We all have our little thing…

We all have our little thing!!

Hi it’s Jack, we had a really nice surprise last week when The Owner’s cousin stopped by with her youngest son, Baby Leo. The Owner and his cousin have known each other a long time and are very relaxed in each other’s company. Me, I am a dog, so I take my cue’s from The Owner, if he is chilled, then so am I. Baby Leo is 9 months old, so can’t make that decision himself, instead he takes his cue’s from his mother. She knows me well, so is as you can see, cool with Baby Leo chilling with me on the floor. They don’t call me the “Baby Whisperer” for nothing, well actually they don’t call me that at all… but some day though!!

The essence of my relationship with her baby is one of a mutual trust and an absence of fear. She knows me well and trusts me with her child and he is not afraid of me. Equally I know and trust her, and I am not afraid of her baby. Simple… isn’t it? So how come with some other relationships The Owner manages to make such a dogs dinner (I had to get that in!!) of it? So is it the absence of fear and or trust that is missed…or is it that he forgets that it has to be mutual… the latter me thinks!! If people are afraid to ask him questions then 25% of the equation is missing before they even get started. That is his job to work on and he knows it. When you are sick you can tend to get very self-centred and forget that those around you have their own lives to lead and that you have to respect and encourage them to do so. Sometimes he needs a kick to be reminded that the world does not revolve around a Parkinson’s Disease axis, with him that the centre of that sphere.

The other thing he needs to consider on occasion is that he is not the only one who is sick, just because there are no visible indications of sickness does’t mean every one else’s life is perfect, because it’s not. Some may be better had hiding it, others may not even be aware of it yet and for yet others there may be no visible indications, but… We all have our little thing!!

But most of all you’re my best friend

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Hi it’s Jack…. I have been The Owner’s constant companion for the Christmas Season. He has been in very good humour and has really enjoyed catching up with some friends he had not seen in a long, long time, so all good. He was looking at some pictures taken long before he was diagnosed with Parkinson’s Disease and boy did that bring a smile to his face. Different time, different place, but fun most definitely, they looked like they all had lots and lots of fun!!

Today however, I saw a shadow cross his face, just for a second, very quick but it scared me. A look of silent despair and anguish, that is usually covered with a grin and a change of the subject, but hidden. His irrational, yet very real fear of being seen as a burden, irrational because he knows that he is loved, real because it is real to him. Every now and then, it comes at him, … hard… but this time he cried, so I did what I do best, and I put my head in his lap looked up at him and loved him.

The trigger? A scene from a movie “Love and Other Drugs”, where Jake Gyllenhaal, speaks to the husband of a late stage Parkinson’s Disease sufferer. A 30 second insight into the life of those people who carry that unceasing load of caring for, of  loving and living with a person who has Parkinson’s Disease. This is his greatest fear, that of being a burden to family and friends. 99.99% of the time it’s not an issue, but every once in a while he is reminded. Being strong 99.99% of the time is good going, so I cut him a bit of slack on the 0.01% and told him to man up…he got the message.

One of the many things I have noticed since I have come to live with My Family, is the amount of time he spends on his own, be it resting and recuperating, or simply going to bed early because his energy levels are so low, it can be isolating. I am usually with him all the time, as well as My Family. That’s not enough, so why don’t you call just to chat, to recommend book that you have enjoyed, or music that you like. He can also be very grumpy, but I not so sure that’s a Parkinson’s thing.

PS When you are talking to him you might just let him know that I am sorry about the accident on the carpet, please don’t tell the cat, and he is… My best friend.

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Consent

Ignorance is not Bliss… It hurts

The Owner is angry today, not with me or his family, not even with himself… He is angry for someone else, a friend of his, and although I have never met her I am angry for her too!!

The Owner was diagnosed 11 years ago, so he has gotten used to the awkwardness of telling people about his diagnosis.. “I have Parkinson’s Disease.” It took him a while (like 6-7 years!!) but he got there eventually, but only with the help of family, friends and colleagues. More often than not now, when he tells people it is done with humour and sensitivity (yes I did say sensitivity!!) He knows how to explain the basics of Parkinson’s Disease and how it applies to him. Upon hearing the diagnosis the response is invariably “But you are so young, and intelligent and handsome and you can put up shelves..” Well maybe not the put up shelves bit… But their initial reaction is based upon what they see, a younger person with Parkinson’s Disease, which is generally perceived to be associated with older people.

“It’s not what happens to you, it’s how you handle  it that counts….” You will have heard this before, well it goes both ways. It’s tough enough for the person who has Parkinson’s Disease to live with the disease, never mind a person who is recently diagnosed, add-on top of that early onset… you get the picture. Or maybe you don’t, so to be clear.. It’s shit. So if you ask the question “What’s wrong with you?” be sure you can handle the answer, because if you can’t you are not helping. If the person thinks you need to know they will tell you, when and how they think best, because in this circumstance they do know best.

Coming back to the anger, when a friend of yours, diagnosed with early onset Parkinson’s Disease less than a year ago says and I quote:

“I am sick and tired of people saying Oh so and so died from Parkinson’s, can’t you just keep that to yourself !!!!!!! Please”

That makes me as angry as the owner. Ignorance is not bliss…. It hurts.

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PS. If you want to hear The Owners response let me know and I will seek his permission (There are a lot of * in the ******* response, but you get the idea!!)

Consent

Sometimes you just have to do..what you just have to do!!!

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Hi it’s Jack. People sometimes ask the Owner, what is Jack like? His response is usually “Jack is the most amazing Dog ever created in the Universe ever..!!!” Ok sorry I may be getting a bit carried away, what he actually says is “Jack does all the dog things you expect him to do and more…”

The Cat told me last week that we are moving house, my immediate thoughts… where am I going to go? They love where they live… so why are they moving? I pondered, I worried… pondered some more, and then I just asked The Cat. She smiled her enigmatic cat smile and said.. “Lots of reasons to stay, lots of reasons to go…. but sometimes you just have to do what you have to do…!!” Hmmm, great help..

Last night I figured out what she was saying. Sometimes you have to do things in life that you really don’t want to do. Things like move house, or reduce your working hours and the fear of facing and explaining those decisions can paralyze your decision making. So nothing happens, the circumstances may not get worse, but they certainly don’t get any better… Why the paralysis? Lots of different reasons, fear of failure, or fear of being seen to fail, not wanting to admit to yourself that your future may not be within your control. Whichever one it is you end up in the same place, not worse but not better.

Then sometimes you realise that you just have to do what you have to do… Face the fear of failure, ignore what you think others may think (generally you are wrong anyway!!) Most importantly face the reality of your circumstances and just do it… My family did, the house may be smaller, the garden may not be as nice…but it is ours and that’s what matters.

And I can see The Owner walking taller already.

Consent

Dignity.

Ask him how he isHi it’s Jack here… Not such a great weekend for me. I ate something on Friday, that didn’t agree with my stomach (tasted great but my stomach disagreed!!) I woke up very early on Saturday morning because I really, really needed to go outside for…well you know… eh, kind of embarrassing but I really needed to go. The next problem? 4.00 am and the rest of the pack still asleep… !! I went upstairs (I am not usually allowed upstairs), and went into their bedroom. The Cat languidly raised her head, gave me full volume Cat Stare and said “Oh go on then, if you really have to…” I gently licked the Owner’s arm and woke him. He opened his eyes, looked at me from the bed and said “It’s ok Jack, I know what it’s like.” He took me downstairs, let me outside and then waited for me to finish (which took a little while!!) When I came back in he patted me on the head, and said “Good boy Jack, now back to bed.”

Boy, was I relieved, mentally as well as the other way. He didn’t get mad, he didn’t complain, he just understood that something which might not be such a big deal for some, was a big deal for me. He understands that dignity plays a very important part in everyone’s life, and that for me, an accident on the rug would be mortally embarrassing, never mind messy on the rug!! Worst of all… I would never hear the end of it from you know who.

The Owner works from home, so I get to see him doing his job quite a bit. I love watching him work when he is on top of his game, doing what he does best and enjoying it. On a good Parkinsons day, when everything falls into place, and he’s able to work at full throttle… well, he really treasures those moments. It’s only now that the penny has dropped for me and I realise just how important his dignity is to him… to still be able to be viewed, valued and validated as a professional, to still be able to earn the respect of his colleagues, peers and clients. And for him that’s a big deal.

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Why does the medicine not make him better??

Accepting

Hi it’s Jack… Last Saturday I was on the couch with my Owner, watching the All Black’s v Scotland rugby match. One of my jobs is to guard the TV remote from all threats, including the Cat and as you can see from the picture I do it pretty well. In reality though, I just love being on the couch with him , he knows it, I know it, even the Cat knows it.

A thought struck me (happens once in a blue moon!) My Owner takes his 3 tablets, a yellow one, a white one and an orange one, 3 times a day every day… but the weird thing is he doesn’t seem to be getting better!! I have been with him for 3 years (human ones!!) and he just seems to be getting worse, not better. He freezes a lot more, he get’s tired quicker and he shakes a lot more. I can help with the freezing, I just give him a nudge on the knee, and as for the shaking? I just put my head on his lap and that usually calms him down. There is however nothing I can do about the tiredness and this really worries me, because I won’t be here for ever and what will happen when I am gone? So what is going on???!!! All this medicine, for all these people and yet they still get sick and not only that, but they get sicker?

Soooo… only because she has been with the family longer than I have, I swallowed my pride and asked the Cat “What’s going wrong with his medicine? Why doesn’t he get better?” Her response was a jaw dropper… “The medicine doesn’t make the disease go away, it just makes the symptoms go away… and for a while.” I thought she had misunderstood the question and was just about to ask her again when she fixed me with The Cat Stare and said “You heard me right first time, the medicine does not treat the disease, just the symptoms.”

My Owner want’s to dance with his daughter on her wedding day, he wants to do this so very much. The only way for this will happen is a cure for Parkinson’s and soon, because I won’t be here to look after him for ever.

So please work together; the medical community, politicians, pharmaceutical companies, patients, their families and friends… All of you working together, you can do this. How? Neurology is underfunded in most countries, so demand more from the politicians you vote for to make it a priority. Stay current with the research and most importantly, please, please continue to support the patients their families and friends.

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Ask him how he is…he won’t bite and neither will I.

Jack... A Dog's View of Family life Living With Parkinson's

Ask him how he is...

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. It’s not a secret, he doesn’t hide it, and he knows how difficult it can be for you, to ask him how he is…he won’t bite and neither will I.

I see how tough it is for the people that love him, when the day is a struggle, walking is tough and his hand is shaking. You don’t want to ask him for fear of the answer, or the tears that may come. It’s easier for me, I am a dog; I put my head on his lap and he knows that I love him.

When I first came to live with him, it scared me, I couldn’t understand why some days he was fine and…

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Acceptance and Learning to say… “I just cannot do that..this week!!”

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For all those who have asked… No!! I have still not caught the cat (her name is Moggy, and no…. I didn’t get to name her.) Thinking about that makes me wonder if I will ever catch her. I am after all 10, in Dog years which is getting on a bit (still looking good!!) so I may simply have to learn to accept, that there are some things I just cannot do anymore and may never be able to do again. The Owner whose Parkinson’s progresses, needs to face up to this 2. He needs to be honest with himself and everyone around him and learn to accept the limitations imposed and to not be afraid to say… “I just cannot do that..”

Earlier, especially when first diagnosed he used to pretend it didn’t affect him, tried to persuade himself that this was not really happening to him. Then when his body finally told him it was happening to him for real he fought it and that only made matters worse. On good days he thought he could do anything and everything he had always done. On bad days, there would be despair… he’d blame himself and anyone else close enough to be caught in the crossfire between his body and his brain. He tried to hide it from everyone including himself. A dark cloud of depression would settle over him that could not be easily dispelled.

Finally he realised that the only person feeling sorry for himself was yes indeed… himself. He could waste the rest his life with self-pity or he could participate in life… with his marriage, his family, with his friends, and with his work. He learnt to take one day at a time,  and that accepting the limitations that Parkinson’s imposes on him is absolutely not the same as giving up… it is the smart thing to do. By devoting his resources to where they were needed most, not just by him but by all of those around him he rediscovered the joy of being a father, a husband, a son, a colleague and most of all of just being himself. He still falters occasionally, but he recognises it, stop and says to himself “I cannot do that today… but maybe I can tomorrow!”

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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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