The Flight of the Stumble Bee - 'Alias Have a good trip'!
Eleven years ago this month I was under the shower one night when I noticed that the tips of my fingers and toes were a bit numb. The sensation (or lack of it) gradually increased over the coming months along with some weakness, so I finally went to the doctor. He sent me on to a specialist who sent me to a neurologist.
About nine months after I first saw this neurologist I had deteriorated to the point where I could no longer get about, it was extremely difficult to pass water or use my bowels and I could just manage to roll over in bed. I was sort of dead from the waist down. I couldn't taste much either. The last straw came when I would stop breathing as I drifted off to sleep. My wife rang this neurologist and said she thought I was dying but the neurologist was less than helpful and didn't really have anything to suggest. Fortunately some friends got another specialist to see me and he got me into Westmead next day.
From then on things happened. At the initial examination a neurologist and the registrar were talking to each other. I heard MS mentioned and then MND and so forth. I said 'What is MND?' They said 'Motor Neurone Disease'. I felt a cold shiver go down my spine - as much as I could feel anything. In the next few days I had those nasty nerve conduction tests, a second lumbar puncture, and lots of students donging, scratching and asking questions. I was a well-tapped resource.
As a result of the test they decided to put me on Prednisone, Imuran and 5 sessions of plasmapheresis and see what happened. I responded and three and a half weeks later, though somewhat weak and shaky on my legs I walked unaided from hospital. Two weeks later I was back, not as bad as the first time but I responded again to plasmapheresis. From then on it has been regular plasmapheresis, every ten days at first, then easing back to every month or so and this has gone on for ten years. Likewise it seems I am stuck with about 25mg of Prednisone every second day. I was on Imuran for eight years but I got really ill last year and my lymphocyte count got so low I was taken off it. My treatment program is to keep my blood paraprotein level low enough so as not to cause me too many problems. So my diagnosis seems to fit the CIDP category. I gather that one of my enzymes or antibodies has undergone some sort of mutation and like all mutations of body proteins it is now less specific in what it does. Unfortunately the treatments available up to now are also fairly blunt instruments.Early in the piece the neurologist I am now under said 'Whatever you plan to do, do it in the next ten years'. Well the ten years are up but I haven't run out of plans (or years I hope).
How has it been for me?
I've known some depression, but no worse than before, that's just me. I probably need it. In time the clouds usually roll away and the sun comes out again.
I never put back all the muscle I lost initially or got back all my former strength. But I recovered a lot and no longer look like Ghandi with anorexia. When I was really bad my hospital file said 'a thin, wasted man'. My hands and feet are often numb, I can't write very well (so I taught myself to type) and as the title implies I have learned how to stumble. I had no choice.
We have a property up north and I love working in the bush. My flight plan is:
- Look where you are walking and if you can't see, then feel each step before you take the other foot off the ground (such as in rocky ground covered with bracken).
- A hiking stick or chipping hoe can be a handy prop.
- Never walk backwards.
- If you are carrying a chain saw have one like mine which somehow knows to stop when it bites the dust along with its owner.
- Be aware that stumbling is a distinct possibility.
- When the need hits you do it like a professional and minimise risk of injury.
What has kept me going these last 10 years?
The staff at Westmead; a thoughtful wife who looks after me; the love and support of children, friends and work colleagues (though I retired five years ago, I still work part-time); as much physical work and exercise as I can manage (you need it if you are on Prednisone); knowing when to take a rest; knowing that there are plenty of people worse off than I and my faith in God.
The last mentioned is not some vague hope but a walk day by day. I truly believe and trust in him and his word. My Christian beliefs affect every part of my life.
May God bless you in this fallen and imperfect world.
Jim Wilson, Kurrajong NSW