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One of my real pet peeves has been the use of the term "Parkinsonians." Yuck. People with Parkinson's disease - put the person before the disease. No one says "epileptics" anymore - "cancerians." I see "Parkinsonian" in stuff from national organizations...time to move forward on this. It really does matter. Meg -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]]On Behalf Of Priscilla Rodrigues Sent: Friday, June 09, 2006 9:54 AM To: [log in to unmask] Subject: Re: On being defined by our name Hello Iwish to quote A note from DR Jill You are not your disease I so often hear patients take ownership of their Parkinsons diseaseby saying My Parkinsons disease is bothering me How often have I heard doctors and nurses refer to people as Parkies In Navajo culture the y believethat words are reality,the words I say are partly reponsible for giving the patientParkinsons disease This is an important message.We all have to be careful as doctors or nurses,practioners and patients not to define or label others or ourselves by a disease.If we do this then the disease and its symptons become our focus We risk losing the realfocus of what we are.Eg Iam an accoutant with a wife and children a man who koves music reading an has a keen sense of humour and that I am not a Parkie Ronal Rodrigues >From: El Che <[log in to unmask]> >Reply-To: Parkinson's Information Exchange Network ><[log in to unmask]> >To: [log in to unmask] >Subject: Re: On being defined by our name >Date: Fri, 9 Jun 2006 04:05:35 -0400 > >Hello, > >I am more afraid about the new ways of speaking about PD as a psychologic >disease or addiction symptoms resulting of agonist effects... After years >of studying "physical symptoms" the new trends seems to look on the size of >"psychological effects" or in a view with Parkinson Disease is a "demence" >as some people say in France. I just come back in Canada (Quebec) from a >trip in my family in France and I could tell you that people with PD are >not >open like us in North America to tell openely they have PD. Because the >diseases relatives to a brain disorder is viewing as "suspect" and it is >sometime a shame in a family to have one person having that. It's almost >like MST diseases...Disease from my point of view is not a bad word... a >disease, in particular with physical symptoms like mouvment disorders is a >"clean disease" because it is not something "bad" that you did to have it >(ex. AIDS should be more problematic to announced it around a table in a >business lunch or at work. And please, I understand and compatise with >people who had any diseases, I just took AIDS as an example to make a >point: > disease that we could speak about and, not be proud to have it of >course, >but not be ashamed too. > >Until now I was very open to talk about PD around me but now I begin to >feel >more nervous, anxious... > >My personal preoccupation is people using PD effects on humor or even not >be >a "stable person because you have tremor and in a nervous situation you are >shaking more and more"...to destroy the confidence in the PD person... as I >recently divorced, my ex-husband still plays with the words about "my PD >and >volatility effects" and my daugther, who was very close to me younger, is >now closer to him as he is a very stable person ! I don't know exactly to >explain me but I hope you could understand that I am afraid to lost my >daugther.... I am a good mother and still coult take care on her.... but >they began together lifing about somes mistakes I should make... and after >that said some words, but still in a joking way, about my driving way (I >"take" sometime the corner to close and a wheel jump a little bit on the >sideway) but I am driving prudently and I am not a "public danger"....but >as my daugther became "a little bit afraid to be in my car", she prefered >taking the bus or having his father taking her....inch by inch, day by day, >my ex-husband maid some points and I am not in a good position to fight >with >him. > >The worst for me now is that they told me recently that maybe next year, as >she has now 14 years old, she could decide to live full time in his house. >Legally divorced just last december, we had the "garde partagée" which is >one week for her to be with me, one week with him. We live closer and even >if it is not the best way of living, I could not imagine my life without ma >daugther at home, even if she is in a bad mood. > >So, I do not want to cry on my condition but I needed to tell that... With >the hope to have some understanding in that place, maybe some of you had >passed by a same way and tell me or give me some hints to do or things to >avoid. > >Thanks anyway for having reading me until the end :-) > >Elisabeth > >_________________________________________________________________ >Vous cherchez une maison? Visitez Sympatico / MSN Immobilier >http://mamaison.sympatico.msn.ca/Immobilier > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: >mailto:[log in to unmask] >In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn