Everything is kapai!

Kia ora ano

I turned 50 last Sunday, 7th September which also just happens to be "Fathers Day". My family and I had discussed for some time leading up to "my big day" what I wanted to do. Finally decided to have a bbq breakfast at home, which was the easiest for me.....just a quiet one....YEAH RIGHT...

Got up that morning around 7.30ish and on my doorstep was one of my oldest mates with a whole rump steak and a 18pk of cans in his hands. 1/2 hour later 3 brothers who were all raised in the "house next door" to mine and who I consider my brothers too showed up and they all had the same idea as the first mate who arrived. Then came another 2 mates, by the time 10am rolled around things were getting pretty noisy.....I have to admit that this time with my mates was really quite special for me, before everyone else arrived you know......we hadn't all been together at the same place at once for almost 2 years.

Then everyone else started arriving, my neighbours (who just happen to be my cousins) and my wifes girlfriends to mention just a few. Needless to say, a few bottles were consumed, a few sausages were bbq'd and I had a bloody good time. I thought I was doing ok until I drove my wheelchair into the fence (lol) that must have looked pretty stupid. Have to admit I was never very good in a car either after I had had a few drinks.......not that I ever did anything stupid like DRIVE under the influence aye........mmmmmm.

There was my wife again working her butt off getting everything ready. She had been on at our sons for the past 3 weeks, don't forget it's your dads birthday on fathers day, I need you all here to help put the marquee up and do the cooking etc etc etc.......the only one who had an excuse for the day was Timoti he was playing rep rugby in Hamilton. Yes mum, we know mum, where else would we be mum................So they put the frame for the marquee up on Saturday which was good, and then we didn't see the lil rats until Sunday afternoon, Erin had to rely on our neighbour (cousins husband) and their son to put the cover over the marquee and they even cooked the bbq. Never mind , we got through ok and I had a good time.

As far as my disease goes, had a slight mishap a few weeks back on my powered wheelchair was coming down from my garage which is at the top of a slight incline to the house. My weak leg got caught under the chair and I slouched forward onto the control stick and couldn't get myself off it needless to say I had a graze or 2 but nothing worth worrying about now, it's actually quite funny thinking about it even if it hurt at the time.
I am feeling weaker but am not really sure if it's because now that I have the power chair, I am not using my walker anywhere near as much, nor am I using the manual wheelchair. I think this may be half the trouble, I'm getting lazy. I should be using the other aids more to keep my strength up....trouble is, I get really tired quick when I use them at least on the power chair I last a bit longer "strength wise" so I'm not so tired at the end of the day....I don't know, Im damned if I do & damned if I don't......BUT IM STILL POSITIVE......
Catch up again soon!

First Support Group Session;

On Friday Erin and I attended the first Support Group session held in our area for 2 years.. There we met other MND sufferers and their caregivers.
I was a bit nervous, actually I was really nervous. Didn't really know if I was ready to see people who might be more advanced then I am in the disease. As it turns out everyone who attended were all around the same as me and if I'm being honest I think I was really thankful about that. I know that sounds a bit harsh but the other "newbies" at the session all said the same thing as well and were really easy to talk to. One of the long time members of the group said to the newbies, you can ask us anything you like no matter how silly it might sound, you can say anything you like no matter how silly it might sound. "We will laugh with you, NEVER at you"......that was pretty cool.
Erin was really pleased to meet other caregivers too, so all in all I think it did us both some good.
Met a woman who was diagnosed almost 14 years ago and is still doing really really well, that gives me hope. Met a man who was diagnosed only 3 months ago and his son who gave up his job in England to come home and look after his dad, how awesome is he.
The lady who was diagnosed 14 years ago is a Librarian, she brought a whole lot of books written by people who have MND. Anyone who knows me knows that "I don't read much" lol.....Only the newspaper.....sports section but in her selection was a book written by a man who lived at Hairini, he wrote the book using something called a light writer and also using only his big toe to operate the keyboard. He lost his battle with MND while he was writing it but his wife completed it for him and had it published. I brought that book home with me and I am going to read it.
That's about all for now, still not feeling 100% but I'm not sure what 100% is anymore.

Ooh, before I forget last night Erin went to our Rugby Club Senior Prize Giving, she came home and said guess what, all 3 of my boys (I mean OUR boys) won prizes last night. Pakura won "Most Improved Player" for the Colts (u/21s) team, Patrick won the "Hingatu Ngawhare Trophy" in the Colts (u/21s) and Timoti won "Most Outstanding Player", for the Premiers....
And our nephew Rueben won Player of the year in the Senior Reserves.
Wish I could have been there to see that for myself after all my moaning about the kids, we must be doing something right aye....I'm one very proud dad today.

Message to my whanau

Just a shout out to my family who have visited my blog and left me a message. Erin showed me how to reply to you all but thinking up something different to say to you all in separate emails is just too much like hard work aye.
Peter Boy! I'm algud cuz just can't get up to any of that mischief stuff you and me used to get up too cuz!!!!!!Don't you worry about Bill Boy I'm tough cuz, luv to Kim and the kids.
Theresa, here's me thinking I got a admirer "calling me my darling" lol, Erin was cracking up at me coz I was blowing about this sheila "Theresa" calling me darling. She said to me, did you see who the message was from "you egg"? Ea...stink.....luv u my cuz.
My nieces and nephews, I'm proud of you all, what more can I say.
My sisters in Ozzy.....Stop bawling! Caroline give mum and Aunty Linda a slap from your uncle Bill if they start gettin all gooey......

There are still things I'm not ready to know yet about this "thing" I have. But I know that you are all here for me if I need you, I can't ask for more than that.

Hey!

It is wet and cold here today. More often than not lately I've been more "down" than "up" not sure why, there hasn't been any change for the worse in my condition. Maybe I've got too much time on my hands to think about things or maybe its just "the weather" I don't know???
The kids are coming and going (as they do), Erin is off to work every day, gets home asks me how my day went and I say, "OK" (as I do). She tells me I couldn't lie to save myself......actually she's always told me that. I'm just not sure how to describe how I feel......not sick, not in pain, just feeling bluhhhhhh......you know what I mean.....how do you describe bluhhhhhhh?????
I am looking forward to the weekend tho, gonna go watch our 3 oldest boys playing rugby and spend the day down at the club, maybe thats whats wrong with me haven't been able to get out to watch them for the past couple of weeks because of the weather and they've been playing out of town. I don't like going too far from home really because I'm a bit wary about access to toilets and things like that at other clubs. At our club there is easy access for me to the toilet and plenty of mates to help if I need them to.

Erin had an uneventful journey up to Auckland on Tuesday to pick her mum up off the plane. She took Patrick and Gary with her for a ride, left Pakura with me and our baby who wanted to go to her holiday programme. Anyway, she leaves some money with me to send Pakura for fish and chips for our dinner (mums plane gets to Auckland at 3.15pm), she gets home around 6.30pmish, house is in a mess, I'm cooking some dinner for me and my baby......to her credit she asks Pakura very nicely, why didn't you go and pick some fish n chips up for tea? He DUMBLY replies, coz I want to go to the movies with my mates and I can't find my cashflow card......so I was gonna use this money.......because I didn't know if you'd be back before I go to the pictures OH BOY, WRONG PAKURA REALLY WRONG.....

One look at his mothers face put an end to any ideas he had about going to the movies, he even had the grace to look guilty, then I unceremoniously get kicked out of the kitchen Pakura gets shoved out the door to "pick up some fish n chips" and while he's gone the house gets a quick vacuum, dishes done, clothes folded 1/2 hour later we're sittin down with our fish n chips......
Bloody kid wouldn't listen to me, his mother didn't even talk to him and he knew what he had to do. Hate it when that happens.....lol.
Actually I've been laughing while I've been telling that story, I feel better already.
Thanks for listening.
Bill

Feeling Better!

Hi all,


I am feeling a lot better than I was for my last post. Although I am still not where I was before I caught that cold. Again, the freezing cold is a huge issue for me. I guess because of my inactivity I can't keep warm, at the moment I spend my days rapped in a blanket sitting on my chair with the sky remote in hand but it is school holidays so I can't get near that darn remote at the moment.
Motivating myself to do more than just sit here is just a wee bit difficult right now, but I realize that I've got to keep myself moving.
Received my new electric wheelchair on Monday.....woooohoooo thats a blast. Certainly got me going places I haven't been in a while, like my garage for example......what a mess that is. Even went for a trial run down the road, certainly makes life alot easier. Only problem is, that without the proper vehicle I can only use it around home, but thats ok, the manual wheelchair and/or the walking frame will be ok for when we go out and about and I can always call a mobility taxi if I really need to go anywhere.
Went for a drive to Auckland (about 2hrs - 2 half hrs one way) on Monday to drop my mother in-law off at the airport. She flew over to Aussie to visit my brother in-law and his family. Sitting in the car for that long was a bit uncomfortable I have to say, but went to keep my wife company, she drove back from Auckland. I think she will have to take one of the boys with her when she goes to pick her mum up off the plane next week, don't think I can face another trip just now.
Have decided for the time being to eat what I want, when I want. You know how it is, they tell you to change your diet for the better, and all that healthy living stuff, but truth is while it may work for other people, I''m a "meat and spuds" kinda guy, always have been and while I don't begrudge other people doing what they think is best for themselves and their body, putting food I like to eat in my stomach is really important to me right now....there may come a day in the not too distant future when I'll be fed through a peg and until then mates, I have decided to eat what I want to eat.
Woke up yesterday with one heck of a sore throat, thought it might be the onset of yet another bout of the flu. But there was no cough or runny nose. Erin made a hot lemon drink to see if that would ease it and sure enough it did. That was a relief, but this morning she gets up and asks me how my throat is today, it was ok, so she's starting to take notes about when things happen no matter how trivial they may seem, but we've learnt that there is nothing trivial about "small" things anymore.
Anyway, I'm ok for now, family is muddling on through and roll on school........love my kids but dang these school holidays are hard....don't know how my wife did it all these years while I went to work and she was at home.

A week to forget!

This has been the week from hell!


They told me, to avoid contact with people with colds, but thats pretty difficult when you have kids "c'mon you gotta get real" I'm thinking to myself!


Now I know what they were talking about. Erin and I sat our kids down ages ago and explained to them why they needed to "stay away" from me if they got a cold and/or flu and all those good things.....At the time of that conversation neither of us fully understood really what it would mean if I got a cold. Now we know.

Because my stomach muscles are pretty non-existent now I can't cough! I'm going through the motions but I can't cough everything I need to up/out if you know what I mean. Its the worst feeling to be all "clogged up". I can't keep any food down, and thats making things worse. As a result I'm getting very little sleep.....bi-pap is working overtime but seems to ease things a little when I'm in bed. I've been feeling like crap basically.

Erin has tried everything to make me more comfortable, keeping warm is an issue right now, I can't seem to stay warm. Hot water bottles where I ache help heaps, but lack of real food is making me weak so I'm on my wheelchair most of the day at the moment.

Not liking this feeling one little bit. Only thing thats keeping me going is that I'm feeling better today than I was yesterday, and better yesterday than the day before so something is improving, just need to stay focused on things day by day.

Will check in once I'm feeling better. Hopefully that will be sooner rather than later.

Bill

Melt Down

Frustration - grrrrrrr
My family has learnt to recognise the signs - keep out of dads way he's in a foul mood.
Our whole household has been so tense that something had to blow, and it did on Saturday and nobody saw it coming.

A typical Saturday in our house has been the same for as long as I can remember during rugby season.
Get up, have breakfast, clean up the house get little ones ready for Sat morning sports.
Straight from kids rugby to my rugby, day starts around 9am and finishes when we get home from rugby usually around 6.30-7pm. (After I finished playing rugby I became a member of the Senior team management). You know the deal, all the kids playing at different venues, you trying to be super heroes and being at all the games. Difference is, now the kids argue back.....and my wife is the only one who drives to get them all where they need to be when they need to be there. (I haven't driven for almost 6 months now, 17 year old has a restricted license but his mother has banned him from driving for a while because he's racked up a whole lot of speeding fines) So, when she had an argument with one of our boys (he's 15) and shut herself in the room and refused to take anybody anywhere nobody knew what to do. To the rescue comes oldest son (who is flatting), has a few choice words to say to 15 and 17 year old brothers tells them to wait in his car and then in to his mother to make sure she's ok....5 minutes and another choice few words later both 15 year old and 17 year old trudge in to their mother to apologize and then heads hanging down, back to their big brothers car and he delivered them both to catch their bus to their game before he caught his own bus to his game. Last year we would have been on the buses with them, this year to make things easier for me Erin has been driving me and the 2 little kids to the games where ever they are.

Its amazing how little ones sense things aye....our 10 year old and 7 year old were perfectly anjelic during this whole episode our baby asked her mother, how come we aren't going to rugby today mum and mum just said because I'm tired and she said well shall we just stay home and go get us some videos mum and so we stayed home on Saturday.......

Saturday night oldest son arrives home gets off bus comes and picks his baby brother and sister up and takes them to stay with him for the night. 15 and 17 year old ring when their bus gets in to ask if they can stay at mates place, good grief we're at home by ourselves. Now what?

Well, the big pot Erin cooked for everyones tea was put in the fridge for Sunday and her and I had toasted sandwhiches while we watched the test match......but I had to sit through the bloody netball before that, in all the years my wife played netball I think I only ever went to watch her play once, I'll tell you this though, I wasn't going to complain, well, not out loud anyway!

The moral to this story is, everyone was so busy looking after me, that we forgot about the person who looks after me AND EVERYONE ELSE. She had just had enough. Now she's feeling guilty about her little "melt down" she calls it. I think it was a wake up call for all of us. Things have got alot better in our house since then. We know it probably won't last long but we all took a long hard look at ourselves, the 15 and 17 year olds realize they need to help their mother out more, I realized that I'm not the only one that gets tired and frustrated and Erin has relaxed her ban on the use of the car by our 17 year old so that he can at least drive himself and/or his brother to work and rugby trainings rather than her taking them and picking them up.

I said in my very first post that I wasn't much for talking, but I need to tell my wife how much we all appreciate everything she does. Luv u hun.....

PS: Also want to thank our big son he's such a great help to us all and he's such a good kid he doesn't have to do what he does, and we don't expect him to but he just does what he does....