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" <[log in to unmask]> To: <[log in to unmask]> 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: > > [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 :-) > ******************************************************************** >