Weekly News from PSCKY

Parkinson Support Center of Kentuckiana Newsletter

March 29-April 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)

Director of Outreach & Training: Adina Cook (training@pscky.org)

Call us!502.426.0888

Click here to visit the PSCKY web site

Dear Friends:

This week marks the start of April which, as your print newsletters will remind you, is Parkinson's Disease Awareness Month. Last week, I was honored to receive the following poem from person with Parkinson's disease, Mary Vise. Thank you, Mary, for sharing your thoughts and feelings about living well with Parkinson's disease, and for your mention of the role PSCKY has played in supporting folks. We are grateful for your words of encouragement and for sharing this poem with us all

Living with Parkinson's Disease
a poem by Mary Vise

We didn't know how good we had it
Until we started to shake
Fine and gross motor skills taken for granted
Every movement while being awake

Several tablets are being taken
So we can negotiate
However, after a few hours our limbs have forsaken
The ability to effectively navigate

Then the issue of freezing
Is compounded by muscles that contract
But the brain can be tricked by seizing
Tools that aid in walking to be nearly exact

Our brain doesn't signal the gross motor skill
In our leg and/or in our arms
When dancing or walking would like to will
The limbs to follow through without any alarms

The movements are shaky or cut short
Becoming unsteady on our feet
Hoping not to make a mistake and abort
The stride, which the cane intends to treat

Self-conscious we start feeling
Not being able to perform as in the past
Fear and anger with what we're dealing
A shadow on the future is cast

It seems as though we're drifting
Sometimes not having any purpose or goal
Just day by day existing
Spiraling further and further into a deep hole

The loss of dopamine producing cells
In the striatum of the brain
Eighty percent that no longer dwells
Creating a psychological and physical strain

Writing is especially toilsome
So for some, a modern tool became a blessing
In commanding the size and font so awesome
In printing via the computer is now caressing

Many things are affected
Including problem solving skills
Depression is also detected
As isolation the spirit it kills

Then one fine day a rainbow may appear
Behind the cloud of anxiety and doubt
That we're still in control and don't have to fear
Anything but fear itself, since we still have some clout

Education is the vital key
In leading a near normal life
Following ideas from "PSCKY" you see
Can minimize challenges and strife

Exercise, and a well-balanced meal
Friends and a support group
Lifts the cloud of doom making us feel
Like elevating our head, and not shoulders droop

We still can enjoy the smallest things
From a gorgeous sunset to smelling the roses
Happiness and contentment it brings
Plus empowerment it assuredly poses

Great pleasure is felt when tickling the ivory keys
Or singing to our heart's content
Completely forgetting about our disease
Savoring the moment that is spent

Entering the mind's safe place
Without the reminders of time passing
Just being connected to God's grace
Relishing the experience while it is lasting

In creating a joyous life which we all can share
While combating this disease
Understanding and thoroughly being aware
Of our disability, but owning it will forever cease

OUR CONDOLENCES

Our thoughts are with the families of Marc Connor, who passed away on March 9th, and of Irvin Kaelin, who passed away on March 13th.

WHEELCHAIR ACCESSIBLE VAN FOR SALE

2001 Dodge Grand Caravan - Excellent condition, rear entry conversion van with remote controlled ramp/lift; lowered floor; power driver's seat, windows & locks; manual wheelchair tiedowns; 6 cylinder, 63,000 miles, 2nd owner, Sport model. To inquire further, please e-mail jdc123@insightbb.com

MORE ON EXPANDED VETERANS' BENEFITS

I spoke last week to Lynn Klanchar with the Virginia PADRECC, who was most helpful in giving me more information about the expanded disability benefits now available for veterans who served in theater in Vietnam or Korea and who may have been exposed to Agent Orange or another herbicide that may have caused Parkinson's disease.

If you believe you were exposed to Agent Orange/herbicides in the military, you might consider asking for an Agent Orange Registry exam. Learn more here.

You will find this page VERY HELPFUL in understanding more about the VA's expanded benefits. The military was using herbicides as early as the 1950's. Even if you did not serve in Vietnam, you can still apply for service-connected benefits if you were exposed to an herbicide while in the military which you believe caused your disease or injury. If you need help with an application, you can ask at the local VA office for the names of representatives who've helped other folks file applications.

Other Resources for Veterans:

PADRECC: Parkinson's disease care for our veterans. Please note, Indiana is served by the Philadelphia PADRECC, and Kentucky is served by the Virginia PADRECC.
Vietnam Veterans of America site on Agent Orange related claims, with assistance, for those who may have been exposed to herbicides in theater in Vietnam or Korea. Lynn shared the name and e-mail of Mr. Alan Oates with VVA--who may be able to provide more information about filing a claim. Alan's email is aoates@vva.org and his phone is 540-325-1232.
Link to Disability Compensation information for veterans with PD that may be related to exposure to herbicides.

My thanks to Reeves Hitch for the questions that prompted my call to the VA. Jinn Fuller Renfro

SIT, STROLL or STRIDE WALKING & HIKING CLUB

Jay Miller and Jinn have been working together to launch a walking and hiking club.

SIT, STROLL or STRIDE WALKING/HIKING CLUB FOR PEOPLE WITH PARKINSON'S DISEASE AND FRIENDS!

SIT:

Don't feel like walking? Come on out and sit in the fresh air! Stride

STROLL:

Need to go slowly (or roll)? Need a paved surface? Stroll with us! Friday morning walks tend to be paved & easy.

STRIDE:

Feeling more adventurous? Sunday morning walks will generally offer both an easy/paved walk and an unpaved hike.

THINGS TO BRING:

Water bottle, needed meds
Sunscreen, hat, comfortable & appropriate shoes
Walking stick or trekking poles
Signed waiver for PSCKY files
An attitude of fun and joy as we sit, stroll or stride!

Sierra Trading Post has a wide selection of trekking poles, and is presently running a 20-25% off sale. This might be the perfect time to nab a pair!

OPTIONAL THINGS TO BRING:

Binoculars
A sling chair for more comfortable sitting
A snack

THINGS TO KNOW:

This is a volunteer-led group
Our goal is to encourage people to get out and walk together
Everyone is welcome, even if you aren't up to exercising that day. This group is for people with movement disorders, family and friends. EVERYONE is welcome!
We meet 15 minutes before we start walking. We start walking promptly at the "Launch Time."
We need volunteers to help plan future walks & commit to being at walks
We need people willing to serve as carpool drivers
Walk is canceled if it is raining more than a light drizzle. This will be announced in an answering machine message at 502-426-0888.

SCHEDULE:

Friday, April 9: Anchorage Trail (Kentucky)
1544-1598 Evergreen Rd, Anchorage, KY 40223
Meet at 9:15am
Walk at 9:30am
Meet at parking lot across from entrance to trail.
Level: Sit or Stroll
Bathrooms Available? No
Benches Available? Yes

Sunday, April 11: Iroquois Park (Kentucky)
5216 New Cut Rd., 40214(Taylor Boulevard and Southern Parkway)
Meet at 8:15am
Walk at 8:30am
Meet in front of the Iroquois Amphitheater.
Level: Sit, Stroll or Stride
Bathrooms Available? Yes
Benches Available? Yes

Friday, 16 April: Thurman Hutchins Park (Kentucky)
3734 River Rd., 40207 (River Road and Indian Hills Trail)
Meet at 9:15am
Walk at 9:30am
Meet at the parking lot near the restrooms.
Level: Sit or Stroll
Bathrooms Available? Yes
Benches Available? Yes

Sunday, 18 April: Blackacre State Nature Preserve and Historic Homestead (Kentucky)
3200 Tucker Station Road Louisville, Kentucky 40299
Meet at 8:15am
Walk at 8:30am
Meet at the Visitors' Parking Lot between the homestead & the horse pasture.
Level: Sit, Stroll or Stride
Bathrooms Available? Yes
Benches Available? Yes
NOTE: No dogs allowed. No paved trail, but some easy walks.

Friday, 23 April: Falls of the Ohio State Park (Indiana)
The Falls of the Ohio State Park is located at the end of West Riverside Drive, Clarksville, Indiana. Take Exit 0 on Interstate 65 and follow the signs.
Meet at 9:15am
Walk at 9:30am
Meet in the parking lot behind the Falls of the Ohio Interpretive Center.
Level: Sit or Stroll
Bathrooms Available? Yes
Benches Available? Yes
NOTE: $2 requested for parking, supports the Center. If you want to visit the Museum while you're here, the $5 admission INCLUDES parking.

Sunday, 25 April: Mt. Saint Francis Center (Indiana)
101 St. Anthony Drive Mt. St. Francis, IN 47146
Meet at 8:15am
Walk at 8:30am
Meet in the parking lot by the Post Office.
Level: Sit, Stroll or Stride
Bathrooms Available? Yes
Benches Available? Yes
NOTE: No dogs allowed

If the planned dates and times aren't good for you, volunteer to expand the Club's walking choices by offering to plan a walk on a different day or at a different time!

LET US KNOW YOU WANT TO PARTICIPATE SO WE CAN SEND YOU INFORMATION & THE WAIVER! Email Jinn with your name & address. We are trying to arrange carpooling for folks who need a ride. Please let us know whether you 1) need a ride, or 2) can offer someone a ride. Thank you!

USEFUL DEVICES WORTH CONSIDERING

We were grateful for Rita Pate's presentation on "Recharging Care Partner Batteries" at our Lunch & Learn last Wednesday. (And thanks, Rita, for adding PSCKY to your website!)

In the handouts Rita brought, she listed multiple devices that may be of use to people with Parkinson's disease. Two that we thought you might find of interest are:

E-neighbor: detects unusual activity in the home (showers left running, refrigerator not opened for days)
Fall Monitoring systems: floor sensors send alerts

ON THE WORLD WIDE WEB