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Thread: Help!

  1. #1

    Help!

    Hi All, I've been teaching now for 10 years (I've been in a chair for the last 7), and love, love, love my job (I teach 9th grade public school in Baltimore). I want desperately to keep my job for an 11th yr, but am afraid that -- unless MS gives me a break pronto -- that is an unrealistic goal. Further information:

    - I was diagnosed at 19 and am now 31.
    - I have a pretty progressive course of MS. As of today I cannot use my legs at all, tone affects my legs and trunk badly, my arms have weakened significantly this past year (I was an avvvvvid swimmer until a year ago) and I can no longer type, play piano or do pretty much anything that requires fine motor coordination.
    - I have pretty good insurance through Baltimore city, but it doesn't cover any sort of home care assistance.
    - My current roommate (who has morphed from roommate, to friend, to care taker) is moving out of state in mid-August. My family lives 5-6 hrs away, and I am definitely single
    - I just had the Mitroffanoff surgery for my bladder in order to restore my independence, but unfortunately my disease took a big hit. I am no longer able to transfer (into or out of my car, my bed, on or off the toilet, on or off the couch ETC). I am also struggling to put on shoes, get the bottom half of me changed, get my bras to clasp, put on mascara, wash dishes ETC.

    I cannot possibly be the only disabled person in this predicament. Please give me some advice -- are there resources out there to help me stay employed and maintain my independence? Are there care-giving resources that I can afford on a teaching salary? What on earth do people do?

    I also didn't know where to post this; care is probably the wrong place!

    Thank you for listening. I am so incredibly scared.

  2. #2
    Hello,

    I am so sorry to hear of your predicament and I applaud you for being so proactive and motivated about your situation and independence.
    Your post could go in many forums but I did move it to caregiving as it sounds like this is the most immediate need.
    You could also post this in the "Life" forum to get other perspective. The MS society has great resources, with publications,etc that could help. In addition, many local hospitals have MS support groups. I would check these out.

    I wish you the best.

    AAD

  3. #3
    Senior Member
    Join Date
    Sep 2007
    Location
    Fithian, IL
    Posts
    1,967
    I am so sorry to hear your troubles with this horrible disease. My husband has had MS for going on 5 years this October. He has been in a power chair since his first attack. He is gaining some progress however. I wish I had the answers for you however, I have had to cut back on caregiving myself due to the expense of it all. We get assistance from the MS Society however, they are really cutting back too. Started out getting money for caregiving and toileting supplies, then dropped the caregiving and just got the depends and wipes from them, they just called yesterday and there is only $25 left in our account from the MS society for the remainder of the year. Can you possible put an add on Craigslist looking for a caregiver that you will pay by room and board since it sounds like you won't need someone all day then she can work elsewhere while you are in school?

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