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:

 [log in to unmask]


 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 <[log in to unmask]> 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: [log in to unmask]
> > Camilla Flintermann, CG for Peter 82/70/55 Oxford, Ohio
> > <[log in to unmask]>
> >
> > on the web at http://members.tripod.lycos.nl/genugten/flinterm.htm
> > and also at http://www.geocities.com/camillahf/index.html
> >
> > "Ask me about the CARE list for Caregivers of Parkinsonians ! "
> > And visit the CARE webring at
> http://www.crosswinds.net/~caregivers/index.html

^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
 Ivan Suzman        51/39/36       [log in to unmask]      :-)
 Portland, Maine    land of lighthouses           deg. F   :-)
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