How was my day

You know, I gave it some thought and realised that my schedule is fraught with danger.  The appointments are actually quite close together and if the first one is late, it could throw out my whole day, bouncing around from late appointment to late appointment.  Fortunately, the day went really smoothly and again was very productive one.

I started off with a visit to the infectious disease expert, Dr Ison.  One thing about North Western is they are so thorough it is borderline obsessive compulsive.  Again I was asked to fill out some paperwork and check over the same information to check that I am really me.  One thing I find funny is that the first question on the form is about insurance.  I have to admit that the hospital and its facilities are probably the best I've ever seen, but I feel that those facilities might be out of reach without the proper insurance or finances.

After the forms a nurse showed me through to a consulting room where they took my vitals and quizzed me about why I was here to see Dr Ison, after which I was left by myself to await the good doctor.  The next people who came into the room were the pharmacy people who wanted to write down my entire list of medications that I take on a day to day basis.

They then left and once again I was left by myself until Dr Ison came in.  He was a nice man and we got straight down to business.  Dr Burt was worried about the complications my brain stimulator might have on the transplant.  Apparently implanted medical devices can harbour bacteria which could be a problem when you have no immune system.  His main concern was that I would have wires exposed through the skin and since I don't he really wasn't worried.  Personally, this for me was a huge relief.  I had been worried about the implications because if an infection did manifest itself in my stimulator, it would have a short track right to the middle of my brain.  It is still a factor for me, but at least now I am much more comfortable with it.

After then it was back to laboratory services where this time they actually had my order.  I thought seeing that I had a bunch of blood work done back home in Australia they wouldn't need that much.  I was wrong.  I think there were actually 28 tubes.  I had a great nurse and we got straight into it.  After five tubes we were still going strong.  After ten things were starting to slow down, and about the twenty mark we were really starting to struggle.

With just four tubes to go the vein dried up and alas I had to get stuck again.  At least I have two arms so it was off to the other side and the rest was a breeze.  The other great thing about it was I didn't have to wait long so I had time to go to the cafeteria for a quick bite before I finally got to go see the legend, Dr Burt.

Now I hate putting doctors up on a pedestal like that.  I believe that doctors are people too and we need to test them to make sure that they are doing their job properly.  But Dr Burt does fit the mould of legend.  He is not just practicing medicine, he is writing a whole new chapter of his own.  The work he is doing has the potential to help a lot of people in the future.  However, doctors are people too and can have bad days and make mistakes.  As a patient I believe that you have an obligation to make sure a doctor is giving you the best care available.

In Dr Burt's case I don't think there will be a problem.  He seemed extremely knowledgeable and was very personable and engaging.  Don't you just hate it when someone is that great in every way?  He got the ball rolling by telling me about his trip down under and his little sojourn down the great ocean road.  If you reading this Dr Burt, the Victorian Police department thanks you for your kind donation;)

What people said about him being fast was also true.  Don't get me wrong he was thorough, but after Paula had taken my vitals (again) he came in and did his thing and left.  I had questions to ask him, most of which we covered in the main part of the consultation but I only just got my last question in while he had one foot out the door.  I feel quite comfortable being under his care.

Given the mix up of the first day, I have to say that the hospital has got an A+ for the last two days.  Right now I have the joyful task of a 24hr urine test, which has rendered me pretty much hotel bound for the day.  I have to keep the sample refrigerated too, so it is sitting on the second shelf of my fridge next to my water bottle.  Man I hope I don't make a mistake:0

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:)

OT

The other part of my rehab was to see an occupational therapist. Again, when I started I didn't quite know what was involved, but we sat down and discussed what my objectives were and then we got down to business.

As opposed to physio which was supposed to be therapeutic and improve my functionality, my time with the OT was purely educational and focused on two aspects.

First, maximising the use of what you have by making sure you use it properly and also learning new strategies of how to use things to get more benefit from them.

The second aspect was to look for new equipment to assist in everyday living, and i have to say there is a bunch of stuff out there to help, from button hooks to cooking aids, there is an amazing amount of stuff. Even without a disability,, some of it would be really useful. In future blogs I will categorise some of the new equipment I have got.

So, what did I think of it. There is no question that the process has been beneficial, but I keep wrestling with the fact that I feel ripped off with having to go in the first place. I guess that it is always hard coming to terms with the fact that you are sick, and the road to recovery can be hard and sometimes even unattainable. Until next time, stay well:)

My first day at rehab

So I sucked up my pride, told myself that what I was doing was good for me and off I went to Epworth rehabilitation hospital in Camberwell. Now, I have never been to a rehab facility before (as a patient or other) so I did not know what to expect, but my opinion was highly favourable.

I don't know if this was simply because the staff were really nice or it was genuinely a good facility, but I can't say for sure as I have no basis of comparison, but one thing for sure is that the staff were really great.

Before I arrived I had been given an outline of who I was going to see, and my first appointment was with the physio, a delightful, warm and caring person called Tiana. For this session we took some measurements of my strength and balance, and also discussed what I wished to achieve. From here she developed a plan for me for future visits. I will elaborate more in future posts.

After the physio I met with Delia, another delightful, warm and caring person who is an occupational therapist. We talked about what made my day to day living hard and what could be done to make it easier. We wrote a list of goals I wanted to achieve and from here she also developed a plan. I will also elaborate on this further in future posts.

Overall, my first experience with rehab was positive. I understood what the process was and what it was designed to achieve. More importantly, I didn't feel like an ability impaired person who was the pity of society. Until next time, stay well:)