Choices

I was reading on Facebook recently about a person that was considering the same procedure (HSCT) I did.  However, where as I was fully supported in this decision by my close family and friends, this person in question was not supported.

Now it wouldn't take a rocket scientist to figure out which side of the fence I sit on.  Family support with something like this is critical.  If you do not have it, it simply adds another stress to what is already a remarkably stressful time.  I believe that a negative reaction is own from ignorance.

Don't get me wrong, I do believe that family members do want the best for their loved ones, but they hear words like "stem cell transplant", "experimental" or "medical trial" and they instantly think the worst.  Now there is a risk with the procedure.  But, normally there is a risk with anything.  Driving a car, catching a plane, people have even died going to the toilet.  But that is really irrelevant and not the point I am trying to make.

Or is it?  You can't not go to the toilet, it is something that has to be done.  Now this choice, the one I made has one more variable and it is only a little bit more complicated than to have or not to have it.  The choice is to risk a dangerous procedure in an attempt to reverse the devastating effects of a crippling disease or attempt to live with the disease and the risks of all the conventional treatments that go with it.

Wow, when you look at it like that the scales look a lot more balanced.  I think that some people look at it like a game of chicken where the worst that can happen is you end up dead and the best result is to carry on as normal.  In this case there is risk associated with both choices, but one at the very least carries the benefit of potentially reversing the progress of your disease.

So next time you know someone that you believe is making a needless and risky decision.  Take a second to think about it and do a little research.  Your opinion cannot be ignored if it is educated and informed.  And maybe, you might just think a little differently about it.  Until next time, stay well:)

Stuff that works wrap up

Well, I'm sure you probably have a couple of questions about the segment "Stuff that Works". So I will attempt to preempt your questions and answer them.

First, what other things are available for people with disabilities?

There are lots. Too many to list in my blog. The ones I did list are the ones that I have purchased for me that have helped me. I understand that everyone is different, and depending on their individual disability and personal preferences they may have they may find some of the items I have listed unbeneficial. Alternatively items that I have no use for and have not listed may be of great use to someone else.

Where can I purchase these and other items?

This is the problem. Finding these items can be very difficult. For me, I never even knew some of these items existed until I went to rehab and consulted with an occupational therapist. From there I got referred to the independent living centre (ILC) where they had a comprehensive list of nearly everything I would need. The only problem, I couldn't buy any of it. Instead I got a list of where to go to get it, which was about five different places.

So off I went, where the stores didn't have everything in stock. Now, post brain surgery I couldn't drive, so I had to rely on others to take me. Finally I got everything, but it wasn't easy, and what makes it harder is the fact that the people that need these products are not the most mobile in the first place.

Anyway, if you live in Victoria, may I suggest starting at the ILC (they were very helpful) and following the trail from there. If you don't live in Victoria, probably the best thing to do is start with a google search or see an occupational therapist.

What is my big idea?

As I have said, getting these goods is a nightmare. So what if you could browse all these products at one place on line, order them and have them delivered? Make the process simple. My idea is to set up a business that will do that. I would love your feed back and questions, so don't hold back.

Anyway, it is a long time since I last gave you an update on where I am at and I do have some news to share, so until then, stay well:)

Stuff that works Part 4

All the "stuff" that I have shown you so far has been categorised by where it lives in the house. These items are more miscellaneous and OK, I am showing off a little too, but they work all the same.

The first things I will show you are my walking sticks. The one on the left folds up, which makes it ideal for travelling. The one on the right (my preferred one) has a squash grip wrapped around the handle which I got from sports shop. It also has a clip just below the handle so it can be hung on a table or bench.

Next is a key turner. I would imagine I am not the only one who finds keys fiddly. The key turner holds the key in a large handle making it easier to use.

OK, now I'm showing off a bit. My iPad and iPhone. These to me are much easier than the old button phone or a diary for me, and also allows me to keep up with technology.

The last item is one of my favorites. I never would have thought of it by myself and it is great. It is called a button hook. You thread it through the button hole and over the button, then pull the button through the whole. With numb, shaky fingers, almost the only way to do up my buttons was to ask my wife to do it. Now, once again, my whole wardrobe is available to me independently.

In my next blog, I will tell you how to go about finding these sorts of things for yourself and also introduce you to an exciting idea of mine! Until then, stay well:)

Stuff that works Part 3

In the kitchen there are so many aids it's not funny, so I have put the ones in here that I use, and hopefully it will give you an idea of what is available.

First, I have my knife blocks. They are very similar, but have two important differences. The left block with wooden handles is weighted. The heavy knives help to stabilise my tremor. The right block has grippy handles which make other tasks easier.

Below is a bread knife with a curved handle which makes it easier to cut right to the bottom. Manufacturers sell knives with lots of different shaped handles to make it easier for the user.

My next picture is of my block. It has rubber feet to keep it steady, and a vice like attachment to hold the food in place.

Lastly, this rather bad picture is of an egg breaker. I love eggs, and one of the most annoying things is not being able to break an egg. Until recently if I were to prepare my own eggs, scrambled was the only option. This device allows me to reassess my options.

These are but a few of the many kitchen aids that are out there. Next time I will finish my stuff that works segment with more miscellaneous items. Until then, stay well:)

Stuff that works Part 2

I hope that my last post gave you a few ideas. This post I will show you a few things that I got to assist me with computer work etc... Hope this helps too.

Below is my MacBook. I love it, and it is safe to say I am an Apple person. But what I want to show you is the stand. It raises the screen up to a much friendlier height which allows you to keep good posture. There is also a tray for putting papers you are using on.

Also in the picture is my first choice pen. It is big, heavy and grippy. There are lots of different styles of pen, but this one is the best for me.

In this next picture is my keyboard. It is adjustable for slope and gap in the middle so you can have it in the most comfortable position. The more comfortable the position of the keyboard, the easier it is to control my tremor. There are many different types of keyboard too, so it is good to get something that is suitable for you.
One thing that is hard about working on most tables when you have a tremor is that there is no where to anchor your elbows. This support that clips on to the edge of the table solves that problem. The blue pads also help raise the my wrists to make it easier too.
Finally, my mouse. This one is on kind of rotated 90 degrees to make it more ergonomic to hold, and also control my tremor. There are many different types of mouse as well, so you can find one that is suitable for you.

Well, I hope that this helps you look in the right direction for all your computing needs. Next time I will look at kitchen aids. Until then, stay well:)

Stuff that works.

To all who read, yes I am still alive, and I have been OK. Just over Christmas I have been extremely busy of both a personal and business nature. But I am back on board now and hope to bring you a steady stream of useful posts.

As I stated before Christmas, I would share with you some of the stuff that I have purchased t5hat has made my life considerably easier. Please note that what you see here are things that I find useful, they might not be suitable for you or others. When I have finished I will also direct people to sites and tell people how to go about getting things that are suited to them.

I will start with things that I use in the bathroom.

This foot scrub is great. It has suction cups on the floor that hold it in place, then you simply put some liquid soap on it and put your foot in. The soft bristles get right between the toes and you don't have to bend down.

This is a really strong hand rail that simply suctions on the wall. It is really strong and ideal for balance.

I have two shower shelves here. The one on the left my wife uses, and I use the on on the right with deep sides so I don't knock anything over with my tremor. Very handy.

Lastly, the good old electric toothbrush. Easier than a conventional toothbrush

I hope that this gives you all some ideas of things you can find for assisting with easy living. Next time I will show you what I have for my computer setup. Until then, stay well:)

Which Hospital?

Public or private, big or small, I have been to a lot of hospitals. Excluding hospitals I have attended emergency at or merely consulted a doctor at, I have been treated at no less than twelve different hospitals. I have listed them at the bottom of this post and next time I will rate them for you outlining all their pros and cons.

Now if you have the unfortunate need for a hospital, you might think you have no choice on where you go, but you do. Admittedly, if you have found a surgeon you like and are happy with it is hard to go against his choice, but most doctors treat patients at a number of hospitals and normally you will be able to choose any of them. Of course, there might be other factors involved, like the hospital having the right set up and equipment for your procedure.

When looking for a hospital there are a number of factors you should think of, but I will cover these off next time. Until then stay well:)

Oh yeah, my list of hospitals:-

1. Warners Bay Private Hospital, Newcastle NSW.
2. Sydney Adventist Hospital, Sydney NSW.
3. Royal North Shore Private Hospital, Sydney NSW.
4. St Vincent's Hospital, Sydney NSW.
5. St Vincent's Public Hospital, Melbourne VIC.
6. Warringal Private Hospital, Melbourne VIC.
7. Cotham Private Hospital, Melbourne VIC.
8. Austin Hospital, Melbourne VIC.
9. Austin Repat Hospital, Melbourne VIC.
10. Epworth Eastern Hospital, Melbourne VIC.
11. Cabrini Hospital, Melbourne VIC.
12. St Vincent's Private Hospital, Melbourne VIC.