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
Thursday, December 4, 2008
Thursday, October 23, 2008
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
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
Thursday, October 2, 2008
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
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
Wednesday, October 1, 2008
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
Will keep you up to date while he is recovering. Thanks for caring everyone.
Erin
Thursday, September 11, 2008
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!
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!
Sunday, August 17, 2008
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.
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.
Sunday, August 10, 2008
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.
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.
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