Janet, You're an angel, huh? :) Here's a hug for you. {{{{{{{{{{{{{Janet}}}}}}}}}}}}}}}}} Sharon -----Original Message----- From: Janet Paterson <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Tuesday, October 27, 1998 10:32 AM Subject: Need Assistance please / from nancy in ohio >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] >