informative posts.

My husband was diagnosed with ALS in March of 2008 and then diagnosed with PLS in September 2008 by a facility in San Francisco. His claim for social security disability was denied. we were very surprised as he can no longer work because his speech is very impaired. We' re now trying for state disability and hope it works. Happy new year!

:-(

 

[Rodstew]

I was advised by Neuro to apply for disibiity at the first of Dec. 2008. I have completed the online application and submitted the required forms. The Calim Manager called me and ask a few questions last week. She then mailed me some forms to clarify how this has affected me and more questions about the pain. It is heartening to hear some of you got this without a lot of hassle. I will keep you updated as I go through the process.