Get with the program

*sigh*
Another trip to physio yesterday morning...another appointment where my chart was not available to review test results.

So the therapist decided that she would discuss strategies with me for what she derived from her testing...which is a left beating nystagmus. I listened for a bit, and took note of her suggestions. Then I asked if a left beating nystagmus would cause my "rocking sensations"..."Well, no, not really", was her response. She then got defensive, saying that the other tests should not diminish her findings.

So I dug deep into my "salesperson bag of tricks"...looked her in the eye, constructed a look of sympathy on my face..."Oh, of course not. I'm sure that you observed a left beating nystagmus back in March. However, that isn't why I was advised to come here. There is some concern that I could fall on my butt at any time...even though I don't feel that way."

"Oh...so Dr Garber sent you here to work on your balance! Let me get some tools..."

And that is how my exercise program was born!

As for her other strategies, I will try those too. In hindsight, they seem to make perfect sense...too simple, really. Essentially, vision and cognition will overpower sensation. In a moment of "wobbles"...STOP, THINK, and STARE. Stop what I'm doing, tell myself that things are stable, and focus on a stationary spot.

I am in charge.

Emily

schedule for the week

Jason is on vacation this week! Oh what the week will bring...

Actually, we already know what the week will bring. Yesterday afternoon, we sat down and wrote a schedule for the next 9 days. The schedule has three purposes: to make Jason feel like he accomplished something on his vacation; to compel Jason to complete the mudding/sanding/painting of the new walls in the basement; and finally, to best optimize our time together by scheduling down time for me.

The first piece of advice that I received when I was diagnosed, was to never schedule back to back BIG days/events. While we have tried to adhere to this style of living (haha, like I have much of a life right now), we are truly taking it to heart this time. We will see if mandatory rest periods (not to mention simply having a schedule) influence my bad day to good day ratio.

One thing that we were not able to schedule for this week was my first injection. I called Elsie on Friday to let her know that I have my needles, but I don't have the parcel that I was supposed to get from her. So now it looks as if my first injection will be late this week or early the following week. I really would have loved to have Jason not under the burden of a 4 am get up for the beginning of this.

C'est la vie,

Emily

moving along

I dropped off my new prescription this morning. This means that I will likely start it late next week. I can't begin until I book an appoinment with a local nurse to come and discuss injection tricks of the trade.

Also, I thought that I would mention that I am being a good patient, and I have been doing my exercises.

1. tossing a tennis ball from hand to hand
2. sit ups
3. staring at a spot on the wall, and turning my head while leaving my eyes on the spot
4. standing with my legs crosssed, my arms crossed, and closing my eyes

Time to stare at the spot...

Emily