Dear Parkies,
The Care List received this from Camilla. I don't know if it's been shared
with the Parkinson List before or not, but it's so darn good it wouldn't
hurt if it were sent one more time anyway. It's long but worth it.
Sharon Starr, CARE Elf and caregiver to Mom, 76/50 (age now/age diagnosed)
Florence, AZ [log in to unmask]
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On 12/07, Camilla wrote:
This should be shared, if it has not already been --- a CARE member 's
daughter sent it to her, and she sent it to us. Perhaps Sharon will post
it for me on PIEN (unless you know that it has been there before.) Sounds
like our friend Don McKinley, who just "keeps on keepin' on".....O wish all
PWPs could have this positive attitude.....
***********************************************
>Date: Tue, 07 Dec 1999 00:58:58 -0500 (EST)
>From: [log in to unmask]
>Subject: Fwd: Fw: We'll be dancin' in the streets...
>To: [log in to unmask]
>MIME-version: 1.0
>Original-recipient: rfc822;[log in to unmask]
SNIPPED
>>This was just posted on the MGH NeuroWeb Forum by one of our more eloquent
>>members. The forum is located at:
>>http://neuro-www.mgh.harvard.edu/forum/ParkinsonsDiseaseMenu.html
>>Don't Give A Burglar Help w/ The Couch
>>This article submitted by greg on 12/2/99.
>>
>>I was reading a few posts by people who were discouraged and seeking ways
to
>>cope, to accept, basically to feel better emotionally in dealing with a PD
>>diagnosis and its symptoms. It has been on my mind lately also, so I
thought
>>I'd take a shot at expressing my own current frame of mind at about five
>>years out.
>>As to acceptance of physical limitations and fears for the future, I am
not
>>sure that one really ever "accepts" their PD, in the sense that it no
longer
>>occupies too much of their thoughts and time and energy. It is not a gift.
>>Not one that I would accept if I had the choice. Rather, Parkinson's is a
>>burglar, sneaking in and stealing whatever it can; and worse, it keeps
>>breaking and entering, and all we can do now is replace what is taken with
>>the second hand furniture of medications. And that replacement furniture
is
>>quite often lumpy and uncomfortable and even has a few springs that may
>>poke us occasionally.
>>
>>It is rotten luck, of that there is no doubt. That's why we have all come
>>here to support and be with one another.
>>
>>But I think what one can do is "live" with Parkinson's. Or perhaps more
>>accurately, one can learn to live without the things that one once took
for
>>granted and have been stolen by PD, and also to live with the knowledge
that
>>for a while anyway, one will continue to slowly lose a few more things as
>>time moves on.
>>
>>After almost five years I know now that I am in for rougher times for
>>awhile. It's something the "vets" here could, and have, told me, because
>>they have been on this particular path a lot longer. But being vets, they
>>don't talk as much about it. They live with it and carry on as best they
>>can. And they are still here, like Mary S. who is 26 yrs out and traveling
>>to Australia soon. But with the knowledge that they are still here, I
figure
>>that as long as I don't just roll over and stop bailing, this boat will
>>float until it gets to drydock and undergoes some badly needed repairs.
>>
>>Because unless we are extraordinarily unlucky, we are soon going to be
among
>>the first people to have a serious and previously irreversible
neurological
>>disease and be cured of it. That is so astounding and extraordinary that
it
>>may be hard to imagine, but it is true.
>>
>>So I no longer try by some act of pure will to get back some things I
CAN'T
>>have right now - a normal walk, a straight back, as sharp a mind, relaxed
>>muscles without pain. I live without them and do my best not to let that
>>interfere with the things I have not lost, like the ability to hear
laughter
>>or music, or to observe and be in the middle of a crisp morning at the
lake
>>near my house, to appreciate my friends, or to scuff through fall leaves
>>(however awkwardly) with my 5 (today) yr old niece who is so fascinated
with
>>my new 24/7 pillholder that you would think it held the key to life
itself,
>>which maybe it does. And I remember that the pillholder itself was a
>>gift, just as this forum is.
>>
>>I think that the most important thing is not to let PD steal anything that
>>you can nail down. Don't let it take what you can hold onto. It is strong
>>enough to TAKE many things, but almost as bad it will also greedily
receive
>>the rest of you as a gift if you let it. Don't. Don't give it anything.
>Make it fight for every piece of you over the years.
>>
>>You, we, will win in the end. I believe that.
>>
>>Right now it's raining in my neck of the urban woods, and I hear at this
>>moment. I have always loved the rain.
>
>>See you at the dance.
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
