Re: CAMILLA's letter

[Jasper McKlegan <twigood@xxxxxxxxxxx>]

It's also the first one to get replaced


> From: Greg Sterling <sterling@xxxxxxxx>
> Reply-To: Parkinson's Information Exchange Network
> <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> To: PARKINSN@xxxxxxxxxxxxxxxxxxxx
> Subject: Re: CAMILLA's letter
> Date: Thu, 8 Feb 2001 17:28:23 -0500
>
> Ivan,
> The more public exposure the better.  Remember, the squeaky wheel gets the
> grease.
>
> Good luck, and keep us infomed.
>
> Greg
> 48/35/35
>
> ----- Original Message -----
> From: "Ivan M Suzman" <cureit@xxxxxxxx>
> To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
> Sent: Thursday, February 08, 2001 3:58 PM
> Subject: Re: CAMILLA's letter/"You are better off NOT returning here" (ER)
>
>
> > Dear friends,
> > I have lost weight and have suddenly become worn down . It is such
> > than t last night, my PCA called another one and they drove me to the ER
> > at about 4:30 PM.  By about 7:15 PM,
> > BOTH had to leave , I was alone, and I had another ER  episode that
> > bordered on personal disaster.  More details are placed below.
> >
> > THANK YOU , Camilla, for your wonderful letter to Commissioner
> > Concannon.  The deadline  for submitting letters is Monday ,February
> > 12 at 4:30 {PM).  I  hope that if anyone else may be writing
> > to the Commissioner,  that you  feel comfortable enough  to post the
> > letter, or at least,
> > send a copy privately to my e-mail address:
> >
> >  cureit@xxxxxxxx
> >
> >
> >  Thanks also to Hilary  Blue, Linda Herman and Marion Dinan ,
> > Jo Ann Coen,  and also, Greg Sterling, for your  supportive messages.
> >
> > I am being asked to go public on TV with my lawyer- what do people
> > think?   So far,  I am afraid to make the commissioner feel unduly
> > pressured, but on the other hand, his decision will determine
> > just about everything in my future. Maybe my lawyer could
> > be quoted, and I can stay aside, not seen.   Is that better?
> > The reporter, Diane Atwood, has worked also as a nurse,
> > and she is very sympathetic.
> >
> > Do some of you remember the two (January and April, 1998)
> > "Lunchbreak" videotapes I sent out to many PIEN'ers, which I
> > did, one with my neurologist, and one with my PWP
> > friend, Karen, and her husband, Jon??  The interviews
> > were co-hosted by Diane Atwood
> > in 1998.   I am waiting to follow the opinion of my lawyer.
> >
> >
> > I had another draining Emergency Room trip
> > last night.  I It took two hours to be assigned a bed,
> > i felt the doctor wanted to take blood before I fully understood.
> > After trying to explain about the $15,00 per night for PCA's
> > and the lack of coverage, they tourniquetted me.  I was
> > tired an had noone there with me. I did remain quiet, however,
> > and a bible was in my bag.
> >
> > TWo hours more passed and I woke up in a frozen
> > state.. My right arm felt like a frozen , folded chicken wing
> > and my right back muscles had frozen.  I broke out in a sweat trying to
> > take my three drugs with no water and
> > NO CALL BUTTON.   Finally I starting calling for help.
> >
> > I had noone there and finally  I realized I was in vital
> > danger as i had been left alone.  I somehow managed to
> > force myself up with clothes  askew, and pants
> > not  fastened completely.
> >
> > My voice was too soft, so I shuffled in an off-state to
> > the front desk.  That took about two minutes, past two more
> > doorways to examining rooms.  I asked if I had been admitted.
> > The ER physician said no, so i told her I would like to
> > obtain permission to go home.  She consented.
> >
> > But what if my legs had not carried me?  I was very
> > lucky to get out.
> > I called a friend who came and got me.
> > I was wheeled out, shirt buttons still not fully done up, and unable
> > to pass water for  them.  Just as se reached the exit
> > the doctor came rushing up to say my blood profile
> > looked wonderful, even the Tasmar  - related enzymes
> > were nice and low (SGOT and SGBT?).
> >
> > Looking back at yesterday now, I can hardly
> > believe what had happened, as I had essentially been
> > left in a back corner in a COLD room , and I am
> > hypothermic.
> >
> > The man who helped me dress and pushed the wheelchair
> > said he had never seen YOUNG-onset PD, nobody knew
> > what to do about the PCA low pay issue,
> >
> >  and he advised that "You are better off NOT returning here"
> > because my home is much safer.  I just hope that either my
> > family doctor or my neurologist tries to convince the DHS,
> > at least for ONE night , to provide a PCA, so I can rest a bit,
> > and ward off further difficulty.
> >
> > He said even in the wards upstairs, hospitalizations for
> > PD especially, should at least ideally, be done with an MD's
> > agreement, and should all be planned in
> > every detail for a PWP with off - period paralysis like me.
> >
> > He added that he had done ER  work for 20 years.
> > His uniform included a navy blue shirt -was he a
> > technician? an orderly?  I don't know but he was
> > in any case a, the only one who KNEW that I was stressed,
> > but not , thank God, demented.
> >
> > How many of the ER people though I could talk to anyone
> > rationally.  The public might equivocate PD with swift dementia.
> >  Late last night,  I suddenly had this strange feeling
> > come over me, JUST as I was being wheeled through the
> > most external waiting room of the ER, about war zones
> > and concentration camp cattle cars, and desolate
> > train stations filled with fearful , gaunt people.
> >
> > Outside, we found MOUNTAINS of frozen
> > snow, ice-slicked walkways and snowbanks
> > that are 8 or 9 feet high walling us in.
> >
> > THANK YOU CAMILLA and everyone.  Please
> > keep writing.  Anyone can send a copy to me .  Meanwhile
> > I am trying to find my lawyer, because tonight
> > looks like another uncovered night.  I will try to do bettor than
> > ever,and keep myself quiet,
> > and hope for the best.
> >
> > My first nearly certain coverage since Tuesday, at night,
> > is  tomorrow (Friday) .
> >
> > The air is getting rather raw and the sky has gone white.
> > Unfortuatley , another big coastal storm is arriving.
> > THis past one on Monday brought us about 15 inches
> > of snow.
> >
> > Spmewhere underneath these white snowbanks are
> > 20 James Parkinson's tulip bulbs, that my PWP friend,
> > Karen Bardo saved for me to buy. I planted each one in
> > late September, in rich garden soil along my ramp
> > that leads to my house.
> >
> >  I can hardly wait for their appearance.
> >
> >
> > Ivan S.
> > :-)
> >
> > On Wed, 7 Feb 2001 12:50:45 -0500 Hilary Blue <azure2@xxxxxxxxx> writes:
> > > YOU SAID IT!
> > > i just hope he reads - and understands - it!
> > >
> > > what scares me - and i think Linda Herman will confirm this - is
> > > that Maine
> > > appears to be one of the more enlightened and progressive states
> > > with regard
> > > to  the provision of adequate home health care!
> > >
> > >
> > > hilary blue
> > >
> > >
> > >
> > >
> > >
> > >
> > > Camilla Flintermann wrote:
> > > >
> > > > Today I am sending this letter--hope it helps.....
> > > >
> > > > Mr. and Mrs. Peter C. Flintermann
> > > > 114 Creekside Lane
> > > > Oxford, OH, 45056
> > > > Feb.7, 2001
> > > >
> > > > Mr. Kevin Concannon, Commissioner
> > > > Dept. of Human Services
> > > > 221 State Street
> > > > State House Station 11
> > > > Augusta, Maine 04333 USA
> > > >
> > > > Dear Mr. Concannon,
> > > >
> > > > We are writing to you because of our concern about the new
> > > reduction in rate of pay for caregivers of the disabled in Maine.
> > > Although we live in Ohio, we feel this is something which affects
> > > all of us in the disabled community.
> > > >
> > > > My husband has had Parkinsons disease for nearly 12 years, and we
> > > communicate with Parkinsonians all over the world by email. I also
> > > started a separate list for their caregivers 4 years ago. Thus we
> > > are well-acquainted with the needs of this community, wherever they
> > > may live, in addition to our own personal experience.
> > > >
> > > > As it happens, my husband does have a loving spouse and enough
> > > income to meet the need for a paid helper to relieve me at times. We
> > > pay her $7.00 per hour, and the rate for a care aide through an
> > > agency is at least double that. No wonder we were horrified to learn
> > > that Maine is now paying $0.93 per hour to aides who assist persons
> > > in the Medicaid waiver program. (This is based on the pay proposal
> > > which would cut the pay for the entire night shift for an aide from
> > > the current $15.00 per night, to either one hour of help at $8.50,
> > > or a maximum of $17.50 for two hours of work ) In Ohio the rate is
> > > an average of $ 8.50, minimum $7.50, maximum $ 10.00 per hour.
> > > Medicaid pays the agency $23.00 the first hour and $ 14.50
> > > thereafter for
> > > > a single day. I do not understand how you the state of Maine
> > > expects to find competent, dependable people who will work for an
> > > amount which is so much below even minimum wage.
> > > >
> > > > I should say that we are acquainted through the Parkinson
> > > community and email list with Mr. Ivan Suzman, and are aware of the
> > > controversy around the reduction in care hours which is proposed in
> > > his case. While this affects all low-income handicapped persons, we
> > > have a particular concern for Mr. Suzman, because of his
> > > circumstances.
> > > >
> > > > It may be difficult for personnel in your bureaucracy to
> > > understand how a person can be able to drive, be active, and
> > > function apparently well one hour, and then be frozen and helpless
> > > in the next. I can assure you that this is typical for Parkinsonians
> > > who have had this terrible disease for many years--it is true for my
> > > husband, who fortunately has a loving family member to depend on as
> > > Mr. Suzman and countless others do not. It is also true that each
> > > victim of Parkinsons experiences it differently--different degrees
> > > of each symptom, different medications and responses to them. This
> > > disease affects people from head to toe, in all body system, as it
> > > progresses. Believe me, not all Parkinsonians are Michael J. Fox !
> > > >
> > > > Please use your influence to see that there is better
> > > understanding of our situation, and that individuals like Mr. Suzman
> > > are not penalized because of a lack of understanding. It would
> > > surely cost the state of Maine less to provide appropriate care for
> > > him in his own home than to force him into a nursing home at the age
> > > of 51, a totally inappropriate solution and one in which the expense
> > > would be much greater.
> > > >
> > > > Thank you for your consideration of this situation. Please feel
> > > free to contact me if anything I have written is unclear.
> > > >
> > > > Sincerely,
> > > >
> > > > Camilla H. Flintermann
> > > >
> > > > email: flintepc@xxxxxxxxxx
> > > > Camilla Flintermann, CG for Peter 82/70/55 Oxford, Ohio
> > > > <flintepc@xxxxxxxxxx>
> > > >
> > > > on the web at 
> > > > and also at 
> > > >
> > > > "Ask me about the CARE list for Caregivers of Parkinsonians ! "
> > > > And visit the CARE webring at
> > > 
> >
> > ^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
> >  Ivan Suzman        51/39/36       cureit@xxxxxxxx      :-)
> >  Portland, Maine    land of lighthouses           deg. F   :-)
> > ********************************************************************
> >

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