PDF Rated a Four-Star Charity by Charity Navigator

PDF recently received a four-star rating from Charity Navigator, a top ranking given only to charities who demonstrate sound fiscal management. This makes PDF the only Parkinson’s organization to have been awarded both a four-star rating from Charity Navigator and the Charity Seal of Approval from the Wise Giving Alliance of the Better Business Bureau (BBB).

Congratulations, PDF!!!

Basic tips for caregivers and others who help those with Parkinson’s disease:

Be encouraging.
Whether it’s getting the person with Parkinson’s to exercise, eat, dress, or do any other activity, have a positive, patient and encouraging attitude.  Allow the person with PD to do as much for him or herself as possible.  Squelch the tendency to jump up and do a task because you can do it faster and more easily than the person with PD.  Encourage him or her to eat as much as possible independently before offering assistance.

Give verbal cues when necessary.
“Walk with me to the bedroom.”  Talk the person with Parkinson’s disease through activities, like dressing and bathing.  “Let’s put on your shirt.”  “Help me button your shirt.”  “Let’s tuck in your shirt.”  Be patient and encouraging to minimize the stress of the situation.

Contact the local fire department about any special needs the person living with Parkinson’s might have should a fire emergency occur.
The information will be noted and, in an emergency, the dispatcher will be able to tell the firefighters where to look for the person needing assistance (i.e., which apartment, which bedroom), and what special equipment or rescue procedures might be necessary.  Communities vary as to how they record and retrieve this information; in some communities information between fire, police, and emergency medical services is not shared.  Even if your community has 911 emergency services, you should contact your local fire department and emergency service agencies independently before tragedy strikes.

Tips courtesy of
“Parkinson’s Disease: 300 Tips for Making Life Easier”
by Shelley Peterman Schwarz – Demos Health

As Health Reform proceeds in the Senate, neurologists, who treat a majority of Parkinson’s patients, need your help! In the present version of health reform legislation, neurologists are the only specialty NOT eligible for an incentive bonus for serving as a primary care “home” for patients. Excluding neurologists would discourage them from becoming the medical home to many Parkinson’s patients—an important role in the coordination of care. Please Contact your Senator and let them know that it is important to Parkinson’s patients that neurologists be eligible to receive these incentive payments!

Joyce Oberdorf
President and CEO
National Parkinson Foundation

Take Action

When you’ve been blessed with the companionship of the Little Monster we so familiarly and ‘un-affectionately’ call Parkinson’s Disease, you may get tense and tight at the mere mention of… PD.

For some with Parkinson’s, you haven’t experienced much stiffness. Maybe no pain.  Maybe lots.  Whether you have or not, there is something you can do for yourself that will keep you a little looser, a little more mobile, a little happier.  It’s a little treat you can give to yourself.

A massage.  Massage therapy has been proven to improve the patient’s day to day activities, sleeping habits, walking, stress, and more.  Rigidity, stiffness, fatigue and more have also been proven to get relief from this little treat.  If these symptoms aren’t addressed, depression, a poor self-esteem, and or isolation can set in or get worse.

In a five week study where patients with PD were given muscle relaxants versus massage therapy two times a week, both groups showed improvement but the trophy went to those receiving massages.  They showed a greater response in their ability to handle day to day activities and in their stress levels (going down).

We’ve always known a back rub feels nice.  A massage will not only help the rigidity, stiffness, stress, etc., it will leave you feeling great.  Most neurologists or Movement Disorder Specialists will advise you to add this as part of your treatment.  So, grab your car keys and tootle on down to the local massage therapist (make sure you choose someone reputable – consult your doctor), and make yourself an appointment.  Maybe you’ll have timed it well and be next.

Check your healthcare insurance program.  Many will cover this type of treatment to some degree, as it is considered treatment for Parkinson’s Disease.

Cookbook for Parkinson’s patients launched
by Joanne McCarthy

A healthy eating handbook for people with Parkinson’s disease has been launched by the Parkinson’s Association of Ireland.

The handbook contains recipes as well as nutritional tips and advice.

…“This handbook is not only about diet but also answers questions that many Parkinson’s patients may have about taking their medication with certain foods,” she continued.

…advises patients to take their medication and then wait one hour before eating protein foods.

…will help Parkinson’s patients to take greater control of their condition,”…

…shows that cooking for yourself and your family can be easy and stress-free,”…

The handbook is available from Parkinson’s Association of Ireland by calling 1800 359 359, or from Lundbeck Ireland on 01 4689800.

Excerpted from:
© 2009 Northwest Parkinson’s Foundation. All rights reserved.

In a study conducted by the University of Chicago, there seems to be a common thread amongst ‘happy’ people – not watching television.

What’s that have to do with Parkinson’s disease? Plenty.

As a PD patient, you know that you’re already susceptible to depression. Sitting on the couch and channel surfing isn’t going to help you out. Sometimes when we’re depressed, we are heavily focusing on how we feel. In other words, we’re focusing on ourselves. The best way to combat that is to get up and do something, especially for another person.

In the study done by the university, it also stated that happy people spend a large portion of their time socializing with other people, going to church, reading and more. 45,000 Americans responded to this lengthy study, concluding that out of 8-10 activities that happy people are involved in (such as those listed above), TV was the only activity showing a negative response.

In some cases, that may be easy to see why – news reports are depressing, many of the shows offered on prime time TV include broken relationships, immoral subject matter, violence, crude comedy, etc. I don’t know of many shows aired currently where you can walk away and feel better.

For people who struggle with chronic illness, television can add to their depression, depending upon their channel choice. Couple that with today’s unemployment rate in a family who is already struggling, and depression can escalate.

So, how to you battle this darkness if you’re a PD patient? First, if you’re doctor doesn’t have you on an anti-depressant currently, make a point of discussing it at your next appointment. If you’re faring well in terms of emotional stability, you may be an exception. Depression isn’t something to be ashamed of and PD can cause extra stress, anxiety, anxiousness and more. A low dose of anti-depressant may help you cope more easily with all the other side effects of PD.

Whether you choose to go with a prescription or not, get off the couch. Grab a cane, a walker, whatever it takes to get you moving around the house or community. Get someone to walk with you or take you for a walk. There is so much beauty to behold, even if it’s on a busy street – find a smile on someone’s face.

Cant’ hold a book in your hands? Have someone read to you or get an audio book. There are hundreds of popular titles out today.

There are several different software programs and equipment add-ons for computers now that enable the disabled. Check into them for yourself or for your loved one. These are beneficial for the patient who can no longer type but can still hold a conversation. It enables face to face from anywhere in the world. Support groups are also now accessible this way.

If you are physically able, volunteer at a preschool. They could always use help and what better lift-me-up than to play with toddlers?

Volunteer at the library, for a youth sports team, for tutoring, by reading to an elderly patient in a nursing home. The possibilities are endless. The main idea is, do something. Don’t just sit there. If you are struggling with depression, planting yourself in front of another episode of ‘As the World Turns’ will only enable your world to shut down.

to tell you of a group called the Regulars

of their vision and  plan …it’s spec-tac-u-lar!

‘Ya all listen close to this rhythm and rhyme

Cuz it’s gonna make you smile – so have a good  time

Where do we begin with our debut rap ?

You may want to sing – you may want to clap

just so you‘ll understand – we want all to see

Sharing this journey  will help us fight PD!

We is just two chicks with a problem in our brain

We be shakin’ and we be stumbling, and it’s really quite a pain

But we be makin’ da best of this struggle we are in

Cuz we are staying con-fi-dent that we will win!

We blog at Parkinson’s Journey ‘cuz that is where it’s at

we write of many things and to some we tip our hats

Today we’re braggin’ on the Regulars, we hope that you will too

cause they climb up real high mountains  to help me ‘n you

They’re a special group of gals and special group of dudes

who pack it up, head on up, to new al-ti-tudes

to make the world aware of Parkinson’s disease

‘together is one’ – that’s! what they believe!

Their mission is to tell ‘em all around this big ‘ol globe

Why this year in July they will climb Mount Kil-li-man-jar-o!

It’s not just for Parkinson’s that they sacrifice this way

But for the millions with Alzheimer’s who are suffering today

it’s for these two groups and their families they really care

that’s why Enzo made a plan and then gave his friends a dare

So simple yet so profound it starts with a “T”

“together is one”  we’ll change his-tor–y

Uniting our talents, our minds and our souls

NO doubt, great things will happen …no matter how high the goal.

Enzo had this vision to climb a mountain a year

with hope after ten that he’d could enjoy a beer

but ‘til the mission is finished and cures are found

Enzo nor his team will be standing on level ground

Regulars, we be prayin’ for you ev-e-ry day

for your strength and your safety and success all along the way

Many more go with you in spirit, as you rise

Reaching for our dreams with Kili’s summit, square between your eyes!

VICTORY we will realize when you shout loud from the top,

‘together is one! and ‘We will not stop!’

only when the cures are finally found and not before then

we’ll take on brand new challenges and then we’ll start again

when PD and AZ at last become extinct

we can tell the world we beat them with all of our feet

taking one step at a time, stepping together as one-

Ahhhh….it’s time for a water break, as it’s been almost two minutes since we first begun…..

Gulp gulp gulp….

We’ve something important to say so let’s take a lil break from this rhyme

To awaken anyone who’s asleep, exhausted from the climb

Now if anyone’s still listening, if anyone believes

If we’ve truly got your attention, then rap on with me:

I’ll say the final lines and you listen really close

Then we’ll say it together …we just got to boasttt!!

So here it goes….. the last of our rap,

Slowing it down for you join in, it will be a snap….

(slower, with emphasis)

we believe our goals are special,

we believe they will be won

for nothing is ever impossible

when ‘together we are one!’

Written for the brave and compassionate men and women who will climb Mt. Kilimanjaro in July 2009, and for our friends and their families who have lived with and are living with Alzheimer’s and Parkinson’s! Judy Hensley and Sherri Woodbridge of Parkinson’s Journey (www.Parkinsonsjourney.com)

I’d like to encourage everyone with or without PD, to find some way to let your friends, your community, your clubs, and/or your online contacts know more about PD. There are many ways, but I’ll throw out a couple: send someone a link to this site or one of your favorite PD sites, post a link to the Parkinson’s Unity Walk to be held April 25 www.unitywalk.com on your site or a link to a local event or support group. Attach with it a summary of your story with PD–make it personal.

I have always thought that we help ourselves in this manner: ME Tell=Awareness for others=Action by others (donation/volunteer) = MORE Awareness = CURE sooner for PD!

So, get to work my friends…I’d rather have a cure sooner. Wouldn’t you?

Also, here’s another little note of encouragement I found this week. I’d like to dedicate it to my blogger buddy, Sherri! PD can only take away your dreams if YOU let it!!

Taken from Go After Our Dreams (by Collin McCarty, Blue Mountain Press, CO):

We live in a world that sometimes lacks understanding and forgiveness. There are times when nothing seems to make sense, and times when it never will. Sometimes the most we can hope for is an inner patience …knowing that the winds of change will eventually send a fresh new breeze into our lives. Sometimes the most we can hope for is someone who understands…who touches us and tells us – without need for touching or words – that it will be OK, and we know that it will be because they are here for us. And sometimes we just need to remember…no matter what the world sends our way, that it is so important to go after our dreams, and to reach for our goals…ever forgetting that, with every smile and effort and hope…we get a little closer…every day.

And Judy might add: with every blog! Thanks Sherri for being an inspiration to me!

Hugs to all of you! NOW get to work creating awareness and chasing your dreams!