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Caring for the Caregiver – An Interview with The Inspiring Esquire

July 28, 2010

1) What is a caregiver?

A family member or non-family member, paid or unpaid, full or part time who provides care to someone whose medical condition requires them to be cared for.

2) And you are a caregiver?

I became a caregiver in 1996 when my daughter was born without the ability to breathe and cerebral palsy.

Feed through tube

3) What was that like?

Emotionally difficult, Feeling of powerlessness, Fatigue, etc.

Pulled in so many directions, No time to yourself.

STORY: Joseph’s question

4) At some point did you also become in need of care?

I became a care receiver in 2003 when I was diagnosed with young/earlier onset Parkinsons.

5) What was that like?

Same Feelings as caregiver – Isn’t that  Interesting? But in addition,  helplessness, frustration at loss of independence, uncomfortable with how others react, regret if you had some part in your condition, “why me” if you didn’t.

6) After recieving your diagnosis, did you make any “life changes”?

In 2008, I left the top attorney position at a major corporation to teach several undergraduates classes at the University of Louisville, provide inspirational presentations, consult with companies to proactively prevent harassment and reduce injuries in the workplace, and use my law license to represent the disadvantaged.

7) How have these changes worked out?

Struggle, the product is works exceptionally well, the PD is not an issue, but, like any business, getting in front of the right people is frustratingly difficult. Maybe your listeners can help me there.

8) I understand one of your Learn Success Today enhancement principles is to “Raise Your Level of Awareness,” how has being both a caregiver and care receiver raised your awareness level?

The care receiver receives the care, as they should.

Whatever the reason, care is needed.

People empathize with the trauma and hardship endured by the care receiver.

Sometimes it is their fault (smokers, accident victims, whatever), but very often it s not (PD, birth defects, etc.)

9) What about awareness about the caregiver?

Whether due to family relation or employment, one or more individuals take on the, often thankless, role of caregiver.

Very little recognition is provided to the caregiver

10) Who is there to care for the caregiver?

Often noone. Must take care of themselves.

11) What care does the caregiver need?

Time to take care of themselves: eat right, exercise, recharge batteries, relaxation

Avoid falling into the martyr trap.

12) How can we get the caregiver what they need?

Set up a schedule and stick to it as much as possible.

Agree upon guidelines of what the care receiver is going to do for themselves.

Regularly discuss how the arrangement is working out for each of you.

Like a marriage – has to he “honest” open communication.

Testimonials

I do not have the words to thank you enough for making the trip to Dallas to do two presentations for us at CC young. You truly are special and a rockstar and clearly touched many lives today. It is a victory! I was able to run all over campus and welcome guests and host you. It was a victory. Thanks to you for helping me think that way. We will catch you on the next round. Get some rest my friend. Safe travels. And know we love you from CC Young and Dallas!

Patty CC Young and Dallas

“After two years of not being able to hear speakers in person , I was thrilled to have John Bauman as a speaker at our “ Living Well With Parkinson’s’ Gala!. Not only was John engaging and inspiring to get to know off stage , on stage he truly drove home the theme of empowerment to our audience and left our growing community of attendees with several “ aha “ moments and desire to hear more. He spoke from personal experience as a Parkinson’s patient ,inspiring the audiences motivation to truly wish to make a difference and uniting us all in our humanity. Attendees after listening to John , felt inspired to make a difference in the world and do their part to create change for those living with Parkinson’s. My only regret was not being able to spend more time with John and I look forward to having him speak again to our audience.”

Naomi Wong WPP Program Manager

John’s message of hope, inspiration and laughter was ideal for anyone living with PD. He was extremely flexible and a delight to work with.

Leisha Phipps, MSW Program Director - Dallas Area Parkinson Society

We all felt inspired and enjoyed listening to your presentation. Even though we are not living with Parkinson’s, we felt boost of motivation to continue helping those who are living with this disease. I am motivated to make more personal phone calls to people living with PD and asking how they are doing. Sometimes that “extra” bit of kindness truly makes a difference to someone. I am also motivated to research program ideas and partner with other organizations that may have similar values.

I learned that life is unexpected and that you cannot control it. What matters is your attitude!

-Great way to end the day, brave man, thank you very much!

-Good, excellent, great, outstanding speaker, very moving!

-Inspirational who just “gets it”

-Positive thinker and very funny!

-Honest speaker but also humorous!

Parkinson’s Society of Southwest Ontario, Canada, Symposium Keynote Presentation

“whatever hand life deals you, whatever life changing adversity you have to endure, you still have some control over it.” “You don’t have to just to live well,” he advises,” but live an Amazing Life.” The formula he proposes: Faith in yourself, discipline, determination, desire, intensity, and inner strength.

MARY SPREMULLI VOICE AEROBICS

Yes, you touched every person at our conference, who will in turn change and impact so many others. The feedback from our participants was overwhelmingly positive. You are the only speaker to ever receive a standing ovation. Thank you for taking time to share, motivate and inspire. We are blessed to know you.

DIRECTOR OF MARKETING REHABILITATION HOSPITAL

I will be honest. During the first 10 minutes of your presentation, I started reading work related material on my laptop. For surely, I had watched your You-Tube and seen your videos and knew what to expect. Surely, as a therapist I had studied this disease, the pathological components, the psychological components, the treatment alternatives……..Surely, I understand it.

Not so much. You caught my attention and I was enthralled. You were able to couple the impairments you experience with the emotions felt. You walked us through your life with the disease through “your eyes”. A perspective that a therapist/nurse rarely has the chance to hear. We get so busy telling patients how to deal with x, y and z, but our eyes are blurred by the science of it all most of the time.

You did it through truth, Through your humor, humility and determination to tell your story. One that most deservedly needs to be shared.

I will advocate to have you share your story. I appreciate your determination, diligence and dedication.

CHIEF EXECUTIVE OFFICER REHABILITATION HOSPITAL