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!