Amateur Hour.

In honor of Brainhell and others with ALS.

I've read several books since being diagnosed, none of which told me what I wanted to know: what were the writers experiencing? When did they feel their first leg cramp? How did it feel when they dropped their spoon into their soup?

This first post will be too long and probably tedious and scattered. A friend suggested I journal my experience so I cut and pasted from old emails. I hope it's readable. Not going to go through and correct any of the misspellings, so I apologize in advance to purists.



Noticed in Jan or Feb 07 I had arthritic looking nodes on my forefingers. In March I made an appt w/ my internist but couldn't see her until May, which was fine b/c it was JUST arthritis. Around the same time I noticed I was having difficulty opening water bottles and my right hand felt "thick", I noticed some twitching in my arm from shoulder to fingertip and, before this, I found it fatiguing to dry and straighten my youngest daughter's hair (very thick, lonnnnnnng process). Finally saw the internist May 30 and she confirmed early osteoarthritis and thought I might have carpal, so she sent me to a rheumatologist (SP?) to rule out rheumatoid arthritis. Saw him in June/July. It wasn't RA, so the next stop was an orthopedic doc, who thought I might have Tinels (ulnar neuropathy), originating from the elbow. Had me undergo the worst test in the world--an upper extremity EMG. The EMG dr (a neurologist) suggested it wasn't Tinels but perhaps brachial plexopathy (from the shoulder area?) and advised I had some damage in both arms. Back to the orthopedic dr (late Sept? Early Oct?) who said the emg didn't indicate anything electrical was causing my problem.

By now I'd started dropping things, couldn't open a binder clip, had a hard time with pens, etc. Also noticed my hand looked different, like it had lost weight. I chalked it up to arthritis making my joints looking horribly deformed. Anyway, the ortho dr referred me to another neurologist who conducted a very comprehensive test and then ordered an MRI. At this point I asked what he was looking for and he, reluctantly, offered the possibility of ALS. Felt like I'd been punched in the stomach but I cheerily replied that I'd better get all my marathoning and travel in as soon as possible.

Off to the MRI, which was NORMAL. Then more blood work was ordered to rule out Lyme Disease and other things--all were ruled out. I knew they would be, because I'm not ignorant and I'd done the research and my doctor (out of GW with a Hopkins pedigree) isn't reckless and wouldn't have said ALS if he didn't have some good reason to say ALS. I hate those letters, by the way. ANOTHER PAINFUL UPPER AND LOWER EXTREMITY EMG was scheduled for early December.

My arm twitches like crazy, my fingers spasm all the time, and I'm weaker. And now my left arm is starting to twitch. I give myself a pity party every couple of days but otherwise marvel in the surreality of all this. 

I'm worried about who will take care of C. I'm worried about money. I am sad to think there's so much I haven't done.

But 

I am working and driving and running and did two marathons within eight days of each other back in November. Right now I have to work hard to hit the keyboard with my right fingers and I need help opening a cereal box, my gas cap, bottled water, and clipping my nails. That last about did me in--I was depressed for hours afterward. I can't hold a five pound weight very well or a full glass, but manage okay with the left. Pens and forks are also difficult. I dont' do well with a brush or hairdryer for very long, so my hair is getting shorter with each visit to the salon.

I'm going to take the kids--all three girls--on a bit of a grand tour this summer. C wants to see the castles in Germany and we will go to the Vatican, maybe Barcelona, and of course a quick stop in my favorite city. It's my intention to build some exciting and happy memories with the girls while I am still ambulatory.

Got the final confirmation of my dx on Dec 27th. Thought I was prepared but, even though I had already accepted the inevitable, it still caused me an emotional relapse. Up and down that old roller coaster still, but may have leveled off a bit. Some days are awful. I don't understand why I can go to bed completely fine and wake up in tears.

The fasciculations are MADDENING. Sometimes I think I've become inured to them but then they pick up intensity and then the left side joins in and I feel like I'm the character William Hurt played in Altered States...all that's left is for me to devolve into a feral creature!

My sweet dear C has suggested we try to time my death with that of our aging 18+ year old cat. Gotta love an Aspie. :)

Several random notes I jotted down:

12/11
Have been down for two days. When i heard the NPR blurb about the wedding consignment shop and realized I might not see the girls in a wedding dress it made me very sad. Later in the day talked to Tom and bawled when he asked if I had religion. I had to choke out that I question the existence of a God who would take me away from my C when she needs me. Anyway, the gloom is lifting a little but it's been a tough couple of days.

Jan 7
Dx confirmed on 12/27. up and down. must snap out of it or my face will freeze with a sad look.

Jan 24
I had an epiphany today. I've decided to think like this: instead of my running being taken away from me, I am giving it away, a bit at a time. I like that. Gives me the illusion of having some control over this.

I am officially no longer a marathon runner. I am a half marathon runner until the end of March and then I become a we'll see what races or distances I feel like doing runner.

And today, Feb 4.  Life is good, gonna face this with an upturned face and set a good example.