In my frustration to fight my condition, and to document my anguish, I wrote a poem. I sent it to my neurologist with concerns about side effects of Baclofen and the pain I still had. But what can you tell a patient with Primary Progressive? Nothing but 'hang in'. That's why I'm frustrated. But I will continue to write.

Don't know what it's like
To wake up to extreme, pulsating leg pain
Minutes after standing,
Bending for relief,
Groaning to stem the razor sharp stings
In your thighs and legs.
Hold on to the counter!
Brace yourself!
It's like muscles somersaulting
While burning sensations under your skin
shoot through every nerve ending.
Why isn't the muscle relaxant working?
I silently pray while standing,
Waiting for the pain to subside.

My leg, stiffened.
Walking forward is difficult.
My foot drags clumsily.
I can't pick up my leg and move it ahead.
I stop suddenly and rest to proceed again.
Walking forward is difficult.
If I swing out my useless leg,
I can move faster.
It just won't bend on its own.
I'm tired.
Walking forward is difficult.

Laying down
A sharp pain through my right thigh
Jerks my leg up just as I'm about to doze.
My leg feels cold, hard.
I try to move over; but
My body doesn't budge.
Bending over
My trunk is stone-like, dead weight.
I rub my thigh for warmth
But that doesn’t work.
Eventually my legs relax
After spasms or
Until I move again.

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