Even the smallest equipment is important

It can’t all be big events and videos!Today I show you perhaps the smallest equipment I use. Adaptive cutlery. The first three are obvious, but the last two travel everywhere with me and are attached to cutlery when I eat out.

Why? It’s not that I can’t grasp smaller, usual cutlery. It’s that the tighter grip makes my hands fatigued, which then travels to the rest of me. Using regular cutlery sometimes means I can’t feed myself by the end of the meal. Using this cutlery means I can. Simples.

Ian also cuts up my meat for me. Ahhhhh. Again, takes too much energy from me! 

 

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Everyone else is walking!

Today is the biggest walk day across the country!

I was invited to our neighbour’s walk – South Okanagan Chapter, in Penticton – to speak at the start in my role as an MS Ambassador. The Ambassador program gives chapters a ready list of volunteers who have had some extra training to be able to speak at events and so on for the MS Society.

We also share staff with the South Okanagan Chapter, so it was great to be able to give another big thanks for all the work that Sherry, Sarah and Natalie does. We have a photo with Sherry. We also have a photo with Sarah…Ian only wanted her to be with Lacey! Natalie seemed to escape our attentions!!!

   
 

It follows you everywhere

Today Ian and I were invited out to lunch. MS wasn’t invited but it came too.

Going to visit friends takes very good friends. First they have to know your schedule. Lunch? Sure! How does 11am work for you! And how do you get into the house? Well, of course, you bring your ramps!

Having a good support system is crucial. Friends that know “you” – the real you. Friends that are adaptable, so that you know you can cancel on plans at the last minute and they understand. Friends that turn up at your house, knowing you will be in your pjs, there’ll be dog hair everywhere, and that’s fine. Thank you to all those who give us support. 

  
 

Wheels and more wheels, and a couple of sticks

I started with a stick or two and a walker. Within 6 months I added the manual chair, but couldn’t move it by myself. I used my feet on the floor in the house. Then I ordered the big chair, but it became clear that I wouldn’t fit it into the bathroom, so I got the little granny electric one too!
Now I use the big one all the time and Ian is currently putting a wider door on the bathroom!

I think I could make my own mobility product catalogue! I did write a leaflet for our local MS Clinic to use, to help people to make decisions over what they need.

Some people have an emotional or psychological reaction to becoming a wheelchair user. I just had joy, because I could get around with it, and I couldn’t without it. It’s just a tool! I don’t get upset about wearing glasses; the wheelchair is no different!

  

Transport

And today – video!!! With music!!!
As we saw yesterday, I have all kinds of nifty equipment to help me. This has to be the biggest, though!

When you use a wheelchair, you realise that not only do you have to get around in the chair, you have to find ways of getting the chair to places too.

We did manage with our car for quite a while, with me transferring to the front seat and Ian using ramps to put the chair in the back of it. It was hard work for both of us. Transferring was becoming more and more difficult for me, and Ian having to manoeuvre a chair that weighs 350lb into the car was always on the dodgy side.

Then some planets aligned and we were able to get this van. Going out is now safe and comfortable for both of us!

Avert your eyes…

Let it not be said that I’m not prepared to put it all out there for MS Awareness!!!
I thought I’d start showing you some of the extra equipment I use to help me.

We have a hot tub. Ian goes in it pretty much every night, cold, rain or shine. For me to go in it, it requires more than the planets to be aligned! I have to be feeling physically strong enough. It has to be not long after I get up as all the getting changed, getting into the hoist and so on is exhausting by itself. It also has to be the right temperature outside. Too hot and the fatigue brought about by heat sets in even more quickly and I can’t enjoy being in the hot tub, too cold and being suspended in the air for the world to see means I freeze!!!

Another important thing is it’s not really a hot tub. It’s a warm tub. We keep the temperature less than body temperature, again so that my core temperature doesn’t rise and cause the heat related fatigue.

After all that, you can see why last night was the first time this year I went in the hot tub! And I probably only made it 3 or 4 times last year!

Ian built the gallows, as we call it, to get me into the tub last year. He built a frame and then added a track for a lift to get me in. Amazing!

  

The neurological workout – I mean examination…

I mentioned my trip to my GP last week and how she was doing my neurological exam “wrong” or at least not as thoroughly as I was used to. I thought I would devote a post just to the exam, and yesterday two of my friends shared this great link that explains it!
This link spends a lot of time explaining techniques to examine nerves from the brain. M neurological exam goes into equal depth on the rest of my body.

This is Ian’s favourite test. While I’m lying on my back, my neuro holds the joint of my big toe really firmly so that I can’t pick up any clues from feeling his hand move. Then he moves my big toe and asks me if he lifts it up or down, a lot or a little. Unless it’s a really big movement I can’t feel it and I guess. Ian loves it because it seems I’m often wrong.

Another one is while lying on my back, lift my right leg, put the right heel on the left knee (so your right knee is in the air, not on the bed) and run the heel up and down my shin as fast as I can. (You’re all trying it now, aren’t you?). Let’s just say lifting my leg if often as far as I get, and the rest? Not pretty!

And put your finger on your nose, now put your finger on my finger?!? I guess I would fail the drunk test!

I actually enjoy doing it, because it gives me a sense of how I am doing, as I will remember what I could do the previous time. Often I have to ask the person giving the test to slow down or to let me try it again, because it takes time for me to translate the most basic command into an action.

I have had the test done by many different professionals. I know that those who do it thoroughly and slowly, and take the time to listen to the cues I give them, get lots of great data about how I performed in that snapshot but also the underlying condition. Those who don’t take the time, get results that they find difficult to interpret!

The whole exam is like work out for me, which in itself is an issue, as I don’t perform as well the more tired I get. I find it fun but also intriguing just how much clinical information can be obtained from something that can be so subjective.

http://multiplesclerosis.net/living-with-ms/the-neurological-exam-explained/