Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”

Posted April 4th, 2012 by

PatientsLikeMe Member Jim Askell, Author of "Wobbling Home:  A Spiritual Walk with Parkinson's"

Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007.

A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home:  A Spiritual Walk with Parkinson’s.  This meditation on illness and faith looks at Parkinson’s through the lens of Quakerism.  Why does this Quaker recorded minister view the disease as a gift?  What does he wish the public knew about Parkinson’s?  Find out that and more in our interview below.

1.  Tell us about your latest book, Wobbling Home: A Spiritual Walk with Parkinson’s.

Wobbling Home follows on this man of 73′s two definitions: I’m dealing with Parkinson’s Plus and for forty years I’ve been a Quaker (The Religious Society of Friends). My Quaker belief is that my life itself is a gift: precious, freely given, unearned. And further, that everything in my life is a further gift: health, abilities, family, valued friends.  I’ve earned none of these. They’re gifts. And after my initial diagnosis, I came to view Parkinson’s as a gift as well. It’s not one I would have chosen, but I accept it gratefully as the definition of the rest of my life.

Click Here to Learn More the Book on Amazon

And so the book is an attempt to share my attempt to harmonize this progressive disease with my own pilgrim’s progress as I wobble on toward home. I talk about Parkinson’s from the inside, dealing not just with the physical symptoms (lack of balance, shuffling walk, tremors, slurred voice, etc.) but with the perceptual, emotional, and psychological symptoms that recreate our interior lives. And that’s where Parkinson’s and my Friends’ beliefs dovetail together.

2.  In honor of Parkinson’s Awareness Month, what aspect of the disease do you think the public needs to know more about

The general public needs to know of the prevalence of Parkinson’s. Statistics now suggest that one in every 300 of us Americans suffer from it, with an ominous bulge in rural populations, perhaps because of careless use of pesticides and chemical fertilizers. Second, the public needs to know that, though their disease is chronic and irreversible, until its later stages most “Parkies” can live largely normal and often very productive lives.

Third, the general public (and many, many doctors) need to know how subjective Parkinson’s is from patient to patient. In our [local] support group, no two members have exactly the same mix of symptoms and medications. And fourth, the general public needs to know how important it is that they make a place in their midst for Parkinson’s sufferers, and for all with chronic, incurable diseases. To my mind, that’s what  ”treating others as you’d want to be treated” is all about.

3.  You and your wife attend a support group that has both joint and separate meetings for patients and caregivers.  Tell us about that.

Care partners, female or male, are the unsung heroes of Parkinson’s. When our support groups meet, we first have an hour with Parkies and partners together. It’s a how-goes-it session, with each person present saying what the last two weeks of dealing with the disease have been like. Members in each group often learn surprising things about their partners’ dealings with a disease they truly share.

In the second hour, the groups separate. Care partners can then talk together about their own challenges, frustrations, and manners of coping with someone increasing debilitated, both physically and cognitively. (From what my wife tells me, a good amount of healthy venting goes on.) Meanwhile we Parkies are trading notes across the hall. Talk among us is largely of symptoms: who is having plumbing problems, who is dealing with hallucinations, who is frustrated with his GP or neurologist’s seeming lack of understanding of what’s going on INSIDE her or him.

Our group is largely men with a few women; the [partner] support group is largely women with a few men. (Initially we thought we’d have to have an all-men’s support group – how else to talk freely about plumbing problems and the like? We needn’t have worried a moment! Turn out that we’re all rowing the same boat.)

4.  What kind of role does PatientsLikeMe play in your life?

PatientsLikeMe is an invaluable aid to me, and I recommend it to everyone in our group. In fact, it fulfills the same great needs: for good and reliable information but, perhaps more important, for a sense that I’m not alone with Parkinson’s challenges. God bless PatientsLikeMe, its staff, and its work!


9 Comments

  1. My wife and I have had the pleasure of Jim’s company on several occasions. He is an uplifting presence who doesn’t allow his personal disability to interfere with his ability to see and meet the needs of the moment.

  2. Hello
    Dad had Parkinsons from the age of 50. I have Cerebellar Ataxia diagnosed about 4 yrs ago when I was 47.It is a different Nerotransmitter but the effects are similar.Seems like history repeating itself .I now realise how brave my dad was.I grew up with Parkinsons so you can imagine what i thought it was.Speevch and mobility are virtually non existent but none of the cramps yet

  3. LIVING INSIDE OUT By Gary Sorkin

    The genesis

    I noticed this thing happening to me about a year ago. It was too dumb to think it was anything but my imagination. I was having trouble putting on a jacket. I’d swing the sleeves behind me and maneuver to get my arms in, but the arms weren’t where they’re supposed to be. Then I’d get all tangled up. It was too weird to contemplate. I ignored it.

    The first one to notice anything was my brother. He was up from Florida for a few days. I met him and his wife on a street corner on the upper eastside. We had lunch. It went fine. I hadn’t seen them in a long time. When we were leaving, I went to put on my sports jacket – and got all entangled in the sleeves again. My sister-in-law had to help me. What’s going on?

    We went our separate ways. I met my kids for dinner. I made sure to keep my jacket on. The next week my brother called and mentioned the jacket incident. He also said, “How come you were moving so slow?”

    I got insulted. I said, if I knew you were timing me I’d have moved faster.
    BUT, I knew…Something was very wrong.

    The surreal life

    The trouble with coat sleeves had grown to problems with other common daily movements. Showering was something to dread. The act of putting my arms over my head to shampoo my hair just exhausted me. Toweling by back and backside off with my hands reaching behind me, was, just, well, a battle.

    I told nobody.

    I began living my life from the outside in – instead of the inside out. What I mean by this is – I became far too aware of every thing I did. I don’t want others to know. Are they watching me? Am I swinging my arms enough – or too much? Is my gait natural or does it look forced? Is that guy looking at me? I’d better swing my arms more. Are my steps in synch with my arms? You’re doing okay, no one is noticing.

    I was exhausted.

    I live alone. Life around my apartment was like a 45 record on 33 speed. If you ever saw someone practice a Chinese martial art – all deliberate slow-motion movements – that’s what I was like. Going from one room to another was like walking through thick air. I knew I was doing it: the slow steps, the hand movements. It didn’t matter, I was alone. I don’t have to explain.

    Where did the real me go?

    It was all so surreal.

    Outside-in

    Living outside-in has disadvantages for sure. Introspection does not begin in the third eye of the next man. I do try.

    I meditate. I yoga. I Xi-Gong. I take special-can’t-fail Japanese Kiiko Matsumoto acupuncture. I even volunteer to become the Master Kiiko’s subject before a hundred of her students. This cigarette smoking ball-of-energy pokes my body from head to foot babbling in Japanese/English. The students nod their approval. While on the table, my hand starts to tremor. Master Kiiko has no answer. How dare I insult her.

    I’m aware of each step I take, each wave of my hand, each tic of my shoulder, each blink of my eye. My finger pulses – my toes begin to tingle.

    The shakes at 7-11

    The convenience store is the last straw. My newspaper and coffee costs one dollar and seventy-five cents. The same as always. I am unprepared as I arrive at the counter. I reach for my wallet. It won’t come out. My hand shakes. I see me through the eyes of every person in the store. Finally, a twenty dollar bill. The customers behind me are growing impatient. “C’mon, move it along. What’s the holdup?” I get the change. The coins roll onto the floor. Both hands are shaking. My knees tremble. I move to the end of counter and knock the coffee off. I hear laughter.

    OH GOD HELP ME!!

    Walk this way

    My next stop was obvious. “Let me see you walk,” said the neurologist. Go straight down the hallway and then back.

    Sure, no problem. “Ok now, I must concentrate – I’ve been walking since I was a baby – Forget about swinging your arms, the man said ‘walk.’” Easy enough, now do it. NOW, WALK, JUST WALK! Just put one foot in front of the other. I’m halfway there. So far so good. A little wobbly at the start, but I’m sailing now. Ooops, stupid carpet.

    How’d I do?

    That wasn’t too bad. It looks like you caught it early. Caught IT? What have I caught? Then he said the “P” word.

    Zumba left – Zumba right

    Parkinson’s. Parkinson’s. Parkinson’s disease – one, two, three, cha-cha. Clap and turn left. One-two-three, now clap and turn right. I said right.

    The movement specialist called me “a stage 3.” Out of what, I asked. Please let there be ten. Out of five, you say. With luck, and proper medicine, Stage 3 can last ten to fifteen years. Or NOT.

    I never doubted that I had Parkinson’s Disease. I’m not denying it now.

    I’ll adapt.

    I just wanted to get through the day. I tried to have the proper dollar amount in hand so that there would be no delay at the counter and I could keep on moving. When I walked from my car to the big entranceway of the YMCA, I’ll take each step with deliberation. My arms are not quite in rhythm with my legs, but I’ll make it through the front door and I can just keep on moving. When I walk up the steps to get home; It feels slow. I feel slow. Everything feels slow. The earth turning on its axis feels slow. I just have to keep on moving.

    I’d stare at my wrist. I’d watch the tremor start, and then…I’d stop it with my mind. And then watch it start again.

    Not write for me.

    My penmanship, where has it gone to? My windswept G, my Olympic figure-skating S, even my mystical Q – gone like the wind. I can’t write. I mean I can type, sort of like a jittery skeleton with rattling bones, but there is to be no more pen in hand kind of writing. My hand shakes all over the page. Oh, this is way too obvious. I don’t like this. This will not leave me unscarred. Whilst taking a training course, I had to sign my name at the bottom of the test. Oh dear lord, there’s no way…just no way. Everyone is looking. The instructor comes over, grabs the pen from my hand, and writes my name at the bottom of the test. Who are you, blessed angel? She knew, she just knew. Come back. Don’t leave me. I don’t know where the bottom is yet.

    The medication is making me beyond exhausted, beyond nauseas.

    The YMCA had just added a Zumba class. Latin aerobics. I was once a dancer. The room is full of women, a few men. The instructor turns the CD on and everyone Zumbas. I try, but the movement just ain’t there. I’m out of synch, out of rhythm, out of excuses. I turned and left. The instructor asked me to stay.

    “I can’t, my rhythm is gone,” I implored.

    Sigh.

    The Monster is in the lead.

    More medicine. Too much. Too little. Sick to my stomach. Whacked out of my head.

    Finally, Dr. Jeckle finds the right formula. The symptoms go away. I can move like I used to. I can put a jacket on with ease. My handwriting is smooth and easy. The tremors are few and far between.

    The Monster wins.

    Not for a moment does it leave my body. Not for a second do I forget that it’s alive and well inside my brain. I have no pain, I have no fever.

    Out, out damn disease.

    When it wants to – - it just kicks me around.

    The Monster is asleep.

    Life goes on. I think I’m writing better.

    I met a woman.

    I must admit – I’m Ok. I’m looking forward to tomorrow.

  4. Gary Sorkin -comments about your parkinson’s “adventures” and how you are so aware of slow movements and trouble with your coat sleeves sounds like I am your “twin.” I kind of thought the things you wrote about only belonged to me. It has been five years since diagnosed – I hate the slow movements experienced and lack of my old spark……I wonder what the future holds but for today I try to focus on what I CAN do. When my hands shake trying to eat or sign my name I feel I should tell people I have Parkinson’s – or ignore it?
    What do you do in this situation. Let’s hope for a positive outcome for all of us.

  5. Hi, my name is Sam Crites and at first I was told I had PD. However, the neurologist at WVU changed that diagnoses to MSA. That was 2 years ago and I am thankful that I do not seem to be getting worse as quickly as others we have read about. I’ve been told that MSA is a fatal disease. Yet, I can still rejoice in my MSA! How? I am a believer in the written word of God,the Bible and the Living Word of God, Jesus Christ. I am a sinner saved by my simple faith and trust in Jesus for my eternal salvation. None of my good works could ever make up for my sin. Only the shed blood of Christ can do that! I’m glad I’m not getting what I deserve! MSA is better than what I deserve! I can rejoice in my condition, because the Bible tells me to give thanks in everything and to rejoice always. How is that possible when I am facing a fatal disease!? A disease that will soon take me away from my wonderful wife of 39 years?
    Why am I here? Just to make money or see how many deer I can kill? No, my purpose in life is to glorify my God. Rom. 8:28 says that all things are working together for my good. Problem is most believers in America believe the “good” is our comfort, our entertainment, our enjoyment! If God allows a trial and we keep a right attitude, then He is glorified. And if my God is being glorified, then I am thankful! I can be thankful for each storm, each trial! I may not always understand why, but I can still trust Him. An amazing statement I once read has been a blessing for me and trust it will be a blessing for you also: “when we get to heaven and see all that God accomplished through our trials, we’ll wish we’d had more of them!” Another thought that should cause every believer to stop and contemplate: “God being glorified is more important then me feeling good”! If we choose not to rejoice, but instead suck our thumbs and have a pity party, we are then wasting this trial and going through all of this for nothing!I don’t want to waste this opportunity to glorify God! I trust you do not want to waste your opportunity. I welcome your comments

  6. Oh thank you for sharing these stories!

  7. Hey, good friends! I’m the Jim whose interview got this whole wonderful chain going. You already know that I’m a Quaker, and I want to make a Friends promise to every one of you commenters (maybe especially Sam, just above): Friend, I will hold thee in the Light. That’s the Light of Divine Love, and I’m not just going to hold you–I’m going to stand by you and hug you in the Light. For you’re surely my sisters and brothers in every way.
    And my brother Gary! As I read and recognized in myself all your challenges, including getting entangled in my coat (and bedcovers) and dreading the danger of falling down in the shower, I really wanted to cry in sympathy. But, as you may see in my book, “Wobbling Home,” I haven’t been able to cry for four years. Oh, the impulse comes and builds, but not the tears. It’s like waiting for relief from a thunderstorm and then having the clouds pass right over you. It’s enough to make you cry. Yeah, sure.
    I wish I could offer you all more than love and understanding–and maybe I can. Here comes a moving gloss on the wondrous Jewish funeral prayer, the Kaddish. The paraphrase is by Charles Reznikoff, who must surely have been a mystic. Here’s what he says of our tiny human lives: “Out of nothing/ I became a being/ and from a being/ I shall be nothing./ But until then/ I REJOICE/ a mote in your world/ a spark in your seeing!”
    Do I hear an Amen, brothers and sisters?

  8. An afterthought for fellow scrawlers of signatures. My acupuncturist made a great practical suggestion that works for me. As you well know, tensing up to try to write a legible signature generates stress that makes things even worse. So, said my friend, imagine to yourself a BLUE, CROSS-EYED RABBIT. Look at him straight on, noting the buck teeth, the twitching nose, especially those sad crossed eyes. Then, with him strongly in your imagination, write your signature. Damned if it doesn’t work for me! I guess I get lost in amusement at and sympathy for the bunny and go on automatic pilot for the signing.
    The idea’s not patented, so feel free to try it. I’d love to hear your results. Warning: Don’t try imagining other cross-eyed animals. If you do, I can’t guarantee the results. So don’t offend the bunny! Thus saith your loving brother Jim.

  9. What great stories! I also invite everyone over to PatientsLikeMe.com. There, you can continue to share and connect with others. The community has members with all types of conditions, including Parkinson’s, MSA, and Cerebellar Ataxia.
    Hope to see you there!!

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