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hi all i have received a request for help from one of our list-family nancy in ohio she sent me an e-mail message privately and i am including it [neatened up and transmogrified] below but i will not reveal her e-mail address for now due to her 'target' concerns she asks questions about helping agencies and care-workers that i feel unqualified to answer since i am not american i hope that the 'experts' in our cyber-family can help her locate some sources of assistance at either the federal level or the state level [ohio] hmmmm, now, why is it that the spunkiest people seem to live in ohio? something in the water? the air? the keyboards? ========== Subj: Need Assistance please Date: 1998/10/27 09:32:09 From: Nancy Janet, hi, my name is nancy, 40 years of age, and diagnosed as having MSA [multiple system atrophy] in 1994.and later SDS [shy-drager-syndrome]. Neurological problems were present prior to diagnosis. However, I am not pushing up daisies either :) I have severe BP problems and wear 30/40 compression pantyhose /JUZO, constipation, wear out easily, severe digestive problems, eat pureed chicken with mayo, drink sustical and gatorade, pureed broth like soups, etc. BUT my aide and i go out for 1 activity per day in the afternoon. Formerly i was a speech language pathologist. I need an agency that I can depend on for backup aide, an aide that is able to drive me in my van, assist me and do ADL's. [activities of daily living] No, i have no family support. I have a husband, but contrary to my present agency's belief, he cannot take off at a moment's notice. I do not live near a bus line. We live in a village that mainly consists of retirees that don't need health care or if needed they already have live-in help due to their being able to save for retirement and they own major corporations. I did not expect to get ill 5 years after I graduated graduate school. The agency I use has not been able to fill my Tues. and Thurs. 5-8 slots and can only fill one of my weekend morning 4 hour slots. I know it is hard to understand about family support (they live 8-10 hrs away, have school age children, my parents are deceased, etc..). I hope I answered most of your thoughts on "Why not..?" or "Why can't..?". I know it is not your job to do this ,etc.. My husband says that i have determination like a locomotive; If I have a goal, I will try to accomplish that goal with my aide of course :) I'm no fool :) Direction questions :) 1. Can you suggest a way to write an help wanted ad for a home health aide? 2. Also, post to the List for an agency that has worked well for others in outlying eastern suburbs of Cleveland without being a target ? ( this 'target' subject was brought up on a previous post). This letter took 1 hour 45 mins to type and hopefully spellm check. obviously, not the sectionn before my questions not beenes editted :). have tostop now . fingersdont bend right. afternoon significantly bettert.i cnt typee well noow.. sincerely, Nancy [in ohio] ========== i have deliberately not 'translated' nancy's last paragraph so as to let her own voice with its unique accent shine through any questions or suggestions for nancy's attention can be posted to the list i will copy them to her privately as well my own questions to nancy are: 1. wow, determination is an understatement! 2. how did you find the aides you have now - all through the same agency? 3. how is the agency paid? insurance? hard cash? 4. do you qualify for any government financial assistance or does your husband's employment [assumed] disqualfy you?? 5. have any of your current aides worked for other agencies? 6. do you belong to any support groups? msa or sds? 7. would you consider moving to another location if the support net was better? 8. yes, i know this isn't my 'job' too, [do i have one?] but i am honoured that you asked me to help you. i do so hope that i can. your cyber-sibling in neurology janet janet paterson - 51 now / 41 dx / 37 onset - almonte/ontario/canada http://www.newcountry.nu/pd/members/janet/ [log in to unmask]