Tag: Parkinson’s Disease

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness, overcoming adversity, Personal Conviction

“The Normal Heart” A Relevant Message in Today’s Age

Posted on by Rev. Greg Katz, MS, PhD

This weekend I watched the television adaptation of Larry Kramer’s The Normal Heart. The movie, based on Kramer’s play by the same name, chronicles the beginning of the HIV/AIDS crisis. This may seem like an entry on Facebook for Throw Back Thursday, but its message is current, and beautifully acted.

One may wonder why are we engaged and lauding the courage it takes to make a film about HIV/AIDS in the 80’s when we’re in 2014. I worked as a HIV/AIDS service provider in the 90’s. Things have changed enormously since then, that I’m grateful for, but there’s still more work to do, just as there is with cancer, multiple sclerosis, Parkinson’s disease, and mental illness. Using that as a jumping off point, why is The Normal Heart so important?

I was listening to an interview on Good Morning America with Julia Roberts. Roberts plays a physician who, at the beginning of the epidemic, is really the only doctor seeing these men with this mysterious illness and trying to get funding to unravel its mysteries.

One of the most poignant moments in the interview Roberts shared how the movie is relevant in today’s age. Roberts clearly talked about the need for us all to be willing to fight for a cause. We need to be able to go to the mat for something important, vital to our existence when it comes to our physical, emotional, or spiritual lives. The Normal Heart shows us the lengths necessary to bring about change. It provides us with the catalyst to ask ourselves what do we think needs to happen to make lives better for those facing challenges. What’s our part in the making those changes, and what are our next steps?

What draws at your heartstrings? One of the easiest ways is by looking at your Facebook account and seeing what you’ve “liked”. What organizations, stories, and posts bring about a visceral reaction? I have a friend who’s an HIV/AIDS nurse practitioner. She has devoted her entire life to finding a cure, lessening the impact of HIV on people’s lives across the planet. I follow the Old Friends Senior Dog Sanctuary.  They care for older dogs who have been abandoned or whose owners can’t care for them (mainly older adults). They post pictures of the dogs throughout their day capturing the hearts of folks like me (I have a 13-1/2 year old lab mix with many medical problems). There’s something we’re all drawn to and gets us going when we talk about it, most likely those causes we give money to or volunteer for, and for some the professions they’ve chosen.

The Normal Heart may reflect on days gone by, but its message it relevant today. If nothing else just the length of time it took to have the film made talks about how perseverance and passion fuels change. What do you use when facing a challenge to channel your energy for change?

Diagnosed with a chronic or life-threatening illness? Looking for education, support, and inspiration? Visit www.survivingstrong.com

Interested in the impact of Art on Healing? Visit www.timetolivecreatively.com

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Storytelling

The Heroes You Meet Every Day

Posted on by Rev. Greg Katz, MS, PhD

You never know whom you will meet on your journey to health and healing but I it may surprise you.  I’m constantly amazed at the bravery, tenacity, and perseverance of those facing chronic and life-threatening illnesses.  It can be a lonely life facing a health challenge, but connection is possible and certainly encouraged.  I love reading stories about those who are proactive about getting better or getting well; it’s heartwarming.

One of the things about reading magazine articles, blogs, listening to interviews, etc. is the ability to connect with these individuals without ever meeting them.  I always loved Michael J. Fox, but I have a new love, respect, and connection to him after reading his book, “Always Looking Up”.  There are so many stories that bring us closer to others, and it’s those stories that excite us, encourage us, and move us forward on our journey.

One of the most beautiful lines I heard in response to hearing someone’s story about bravely facing illness came from a viewer of a television show.  The person’s response to the woman facing cancer was, “I don’t know you, but I’ll never forget you!”  Doesn’t that just capture the essence of connection?  Doesn’t it provide you with a sense that you’re not alone?  Doesn’t it make you feel supported, acknowledged, and strong?

I just completed interviewing artists with life-threatening illnesses, and although I did meet them; I’ll never forget them.  They’re courage, their stories, and their authenticity are definitely models for living a good life.  My time with these heroes was a life-changing experience and I’ve been doing this work for 25 years; that’s epic!

Who will you meet in person or through some other means during your day?  How will their story impact your life?  What’s the take away from their story and what will you do today that’s different from what you did yesterday.  For more information about facing chronic and life-threatening illness go to www.survivingstrong.com or email me at greg@survivingstrong.com.

Posted in Caregiving

How It Looks Isn’t How It Is

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

Every so often Oprah has a show with some big socialite or other well-to-do individual who has been in a domestic violence situation.  Over and over Oprah will say, “You never know what goes on behind the doors of someone’s home…looks can be deceiving.”

It took me to that tickle file in my brain with stories of caregivers who held on taking care of someone at home because if they put their loved one in a nursing home it would “look bad”.  What does look bad mean?  Are you, the caregiver running for Mr. or Ms. Congeniality in the Miss/Mr America pageant?  We’re worried about how we look to others including our own families. 

My mother-in-law took care of my father-in-law at home for over ten years before we convinced her to place him in a nursing home.  At the point we placed him he had deteriorated considerably from small strokes that followed the years after his massive stroke.  He was falling out of bed in the middle of the night (she’s a whole 98 lbs soaking wet and he was a bigger guy) so eventually she began calling the fire department to help get him in bed.  You may have a fireman fantasy, but they don’t like doing these types of calls on a regular basis.

I spoke with another gentleman this week whose mother has Alzheimer’s.  He had built a suite onto his home for his mother and she lived with him for over three years.  The tipping point, as it is for many if not most people, when deciding about a nursing home is the incontinence issue.   The research shows that incontinence is often the straw that breaks the camels back when making the decision to place someone in a nursing home.

Then there’s the issue of trying to be the hero.  A family where the man has Parkinson’s Disease (quite severe at this point) and his wife keeps him at home.  She does have some help getting him dressed the morning and put back in bed in the evening, but he’s a bigger guy and their in their late 60’s early 70’s.  A couple of times she has gotten hurt trying to help him get up when he has fallen out of the wheelchair.  What good does it do either of them to be trapped in this tug-o-war of guilt, shame, and emotional pain.  The decision is difficult, but we have to consider safety, health, and fairness on both sides of the aisle.

Only you know the true story of your caregiver/loved one relationship.  The decisions about care can be quite complex.  I’ve consulted with hundreds of families over the years to come up with a plan that is (according to Stephen Covey of 7 Habits of Highly Effective People) a win-win situation.  Being a martyr, a hero, or a servant takes it’s toll….is it a price you can pay?

Posted in Emotional Health

Is “One” Really the Loneliest Number That You Ever Knew?

Posted on by Rev. Greg Katz, MS, PhD

Last night I attended a group meeting where we discuss different topics related to one’s emotional life.  The topic for the evening was “aloneness and loneliness”.  It’s a topic I’m familiar with personally, but it’s something I think is part of the human condition and the topic never really leaves our lives.

Being diagnosed with an auto-immune disease as a child left me feeling lonely.  I was the only one I knew who was facing a health challenge and socially it left me at odds with myself and my social development.  I remember trying to avoid any discussion of my illness and didn’t know where to turn.  Doctors weren’t a support and although my grandfather had the same health challenge we never discussed it…I don’t think he ever dealt with it on an emotional or spiritual level.

As we went around the room last night many if not most of the group, when discussing loneliness, spoke about isolating.  Members of the group continued sharing and the word isolation kept coming up and the more they said it, the stronger my gut reaction was saying, that’s not it for me (even though that’s what I had said at the beginning). 

My A-ha moment came when about the 10th person talked about wanting to be a part of something, a group, a sense of belonging and that’s what combats loneliness.  In that moment, I realized that when I’m the most lonely is when I’m disconnected from myself.  My feeling lonely is a sure sign that I’m not paying attention to my own needs.  I’m trying to fill my life with events, and people, but not necessarily focusing on my heart and soul.

There was some talk about filling your life by making plans and that combats loneliness.  It reminded me of a story from my childhood.  I have a younger brother and he would chase me (don’t ask me why or why I participated).  I would yell to my mother, “Mom, he’s chasing me”, and she would reply, “Stop running and he can’t chase you”. 

That was my reaction to the idea of overcoming loneliness by making plans.  What happens when we stop running, when we stop making plans to fill our day, when we schedule our days so full hoping to be filled up?  I’ll tell you what happens, you go home exhausted and the loneliness creeps in because you never really dealt with it.

Being diagnosed with a chronic or other life-altering illness can be very lonely.  Very few of us have the opportunity that big stars like Michael J. Fox,  Suzanne Somers, or Montel Williams have where they wrote a book about living with their illness and then travel the country meeting others who are living the same experience dissipating the sense of loneliness. 

This is the benefit of support groups.  They give you a place where when someone says, “I know how you feel”, the odds are good they’re telling the truth, not simply placating you.  I’m a big proponent of support groups but there is a caveat.  The group needs to be facilitated by a trained and competent facilitator.  Nothing can leave you feeling lonelier than a group that has driven far off course and you’re still standing on the road wondering where everyone else went. 

How do you combat loneliness?  How do you foster a connection with yourself?  I’d love to dialogue with you about this.  Simply hit the comment button and think of this as your own support group where you’re not alone and hopefully that results in reducing your sense of loneliness.

Posted in Caregiving

Once Upon a Time

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

We all remember those four famous words that start every fairytale from our childhood.  We remember the magic and wonder those stories provided and if you were like me you read the stories over and over again.  As we got older we were introduced to books and autobiographies in particular.  These stories told of famous people who made huge strides to overcome adversity in their own lives and the story showed us how we might accomplish the same thing.

As researchers study storytelling (yes, people study storytelling) they found that there is a subset of autobiography called a pathography.  A pathography is a story someone tells about their own illness.   Famous people are writing them all the time about the diseases they’re battling.  These stories bring attention to the illness in hopes of reaching out to those who feel isolated, but also to try and raise money for research and services.  Some of the famous pathographies are written by Michael J. Fox, Montel Williams, Suzanne Somers, Paul Monette, and Lance Armstrong just to name a few.

So what’s missing in the pathography category?  You guessed it; the story of the caregiver.  In over twenty years of serving those facing a chronic or life-threatening illness and their caregivers I’ve only seen a handful of stories written by the caregiver.  Unfortunately, many of them are written after the person they were caring for has died.  Where are all the stories about what it’s like caring for someone on a 24/7 basis.  Isn’t it time that we hear the flip side of the patient’s story so that we get a more complete picture of what’s happening in the arena of health and healing?

You may not believe that your story is worth a book; but I assure you your story is worth telling.  It’s why I believe support groups are so important because the story gets told.  Your voice about your experience becomes part of the collective consciousness and that huge.  So how will your story be told?  Maybe it’s not through a book; video is making big advancements and you can get a personal video recorder for just over $100.  It would be like making your own documentary…that’s powerful.

Start telling your story so that the world knows the illness experience from the caregiver perspective.  You’ll be doing yourself a favor not to mention how it will help those who follow you on this journey.

Posted in Caregiving

Partners In Crime

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

We hear and read about the stories of famous people who are fighting a particular illness, but what about the caregivers?  Why don’t we hear about the families of the famous person?  There have been few interviewed, Tracy Pollen, Michael J. Fox’s wife has certainly been one to speak about her experience with Parkinson’s Disease.  She’s one of the few, but there are hundreds-of-thousands of caregivers whose stories aren’t told and it’s about time.

You, the caregiver/wellness partner, is a partner in crime in the “Caper of Health and Healing”.  It’s true, you are a partner in crime in this mystery tour.  Some may wonder if you’ve been hiding in shadows, but the reality is that you’ve been right there, front and center, with the person you’re caring for and offering support and encouragement.  It’s as if you’ve been wearing Harry Potter’s cloak cape, and to your credit this gives you the opportunity to look at the big picture. 

It shouldn’t be a surprise that your vantage point is unique.  You get to see the patient and the illness from multiple angles.  You see the patient at the best and the worst.  You know when the patient has been good and bad  about following their treatment regimen.  You can offer support and healing energy.  You are there as a voice for the patient when they may really want to be anonymous or feel intimidated by their medical team.  Ever feel like you’re a multiple personality? 

As a partner in crime you have to watch out for one thing; the desire or enticement to collude with the patient in denial or self-defeating behavior.   It’s your place to give the patient what we in coaching call “the caring truth”.  When I was in graduate school my family therapy professor told us, “Pat them on the back before kicking them in the ass”.  Those words have served me well as I work with people who are often resistant or defiant to treatment plans. 

Once again I want to thank you for your caring, support, and compassion.  You are a team, like Batman and Robin, Cagney and Lacey, and Lilo and Stitch.  Know your attention and encouragement are a huge component in the patient’s journey to wellness.

Posted in Caregiving

If Michael J. Fox Says It; It Must Be So

Posted on by Rev. Greg Katz, MS, PhD

Welcome to Caregiver Friday!!

I love Michael J. Fox.  I think he’s a great actor, but more importantly I believe he’s been an incredible inspiration not only to the Parkinsons community, but to all those facing a chronic or life-threatening illness.  His interviews, television special, and books ooze with inspiration and encouragement for living your best life possible with an illness.

One of his recent interviews for his new book, A Funny thing happened on the way to the Future, he discussed many topics related to his health but he was asked a very important question about his support system.  He was asked, “If you had any advice for caregivers, what would it be?”  I thought this was a provocative and insightful question and you could feel that the whole caregiving community was sitting on the edge of their seats waiting for these words of wisdom to fall like manna from heaven.

Fox said, “Let us (those with the illness) do as much for ourselves as we possibly can”.  Could the answer be any simpler?  He was asking caregivers/wellness partners to pull back on the joy stick of controlling the situation and allow the person you’re caring for to navigate their way a bit more on their own.

We’ve become a society that doesn’t like pain whether it be physical, emotional, or spiritual.  This leads us to jumping in too fast at times short-circuiting the process and in this case that means treating the patient as a bit more helpless than they may actually be.  There’s nothing wrong with allowing the patient to get to the point where they need to ask for help or guidance.  Allowing them to do as much as possible is empowering and reinforces their capacity for health and healing.  It also allows you to take a breath and relax (if that’s even possible) one moment longer than usual.

Michael J. Fox wasn’t saying that you should allow the patient to struggle, fail, or reverse any progress made on their journey to wellness, but he is saying that the diagnosis alone doesn’t constitute incapacity.  It’s a delicate dance and it is difficult territory to navigate.  This is one of those times when you may need to turn up the sensitivity on your intuition factor and give some slack on those reins and see what happens naturally.  You know you’re well prepared if help is needed, but follow the advice of Michael J. Fox and I believe you’ll experience a better relationship on all levels with the one you’re caring for.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

What Would Your Tattoo Say?

Posted on by Rev. Greg Katz, MS, PhD

What?  A tattoo?  Have you gone mad?  I can hear you thinking those thoughts, maybe even gasping out loud at the thought of getting a tattoo, but do you know what I’m referring to?  The advertising age has brought us to the brink of slogans and tag lines.  They have made these phrases part of our everyday vernacular and to top it all off, we use these sayings on a regular basis.

Why would someone with a chronic or life-altering illness get a tattoo?  I’m not expecting you to really get a tattoo, but I am wondering what phrase, thought, or belief you hold as your motto.  Think of the following phrases and see how they reflect on your own thoughts related to your current health status: “In it to win it”; “Bring it on”; “Knowledge is Power and Hope is everything”; “fighting on ever front”.  These are all-powerful sayings and they catch your attention.  Do any or all of them ring a bell for you?

Why do we create these phrases and slogans?  Because they allow us in simple terms create a sense of purpose and active participation in our treatment.  They create a mantra that we can say to ourselves over and over to remind ourselves that the next moment in time will be better.  They give us a foundation upon which we build our personal life platforms.  These words help provide meaning to the senseless experience of a chronic or life-altering illness.

The sayings are all positive thoughts.  They provide each person with the catalyst to move forward toward an increased sense of control of their lives and steps toward improving quality of life.  They are simple to remember, catchy, and can spread like wildfire so you can recruit people to support you with a simple phrase.  It’s what unites people, your support team, to move toward health and healing.

What’s your motto?  How does it help you cope with your current health status?  What words of wisdom do you have that you’d like to shout from the rooftops?  Think of this as your rooftop and let us in on the words you’d tattoo to instill hope!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness

When Do You Know the Time is Right?

Posted on by Rev. Greg Katz, MS, PhD

I’m still blown away by the Public Service Announcement about mental illness, http://www.bringchange2mind.org, but I’ve been thinking more extensively about why is now the right time to bring this message to consciousness?  The truth is that we’ve been pushing mental illness to the background because it’s misunderstood.  Even in this day and age people don’t know what bipolar disorder is until you say it’s what used to be called manic-depression.  The common belief about schizophrenia is that it’s multiple personality disorder, not sure how that happened.  Is this the right time for that public service announcement because we’ve made advances in treatment or public opinion?

Look at physical illnesses like Parkinson’s Disease, until Michael J. Fox announced his diagnosis people didn’t talk about the disease.  Organizations that emerged to support Parkinson’s patients gained increased credibility when the Michael J. Fox foundation put money into research, advocacy, and support.  Was it Michael J. Fox’s job to bring the disease to the general population’s consciousness?  It certainly brought people out of hiding because they now had a visible community for support. 

I’ve noticed that in the past two years, during the warm weather, there has been a dramatic increase in Walk-A-Thons for various illnesses.  In most cases, it brings out those impacted by the disease both directly and indirectly.  Organizations create public relations campaigns to educate the public in hopes of receiving donations.  These walk-a-thons are very public announcements about illness.  Those who walk self-identify to the world their personal health challenge.  As I look back at the notifications I get, I don’t recall ever seeing one for a mental illness organization; they’ve all be physical illness organizations.  This get’s back to the question, “When is the time right?” 

Are we becoming a more tolerant or accepting people?  Are we at the point where most of us have come in contact with someone who is facing a physical illness or mental illness?  Does that personal experience make us more compassionate?  Are we willing to create conversations about the challenges we or our loved ones are facing?  If you have any thoughts on this please share them so we can expand the conversations!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness

Does Illness Have a Face?

Posted on by Rev. Greg Katz, MS, PhD

Mirror, Mirror on the wall…who’s the fairest of them all?  Remember that from Snow White?  It’s funny (in an odd way, not a ha-ha way) that before being diagnosed with a health challenge I’d wager that virtually no one stands in front of the mirror and asks, “Mirror, Mirror on the wall…who’s the healthiest of them all?  When we have our health we assume that it’s because we’re supposed to be healthy.  The moment the doctor shatters that illusion the mirror cracks and we find that there is another person in the kingdom who is the healthiest.

There is no face of illness.  Many who have a health challenge walk in this world anonymously.  Of course there are those who have visible symptoms resulting in use of devices to assist in walking or breathing; loss of hair; tremors in limbs, etc.  When the body presents the symptoms to the world it’s like outing the individual, making them the face of illness.  Unfortunately, the rest of the world isn’t familiar with illness and backs away or gawks at the person and interestingly the public begins to create their own stories in their head.  They create stories about how the person got sick, what the body is doing to the person or casting their own prognosis based on the physical symptoms.

Interestingly most “big” illnesses (those we speak about frequently), like cancer, parkinsons, multiple sclerosis, etc. have spokes persons.  They become the face of that particular illness.  It’s always the person who has survived or is living well because their face becomes synonymous with hope.  I want to people to realize that the face of illness is not simply the celebrities, but the postal clerk, the judge in town, the car salesman and every other walk of life.  There is no typical health challenged person. 

The face of illness is yours, the individual who is facing a health challenge.  You are the vehicle that spreads hope about health and healing.  It’s your story that will have staying power because those in your life are emotionally connected to you.  The celebrity is a story you tell at dinner, but your story is the one that comes up in frequent conversations because those in your circle have access to someone who can answer their questions about the illness.  I know it’s not what you wanted, but you are the expert about your particular health challenge.

We would like to think that certain people whether it be ethnic, socio-economic, or other subset of the population are face of illness.  Unfortunately that is the case with certain hereditary illnesses like Sickle Cell Anemia impacting the African American Community or Tay Sachs, impacting the Eastern European Jewish community.  But the illnesses we hear the most about are equal opportunists. 

How do you feel being the face of illness?  What has your health challenge given you permission to talk about that you may have been hesitant to discuss before?