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Posts Tagged ‘Parkinson’s Disease’

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

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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.

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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?

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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.

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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.

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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.

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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.

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