Recent content by Romeosc

  1. R

    Does Medicare or anyone reimburse

    Does Medicare or anyone reimburse for personal health workers to help bathe and dress?
  2. R

    Still here thanks to RCH4

    I was approved but I have not got ALS clinic to recommend or prescribe. Do I need to stop Radicava or Riluzole?
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    Still here thanks to RCH4

    How much does it cost you?
  4. R

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I am on 6th cycle and no problems... wife thinks I do better on it.... I am in slow progression, but I don't know how I would be without!
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    Using the Hoyer for the first time

    We only use ours in emergency (for now). When I can't get up or slide into diown We have a shower chair with built in commode
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    permobil m300 is too tall for most tables

    Home is not a problem... when we go out my knees & or thighs hit table. I am looking at rehabmart to see what I can attach
  7. R

    permobil m300 is too tall for most tables

    My permobil m300 PWC is too tall for most tables It is 1 to 2" too high on lowest full tilt forward for my legs to go under tales. Is there some attachable tray table, I can use when dining out?
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    Update on Whill model Ci PWC

    I wish my Permobil m300 had those features!
  9. R

    Did anyone tried this?

    Unfortunately. in my observations with 5 neurologists, they eliminate all other diagnosis and then say "if it isn't any of those.... then it must be ALS..."
  10. R

    Hoyer lift sling to standing position?

    Has anyone used a Hoyer lift sling to standing position?. We have a Hoyer lift, but sling is designed for sitting position. I am 280 pounds, and can "walk" with walker, but on days when caregiver is not here, my wife is not strong enough to get standing from shower chair. Once I am up, I can...
  11. R

    Can I get a button to replace PEG?

    I have PEG installed 6 weeks ago and haven't needed yet(except to flush) I hate having the 12-18 inch tube hanging out. How hard to change it to a button?
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    Still here thanks to RCH4

    Just got email stating.... "Having studied your form, I am now able to confirm that we will provide you with the new ALS drug RCH4 subject to everything being satisfactory in your clinical file and on the understanding that:" I will talk to Dr. @ALS clinic
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    Thoughts on Chemical Exposure causing ALS?

    I removed Asbestos before danger was known
  14. R

    made hospice decision

    Sometimes I wish I be like Moses and just wander off... So none of my love ones will suffer through this!
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    Do they re evaluate lung capacity to renew Radicava?

    I know to be on Radicava required 80%... I am on 5th month of infusion and lung power has gone down... Will they kick me off?