Strange oddities in my right hand -- weakness, lack of coordination, stiffness, all non-responsive to physical therapy -- were the first signs of ALS. They remain my major symptoms, and are getting worse week by week.
Of course, compared with someone in advanced stages of ALS, I am still doing very well. Compared with a lot of people with a lot of afflictions, I am doing well. Compared with how I was just a few months ago, however, I'm pretty piss-poor lousy. And frustrated. And scared about what is to come.
I mean, if I am so frustrated and helpless-feeling now just because I need help with the pepper grinder or tiny buttons, because I have to choose carefully from a restaurant menu to order something that I can get from the plate to my mouth without looking/feeling like a dork, because I keep getting my hair cut shorter and shorter 'cause I can no longer style it... well, what am I going to do when things really get bad? Is this the correct attitude of one who runs until tackled?
Correct, schmorect.
If I am going to be true to my purpose in writing this blog, I don't want to run my words through the filter of "should" or "want to," but just discuss, as truthfully as I can, my progression, responses and feelings.
So... I feel piss-poor lousy and frustrated.
I can't button my blouse. I can't button my jeans. I can't cut my own steak. I can't open a jar. I can't hook my watch. Hooking my bra drives me crazy. I type with my left hand (and sometimes my right forefinger). I comb my hair with my left hand. I try to put on makeup with my left hand. I try to paint with my left hand.
With my right hand, I can grip a steering wheel or a gearshift. I can carry my purse or shopping bag by the handle. I can still shake hands without that disgusting dead fish effect. I can still write, but my four-year-old granddaughter has better, far more legible penmanship.
The most bothersome aspect is that I just have to think so damned much, I have to plan the simplest things in advance: Put the keys in your left pocket only. Button your shirt, front and cuffs, before putting it on like a pullover. Are you going to pick that thing up with the left hand or right? Once you pick it up, can you carry it? Once you carry it, can you put it down?
Once you start complaining, can you wind it down?
Yes....
Friday, October 29, 2010
Monday, October 25, 2010
Diagnosis
I first noticed some weakness in my right hand around the first of the year. As time progressed, the weakness became more pronounced, and my fingers began to curl up into a loose claw. There was no pain, no numbness, just gradually increasing weakness and lack of coordination. What in the world was happening?
With that question I began nine months of blood tests, X-rays, MRIs, specialists, physical therapy, diagnoses, mis-diagnoses, research and guesswork.
Because I already have osteoarthritis, we first checked for a pinched nerve in my neck. Bone spurs, nerve pressure, yeah, I got 'em -- but nothing, said the neurosurgeon, that could be causing my symptoms. Next, a neurologist diagnosed a small isolated stroke, even though no signs of stroke were evident on the MRIs ("Very small stroke, very small..."). PT was prescribed, which, aside from introducing me to the sublime comfort of a paraffin bath, did nothing.
My symptoms kept getting worse.
Perhaps it was some form of autoimmune disease. (What form? I dunno.) Tests showed not.
Perhaps it was something bizarre like Dupuytren's contracture (no) or something common like carpal tunnel syndrome (no).
While all these tests, treatments and referrals were going on, I was doing some research of my own. The more things we eliminated, and the more my symptoms kept increasing (add fasciculations, or frequent, localized little muscle blips -- like mini-shocks), the more I was led toward one possibility.
So that when, eventually, I went to another neurologist, then a third, then went through EMG testing and nerve conduction studies, I sort of knew what was coming. I expected the diagnosis of ALS -- and I got it.
That doesn't mean hearing the official diagnosis was easy. It doesn't even mean I was prepared, not really, not fully. It means, more than anything, that what I most feared came true.
But silver linings, however tarnished, exist: I am lucky to have been referred for final testing & diagnosis to Dr. Jon Katz at the Forbes Norris MDA/ALS research Center in San Francisco. Dr. Katz is empathetic, positive, thorough and attentive. The center works on a "team" approach with highly individualized treatment. The 2 1/2-hr drive is well worth it.
And the greatest silver lining of all is the one that shines every day of my life: the support, understanding and love of my husband, Scott. We'll be afraid together, and face changes together, and be strong together - and run until tackled.
With that question I began nine months of blood tests, X-rays, MRIs, specialists, physical therapy, diagnoses, mis-diagnoses, research and guesswork.
Because I already have osteoarthritis, we first checked for a pinched nerve in my neck. Bone spurs, nerve pressure, yeah, I got 'em -- but nothing, said the neurosurgeon, that could be causing my symptoms. Next, a neurologist diagnosed a small isolated stroke, even though no signs of stroke were evident on the MRIs ("Very small stroke, very small..."). PT was prescribed, which, aside from introducing me to the sublime comfort of a paraffin bath, did nothing.
My symptoms kept getting worse.
Perhaps it was some form of autoimmune disease. (What form? I dunno.) Tests showed not.
Perhaps it was something bizarre like Dupuytren's contracture (no) or something common like carpal tunnel syndrome (no).
While all these tests, treatments and referrals were going on, I was doing some research of my own. The more things we eliminated, and the more my symptoms kept increasing (add fasciculations, or frequent, localized little muscle blips -- like mini-shocks), the more I was led toward one possibility.
So that when, eventually, I went to another neurologist, then a third, then went through EMG testing and nerve conduction studies, I sort of knew what was coming. I expected the diagnosis of ALS -- and I got it.
That doesn't mean hearing the official diagnosis was easy. It doesn't even mean I was prepared, not really, not fully. It means, more than anything, that what I most feared came true.
But silver linings, however tarnished, exist: I am lucky to have been referred for final testing & diagnosis to Dr. Jon Katz at the Forbes Norris MDA/ALS research Center in San Francisco. Dr. Katz is empathetic, positive, thorough and attentive. The center works on a "team" approach with highly individualized treatment. The 2 1/2-hr drive is well worth it.
And the greatest silver lining of all is the one that shines every day of my life: the support, understanding and love of my husband, Scott. We'll be afraid together, and face changes together, and be strong together - and run until tackled.
Sunday, October 24, 2010
The Beginning...
Just last month, I was officially diagnosed with ALS, or Amyotrophic Lateral Sclerosis, or Lou Gherig's disease. Have I absorbed what that truly means? Yes. No. Do I feel different? Completely. Not at all. Do I know what is in store? Intellectually, pretty much. Emotionally, no way.
ALS is a motor neuron disease that effects voluntary motion nerves, which in turn causes weakness, wasting and eventual loss of function in voluntary muscles. It is progressive, deteriorative, incurable and fatal. Given those cheerful basics, it is highly variable, progressing quickly in some people, slowly in others, localized in some, body-wide in others. Average lifespan is two to five years after diagnosis -- but that is an average.
More detailed medical and scientific information can be found on ALS websites (check http://www.alsa.org/; http://www.lougehrig.com/; or http://www.als-mda.org/disease/als.html for more details than I can begin to offer). This blog is not meant to be that sort of informational clearinghouse For one thing, I am no expert. For another, I am not neutral enough to present unbiased, unemotional lists of facts. I can only present my own view of what it's like to be right smack dab in the middle of all this.
I can't say I am a "patient," because so far my physical life is maintaining at a fairly normal level. I can't say I am a "victim" of ALS because so far I refuse to be a victim of anything. The title of this blog really says it: I will keep running until I am tackled. Then I will run some more. And some more.
And I can't say that this blog is a primer on how to cope with ALS. My responses, physical and emotional, to the disease are and will be my own. Sharing them here may, just may, help others with ALS. It will, I know, help me.
More coming soon....
ALS is a motor neuron disease that effects voluntary motion nerves, which in turn causes weakness, wasting and eventual loss of function in voluntary muscles. It is progressive, deteriorative, incurable and fatal. Given those cheerful basics, it is highly variable, progressing quickly in some people, slowly in others, localized in some, body-wide in others. Average lifespan is two to five years after diagnosis -- but that is an average.
More detailed medical and scientific information can be found on ALS websites (check http://www.alsa.org/; http://www.lougehrig.com/; or http://www.als-mda.org/disease/als.html for more details than I can begin to offer). This blog is not meant to be that sort of informational clearinghouse For one thing, I am no expert. For another, I am not neutral enough to present unbiased, unemotional lists of facts. I can only present my own view of what it's like to be right smack dab in the middle of all this.
I can't say I am a "patient," because so far my physical life is maintaining at a fairly normal level. I can't say I am a "victim" of ALS because so far I refuse to be a victim of anything. The title of this blog really says it: I will keep running until I am tackled. Then I will run some more. And some more.
And I can't say that this blog is a primer on how to cope with ALS. My responses, physical and emotional, to the disease are and will be my own. Sharing them here may, just may, help others with ALS. It will, I know, help me.
More coming soon....
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