Brief update

Have had some difficulties since leaving hospital, but for the time being at least have managed to overcome these and I'm doing fine now. My biggest problem right now is coping with a modified diet. Mashed everything....thats what I'm eating at the moment. My "team" have taken me off foods that don't require a lot of chewing or that are too dry.....I am also going to be meeting with the specialist to discuss having a "peg" inserted. I can only explain this how I understand it so the words I use might not be right sorry. A "peg" is a tube that is inserted into your stomach that when required is used to feed someone who for whatever reason cannot take food orally anymore. "Liquid meals" (can't remember the name of the stuff) but for those Kiwi's who have seen the smoking add on tv with the guy who has a trachy????? (cant spell it) he has a peg and shows how to use it.....
Anyway, I don't actually need to use the peg right now but my brush with pneumonia left my "breathing capacity" in a pretty bad way. After a certain point surgeons will refuse to do the operation required to insert the"peg" so I'm having to consider having the operation earlier just in case! Thats how I understand it anyway. Other then that I'm algud. The warmer weather has made a huge difference, I can get outside, even manage to do some work at a snails pace, but it makes me feel useful again. Keeping myself occupied during the day is easier now that its warmer which is just as well because TV sucks at the moment.....same ol movies on Sky movies, no more rugby to watch on Sky sport, have watched just about every old Western and Kung Fu movie that was ever made....lol. Erin reckons if she has to sit through Lonesome Dove one more time she'll walk out.....whats wrong with Lonesome Dove, its a classic?
You probably won't hear from me again until the New Year, so I want to wish you all a safe and happy Christmas.
Bill

Hospital was the pits!

I hated being in hospital. Had a really bad experience in the ED and that just put me off the whole rest of my stay there. I get pretty quiet around strangers anyway, but when you're having things shoved up your nose and down your throat without really understanding what the purpose of everything is, you get "anti everything". For a while there I was my own worst enemy in hospital. Erin reckons I was tensing up everytime the curtain opened and some new face with these (pasted on smiles, well thats what I thought anyway) popped there head through with yet another breathing machine/excercise/drug, you name it I had it. So I was really fighting all the good work they were trying to do for me, at the time I didn't see it that way tho! It wasn't until I got home and we talked to our usual team of "experts" that we understood fully why what happened.....happened!

The reality was, all of the staff at the hospital were really nice, did things really well, but I had really bad anxiety attacks when ever anyone came near me. We weren't prepared for the treatment I received in ED neither were we prepared for certain questions that were asked but as was explained to me later, when you arrive in the ED you are treated for what you "present with" and I presented with a pretty bad case of pneumonia so they had to do some quick work to get me breathing properly. Not nice, not nice at all.........

But........it brought home the need for me to not be so bloody stubborn in the future. When I'm feeling crook, don't argue with Erin about going to the doctor to get some antibiotics. That could have saved me a whole world of problems, but nah.....I knew better, I can shake it, I'm tough.....eah you find out just how tough you really are when you're on a bed with some male nurse saying RELAX Mr Gardiner, as he's shoving a tube up my nose to suction phlegm from my lungs.....and no I didn't know how to spell "phlegm" my walking dictionary of a wife told me.
Short story is......PREVENTION....DONT LET IT GET THAT FAR....GO TO THE DR, GET YOURSELF ANTIBIOTICS and DON'T BE STUBBORN.

Had a whole lot of questions slung at us from all directions, words like incubation, entubation, resucitation, how's, what if's and all that jazz....we weren't prepared for those.........educate yourselves on the meaning of those words, because believe me we were both shocked at how serious things really were. Because I hadn't had any major medical issues since my diagnosis, we had become pretty blase about the whole thing.....then POW....down I went with pneumonia and it knocked me bad.

But I'm back, a hell of a lot wiser, a hell of a lot more wary, but still positive, although I have to admit it has taken me a real long time to get back to positive again.....I've had some other issues since I've been out of hospital, but I'll save that for my next post.

If there was one good thing about my hospital stay, it was that my mum just happened to be in Tauranga for something totally different, Erin managed to contact her while she was here, so she and my Aunty Anne, and my nephew Bobby made a point of calling in to the hospital as well, that was choice. I thought to myself, come on then you nurses I dare you to come and upset me while MY MUMMY and MY AUNTY are here.....hehehehehe!

Just while I'm on the subject of family....I need to say a huge thank you to My Aunty Pipi and her husband Stewart, who offered me a glimpse of some alternative/hollistic treatments in Auckland. Took my son and I into their home for the night and took us to see her Doctor......that was great and we all really appreciate what you did for me.....we had made arrangements for another appointment but for one reason or another I haven't been able to get there again. Pipi, if you get around to reading this......THANK YOU SO MUCH!

Until next time,
Bill

Quick update:

Hi,
Bill is home and recovering well. Just needs to bide his time and concentrate on himself instead of everyone and everything else for a while.

Erin

Hi, Erin here!

Hello folks, just letting you all know that Bill is in Hospital at the moment with pneumonia. He is doing well and responding to treatment well and according to the Dr's today should be well enough to come home tonight or tomorrow. (He has been there since Monday morning). Bit of a wake up call for our kids and me, yet another curve-ball in this disease for us to learn about. Unfortunately it seems we have to learn everything the hard way, but we'll file this away under "experience gained" and baton down the hatches for whatever gets thrown our way in the future.
Will keep you up to date while he is recovering. Thanks for caring everyone.
Erin

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....

Update

Hi everyone. It has been a while but for the most part things have not changed in any major way in my world. Yesterday May 20th we had our first family conference with our "team" of professionals, Krystal our OT, Fiona our Speech therapist, Lyn our Physio just to bring everyone up to date and make sure we were all on "the same page". They are a great team of people and it is wonderful to know that they are there for us any time any place anywhere......

Received my power chair (electric Lay z Boy) today......kids are having a great time on it....lol. Have a trial wheelchair (manual) which thankfully I don't have to use too much at this stage because I am still able to walk with my frame, I tend to use the chair more in the afternoons. (I start getting just abit tired around lunch time). My wife decided to take me for a walk the other day (I should say, she pushed the chair) WRONG........ that was a steep learning curb........she stands around 5'4 and I'm 5'11 she found it difficult...really difficult getting me and the chair up & over even the slightest little bump when crossing the roads etc.....so she's decided she needs some "wheelchair driving courses" those were her words not mine......before we attempt that again. Some pretty colourful language was coming from directly behind me that day.....we got home and looked at each other and "cracked up" laughing..........our kids thought we'd gone crazy.

On a more serious note, make sure you check your chairs etc before you use them, especially when you have kids at home. The other day one of my boys was sitting on my wheelchair (he's 17) and yes he was doing wheelies in it. On these new wheel chairs they have bars at the back that you use to stop the chair up-ending when you are coming up over your doorstep for example. He turned them up the other way and when I sat on it I got outside ok, then when I came back inside I was coming up over the little lip on the door and.....CRASH.....over I went, hit my head on the deck.....just as well he was still home when that happened. This type of thing is preventable with a bit of common sense and vigilance and a little help from teenage kids.....

I am using a bi-pap machine every night and have been doing so for almost 6 months now. It has helped me sleep and is working really well for me. Krystal (OT) has ordered a powered wheelchair for me, but that will take a while. She tells me it is a lengthy process, they test it and test it until they have exactly what you specifically require, and I think thats great. I also have an electric hospital bed, again the kids loved it when it first got here, now it is literally just part of the furniture! My eating is really good, I can still eat everything and do eat everything. No issues at all there. Arms, hands and other leg are progressively getting weaker, but very very slowly.

I'm still on the sideline at the rugby every Saturday, but not running the water on OBVIOUSLY...although my mates give me a ribbing....they say they can rig my walking frame or wheelchair with a bottle carrier and want me to give them my doctors clearance because I've been "missing in action" at the working bee's etc.......They keep me grounded and sane, other than your family, you need good friends to help you through the rough patches and I have some awesome mates.

Thanks to everyone who has left messages in my guestbook. I will get back to you all once I figure out how to use it. That could take a while.

Until my next posting, take care everyone.

Bill

Worried for my Wife

Last week my wife went to hospital to have her thyroids removed. It was supposed to be a no fuss thing, you know, in and out.....what happened she ends up in Intensive Care for 2 days and scares the heck out of us all.....didn't need that on top of everything else. But she is okay now and home and back to doing everything for all of us again.

Thats all, just had to get that off my chest....oh and by the way our shower and ramps are finished.

Chainsaws and Hammers

They started work on my wetshower and ramp yesterday so all things going to plan everything should be finished by Friday. I've got to say a huge thank you to Enable New Zealand for funding these for me and for everyone else out there who requires this type of assistance.

I'm good, nothing changed since my last post. Just wanted to brag about my new shower and ramp.

Bill

Just a quick update:

I've been good.

Getting noticably weaker in the other leg and in my arms. Trying alternative treatments (giving all sorts a go). Getting a lazy-boy in soon from the MND Association (Thank You). Have been approved funding for a wet-shower and ramp and really looking forward to that shower, because getting in and out of the bath is almost impossible now without help. To top things off, I've had what I think is gout in my "GOOD" foot.

On the upside, my eating and swallowing is really good so all in all I haven't had a bad month.

Thanks for all the messages my friends, will update from time to time.

Educatiing myself!

My goal on my blog is twofold. I want to educate myself on MND/ALS and use it as a tool to help my friends and family cope with whatever lies ahead for me.

I am not the most talkative of people, I don't find it easy talking about MND to people, even to family. In truth this is because I don't want to know! I don't want to know that I'm going to have to rely on strangers for things, I don't want to know that some day I will be unable to walk without aid or not walk at all. BUT....I 've got to GET OVER IT and live life to the fullest.

(I would take the time now to explain that my wife is typing this for me, at least for now until I get familiar with the keyboard enough to type myself - she will also make what I want to say a wee bit more understandable.......written and oral language has never been my strong point).

Since I was diagnosed, my wife has been on the internet researching MND. She finds sites, she's bookmarked them all (whatever that means) and asks me if I want to read any.......to date the answer has been NO....actually its been HELL NO!

Today is the first day of my EDUCATION, I realize that I need to help myself......not sure how often I'm going to post messages, but hei aha I'm sure my wife will nudge me with the ol elbow to update this page.....

I turn 50 this year, I would have liked to be healthy and happy when I reached that milestone but I suppose one out of two isn't bad....

If you visit my page I don't want you to feel sorry for me, I think I've been doing enough of that for myself....thats over!

Kia kaha.....Be Strong that will be my moto from now on!