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/
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>