A new beginning

Hi All,

Having completed my apprenticeship as ghost writer for Jack,  I think it is time now to introduce myself properly. My name is Duncan, I am 44 years old, married with a Son aged 13 and a Daughter aged 12. When I started writing Jack’s Blog I did so as a way of giving an insight into what it was like for a family to live with Parkinson’s Disease. I wanted to share the day to day things that are not always visible to people outside of our immediate family. I didn’t want to come across as preaching or self pitying, because that is simply not me.

Guest writer for next week
                     Allie our wise old Cat.

I was diagnosed with Early Onset Parkinson’s Disease 12 years ago. At the time I knew nothing about the condition, but needless to say I know a little bit more about it now. It has been a bit of a roller coaster ride, not just for me, but for family, friends and colleagues also, they didn’t ask to  come on the ride, but so far none of them have asked to get off either. Supporting me throughout, from the shock of the initial diagnosis, to helping me to finally learn to live with Parkinson’s Disease they have stood their ground and so must I.

Yes I have Parkinson’s Disease, but what but it does mean for me now? Have I changed? I have no idea what my life would be like if I had not been diagnosed with Parkinson’s Disease 12 years ago. Last Saturday, I came to the realization that I don’t care about what might have been anymore. Not everything in my life has changed, just the way I was looking at it. My wife, friends, and family still call me Duncan and my children still call me Dad. I realized that life with Parkinson’s is what you make of it, not by avoiding the things you think you can’t do, but trying the things that you want to do, even if you are afraid you might fail.

Where was I when this struck me? I was on a tee box for the first time in 12 years having not picked up a golf club since I was diagnosed. Nervous, not wanting to embarrass myself I had already tried to back out at the last moment, but my playing partners were having none of it. I may have lost 6 balls in the space of 9 holes, I did loose count of how many strokes I had taken and missed make-able putts from 12 inches. But I really enjoyed myself and so did the rest of the 4 ball…. Wife, Daughter and Son. I want to play again, and so do they, but we are not going to wait 12 years for the next one!!

You got to walk this way…(My job!!)

Hi All!! It’s Jack and I am back… Feeling good and enjoying another beautiful Irish summer (ahem!!) You will have heard about the 40 shades of green, well this summer is more like 40 types of rain!!! Horizontal, damp, wet, soft, etc… you get the idea!!

Jack - Mine (11-02-2012)

Having said that, I am enjoying lots of walks on the beach in the company of a revitalized Owner. His back is much better and his confidence in his mobility is higher than it has been for a long time. To be fair I am not claiming all of the credit I acknowledge that the recent change of dose in his meds was helped, so let’s leave it 95% down to me….fair enough? What’s my secret? Exercise and being smart about how we take it. A shorter walk 3 times a day is so much better for him than a big walk once a day. Sounds very simple and straightforward… I don’t pretend to understand everything that goes on in that head of his (if anyone does, then answers on a postcard please!!) But why has it taken him this long to figure out the exercise helps Parkinson’s?

He used to play rugby, swim and train 4 times a week and he enjoyed it. After he was diagnosed with Parkinson’s Disease he gradually reduced the levels of regular exercise he was taking, when in fact he should be maintaining the exercise levels as high as he could. Lazy? I don’t think so. Embarrassment? Only natural to be a bit self-conscious of exercising in public whilst dyskinesia has your body demonstrating all the co-ordination of a new-born baby Giraffe. Depression, certainly was a small part of it. But what then?

The answer? Probably a little bit of all of the above, but most of all a massive dose of fear and denial. He was trying to convince himself that he was not sick, so he was certainly not going to do physical activity to demonstrate otherwise. Bizarrely (or not?) his denial drove him away from some of the very things that he loved and enjoyed so much. Fear that should he try to hit a nine iron and fail to make the shot, or ride a wake-board and wipe out, that this failure would confirm the inevitable decline of his physical abilities as a result of Parkinson’s Disease. If he was having difficulty enough accepting the diagnosis, then he was certainly not going to do anything to reinforce that diagnosis. (As I said before answers on a postcard please!!)

My Job? To get him up, out and exercising again. How? Took a while but, in the end the answer was very simple, relearn the enjoyment of physical activities. We simply do activities that we enjoy, not for the exercise value but for the pure enjoyment of the activity itself. Yes sure, there are some things that he may not be able to do, but with the acceptance of his diagnosis and a growing confidence in his own physical abilities he is now saying a natural “Yes” rather than the instinctive “No” of previous years.

It was small steps initially, but suddenly and without consciously planning to he surprised himself. He lost 8 kilos (17 lbs) and narrowed his waist size from a 36 to a 32. How? Walking to the village rather than getting in the car, cutting out junk food and doing his back rehab. Looking better, but most importantly feeling good about himself physically for the first time in a long time builds mobility confidence. Something that most people take for granted such as walking to a local shop, can be a daunting trek for others, but for him now, not so much. That is my reward, lots of walks and a happy family.

Although his golf clubs may have not been not picked up in 10 years and he had forgotten that he even had a wet suit, he is going to the driving range tomorrow with his son…..for the first time. (Ever !!)

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Blinded By The Light!!

Apologies one and all, the surgery went well and The Owner is back walking me on the beach….Yesss!!! This post is a little different from usual, it is the first chapter of a book he is working on. He is looking for a publisher so please read and if you know of someone you could refer him to, then please get in touch.(duncanhughes01@eircom.net)

Dusk 3rd January
It’s wet and cold, a winter time evening in Alabama. The damp air smells so different to summer, none of the heady fragrances of over ripened strawberries and fresh cut melon, just the dank, dark smell of decaying leaves and wet dog. It sounds different too, quiet, missing is the sound of children playing, replaced only with the sound of rain dripping from the naked branches of trees. Our home, a trailer that I share with my brother stands on an acre of Alabama soil, the cedars that surround us standing like sentinels, enveloping us in their secure embrace. Year round they guard us, protecting against wind and rain in the winter, shading us from the brutal sun in summer, and granting us privacy from prying eyes all year around. This is my solitude, and I guard it fiercely. Glancing over to the passenger seat of my truck, there looking up at me is my constant companion Diago, my 8 year old Jack Russell. I return my attention to the road and then I scream “Oh Dear God I can’t see!!”

Closing my eyes I whisper “Breathe Hodie, breathe.” Gradually getting control of my breathing, my very own breathing. I can still hear the rain drumming on the cab of my truck, I can still smell the faint air mouldy leaves. “Get a grip Hodie, get a grip” I murmur to myself as I slowly open my eyes. It’s not a dream, I am still in my truck, and I am still parked outside my home surrounded by the cedars. That same Chevy truck that I bought four years ago, that same Chevy truck that I have not been able to drive for the last two years. “Dammit Hodie, why do you do this to yourself girl? Blinded by the light?” I snort as I look up at the rear view mirror. I still can’t see in the dark, and I know it’s not getting better anytime soon. Time to switch off the engine and go back inside.

Darkness 3rd January
Time to eat. Feed my Diago and feed myself. I hit my meal time routine, the routine without which I know I will be lost. Saturday evening, I decide to risk a burn from the stove and cook for myself, Korean noodles and stir-fried vegetables, all in one pot. On a bad symptom day I run the risk of getting burnt, and honestly on those days it’s not worth it. I used to love to cook. Diago eats what I eat. I set the table every day, place mat, knife and fork, napkin, glass of water. I am still a lady of the south. I say grace and eat, savouring every mouthful of the meal that I prepared myself. Clean-up routine, clean the counter, scrub the stove, straighten the cover on the couch, make sure the pictures are straight, everything perfect. I inspect the kitchen, and mentally compare it to the list, all boxes ticked.

Bedtime routine commences, check all the locks, convince myself that I did not miss any, and then check all the locks again. Prayers. Check all the locks again. Brush my teeth, wash my face and then PJ’s. The worn flannel ones I bought 3 years ago in the Walmart sale, the ones that remind me of bed-time stories with my Grandfather, him reading me to sleep. Brush my teeth again and force myself to look at the reflection in the mirror, “Tomorrow will be better Hodie, sleep will come tonight and tomorrow will be better…” my mantra. Switch off the light and into my bed, Diago joins me on the bed and I open up the lap-top, just an hours browsing I promise myself, then sleep will come.

My Grandfather, was not just a Grandfather to me, he together with my Grandmother provided the only safe harbour that I have ever known. He passed away in 1996 when I was 16. Since then my Grandmother, and she is the example which I strive to follow. She is a Lady and is a daily part of my life, we chat every day. I log on to my Facebook page to see his smile and remind of those words I wrote. They come from memory but I still read them word by word every night:

“In honour of my Grandpa. Happy Father’s day Grandpa. I miss you daily more than words can express but, I know the Lord needed you home. You taught me unconditional love and what it means to be a dad. I was blessed to have you in my life. You’re loved and missed beyond words every day but, especially so today in the day we celebrate our dads. May the Lord give you my message and angels hug you tight since, I can’t do it myself I pray your celebrating Father’s day with your dad and our heavenly Father. I love you Grandpa. Happy Father’s day to you & our heavenly Father whom you introduced me to. Thank You R.I. P….. Love isn’t an adequate word for my gratitude & appreciation. (Xxx) Hugs to Heaven… Love your girl.”

I browse, and browse finding pictures that are supposed to inspire courage, perfect sunsets with perfect words ‘There is no I in team’, I post them on my Facebook page and continue to search for answers… I still can’t sleep. I am a 35 year old woman who is afraid of the dark, a woman slowly going blind, and I am afraid of the dark…the irony of that fact cut’s to the bone. “Browse on Hodie, browse on…” I murmur but I am not fooling myself anymore. The answer is not out there, it is in me, and I have to get it out of me before it is too late.

Dawn 4th January
It’s getting light outside, I have not slept, but with the dawn comes the light, and I now know what it is I need to do. I prayed for an answer last night, and got one, not the clear and simple answer I asked for but a path. My God never gives me the easy ones, he likes me to have to work at it. My story is a long and complicated one, but I have always known was to be told. I have tried to write it many times but every time I started, I found a better reason to stop.

It will still my story but I don’t have to write it myself. The path I found this morning leads me to a novice writer who lives in Ireland, I have never met him, I have never even spoken to him, he has only started writing three months ago and that consists of a weekly blog about living with Parkinson’s disease. The perfect choice… I couldn’t have picked a better candidate!! Urgency however drives me on, the need to do this soon, before I am completely blind. Yesterday evening in my truck was no accident, it was a sign of what’s to come, a tap on the shoulder to say “Get on with it Hodie, times a wasting.”

Daylight 4th January
“Ok you can do this girl, you just need to ask!” I repeat this to myself over and over. Check Facebook, “Yes!!” he is online. “Oh shit, he is online, oh shit, oh shit. Enough, breathe Hodie. Just ask him!!” I click on messenger, what’s the worst that can happen? He might just say yes… He does, he say yes! So many questions, how do we collaborate across 3,972 miles (I checked it) and six time zones (I checked that 2!) I have no idea how we are going to make this work, but we resolve to try to write two chapters. I am excited and terrified all at once, but one thing comes back to me time after time. I go back online, he is offline so I have time to compose myself and ensure that I make myself absolutely clear so I ponder and then type:“You know something about me, medically speaking, but my story goes very much deeper. My childhood was what nightmares are made of… can u mentally handle that? It is emotional & tough to hear much less write. If at any stage you want to stop, you just say… I want you tell my story, not a pity me…. but a book of enlightenment, hope, and awareness.”

He has asked me to read one poem, Dylan Thomas, “Do not go gentle into that good night” and then come back to him. I read the words and now I know for sure. He gets me, I don’t know how or why, but I know we can do this. I don’t want to pass from this world without having done this, to be forgotten. I resolve to do this, not for me, but for others, so they may learn from my experiences.

He has no idea what he is about to let himself in for… neither for that matter do I.

We all need somebody to lean on.

We All Need

I am 10. Which according to some very complicated human formula is supposed to make me 70 in “dog years”, whatever “dog years” are. In my book that still makes me 10, and looking good. One of my owners friends is in his 50’s (human years!!) has a wife and 3 children, and last week he told my owner that he had been recently diagnosed with cancer. His wife has been sick for a long time… sometimes we all need somebody to lean on.

So step up owner and friends… what did they do? They went to the pub on a Thursday evening, a school night!! In the privacy of the snug with 2 other friends they drank Guinness, so much in fact that Friday didn’t really happen (they really are not as young as they think they are!!). But they had a great time, they smiled, laughed, and in general didn’t take themselves too seriously, amongst friends that’s ok and is very worthwhile.

Gave my family pause for thought too, sometimes we need to step out of our normal day-to-day and realise that there are other families with much greater challenges to face than our own. They do so with inspirational grace, humour and steadfast belief. In a very quiet and dignified way they just get on with life, no complaints, no drama, no blame.

Our job? Is to remember that some days even superheroes wear their underpants inside their clothes and that on those days we all need somebody to lean on. So lean on me when you are not strong…

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Not a dog’s life… It’s a Mom’s Life!

Sometimes I wonder if there is more I could do… the girl and the boy are growing up quicker and quicker. They spend more and more time away from our pack (which IMHO should still not include the cat.) When they get home in the evenings be it school or sports, they are tired and hungry, they need fed and the day discussed, homework checked, then bed. By the time my owners finish their day, all they want to do is collapse into bed… they look at me and say “it’s a dog’s life Jack…Goodnight.”

It’s tough enough raising children, my poor mother had 9 of us to deal with, but that’s another story, tougher still if one person can’t carry a full share of the load. If the father is travelling with work, tired, or having a bad Parkinsons day, then it all falls on the Mother, most people don’t see it, but I do because I watch her.

From 6:30 am to 9:30 pm every day, she plans and produces school lunches, breakfast and dinner. She organises laundry, cleans the house… and then goes out to work!! She does not complain, she just get’s on with it. She is not the one that is sick, but she carries the largest load. Sometimes when she is alone she sheds a few tears, I put my head in her lap and she knows that I love her, she stands up and smiles and says “Jack Dog I love you”, I think to my self… not a dog’s life… It’s a Mom’s life, now how can I help her?

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Sometimes he walks funny…and people stare at him..

Hi my name is Jack. I am a working dog. I received no special training like a guide dog or a police dog. My job is to help my owner, he has Parkinson’s Disease. Sometimes he walks funny…and people stare at him.

I was 7 when I met him and his family 3 years ago, there is a Mum, a boy, a girl, a cat and him. The first thing I noticed was that when he was tired or working too hard he his right leg would get stiff and his right arm would shake. Sometimes he walks funny…and people stare at him.

I am a dog, so I cannot not ask him what’s wrong, is he sick, will he get better? So I help as I can, I always walk on his right side so that if he gets stiff I can but my shoulder to his knee and this helps him to walk better. Sometimes he freezes and cannot get his right leg to move, he stumbles, if this happens I put my head to his knee and give it a push, this gets him moving again. Sometimes he walks funny…and people stare at him.

Why do people stare at him? Are they afraid? Parkinson’s Disease is an invisible condition, they see the symptoms and draw their conclusions. I am a dog so I see the husband, the father, the friend, the provider; I see my master. Sometimes he walks funny… and I make him smile.

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