Surviving a broken brain

A couple of weeks ago I went to the Atlantic Balance and Dizziness Clinic in Halifax to have the dizziness I have been experiencing pretty much non-stop for two years now assessed by a physiotherapist. She was very thorough, the appointment was about 1.5 hours long, taking my history and running me through countless tests.

She diagnosed my problem as Persistent Postural Perceptive Dizziness (PPPD, or "3PD"). The standard treatment is a low dose SSRI for anxiety and cognitive behaviour therapy to train my brain to reframe what I experience as "not dizzy". Since I pretty much deny experiencing anxiety and am very wary of SSRIs she suggested pacing instead.

She emailed me a pacing checklist which I am supposed to use to assign points to all my daily activities and limit myself to only 10 or 15 points a day. So far I have scored 25 and 32 points daily, so obviously I have a long way to go to get it under 15 points.

The trouble with this system is that it assigns a lot of points for reading and computer use, and since I am very limited in the amount of physical activity I can do, I score lots of points in those activities. I am at a loss as to what I am supposed to do when I cannot do much else. This blog post alone is going to count for more than 5-10 points, meal preparation and "ADLs" (activities of daily living: getting dressed, brushing one's teeth, washing, grooming, etc) will account for another 5 points, and the rest of the day is toast.

I can see where such a system of pacing by points would be good for recovering from concussion, and limiting one's time on the computer or tablet or phone is probably a good idea, but I am at a loss as to what else I can do other than stare at the ceiling. Even talking to a friend racks up points at an alarming rate.

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I have been chatting on the phone with an old friend out west several times a week. The time difference (four hours) makes scheduling difficult, but so far we manage. She has Parkinson's. It affects her ability to communicate and think straight, resulting in a lot of anxiety and depression about her situation. Unlike me she can still do two hour hikes in the nearby mountains and play ping pong, although her coordination is failing so she has some difficulty with the ping pong.

Last night we were talking about cognitive and memory testing. A year ago I had my memory tested at a local clinic and she is undergoing cognitive testing at her local Parkinson's clinic. She agreed to the testing for the good of research but has been finding it frustrating. We both have memory and cognitive problems. But the tests that they do seem quite irrelevant, as if the people who are doing the testing don't really know what memory and cognitive loss really is like. The tests feel useless and beside the point.

In my own case, the memory tests started simply enough but gradually became more difficult. They required remembering words shown to you on cards in a particular order. On the final couple of tests my mind just went blank, I could not think of anything. The tester prompted me with hints and I was able to recall the words she was hinting at, but doing it without the hints was impossible. 

She gave me my final "score" and I asked what it meant. Was I normal? Average? Deficient? She hemmed and hawed and went into this whole thing about what is normal, what is average, so I knew she wasn't going to tell me.

The thing is, my memory deficits have nothing to do with words on cards, or counting backwards from 100 by sevens. They are not testing the real memory losses, just what they think memory loss should look like. Likewise for my friend, she feels very frustrated because the testing she is undergoing has hardly anything to do with what she is experiencing.

Our conversations are halting and involve long silences as we search for the words we know are there but can't speak, and we lose track of what we were talking about it in the first place. But I feel like we are on the same page so the communication difficulties are irrelevant. We laugh a lot at our shared experience of cognitive loss.

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Had a visit from the local Homecare Coordinator to see if I qualified. It's a tricky business. What I want is a little light housekeeping. What's on offer is personal care: help getting in and out of the bathtub or help getting dressed. If I need personal care they will throw in light housekeeping as well, but my income is too high to just get the light housekeeping. Also, the amount they would charge me for this is equivalent to what it would cost me to hire a housecleaner for a few hours a month, which is all I need. 

The problem is I don't know who does that sort of thing other than agencies which charge a lot more. The Homecare Coordinator said that they largely use VON for nursing and personal care, and Caregivers NS for the housekeeping. She told me the name of the local contact for Caregivers NS and it turns out I know that person, she lives down the street from me. I will call her to see if she can provide leads for housecleaners.

The visit was very helpful, and if I ever do need help getting in and out of the tub, I know who to call. She liked my woodfire and sat next to the stove because she said it was impossible to be too warm. Later she asked how I got my firewood into the house and I showed her my somewhat complicated system involving a firewood bag, wheelbarrow and an old bath towel. She marvelled at it.

"You have a system for everything!" she said.

Yup. That's what you do when you're old and live alone and want to stay that way.