Tuesday, 5 November 2013

PSP is No Game

PSP.

When I first Googled it, a lot of references to video games popped up. An unhappy coincidence to be certain because PSP is most definitely not a game.

Progressive Supranuclear Palsy.

A disease so new and so often misdiagnosed that even the word Supranuclear is challenged by my spellcheck. And yet....so very real and so very frightening.

When my father-in-law first started exhibiting symptoms of "something", we really weren't terribly concerned. He was a relatively young man of sixty-seven, and in spite of his pack to a pack and half a day smoking habit, he was in fairly good shape. Stunning, but true. He was carrying around a few extra pounds, but really....who isn't? He was a busy and still practicing attorney and he went to work every day. When he started to complain of fatigue and eye-strain, he just chalked it up to age.

But new glasses and less work didn't resolve the problems. The exhaustion was incapacitating and the eye movements more laboured. And then....the falls started. At first, they were just a few stumbles. A trip over a curb or a misstep into an elevator. But, he knew that something wasn't right. A trip to his doctor led to a consultation with a neurologist who determined that he must have Parkinson's Disease. All of the symptoms that he was exhibiting perfectly mirrored Parkinson's. But, he didn't have any tremors. Not to worry, said the neurologist. Not all Parkinson's patients present with tremors. He was given the accepted course of pharmaceutical treatment for the condition.

But, the drugs weren't working. There was no relief, no change in his condition, and in fact we noticed an increase in muscle stiffness and of some loss of basic cognitive function. The Husband had asked him to sign some checks, and he simply couldn't. Not because of an inability to write, but because he couldn't remember how. A second neurologist was visited and confirmed the diagnosis of Parkinson's. And then another....and another.

And the falls continued.

With regularity.

And the fender benders.

With regularity.

And then one day, he tumbled in the middle of a busy Toronto intersection at the height of the day. An ambulance was called and he was rushed to hospital. A wonderful geriatrician looked into his eyes and immediately knew the problem. It's always in the eyes. PSP patients' eyes don't track. There is weakness in the eye movements especially in a downward direction. That and some of the muscle weakness explained the constant falls. PSP is often misdiagnosed because doctors simply don't know to look at the eyes.

Orphan Disease. 

PSP is a neurodegenerative brain disease with no known cause, treatment or cure. A progressive condition that will rob patients of the the ability to move, eat, track movement, and eventually speak and swallow. A whole host of horrors. And we had already lost so much time to misdiagnosis.

Catastrophic illness affects so many. The patient to be sure, but everybody else who loves and cares about that person. There is so much to do, so much to think about, so little time to grieve.

He is in a care facility now, having lost all ambulatory function. We are so fortunate to have such loving and committed care workers with him. He barely speaks now. Each one-word sentence so labour intensive it often puts him to sleep. But, he is all there....inside. He isn't an Alzheimer's case. He has his mind. He understands everything and his memories are mostly intact. I have often wondered which is worse; trapped in a body without a mind or trapped in a mind without a body. Conclusion? They both suck. My father-in-law is the Tin Man, only without the benefit of an oilcan.

And so we carry on. But it is always there. As we go about the mundane tasks of our daily lives, it is always there...just beneath the surface....waiting for the next shoe to drop.

When a loved one suffers from cancer or heart disease the explanations are uncomplicated. Everybody understands.When a loved one suffers from an "orphan disease" the explanations becoming exhausting. What is clear to all of us as we struggle with this misery, is that PSP, in spite of what Google might think, is no game.

For more information about PSP and other degenerative neuromuscular disorders, please check out http://psp.org

9 comments:

  1. I am so sorry to hear of what you are all going through. Thank you for sharing what must be so difficult to deal with. Hopefully spreading the word will result in more targeted diagnosis. My wish for all of you is to be well.
    Linda Marvin

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    1. Thank you Linda. I appreciate your comments and I will pass them on to The Husband.

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  2. This brought tears to my eyes. What a horrible disease - to be so aware of each loss of physical ability until you cannot move at all. Alzheimer's is a horrible disease, but I think I would rather become unaware than to be so fully aware and trapped in your body. This is very sad. I am so sorry.

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    1. Thank you Robin. Your words are kind and appreciated.

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  3. That brought tears to my eyes too. Hearbreaking. I'm so sorry for you all.

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  4. That brought tears to my eyes, too. Heartbreaking. I'm so sorry for you all.

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  5. I'm at a loss for words, but my heart is with you both. Sadly, I understand all too well. I'm sorry that you are going through this. xo

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    1. My heart is with you Lindi. ❤️

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