You got to walk this way…(My job!!)

Jack - Mine (11-02-2012)

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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A new beginning

Guest writer for next week

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!!

How do you tell your family that you have Parkinson’s Disease? The Son.

Hi it’s Jack. Temperature is rising and the sun is up, it’s summertime!! The Owners son is out of school on holidays, so I am getting to spend a lot more time with him than I usually would and am enjoying getting to know him a lot better. We actually have quite a lot in common, for instance we can both lie on the floor for hours on end without moving and pretend to be watching TV. We both have the ability to eat any kind of food, at any time of the day, in large quantities and regardless of what we have already consumed that day. But much more importantly we both share a sense of compassion, gentleness, fun, and most importantly an unconditional love for our family (which still includes the Cat!)

The Son has grown up with the reality of his Dad having Parkinson’s Disease, he was 18 months when the diagnosis was confirmed and that was 11 years ago, so he has never experienced a different Dad. Naturally it is not all smooth sailing and very occasionally he will get upset…What upsets him? Generally its the innocent questions he gets, “How come your Dad’s hand shakes? How come your Dad walks funny?” Asked without any malice, just curiosity or genuine concern, these usually draw a non-committal answer such as “He has a sore back”, or “He is just tired.” For adults dropping the bombshell, “He has Parkinson’s Disease” is a lot to take on board, never mind a 13-year-old boy.

How has the Son managed so far? Brilliantly, he rises to the challenge every day with bravery, sensitivity and a good sense of humour. The Owner is still his Dad and that’s all that really matters to him. He loves his Dad no matter what. Occasionally he gets frustrated when they can’t do stuff together as planned, or they can’t do some of the activities that other boys do with their Dad. But by in large he just gets on with life and doesn’t let it bother him too much.

How has the Owner managed the Father and Son relationship? Started out poorly but has improved with time. Initially the Owner had great difficulty accepting the diagnosis himself, never mind explaining it to his son. How do you explain the realities of early onset Parkinson’s Disease to your child? Explain that his health would progressively deteriorate and that there is no cure? That yes, sometimes the medicine works and sometimes not, or that the medicine he takes is not treating the disease just the symptoms. Dad’s are supposed to have all the right answers, to be wise, to set an example and to face adversity with a brave face. With Parkinson’s Disease there are no right answers, the Owner didn’t do anything to get it, there is no direct cause that can be understood  or blamed, it’s not like smoking and cancer, it is just …shit.

The Owner understands what he has to do and that the Family take their lead from him. He maintains a positive outlook and puts on a brave face on the day regardless of how he feels. He also understands that he has to lean on his family a lot more than other families would and he appreciates that support so much. How are they doing? So far so good, they have gotten this far together and I for one am backing them to go the whole way…together.

Silent Isolation

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Hi All!! Just back from a weekend away with family in Connemara in the West of Ireland, beautiful food, good company, stunning scenery and nice walks. Best of all…? I got to go and The Cat had to stay home. Yes I know, I used to get car-sick but the ginger snaps have fixed that and just in case an aunt had left some gingerbread, not that I saw any of that!!

We have spoken about loneliness before, but in relation to The Owner, that isolation that is experienced during a bad symptom day or simply the effect Parkinson’s Disease has on the best laid plans… All are subject to change at very short, or no notice due to the onset of freezing, tremor or fatigue. I encourage The Owner to push through these difficult times, and most times he does or works up a compromise. Doesn’t always work but he is no longer taking the easy road and just saying no.

What I wanted to talk to you about is the loneliness experienced by his wife. She married him 15 years ago a strong, athletic man with a good sense of humour and a blossoming career path. Sounds wonderful!! They had fun together, they enjoyed travelling, food and most of all each-others company. His wife his now essentially his primary care giver, and that is the role that occupies so much of their time together. Granted they have 2 children which takes up a lot of the time, but less and less  as they get older.

So why were there tears last night? Simply put she occasionally misses the athletic and carefree man she married and understandably so. She is now responsible for far more than anyone would have been anticipated and she never complains. Never, ever complains. She loves the man she married and she still loves him every bit as much today, probably even more than when they walked down the aisle. However sometimes the line between being both wife of and caregiver to get’s blurred.

The Owner needs to make as big an effort as she does, to ensure that his wife get’s the best of him and not his caregiver. Not as has been the case too many times before, where the chores of the day are done and she is left only with a sleeping house and  memories of what might have been, before Parkinson’s Disease stole some of the man she married.. Absolutely entitled to shed a tear.

If you wish to read more of my story please like, share and follow.

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.

I Love Him…. So very, very, much!!

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Jack and Dad

It has been a while since my last post and to be honest I have been very busy with The Owner, it has been a tough couple of months with a prolapsed disk. For once however Mr Parkinson is taking a back seat, he still sticks his head in the door three times a day with the little yellow pills, the big white ones, and the other white ones, etcetera, etcetera… I could go on!! His surgery is scheduled for 14th of May and believe me, it cannot come quickly enough. He is such a grump!! Not just with me mind, but with everyone!! The family had friends for dinner last weekend (no leftovers!!) and I heard this sound I didn’t recognise. The Mother leaned over to me and said “It’s okay Jack, I think he is laughing.”

Now I don’t know about you, but there is only so much a dog can deal with in a day. “Down Jack”, “Stop sniffing the Cat Jack”, “Food or love Jack?” and my personal favourite “I don’t care what the other dogs do, please don’t wee on your food bowl!!” Regardless of how grumpy he is with me, he knows I love him so, very, very much, but boy can he make it difficult. When I wake up in the morning it’s a fresh start for me so, love, honour and obey (well maybe not all of the obey bit.) For family and friends it is a bit more difficult to get over harsh words and short answers.

He had his pre-op assessment last week, and I think it opened his eyes to other people’s pain. In 4 weeks time he will be back on his feet and pain free. The older gentleman sitting beside him, unable to cry, such was the shock and grief he was experiencing. He had lost his wife of 47 years that morning. She was his whole life and he will never get another second of the life with her back. Two strangers sitting side by side, one offering inadequate sympathy and the other sound advice. “No matter how difficult the day before was, wake up in the morning, tell your wife you love her so, very, very much, and give her every opportunity every day to love you.”

I think what he was trying to say was that no matter how tough your illness is, be it Parkinsons or something else, you must give the people that love and care for you every opportunity to love you. Don’t allow pain, uncertainty and doubt to consume you, let them know that you love them so, very, very much and say goodbye to Mr Grumpy. Oh yes, the answer to the question Food or Love? Easy… Love (unless of course I am hungry!!)

The Only Place You are a Burden… Is in Your Own Heart.

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WP_20150209_016 (640x359)The Owner and I were watching a home renovation TV show this evening, about a veteran who had been invalided out of his military for injuries recieved after serving for 10+ years. His injuries are progressively debilitating and he was really struggling with moving his life forward, believing that for him his future was on pause for the rest of his life. In his own words “I don’t want to be a burden, I don’t want my condition to prevent my family from doing things, that they would be able to do if I was able-bodied.” He is married to a wonderful woman with three fabulous children, but struggling to accept the physical limitations and identify a future for his family given his medical condition. Sound familiar?

I think everyone on the TV show cried when the reveal was done, The Owner cried and I would have too (if I could!!) The effect of seeing this man who had nearly given up, being given his hope back was very powerful and emotional for him and his family. During the show his family were interviewed about the effect of making his home more accessible to him would be. The recurring theme of their answers were that their father felt he was a burden, but that they loved him regardless of his injuries and the day-to-day difficulties of living with his condition. Sound familiar?

He is a proud man, and reluctant to ask for help, but the effect the renovations to his home had on his life was profound. The father was stunned by the generosity extended to his family, and that is the key… He  realised that the family included everyone living under the roof, most importantly him. That denying his wife and children of his participation was making the situation worse not better. That he could no longer deny them the love, care and devotion that they unconditionally give him everyday and that they love him just the way he his. Sound familiar?

The story resonated with The Owner and I. You could replace his injuries with The Owners Parkinson’s disease and they would fit like a glove. Just let them love you…

If you want to hear more of my story, please like, share and follow.

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