Wednesday, September 21, 2011

I had a title but now I've forgotten it!

Having read copious amounts of information on MS I've found that most people seem to bargain. People who are on their feet for a lot of the day say "I don't mind cognitive changes but please don't let my legs get weak". Authors and teachers often say "I can cope with being in a wheelchair but please don't give me cognitive changes."  In my experience no one listens to your bargaining!

I certainly don't have the memory I used to have. I can't remember a simple list of numbers read on one website long enough to input them in another (OK, I'll be honest - I can't remember the solution to puzzles read in walk throughs long enough to use them in games.) This doesn't impact on my work so that's fine. What does is the 'tip of my tongue' syndrome where the word you need just won't come and then you lose track of where you were going with the conversation. Case in point: lecturing to a bunch of baby doctors. I was talking about Maori birthing practices pre-European and just completely lost the word I needed. I fudged around it but was thrown for the rest of the lecture concerned it would happen again. So that part of cognitive changes impacts on my work. When I sit down to write I pretty much have to read everything I've written previously to remind me where I'm going.  My iPhone is my constant companion and every task I have to do goes into immediately I decide it needs doing.  I used to joke that it was my brain but now it pretty much is.

The physical changes have certainly been a kick in the pants. After 100 metres I become a member of The Ministry of Silly Walks. My left leg seems to want to climb a mountain while the right is tromping through mud. Throw in the attractive side lurch and it is worthy of a grant for development.  Using a forearm or Canadian (why?) crutch is helpful, clinging to a shopping trolley while assisting with number 3 son's paper delivery helps, using a horrible walking stick also helps. Fortunately in my work it is usually less than 100 metres from my car to a client's front door so they are not subjected to John Cleese in drag.

The real kicker is in order for me to practice as a midwife I need to be able to practice in all areas. There is no way I can safely attend a delivery where I might be there for 12 hours because i'd be useless for making safe clinical judgements. The rules are made by the Midwifery Council of NZ so I thought I'd check out their website to see what allowances they make for their disabled members. The only thing my search turned up to dob in a disabled midwife if you think she's not able to work properly/safely!  I'm going to have a powwow with the College of Midwives who is loosely like a union as well as having other roles but I think I'm on the outers.

The two big-ups I've had are the kneeling bus bent down for me and if there's a queue in the loos I never get glares when I jump the queue and lurch into the disabled loo. You've gotta look for the positives!

I flew down to and back from Wellington yesterday and I feel like I've run a marathon today! Coped fine during the expedition but paid for it today! But at least I have had the opportunity in the past to do a few marathons so I have credibility when I say it!

Still waiting to hear back on the DMDs (Disease modifying drugs!) - can't believe I'm keen to start injecting stuff into myself! (I would never have made a good drug addict!). Apparently interferons slow down the progression of cognitive changes so I'd be so up for them for that reason alone.

Still can't remember what my brilliant title was! I can remember when I was erudite and quick, seems like only yesterday.

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