Disabilty Hearing how do I describe my weakness?

    • Anonymous
      February 18, 2008 at 11:13 am

      Hello Everyone,

      My disabilty hearing is coming up. I will need to describe in detail to the Judge at my hearing about my condition and how is effects my daily life. I am glad it is finally here and a decision will be made, but very nervous about describing in detail how my post GBS and now CIDP effects me. Any help from those who have gone through this before would be helpful. The “brain Fog” is sure to be a problem as my hearing is mid-afternoon. We all know as the day wears function decreases.
      Thanks to all of you.

    • Anonymous
      February 18, 2008 at 12:46 pm

      wow Bonnie

      Have you kept a journal? can you get copies of all your medical appts?

      I would start listing everything down ahead of time cause you won’t remember everything in court.

      My thoughts and prayers are with you, good luck!

      Rhonda from Canada

    • Anonymous
      February 18, 2008 at 2:32 pm

      hey Rhonda,

      I have not kept a journal, but it is a good idea. I have a lawyer and both of us and SS have copies of my records. It is so difficult to describe when there is not a test result to back up how you feel. I keep going from Dr to Dr with no solution. I feel like a guinea pig!

    • Anonymous
      February 18, 2008 at 5:49 pm

      Bonnie I would start there-brain fog and go into all aspects of your daily living problems. If you can’t do more than a shower and a load of laundry in a day then that needs to be said. When asked how well you can walk, answer in feet, yards with assistive device without etc. Be direct in your answers. Let me know how it goes for you. I have to start all over with my ss because the 2 guys who filled out my forms didn’t put in the right information. The only thing they got correct was the part of my job that said government job. My fingers are crossed for you.

    • Anonymous
      February 18, 2008 at 5:52 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Bonnie.
      Here is an excerpt from the Foundation’s 2000 Fall Newletter.
      May I suggest you print out the whole article and take it with you to the hearing?
      The archives are full of articles like this, so browse them and see if you come up with anything significant to your case.
      [FONT=”Arial Black”][SIZE=”3″]
      Disability After “Recovery” From GBS
      Kleopas A. Kleopa, M.D., Neuromuscular Fellow
      Mark J. Brown, M.D., Professor Department of Neurology, University of Pennsylvania
      School of Medicine, Philadelphia, PA

      Guillain-Barré Syndrome (GBS) is the most common cause of acute neuromuscular paralysis in developed countries. Most patients recover and return to productive independent lives. In a recent representative survey of 140 GBS patients, 70% made a complete neurological recovery within a year, 22% could walk but were unable to run, 8% were unable to walk unaided, and 2% remained bedridden or ventilator-dependent after a year. Thus, despite the good prognosis for recovery, GBS can cause long-term disability. Persisting disability is largely the result of weakness from the motor nerve injury that occurred during the acute illness. An estimated 25,000 to 50,000 persons in the United States alone are experiencing residual effects from the disease. Most research on GBS has focused on understanding the cause and fending better treatments. Much less attention has been paid to the long-term disability caused by GBS. In addition to the previously mentioned residual weakness, there may be pain, fatigue, psychosocial dysfunction, possible relapses of the illness, and late progression of weakness.[/SIZE][/FONT]

      Just as an aside, although I don’t have personal experience of your case, I have several friends who have told me that one you add an attorney into the appeal, it’s a done deal and you’ll be approved.
      Hope thois helps.
      V [/SIZE][/FONT]

    • Anonymous
      February 18, 2008 at 8:56 pm


      Really good idea from Rhonda to keep a journal. My doc suggested I make a list of some of the problems i may have everyday – I think the journal entry doesnt have to be too in depth, quick explanaiton of pain, fatigue etc. and where the pain was.
      Some of the points I made on my daily living for my doc – just copied and pasted it as an example for you: when the doc was reading this, it was like a lightbulb went off in his head.
      [*][FONT=Times New Roman] [/FONT][FONT=Times New Roman]Would love to do gardening again. Hands become too painful, can’t hold the little shovel, or dig. Start to shake often get dizzy want to pass out. Feel like body is about to collapse at times[/FONT][FONT=Times New Roman] [/FONT]
      [*][FONT=Times New Roman]Want to go hiking with the family. Feet/skin get extremely painful and get a ‘waterlogged’ feeling at the bottom if I put on socks with sneakers or boots. Sneakers or boots also constrict my feet more adding to the burning, cramping and pins and needles – heels go numb often (even if they are loose). [/FONT]
      [*][FONT=Times New Roman][/FONT][FONT=Times New Roman]Also often if I walk or exert myself, my legs (sometimes whole body) feels like it is going to give way – weakness. Almost a shaking from within and it feels like my legs wont hold me anymore and I need to sit for a long time.[/FONT]
      [*][FONT=Times New Roman]Sometimes I just want to be able to peel a potato, or stir a cake batter without having the burning/cramping/tingling pain sensations in my hands – cant seem to do this anylonger.[/FONT][FONT=Times New Roman] [/FONT]
      [*][FONT=Times New Roman]Hate having to break down some necessary shopping trips. If I need to do a ‘proper’ grocery shopping trip, then I have to go home straight after. So tired that I cant do anything after that. Arms and legs VERY fatigued. Most of the time am able to only go get a few items at a time[/FONT]
      [*][FONT=Times New Roman] at times too hard to hold phone due to the burning/cramping feeling, or walk correctly because of the fatigue – straight to bed.[/FONT][FONT=Times New Roman] [/FONT]
      [*][FONT=Times New Roman]Often slurr because of the fatigue – This is very bad at 10 in the morning.[/FONT][FONT=Times New Roman] [/FONT]
      [*][FONT=Times New Roman]Cant stand in lines, have to sit on the floor[/FONT][FONT=Times New Roman] [/FONT]
      [*][FONT=Times New Roman]Can’t sit for long . Backside, all the way to the front, hips and often feet and heels go numb. I do sit but I am often in pain and have to keep moving to alleviate the pain or tingling/numb feelings[/FONT]
      [*][FONT=Times New Roman]very often ‘painful’ to write (holding the pen), or hold a book in one hand when reading. [/FONT]
      [/LIST][FONT=Times New Roman][FONT=Verdana]I know that they seem to be silly little observations, however, someone who doesnt[/FONT] [FONT=Verdana]deal with this everyday will understand a little better having it explained so basically.[/FONT][/FONT]