From the Lab Rat’s Desk June 29,2011

I was told I had probably MS in the 1990′s, a horrible disease, but lots of research being done, and people living productive lives with it. That changed as symptoms changed and progressed steadily and more physicians and specialists were consulted which changed the diagnosis to Shy-Drager Syndrome in 1998 and was then given 2-6 years. Now in 2011 clearly dying is going to take me a while longer.  I believe attitude has a lot to do with survival as has the fact that both of us were given the diagnosis long before we were elderly (I was 45).  I think it is unhealthy for a doctor to give out figures on how long it will take to die, it makes clock watchers out of us, anxious clock watchers.  It also makes anxious clock watchers out of those who know us.  I am constantly faced with surprise that I am still alive.  I think we should find doctors who are interested in giving us the longest possible time to live with the most quality of life, treating it more like diabetes and less like a terminal cancer.

Once a doctor has put you down on paper as terminal everyone treats you very differently.  It all becomes about putting things in order for the family and little about adjusting you life and living with the disease.  I grew very tired of being told what was facing me – the diapers, drooling, the burdens placed on family and no answers about how to deal with my symptoms, just the usual “no cure, no treatment”.  I had been poked and prodded for nearly two decades to find out what was wrong with me and was tired of so much medical care doing me no good whatsoever.  Then an epiphany when a friend reminded me that I could just say no and direct what I wanted done and what I did not want done.  It gave me back what dying had taken from me, a sense of power over my own life.  That was the point at which life again became about living and not dying, that and the prospect of becoming a grandmother.

I studied which diseases had similar or same symptoms and how those were dealt with.  I tackled low blood pressure, which was killing my peripheral nerves, then temperature which was totally uncontrolled, and sleep or rather the lack thereof. I’ve no idea what has kept me going for the ten years since then, probably all of it.  There have been setbacks and my life is more limited year by year but in small enough increments it is hardly noticeable.

There is however, still that sword of Damocles hanging over my head and on bad days (like the past week with a respiratory infection) it is hard to go to sleep fearing no waking up.  Would I lose less had I never been told this was “terminal”?  Could he not have said lives of persons with SDS may have shorter lifespans so live carefully and don’t cheat?  Then maybe I would not
fear every virus, every bad day?

I think it is bad enough to have constant losses such as not being able to drive or work, losing friends because you cannot keep up with their lifestyles without that dark cloud and the ticking of clocks, the reaper grinning at me from the corner of the room at night.  The bell may not be un-rung.

The truth is that only God knows the day and hour of our death, and doctors have no business playing God, their job is to stop suffering and to do no harm.  I think these arbitrary prognoses do harm. Life span in the Western world average around 80 years, so those diagnosed in their seventies would have no more than a ten year expectancy whether they had PSP or SDS or
nothing at all. A decade ago it was the opinion that PSP was a disease primarily of the elderly so making a pronouncement of ten years or less in the case of PSP or SDS would be spot on most of the time.  When later on diagnoses were being made in much younger persons we were also given less than ten years, and statistics of those already passed on proved it was 2-6 years.  We had reason to believe them, there were statistics backing it up.  

More and more the last few years we see persons living much longer.  The disease did not change, the people being diagnosed were younger and the statistics outdated.  It does not mean PSP or SDS is less cruel a disease or we are managing it better, it only means there are younger people having PSP and SDS (or MSA-A).  

Might we live even longer if we had never been penned down as being “terminal”, something which precludes rigorous attempts to treat us with therapists and symptomatic relief.  A little more emphasis on the quality of life and not only the donations for a cure so time far into the future.  Perhaps they could term it a progressive disease and leave it at that, progressions can be highly variable, but it gives the patient a sense of empowerment, as with diabetes.

In the past few years I have attended funerals of my peers who died before me, including one of my physicians, none had a “terminal” disease.  My ex nearly died a couple of months ago from an aneurysm and haemorrhage.  None of them had this cloud hanging over them, and I outlived them.  So what does this prognosis achieve but to rob me of a degree of comfort in daily life a
feeling of “all is well”, because I cannot ever quite get to that any more no matter how I try to push it back it is always there, for me and also my family and friends.

I really hope that medical schools will come to the same conclusion, and soon, that prognosis does harm to the patient, therefore it should not be done to them.

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