Bob Hardman: A Body in Motion

August 1st, 2006 | by Jesse Hardman
Bob Hartman, photo: Andy Hartman

Bob Hartman, photo: Andy Hartman

About “Bob Hardman: A Body in Motion”

Jesse and his fatherI have wanted to document my dad’s battle with Parkinson’s for a long time.  As many reporters can attest, it can be a hard transition from the detached impartiality required for most journalism to documenting someone close to you.  For nearly ten years thoughts of interviewing my dad felt forced and, frankly, the idea scared me.  Did I really want to know the difficult details of his battle with the disease? On a personal level I had gotten into the habit of assuming he was o.k., and only drawing from his general successes, not what is inevitably a progressive breakdown of the body.  While visiting my parents a few months ago, I woke up one morning and saw my dad was getting ready to go to a Parkinson’s support event.  I grabbed my recorder and a microphone and joined him.

The key to this story for me is that I did not set out with the intent of turning this into a Hallmark moment for public radio.  I was uncomfortable talking to my dad about his condition, and putting myself in a comfortable place, with a microphone and recorder, I was able to transcend my fears.  The more questions I asked, the more he opened up, it felt natural, it felt good.  My dad asked me after the hour long Parkinson’s event was over, “is this going to be on the radio?” His voice rang with slight skepticism and a little fear.  I paused, “I don’t know, but at least we’ll have it for ourselves.” He agreed.

After talking to my father some more, I started to wonder what my mom might say about the whole Parkinson’s deal.  Unlike my dad, she is very vocal about it and the affect it has on her life.  In many ways it has been harder on her.  I caught my mom by surprise when we were driving somewhere, taking out the microphone and offering her a chance to fly.  She flew.  I think it helped that the lead up to the interview was informal.  Family issues can be heavy, and sometimes I think making a formality of talking about it can get you the stock answers.  I happened to catch my mom in the early morning, she’d been up all night because of my dad’s loud nightmares, and she seemed to be at a bit of a breaking point.

In search of some more material to use, I stumbled upon a creative solution.

I had left my parents house to get back to my life, and I wanted some more tape for what seemed to be shaping up to be a radio piece.  I had somebody lend my mom a recording kit and show her how to use it.  At first she was scared, but after a bit she got the hang of it and started to follow my dad around the house with the recorder.  The dynamic was interesting to say the least.  My mom’s recording captured something I probably could not have gotten, my parents at home, alone, doing what they do, unencumbered.

What ultimately made me want to do more with these recordings than just a family archive was the actual sound of my dad’s tremors.  I feel like this sound in and of itself explains as well as any words what it is like to be in my dad’s body.  You can probably come up with a sound to represent most physical illnesses, but few as powerful as the sound of Parkinson’s.  I want people, regardless of what side of the stem-cell debate they are on, to hear that sound, to feel it, to Hear what is at stake for my dad.

Now that the work is done, I am a little nervous about how this story will be received.  It is personal, not just for me, but for my parents too.  I try to keep in mind that inevitably the hardest stories to tell are often the ones that resonate the most with the public.  I hope this is the case with my father’s story.

Tech Info

Jesse Hardman SurfingI recorded this with a Sony minidisc recorder. This may sound rudimentary, but more than the technology, I think the size of the recorder can play a role, the smaller it is, the less imposing in a recording situation that is somewhat delicate and personal.

About Jesse Hardman

Jesse Hardman is a freelance reporter for NPR and related public radio programs. He’s currently serving as an International Knight Journalism Fellow in Lima, Peru. His father, Bob, is an Episcopal Priest who resides in St. Paul, Minnesota. He has lived with Parkinson’s disease for the last ten years.



Additional support for this work provided by
Open Studio Project

with funding from
Corporation for Public Prodcasting


53 Comments on “Bob Hardman: A Body in Motion”

  • Jay Allison says:
    Bob Hardman: A Body in Motion

    JESSE’S FATHER: When I would lay my hands on peoples’ heads and have a prayer of healing, my little finger would shake. It’s kind of ironic that you are at a healing service and you are discovering the first signs of Parkinson’s.

    SOUND: Trembling noise.

    JESSE: The sound you are hearing right now is my dad, Bob, holding my microphone. He can’t keep it steady because he has Parkinson’s, a brain disease that affects peoples’ motor skills, and muscle movement, sometimes rendering them with massive tremors, like these.

    …Listen to Jesse Hardman’s strong and steady piece about his father’s Parkinson’s Disease on Transom, and talk about it here.

  • Sydney Lewis says:
    not for sissies

    Jesse,
    What a moving piece. From the great title, to the last line, I loved this story. Your dad’s lovely spirit, your mom’s feisty honesty, your straightforward narration, which manages to combine medical and emotional information (yours and theirs) with unsentimental equanimity. A fulfilling 10-minutes, a compelling journey. I imagine lots of tape hit the floor. Were there big struggles figuring out what to use, or did the story seem to come together easily?

    This story resonated strongly with me because I’ve had my own physical troubles, and watched my parents go through serious struggles. I’m curious to hear how others for whom illness is a concept not a reality hear this.

    You write about your anxiety but leave it out of the piece, except toward the end when you talk about returning to your hometown. How did finishing this piece impact you?

    Thank you, and thanks to your parents for sharing their thoughts. What’s been their reaction to the piece?
    Sydney

  • Jesse Hardman says:
    A quick response

    Sydney, thanks for listening. The story came together easily in part because I had been thinking about it for so many years. I let myself feel my way through it instead of structuring it from the outset. My dad said a lot…and he´s articulate, so it was hard to cut many different things.

    As you noted medical issues can be complicated, explaining technical things without getting bogged down in the details. I could have done a whole story about the deep brain stimulator that is the most known and controversial aid on the market. My dad is currently re thinking whether or not he wants one, it´s a real countdown these days to what to try and what to do before too much time goes by.
    I put some more personal anecdotes in the piece originally, a moment in the beginning of the disease when I was still getting used to it, and while at dinner at a girlfriend´s parents house my dad had to ask for a straw to drink his wine. That was a rough one for some reason. I think I was in denial and young enough that I did not get it.
    I cut most of the anecdotes in part because the peice flowed better.
    In the end I was hoping it would sound like I am discovering along with the listener more about this disease.
    And really, when it comes down to it, my parents have been on this ride together. They really are the only ones who can say what it is like.
    In finishing this story I was left pretty humble with a lot of respect for them as a couple, and as individuals.
    I think people often listen to something like this and can miss something important. They will want to tell my father you are brave, you are an example, you are a hero. He is those things, certainly, but I felt he really wants people to know above all else, that he is a human who would do anything to not have Parkinson´s.
    I will let him chime in on what he thought of the story when he has a second.
    Thanks again for your thoughts.

  • Jesse Hardman says:
    Producing awkward reality

    From a listener:

    that’s a tough story to listen to. i mean, on the one hand it’s hopeful – not the part about stem cells, in my opinion – but the part about living within a shell. sometimes i wonder what’s better – being fully aware but physically unable or the reverse. hearing your dad’s story, i side with the former but know that it wouldn’t be pleasant.
    it’s also tough to hear because you’re the storyteller and i see the piece as almost an expose of the family rather than a radio piece. i think it’s good to test that boundary but it’s also what makes me very uncomfortable with "reality" tv. i wonder what people in reality want their reality to be seen by others. there’s clearly some good reasons that you put out there (political lobbying, making people more accepting of people with the disease) but it’s edgy nonetheless.

  • Katy Sen says:
    Great story

    Jesse – This is a story that will keep people parked in the driveway in front of their house because they don’t want to miss the end. I loved it. Although I didn’t know that your dad was an Episcopal priest, it makes perfect sense. You are both witty, compassionate storytellers. Thanks to you and your parents for sharing your story. Katy

  • Missi Missad says:
    I pray for hope

    Jesse:

    Thank you for such a moving documentary about my brother and his difficult journey with Parkinsons Disease. I just spent a day with him last week and as I don’t get to see him often, I am shocked to see the latest impairments he is enduring. However, I continue to admire his strength in dealing with this disease and marvel at how he refuses to let it define him as a person. I pray daily for a cure or a breakthrough to give him hope for a better life. Love, Aunt Miz

  • Donna & Steve Marsh says:

    Jesse, my husband Steve is a Parkinson patient. We are longtime family friends of your family’s. Your grandfather officiated at our wedding in 1962 and was our priest for years, your uncle Dave was one of the attendants in our wedding — long time and dear friends. We recently learned from Missy about your Dad’s struggle with PD, and Steve emailed him. Your Dad responded, and Steve will answer that soon. We know exactly what your family is going through. I can relate with your mom’s comments, especially those awful nightmares. There is a lot unsaid in her voice.
    This was a beautiful piece, and as soon as Steve gets home this morning I am going to have him watch/read it. I am moved beyond words by what you have done. Thank you. Donna Marsh

  • Colleen Bell says:
    WOW

    I just listened to the story, Jesse. SOOOO much of it felt familiar to me because of my mother’s struggle with Parkinson’s disease.

    Thank you (and thanks to your folks) for the courageous head-on portrayal. Of course people will respond in various ways to the challenge of meeting someone with the disease, or of being diagnosed with the disease, but your approach of putting OUT THERE is something I wish our family had been able to do, or had had access to. The silence and stares and whispering are dreadful. At the same time, tremors cannot be ignored by anyone. My father joked a lot about Mom’s shaking. That worked for him and she seemed to understand it was his way of coping, but I found it difficult to hear. The very direct discussion of your family’s experience is a relief, from my perspective. I admire all three of you.
    Colleen Bell

  • Colum Kenny says:
    Fine work

    I have been sitting here in Ireland listening to your very fine piece of work about your father and mother. If more radio and internet space was filled with this kind of compassionate production the world would be much better.
    Another aspect of the Parkinson’s problem is that young and middle-aged women seem to be getting it as never before and nobody knows why. A report on that would also be very valuable.

  • gasolina says:
    little finger

    Jesse,
    Thanks for sharing this piece about your family and your father’s battle with Parkinson’s disease.

    I was fascinated that your father is an Episcopalian Priest and his pinky finger first began to tremble during a prayer of healing. It is such an evocative image. Foreboding but also the idea that maybe this is a mystical moment that is occurring. I liked when he later said, “…this disease is no place for sissies.” It left me wondering what happened to him spiritually between the moment his pinky finger trembled — and the sissy comment 10 year into the disease. It has to be an incredible spiritual battle, the nightmares, the trembling. I wondered about how this disease impacted or even changed his relationship to God. Of course– that’s a deeply personal question and not what this piece is about exactly. So there’s no need to answer that one. But it left me wondering…. Thank you for sharing this piece.

  • heidi heiland says:
    St. Martin’s Confirmand

    Jesse – Your father was my Confirmation Minister 30 years ago. He was and is a wonderfully compassionate soul who had the patience of Jobe with me. He has continued to touch and inspire our small spiritual family on the shores of Lake Minnetonka. I am moved when he preaches and I was equally moved by your journalistic gift. Thank you for having the courage to share. Peace & prayers – Heidi Hensel Heiland

  • Robert Hardman says:
    Further message by Bob Hardman

    Thanks for all your responses. I am deeply moved. I would say three things keep me going: my faith, exercize and a sense of humor. I have found meditation very therapeutic as well as quieting of my body and centering my spirit. It is a constant in my life. I also find exercize walking, bike riding (which is sometimes easier than walking), yoga (which calms my body)necessary. "If you don’t use it, you lose it!" My sons help me with a sense of humor, like "Dad, you can throw away your electric toothbrush."
    Other than that, I keep trying ways, many alternatives, although I like to call them complimentary therapies:i.e. accupuncture, electro-magnetic therapy, glutithione,healing touch, reiki,message,and am now stepping into ayurvedic therapy. All have brought me into a wonderful smorgasborg of care that this world has to offer, some were more helpful than others, but all helped. I am blessed and so are you to have so many avenues to wholeness (holiness). Blessings to you all. Bob Hardman

  • Robert Hardman says:
    thanks

    Heidi – How wonderful for you to respond and thanks for the affirmation. Love to your family and mom. Bob

  • Robert Hardman says:

    Thanks Donna and Steve.. Steve, I got the tee-shirt "Parkinson’s Sucks" from PAN – Parkinson’s Action Network. Although, when people laugh it’s a bit unnerving – because part of me says, "This is no laughing matter!" It really does suck at times! Anyway, blessings to you both, Bob

  • Melvin Eugene Turner says:
    MELVIN TURNER

    DEAR LONG TIME FRIEND: THE SOUND OF YOUR VOICE SADDENS AND MAKE ME HOPEFULLY HAPPY AT THE SAME TIME. I’m SO PROUD OF YOU, SUSAN AND YOUR SONS ESPECIALLY JESSE OR OFFERING THIS GIFT. HE IS INDEED A SKILLED CREATED PERSON AND I PRAY GOD’S BLESSINGS AS HE ORDERS HIS STEPS. PLEASE KNOW THAT MARGARET AND I HOLD YOU DEARLY IN OUR THOUGHTS AND PRAYERS. FROM ONE FAMILY TO ANOTHER. I PRAY FOR AND LEND MY MEAGER EFFORTS TOWARD THE RELIEF AND CURE OF THIS DISEASE. MAY YOU BE BLESSED WITH THE STRENGTH TO ENDURE AND KEEP YOUR HUMOR. YOUR BROTHER IN CHRIST MELVIN EUGENE

  • Robert Hardman says:
    A Body in Motion: Susan’s Thoughts

    You heard me sound off in the original interview
    with my son Jesse. I just thought I would thank
    all of you who have taken the time to respond and
    to add some more thoughts of my own. I am very proud of my husband, and sons for their courage and openess in sharing our journey with others.
    We laugh and joke and find humor a must.Our grandsons ask questions about why grandpa shakes
    and they get good answers, then they just go about their business. I honestly don’t know how Iwould be if I were in Bob’s shoes. Probably
    much the way I am today, at times fiery and impatient and at others patient and understanding. I am someone who likes to think
    there is nothing I can’t do or at least try and
    Parkinson’s gives me an opportunity to take on
    even more. Bob can’t do it..I will. I’ll drive
    3,000 miles so we can go East.I can take care of
    the three grandchildren by myself. I’ll learn to
    drive the boat, , I need better balance, I need time out, I can say no. Maybe this is one of my
    biggest learning..What do I need to enjoy my life
    and still be a caring helpmate? This question is
    front and center on my plate.

    Listening to this tape again today was very
    emotional for me. I was able to get inside our
    life in a way I can’t when I am at home and in
    action. It had me being still and very thoughtful.

    Susan Hardman

  • Marilyn Bamford says:
    Listening to Old Friends

    Both Joel and I were so taken with Jesse’s wonderful interview of you two. We both laughed when Susan’s one word answer was blipped! I grew up with a dad ( b. 1895) who had a Parkinsonian like tremor from the time he was a young man, having nearly died from the 1918 Bird Flu, as an army recruit. He never spoke about this – and it was not until I was practically a parent myself that I realized that my out there, teaching, politicking dad was really "handicapped". I wished that I had talked with my dad about how this affected his life, but I know I was afraid. Perhaps Jesse’s and your fine piece will give folks more courage to ask their parents those difficult to ask questions. It seems that both the asking and the answering are empowering. Marilyn Bamford

  • Jay Allison says:
    NPR Broadcast

    Just a quick note… a slightly shortened version of this piece will be running tomorrow on NPR’s Weekend Edition Saturday.

    http://www.npr.org/templates/story/story.php?storyId=5788850

    Listeners may join in here for discussion.

  • Sandra Yudilevich says:
    A body in motion: parent’s experience

    I was struck by Ms. Bramford’s comment, thunderously struck, for as much as I talk and ask questions, how many of us listen fully, openly, to what our parents REALLY, experience(d)? How much were we not willing to hear? or wanted to hear? How true was that for me and my siblings?
    Sincerely,
    Sandra Yudilevich

  • eric wallace says:
    very interesting piece

    Thank you for doing the piece. It helps me to understand a little more what it’s like to live with Parkinson’s. Towards the end of the piece Bob say’s he’s learned somethings from having Parkinson’s, would he be comfortable stating what they are?
    eric wallace

  • Jude says:

    Mrs. Hardman you have all my respect. As the daughter of a 75 year old man who has been battling the disease since 1992, I can relate to all of your highs and lows. I look on in amazement when my 100 lb mother lifts, bathes, shaves, feeds and dresses her 135 lb husband of 39 years. This is not what she bargained for. This was not what "the retirement years" was supposed to look like. There are days when I think, what kind of sick joke is this? They’ve worked so hard all these years, building a home and raising their children- and this is it? No great escapades? No jet setting off for vacations? Not even a walk in the park?

    But then there it is- It a journey. One they are taking together. It maybe off to the hospital after a nasty fall, or to the Neurologist begging to do something about these hideous hallucinations and vivid nightmares. But there they are. Together. In sickness and in…I’d do anything for my dad to have one good health day. Just one where he does not imagine bugs are crawling up his legs or spider webs forming in his hands. One where he can sleep through the night without being persecuted by boogiemen.

    I tensed up when I heard Jesse mention your husband would not want him to move back home, to live his life. It hit home so much. That must be the wisdom our fathers have. Nevertheless, it’s so hard not to when you watch 2 people who have sacrificed their lives in order for you to have a better one. (At least you don’t have to pay rent anymore :-).

    Your story is truly inspirational. Thank you for sharing it.

  • Hank Haskell says:
    Hank Haskell

    A wonderful piece. My brother Peter has had PD for 21 years. He visited us in Maine this summer with his wife Edit. What an "anchor to windward" Edit is to Peter. He’s having that brain surgery on Oct. 5 to insert the deep brain stimulater—in Houston. We’re praying.

  • Mary T Johnson says:
    Thank you for the story

    Jesse you are a lucky man to have Bob and Susan for parents. Thank you so much for sharing your parents’ struggle with us.

    It reminded me of my wonderful mother-in-law, a brilliant, marvelous, funny woman. I miss her so much!

  • Jeanette Williams says:
    Thank you for making my "happy hand" sing

    As a person with PD, I listened intently when I heard the opening lines of the story this morning. My "Happy Hand" is the thing that made me start the process of a diagnosis. I especially appreciate Mr. Hardman’s willingness to be out there with PD and also Jesse’s lack of embarrassment about his Dad. At 53, I’m only upset about the fact that I missed the Young Onset Parkinson’s by a couple of years!! Living in Washington State, I am pleased that you listed the Northwest Parkinson’s Foundation as one of the web sites to check out. We are living with PD at a time that can be wonderful for all of us. Thank you for making my happy hand sing while listening to your story.

  • RosieG says:
    Exercise and Parkinsons

    I was interested to hear, in the reference to exercise, that "sometimes bike riding is easier than walking". Exercise is good medicine for so many things, but this website http://www.Inevergiveup.org was the first place that I heard, several years ago, that it is thought to slow the progression of Parkinsons disease. A site worth visiting.
    "Faith, exercise, and a sense of humor" – yes, Bob, those are the tools that can get us through so much. Thanks to all of you for sharing your experience, strength and hope.

  • Ann Parsons says:
    Ann Parsons

    Bob Hardman with Susan came to Juneau, Alaska many years ago as an interim priest at St. Brendan’s Episcopal Church.As the Deacon at St. Brendan’s I was privilaged and delighted to work with him.His sprit and humor were a joy to behold. We still miss them both.To hear both their voices on NPR this morning brought tears to my eyes and joy to my heart.

  • Ann Parsons says:
    Dn. Ann Parsons

    Imagine my surprise to awaken this morning to hear Bob Hardman’s voice on Raven Radio in Sitka
    Alaska.
    Many years ago Fr. Bob with Susan came to Juneau Alaska as an interin at St. Brendan’s Episcopal Church.They were both a joy and inspriation to us all. It was my joy and good fortune to serve as his deacon. They have both been greatly missed in Juneau and continue to pop up in conversation and I miss them in Sitka

  • Linda Williamson Gelbrich says:
    Courageous and moving story

    Jesse, I was (and still am) so moved by your story! So courageous, informative and well done – and that must not be easy since it is so close to you! Susan and Bob – I miss you both and send love, prayer and healing intention your way from Corvallis, Oregon.

    We had the delight in Corvallis to enjoy the Hardmans in our Episcopal congregation with Bob serving as our rector (priest) for several years. This report touches with such honesty, the impact of PD on a family, on moment by moment life. It also provides evidence for the value of hope, recognizing possibility and connection even in the face of such a life changing medical condition. Thank you Jesse, Bob and Susan for sharing this across the country. Linda Williamson Gelbrich

  • Paul Tuite says:
    Sharing a moment

    Bob, Susan and Jesse:
    Nicely done. I was sitting in my car about to step out for our Parkinson fundraiser here in Afton Minnesota when I heard your story. Two weeks ago I met with one patient who was just diagnosed with PD at age 28 years. We must do better at reaching a cure and better treatments. Thank you for speaking up and helping us change for the better.
    Paul Tuite MD
    Neurologist
    University of Minnesota

  • dwight jennings says:
    A solution for Parkinsons?

    Bob:
    As health practitioner I was touched by your story and thought I would share some of my clinical research. I am a dentist who doesn’t do much dentistry, but spend my time practicing dental-medicine. I treat a wide range of disorders through jaw orthopedics (headaches, seizures, fibromyalgia, asthma, scoliosis, etc). A particular group of disorders(=neurogenic inflammatory disorders) are known to be highly responsive to bite alignment therapy; those associated with elevated "substance P", a neuropeptide (type of neurotransmitter). Parkinsons is associated with the opposite problem (low substance P). But the jaw nerve has the ability to modulate the level of many substances in the body- possbly even substance P. We kow bite disturbance can make substance P levels go up, it is just that bite disturbance effect on the Trigeminal nerve could possibly make its level go down.

    The evidence: 1)your response to 30 minutes of no tremor with aroma therapy (chemoreceptors are part of the trigeminal system).2)a dentist put out a cd a few months back on multiple tremor case histories relating to TMJ dysfunction

    Sincerely,
    Dwight Jennings, DDS
    Alameda, California

  • Michael Richardson says:
    Have you considered Ayurveda as an altenate Healing method?

    Hi Susan,

    Heard the program on NPR Weekend Edition Saturday and thought you only need to learn how effective Ayurveda would be for helping Bob. Please see http://www.ayurveda-foryou.com. The site will educate you and give both general and specific info to assist you and Bob to bring more control via diet, attitude, and lifestyle changes. Their key is learning the constitution via an online questionnaire, diet and exercises to match that constitution, and detoxification methods specific to the condition. Also, nearby Ayurvedic practioners or doctors for your area. Check into it, peruse, and act – easier than you think.
    nLight, Michael Richardson

  • To the Hardmans

    I found this site while trying to reach you from the NPR.com site. I heard your story today on the radio. I am Board-certified in both Internal Medicine and in Preventive Medicine & I have spent the last 7 years trying to get the attention of institutional medicine (& Pharmaceutical firms) to a GENERIC medicine (NOT a brand!) that is off-patent (an off-label use of naltrexone) and as cheap as white bread, which promptly strengthens the immune system. My brilliant long-time friend, a Harvard-trained neurologist discovered its effects, which apparently include halting the progress of neurodegenerative diseases (such as Parkinson’s disease and Motor Neuron Diseases).

    PLEASE go to my website, http://www.ldninfo.org, and peruse it carefully — everything you read there is true (although you may think it must be "snake oil"). Note that the medication, a very low dose of naltrexone taken at bedtime, has already had an excellent pilot study at Penn State for Crohn’s disease, is showing wonderful results (unexpectedly) in Autism, and has halted the progress of multiple sclerosis in people around the globe. Most importantly, low dose naltrexone has NO toxicity at all, virtually no side effects, and is compatible with all medications except for narcotics (which it will block). You must try it — and don’t give up on it for at least a course of at least 6 months!

    Sincerely,

    David Gluck, MD.
    Website Editor — http://www.ldninfo.org
    212-734-5109 (in Manhattan)

  • dana says:
    A relief, an inspiration

    Thank you so much, Jesse, Mr. & Mrs. Hardman.

    As the daughter of a wonderful man who was diagnosed with Parkinson’s upon his retirement years back, it is a relief and an inspiration to hear of your experiences and be reminded that my family is not alone in this. It is so important that others, including those not personally touched by this disease, continue to hear about personal experiences in order to better understand the importance of stem cells and the difference they could make for so many.

    I hope more people will come forward as you have so that this issue will remain at the forefront.

    Sincerely,
    Dana Curtis

  • Susan Benesch says:
    To the Hardman Family

    Thank you very much for sharing your story with all of us. You are courageous and beautiful people. I was 10 years old when my grandfather died. At that time there were no known medicines or treatment for Parkinsons. He had become completely bedridden. My grandmother felt that she had shortened his life by placing him in a nursing home 6 weeks before he died.Thank G-d there have been many advances since 1958. May G-d bless all of you.

  • Elaine Zimmer says:
    Thank You

    Thank you, Hardmans for sharing your story. My husband has had PD for 11 years. I especially apprciated hearing from Mrs. Hardman. Don has the "nightmares" and continuous motion. Sinemet SR at 11:00PM helps a lot. One of his drugs is Amantadine, a drug initially used for the flu and coincidentally found to stop tremors. It has helped him. Don walks, exercises, and bikes. However, he needs a 3 wheeler because he has lost his balance. We have not stayed in any support group because that depresses him. Just recently he was put on an antidepressant, because seratonin was also depleting and he was crying a lot and getting more and more depressed. He is much better now. Thanks again.

    Elaine Zimmer

  • Paul Hoffinger says:
    Rev Bob, Susan the Sage & Jesse the Wunderkind

    Hi Rev Bob, Susan, Jesse & the other boys -

    Jesse, it’s hard not to be proud of your Dad, Mom and you after hearing the story and reading the comments. I’ve thought of you guys as "principled, courageous, generous, talented", and all those good things. This confirms my assessments, and gives me some background that inspires. Thanks for letting us find out about how things are. You recede into the back of my mind after awhile, and it’s good to hear you again.
    Love, Hoffy

  • Susan Pelkey says:
    Hope and Comfort

    I am also the daughter of a wonderful man diagnosed with PD at the age of 39. When his tremors began he confided in me that his arm no longer swung when he walked. He is now 53 and still does pretty well. Jesse’s story reminded me a lot of my family and I’m glad that he told the story from his mother’s perspective as well. That is a perspective that should not be forgotten. I’m wondering where I can get a Parkinson’s Disease sucks T-shirt, I think my dad would appreciate it!!

    Thank you Jesse for your story!!

    Susan Pelkey

  • Judy Holland says:
    a familiar story

    My sister called to let me know about this feature. Our dad, a physician, had PD starting in his early 50′s. The disease eventually ended his career. No one, apparently, wants to go to an obviously sick doctor. Your story brought back many memories of his hand tremors (which I as a child used to try to stop by holding his hand) and dinner times with the clattering silverware and plate. It has been many years since his death, but I continue to have great respect for both my parents for their struggles with this disease. Thanks for sharing. Judy from KC

  • Jessica Hahn says:
    My heart goes out to you

    As a coordinator of Parkinson’s Disease with the APDA. It’s always touching to hear people’s stories and how they overcome. I have heard stories of people saying that it’s hard for them to walk but they can run. This is a different disease from others since it does hit everyone so differently. Exercise does help a person. It helps so they aren’t so rigid. Also having a positive attitude helps as well. To everyone dealing with PD, either by having it, being a caregiver or a family member, I commend you for everything you go through.

  • dori says:
    Thanks for sharing

    I am the wife of someone with PD; sometimes it feel pretty isolating. It was both saddening and gladdening listening to this story. Recently, we saw a news story about Azilect, a new MAO drug for Parkinson’s, used in conjuction with levodopa, so we have just gotten a prescription for that. We are hoping it will help. Hang in there, and thank you so much for sharing – I feel like it is a relief to hear others address this problem!

  • Jan Herdman says:
    Taking me back to the sounds

    Jesse,
    Last Sun. 9/10 I heard your story. It took me right back to the sounds of my own father as he moved with Parkinsons. Like your father, his humor and intellect sustained him. He had early onset PD at 40 and lived with it for 38 years, thanks primarily to my mother’s close medication management, love and caregiving. Deep brain stimulation and thwarted stem cell research came too late for my dad, so my hope is that your dad will be able to benefit from these and improved medications.

    Thank you for sharing your story with all of us. I found myself sobbing from what PD stole from my dad & our family.

  • Jackson Braider says:
    If this discussion isn’t a wonderful demonstration of the power of sharing…

    I can’t imagine what is. It was a great story, imaginative in the use of audio to demonstrate what PD sounds like. As the bearer of a tremor of a different origin, I embrace your father’s determination.

    By way of note: when asked to take photos, I describe my camera work as "still life in action". Needless to say, but I’ll say it nonetheless, your choice of piece title was great.

    But as a radio producer, I was particularly taken with the decision to exploit microphone noise. It’s one of those lurking standards of our trade that we simply take for granted.

    Was this a conscious nod to your choice of medium?

  • Jesse Hardman says:
    Saludos

    I will chime back in as it seems, and I could not be happier, that the dialogue continues.
    To answer the question "Was this a conscious nod to your choice of medium?"

    Radio is what generally comes naturally to me, so yes and no, I guess. After years of radio producing it is how I often interpret the world now, so it is instinctual in that sense, but yes, conscious in that I felt hearing a tremor was a more direct way into my dad’s body. If you saw a video of him I think you still experience detatchment. If you hear it…and have to keep hearing it for a few seconds, it stays with you I think. Some have described the effect the audio of his tremors had as difficult to listen to.

    I was happy to read another listener’s comment that,"took me right back to the sounds of my own father as he moved with Parkinsons."

    The world of public radio producers is a small insular one. We tend to talk about sound the same way cigar afficionados might dissect taste, or Trekkies might discuss Spock’s hair in episode 342.
    When a radio story gets "Listeners" talking and realizing the rich sounds out there…I feel like I did my job a little better.

    I digress.

    My parents and I have gotten an overwhelming amount of responses from this story, medical advice, support, reflection, etc.. I am humbled by the response. Thank you does not begin to express how I feel.

    And in the tried and true tradition of news writing, I will exit with a look to the future and hopeful continuation of this dialogue. Things like Parkinson’s obviously do not disappear after the radio story is over.
    Out of sight(hearing) out of mind as they say.
    –Please keep talking and discussing and listening.

  • Robert Hardman says:
    Body in Motion reflections from the wife

    Everyday I reflect again on the messages we have
    received in response to Jesse’s piece on Parkinson’s. It has definitely touched a cord in
    many and brought this conversation into the larger
    community. We have not been able to respond to everyone, but we know you are outthere and supportive of us and the people in your lives that
    live with this disorder day to day. I was particularly struck by the adult children of people with Parkinson’s who care so much and aren’t always close by to help out. Also, they
    have found it hard to ask the question " how are
    you doing and what’s it like to live with this
    disease"? Maybe that will look a little easier now. No one has the answer,,that’s clear and even
    Bob’s Neurologist says after our visits," Keep
    educating me" and he has also said, " Each of my
    patients has the courage and knowledge inside of
    them to know how to live with this disorder".
    That may offend some people, but I understand what
    he is saying. The Doc’s don’t have all the answers. Along with medical advice, medicines,
    surgery there is another component and it is in
    someways spiritual as it comes from within and is
    particular to each person. Noone else can know
    what resources you as an individual bring to the
    table. My husband, for example, is very sure he
    does not want to be his disease. He gets out there and does everything he can to remain active
    and vital. He also takes alot of naps when needed. He is adaptable to the situations he finds
    himself in. When he is working at the food co-op
    and is stocking the shelves he sits down to do it
    if he needs to. He has learned to pace himself
    and not be in a hurry. Sometimes I point out things to him, if I see them, that he may not see.
    Like, how he takes up the whole sidewalk when he
    walks and others find it hard to get past him. This is a balance thing. I watched a woman walking
    behind him the other day and she would go one way
    to pass and Bob would go that way. Finally, I
    poked him and said "move over" a lady is trying
    to get by you. He just wasn’t aware. He works
    so hard to manage his body it takes all his energy
    and he is often very exhausted by it. I am so awed
    by his resilence. Be on the cutting edge, forge a
    new path, know that there isn’t just one way to
    approach this disease and most of all know that you are not alone. There is a huge community of
    people supporting you and working on different
    angles of this disorder, many in a very wholistic
    way.Maybe the good news is not so much in the body
    as in the soul. In the meantime, as one of my sons said to me yesterday. "Mom, I need to stay
    in the present and just handle this minute, this
    hour,this day". Susan Hardman

  • Gene Warning says:
    "We Leperers"

    I think in my mind that this is a way of introducing myself as another of those with PD. I was diagnosed in ’91-92, don’t remember exactly and it’s not improtant, But I wanted to direct this message to Bob, the one with the problem I can relate to. I haven;t yet heard the sound due to computer problems, but I’ll have that fixed soon. I’ve been thur so many "things" with PD, I’m interested in the sound.
    I have a lot of trouble writing-almost impossible, and as you can see I have more and more trouble tying, so please ignore the typos.
    Your son writes a good story, I’m very familiar with lots of what he says. It’s easier to understand or ssy "uh-huh" when you’ve had the same esperiences.
    I could answer so maniy things in youir article, and maybe I will some day. But for now- a few comments. "use it or lose it"!!!!!!!!!!!! a PD can’t forget that. I’m strongly committed to exercise, althought I am always hunting f or some excuse tot not do it! My PD doctor (a good one) said if I had to choose between Requip (one or therre medications I take) or exercise-choose the exercise cause its that improtant.
    I still fly fish, and still tie my own flies. I am slower now, and I imagine I’ll get even slower, but I use it or loose it. My fishing partner is very aware of my "situation" and he coddles me and ties on my flies as hes so much quicker and he has an unfair "fly on the water" time and catches mor troiut than me. I’m 75, I see a slowing and an unsteadiness getting worse particularily ove the lalst fe w years-but UIOLI (I think thats how I’ll refer to it from now on-it’s quicker.
    I also play AT golf, the score doesn’t matter, as I have to take my 80+ year old friend who has had a stroke, and he needs the exercise. Now you talk about someone slow-that’s him!! I think I go with him because in comparison I’m fast!! Keeps my perspecitve.
    I haae been a woodworker all my life, I still do it-slower. Hve to be more aware of my power tools, s they can bite, but I have built 10-15 tables, boxes and chests over the lst couple of years-mainly for my kids and theirs, and I’ve got a waiting list, so I’ll keep at it. Love to use NW hardwoods-makes unique pieces.
    I could go on and on-but I just wrote this as a way to talk to my fellow leperer, and to say life goes on. It’s not too difficult to deal with this (I won’t consider DBS, at least not for the immediate future) but PD is to relatively easy to take care of if you compare it to ALS or MS or stoke, etc, which Ihave had to do with some of my friends, some who are now gone. All things considered, I’ll tke the PD.
    UIOLI, and "Illigitimus non Carborundum"
    Gene

  • mary bertino says:
    Hideous Hallucinations

    Jude,

    My father has had Parkinson’s for 28 years. My mother, who has taken care of him,was moved by your response and would like to share her experience regarding controlling the hallucinations.

    She says some of the Parkinson’s medications have hallucinations as a side effect. If they are hideous or sleep disturbing, she suggests that you work a neurologist who specializes in Parkinson’s to either adjust the dose or to change the medication.

    Good luck,

    Mary

  • Kim McChesney says:
    Parkinson’s

    Thank you for your story. It is always good for those of us who have the disease to hear someone else’s story. I was diagnosed at the age of 40 and I am currently 43. I am a math teacher at a high school and I continue to work. I am also the mother of 4 children ranging in age from 9 – 15. I took my diagnosis hard, because I had watched my mother suffer with the disease for 11 years. She was diagnosed at 44 and passed away at 55. Five months after my diagnosis, I went to a priest and talked to him about the disease. He has helped me in innumerable ways and I am stronger today than I was three years ago. I have been blessed in many ways in these past 3 years, in ways I wouldn’t have been had I not been diagnosed with Parkinson’s. I have also learned to not sweat the small stuff and what is really of value in this life. My family and friends are my greatest gifts and for that I am eternally grateful. Do i wish I did not have the disease. yes. But I believe there is a reason and only good will come from it. To Jesse: You said you were worried about the reaction of people and I just wanted to say Thank you. I understand.

  • Sally S says:
    question about teeth

    Does anyone know the relationship between mercury, electrical currents from metals in the mouth, root canals, cavitations and parksinsons?

  • connie says:

    I HAVE PARKINSON’S.I HAVE 3 BROTHERS AND 2 SISTERS. ONE OLDER SISTER HAS IT AND 2 BROTHERS HAS IT.WE HAVE ALL HAD IT FOR A LONG TIME.I WAS DOING FINE TILL RECENTLY MY MEDICINE WAS WORKING FINE. NOW I HAVE TROUBLE WALKING AND WRITING. THE DOCTOR IS TRYING NEW MEDICINES. DOES ANYONE ELSE HAVE THESE PROBLEMS AND WHAT DO YOU DO

  • Robert Hardman says:
    A Body in Motion

    Connie – Thanks for your response. With that many siblings and relations with PD, you’d be a good research study that is going on at the University of MN. Contact my neurologist at tuite002@umn.edu. This doesn’t solve your problems of writing and walking (I have them, too), but I’m sure Dr. Tuite would be interested in your family.
    I keep up with my exercise, my yoga, my meditation. It all helps. My sinemet (carvadopa/levadopa) I know helps free the rigidity my body gets into. Many of my friends who have had the DBS surgery have found that helps with their gait and writing.
    Thanks again for responding. Keep asking the questions. Sincerely, Bob Hardman

  • Hope Wiljanen says:
    Thank you

    Bob,
    Thank you for sharing your story. I am emailing it to several of my friends. I am 47 years old and was told 4 months ago that I probably have Parkinson’s disease. It’s hard to explain to your peers especially since most of us have children under the age of 10.

    Thank you for campaigning for stem cell therapies. I’ve never been one to be politically active but I see it in my life now. Good luck.

    Hope- Seattle, Wa

  • Faye Whitaker says:
    Different Thought

    Thanks for the inspiring story. It hits close to home, as my husband has PD. Only 4 years after diagnosis at age 48, he is almost completely debilitated and has not responded well to any medications. Like Bob, his faith, exercise, and a sense of humor are essential for dealing with it. However, we do not support embryonic stem cell research. We think there is much more that can be done with adult stem cell research and using one’s own stem cells instead of having to use embryos. If Bob does have the DBS, we wish him all the best.

    Faye Whitaker

  • Elaine Hunter says:
    My Family and PD

    Bob, thank you for your story. Both my parents had Parkinson’s Disease. My dad died at 81; my mom at 90. About 3 years ago one of my four brothers was diagnosed with PD, but we suspected as much for some time longer. Now another brother has been diagnosed and my two other brothers and I wonder what is in store for us. I and 60 years old and the youngest of the family. I hope President Obama reverses the Bush administration’s ruling on stem cell research.

    Thank you again.

    Elaine Hunter

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