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.

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Silent Isolation

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.