Weekly News from PSCKY

Parkinson Support Center of Kentuckiana Newsletter

September 28-October 4

The mission of the Parkinson Support Center of Kentuckiana is to provide support services that improve the quality of life for the Parkinson's community, to promote public awareness; to contribute to the local and national efforts to raise funds for support, and to accelerate the research for a cure.

PSCKY

Executive Director: Jinn Fuller Renfro (jinn@pscky.org)

Director of Support Services: Katherine Autin (support@pscky.org)

Call us!502.426.0888

Click here to visit the PSCKY web site

Dear Friends:

Our thoughts are with the family of one of PSCKY's founders, Judy Spencer, who passed away on Sunday, September 20th. Judy lived her life bravely and well, and did so much good for our community along the way. The original PSCKY office was her dining room table, and she worked tirelessly to guide PSCKY in its early work. We will truly miss her beautiful presence. We have copies of Judy's book of poetry about living with PD, "Telling My Face to Smile". We'd be happy to send you one as a remembrance of this hometown hero; drop us a line at info@pscky.org. And we are grateful to all who've chosen to honor loved ones' memories with gifts to PSCKY; thank you!

Here's Judy's poem, "My Favorite Exercise"

I went to the Laugh Doctor
and he told me to laugh.
It's good for your body.
It's good for your head,
the very happy Laugh
Doctor said.
So I laughed and I laughed.
I laughed when life was funny.
I laughed when it was not.
I laughed when I
should, and I laughed when
I shouldn't.
I laughed till I cried.
I wore myself out.
I might die laughing
if I don't watch out.
My children fussed.
My neighbors wondered.
I think I actually scared my
little granddaughter.
But my body cheered.
My blood pressure jumped.
A healthier, happier me
was the very happy result.

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WANT TO CHAT ABOUT IT?

There are many on-line message boards, a type of virtual support community, for people with Parkinson's and the folks who love them. Healing Well has an active board, as does MDJunction. We're also fans of the Young-Onset PD Chat Room.

Telephone

Here at PSCKY, we've been doing some research into starting new PHONE SUPPORT GROUPS in 2010. We're thinking about:

A phone support group for the newly diagnosed, of ANY age.
A care partner's phone support group, for those who love someone who has PD.
A DBS phone support group, for those who've had or are considering DBS.
A "general" support group, which might include educational speakers.

We'd like to know what you think about this idea. We understand that some days, "making a meeting" can be hard. Here's some questions we'd like to hear from you about:

Would you prefer a day-time phone meeting or an evening meeting?
Would you prefer a week-day phone meeting or a weekend phone meeting?
Would one of the groups described above meet YOUR needs? If so, which one/s? If not, what sort of phone support group might you be interested in?

Thanks, in advance, for sending YOUR answers to these questions to jinn@pscky.org .

PD TRIALS

We regularly follow clinical trials related to PD, and were particularly interested this week in the Gene Transfer Study for People with Advanced Parkinson's. Taking part in clinical trials is something we can do to help researchers find effective therapies and a cure for PD. We suggest that you regularly visit PD Trials and search by location to see what new clinical trials are available.

Don't have Parkinson's? You can still make a difference! The Parkinsons Associated Risk Study (PARS) is the largest study involving first-degree relatives of individuals diagnosed with PD. The goal of the PARS study is to better understand who may be at risk for PD so that it can ultimately be prevented before it starts. The initial test is sent by mail and completed at home.

TIPS FOR OVERCOMING SLOW EATING & SWALLOWING