David,

Since you did me the honor of inclusion in this discussion, I will add that
when I had ovarian cancer my high school students were absolutely wonderful,
looking after me, helping me.  I had my first surgery when school started
and they were all waiting for me several weeks later even though they didn't
know me.  I told them everything.   One said "there should be a sign in his
room 'Miss Brown was here'".  Another said '"you've shown us what somebody
can do (with a bad situation)"    Yet another offered to get me marijuana.
Ha Ha  I didn't take him up on it, but thought this was a touching gesture.
This was 1979-80, 81. Another took my AP European History class/seminar so
she could look after me very day.  I was very lucky. They were not your WASP
types at all, but all races and creeds, I don't know if this had anything to
do with it, but it might have.  They treated me much better than my nieces,
brother and his wife.
Ray
----- Original Message -----
From: "DAVID LEWIN" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, June 11, 2006 3:35 PM
Subject: Re: On being a parent witth PD


> To Bev and Ray,
> I don't know whether the self-absorbed behavior of teenagers is a
> genetically derived adaptation or the consequence of recent culture, but I
> do know they have an especially hard time empathizing with a once  all
> powerful parent who has developed a chronic illness.  The easy explanation
> is that it is a matter of the survival of the group.  No group of hominids
> trying to survive on the brushland of Africa would have survived long if
> they expended a great deal of energy trying to keep a disabled parent
> hobbling along who could hardly keep up.  On the other hand, maybe a
> teenager's entittlement behavior is a result of having too much time on
> their hands lately.  Up until the recent past, most teenagers would have
> been apprenticed by the time they had reached thirteen.  Only in the last
> few hundred years has their evolved this party-time culture among
> teenagers
> where they don't have to work, they are fullly supported, and they don't
> know what to do with their lives but feel compellled to have a good time.
> I
> remember the feeling of wanting to be truly free to explore the world well
> into my unapprenticed twenties. So, before our children dump us into
> nursing
> homes because they don't want to be bothered, perhaps we should bring back
> the Middle Ages.  But I suppose, it's too late for that. David
>
>
>>From: Beverly Bashe <[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: Sat, 10 Jun 2006 14:02:48 -0400
>>
>>Those are wise words, David.
>>
>>Your comment, "...they don't understand illness," is very appropriate.  It
>>reminds me of a story.
>>
>>Years ago, a friend of mine, Anne Marie, went to the hospital after
>>suffering a relapse of breast cancer.  She didn't want to tell her 4
>>teenage
>>children (3 girls, 1 boy), fearing that she'd make them worry.  Anne Marie
>>was the ultimate mother.  The children were musical geniuses.  Anne Marie
>>used to take them on the train into Manhattan at 5:30 a.m. each day to go
>>to
>>the Manhattan School of Music.  She was totally devoted to them.  When she
>>realized that the travel time was inhibiting their friendships, she
>>brought
>>them to the private school that I was teaching at in our home town.  Anne
>>Marie, even though she was in pain and getting no help from her doctors,
>>volunteered as an aide at the school, including in my kindergarten class,
>>so
>>that the 4 children could go there at a reduced tuition.  She was one of
>>the
>>dearest people in the world, even tempered, sweet, intelligent,
>>articulate...I really can't say enough about her.  On Saturday, she'd
>>bring
>>the kids back into Manhattan for music lessons.
>>
>>When she went to the hospital, I would see her every day after school.
>>She
>>asked me what to say to the children, because her heart was breaking .  I
>>told her that she must, absolutely tell them the truth and give them a
>>chance to deal with it.  I also said that no matter what she would say to
>>them, their imaginations would have been making it worse.  She followed my
>>advice, brought them in the next day, told them everything...and you
>>wouldn't believe what they said to her: "Oh, is that the problem?  We
>>thought you didn't love us anymore."
>>
>>After all she'd done for them, been to them, shown them her love, this was
>>what they'd collectively come up with.  Can you imagine???  Anne Marie was
>>stunned, as was I when she phoned and told me of their conversation.  This
>>taught me a lot...especially not to second guess what kids were thinking,
>>because it probably would not be what actually was in their minds!
>>
>>As to your advice to let him be "the bad guy," excellent!  My goodness,
>>David, you're "right on," in my humble opinion.
>>
>>Bev  cg David 70/59/31???
>>----- Original Message -----
>>From: "DAVID LEWIN" <[log in to unmask]>
>>To: <[log in to unmask]>
>>Sent: Friday, June 09, 2006 10:01 AM
>>Subject: Re: On being defined by our name
>>
>>
>>>Dear Elizabeth,
>>>There is no reason to panic.  Living with a teenager is usually very
>>>stressful.  Right now you should think about taking care of yourself.  I
>>>am
>>>a parent of several teenagers and I too had the shock of my wife driving
>>>me
>>>away and trying to turn my children against me.  Teenagers are very
>>>self-absorbed, they don't want to be caretakers, they are afraid of
>>>illness,
>>>they do not understand illness.  They just want to have fun.  As my
>>>sixteen
>>>year old son said, "Your illness is ruining my childhood."  If your
>>>daughter
>>>wants to live with her father, don't fight her on this.  You say you live
>>>close to your ex-husband.  Good.  Let him be the one who fights with her
>>>when she comes home at 2 o'clock in the morning.  Let your husband be the
>>>one who is upset when she takes the car.  Be the refuge for your daughter
>>>when she rebels against his authority. Let him be la bete noire. Look to
>>>your future and your needs.  She'll come back to you when she's older and
>>>wiser.
>>>      David
>>>
>>>>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
>>>>
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