THE ODDS (Debbie Does ALS)



What is Spasticity?

Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and may interfere with movement, speech, and manner of walking. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. It may occur in association with spinal cord injury, multiple sclerosis, cerebral palsy, damage to the brain because of lack of oxygen, brain trauma, severe head injury, and metabolic diseases such as adrenoleukodystrophy, amyotrophic lateral sclerosis (Lou Gehrig's disease), and phenylketonuria. Symptoms may include hypertonicity (increased muscle tone), clonus (a series of rapid muscle contractions), exaggerated deep tendon reflexes, muscle spasms, scissoring (involuntary crossing of the legs), and fixed joints. The degree of spasticity varies from mild muscle stiffness to severe, painful, and uncontrollable muscle spasms. Spasticity can interfere with rehabilitation in patients with certain disorders, and often interferes with daily activities.

When I first heard the term "spasticity," I thought its meaning was similar to spasm. I've since learned the correct synonym is "stiffening," and when used to describe a shoulder can be called "frozen."

Today's educational moment is brought to you by my very own stiffening shoulder. I'm sure I've mentioned in earlier posts that the range of motion in my right shoulder is decreasing. Little things like lifting my arm to turn on the car radio, or reaching in to get something out of the refrigerator, or taking a dish out of the microwave are becoming very, very difficult. I see Mike twice a week and he works on trying to loosen my shoulder and increase my range of motion, using massage and whole arm movements. Sometimes, early in the session, these activities are incredibly painful. I grit my teeth and use breathing techniques to work through the initial pain. By the end of the session, I feel okay.

Mike is concerned about how much range I've lost. He stresses the importance of my doing my "homework." I do it, but it hurts like hell. Let me describe for you what I do; you do it, too, so you can appreciate what I must go through.

In a standing position, place the back of your right hand against the small of your back. Make sure you are standing straight. How does that feel? Probably not bad at all. Well, I can't do it unless I'm bent over. Anyway, now gently squeeze your shoulders back. How does that feel? I used to like how that felt. I don't anymore because it hurts too much. Finally, slide your hand just slightly up toward the middle of your back. Well? Can you guess how I feel when I do that? I'll have you know it doesn't hurt at all -- because I can't move my hand that far. Okay, exercise over.

I find it interesting to note the change, considering I was able to do this not very long ago. Spasticity is part of the disease; I knew on one level it would happen but I am amazed on another level that it did.

The worst part is the slow, creeping loss of ability. It doesn't happen overnight -- it happens gradually, and one day you realize that you are changed.

Several PALS use baclofen, either in pill form or via a pump, to help with spasticity. During my next clinic (in March) I will mention it to Dr. Bayat. As an aside, let me tell you I've read of another ALS patient who, after having the baclofen pump installed, actually experienced improvement. You never know.

On another note, Cecilia told me they are studying genetic diseases in her science class, and that one of the diseases listed was ALS. I reminded her that only 5-10% of all ALS cases are familial; the remainder are sporadic.

Time to do my homework. Have a super weekend.


Last of the fall

Much better today. I can tell it's already improving because my back itches. I can't reach it to scratch, so I am slowly going mad.

As well, my thoughts today were not consumed with the possible negative effects. After all, it is what it is and each day must be dealt with as it is presented. Worrying about what might be is just a big fat waste of time. I apologize for yesterday's gloom.

I received the summary and the talking points for the February 3 visit to Capitol Hill. The e-mail distribution list included me and three others -- none of whom are identifiable by their e-mail addresses. We are meeting at 8 AM at the Renaissance Hotel near Metro Center. From there, we all go to the Hill together. I'm interested to see who else makes up our group, and I'm also interested to see which members of Congress we visit. I won't get a schedule until Monday, February 2.

Not a bad day, all in all. I expect tomorrow will be fabulous.


After the fall

I am in my room, my feet are up, and I'm drinking a nice cold Corona light. This is the best I've felt all day.

I didn't sleep well last night, every time I turned I felt the pull of the bandages and it hurt. When I woke up, I was sore but not as much as I thought I would be. The immediate impact of the fall I felt in my left shoulder. My left arm is my strong arm now, but when I opened the office door, the car door, or tried to lift or move anything, I realized I had banged my arm pretty badly.

Worse yet, I couldn't stop thinking about what Ellen had said at the last support group meeting about how traumatic to an ALS patient a fall is. She said that falling often is so traumatic it adversely affects progression. So, whether my fall was an ALS fall or just a regular fall, it was a fall. No matter how hard I tried today, these thoughts kept running through my head. It scares me to think I might have done something that will make me even worse.

I must, I will push this stuff out of my head.

I managed to shower tonight, sans bandages. Since I'm not in freak out mode like last night, the scratch doesn't look as terrible. It ain't pretty, and I've got some bruises already forming, but it's less deep than I thought it was. There's also a bruise on my hip and my shoulder. I am a ravishing beauty!

I suspect I will be a bit more sore tomorrow; the second day after a marathon is usually the most painful. And I know my left side will be less functional for a day or so. I also know this will improve because, fall trauma notwithstanding, my left arm is still strong.

Now I must watch as the Terps spiral downward again, then to bed. Sweet dreams.



I fell tonight. I don't think it was a true ALS fall, but it sure shook me up.

The stupid cat had jumped up on top of the birdcage. Actually, I was the stupid one because I left the door open, giving the cat access to the birdcage. Anyway, I was hurrying toward the cage and somehow managed to fall sideways. My back caught one of dresser drawer handles as I made my way down -- I have a big ugly scratch on my back, and my sweater is torn. I have another scratch on my left shoulder.

Since I can't reach back there, and Cecilia doesn't like to touch people -- even her mother -- I had to wake my neighbor and ask her if she could help me. Bless her heart, she came right over.

There will be one big, ugly bruise in a few days. I anticipate being very very sore and stiff tomorrow morning.

That will teach me to leave the door open.


A lesson to learn

Not a long post--but had to share this. So very moving.



Okay. This isn't a pity party, just writing stuff down.

I have been sad today. I don't think anyone knew it, I didn't want anyone to know it, but I was. I laughed and joked and did all the regular things, but inside ran all those thoughts -- you know the ones.

My right arm gets so tired. It's so hard to move it very much; when I do, it hurts. By this time of day there's a soreness that runs from fingers to shoulder. And my dumb left hand, though stronger than the right, continues to decline. At work today I was less able to do certain things. As I said before, slow progression doesn't mean no progression. No one sees it, but I feel it.

I've been asked to go to Capitol Hill in early February, along with representatives from the national chapter of the ALS Association. I'm to be one of the "faces of ALS" as we meet with members of Congress to ask that they remember the 30,000 PALS as they plan their funding for research and healthcare. If given the opportunity, I'll say I'm there representing the ALS patients who can no longer walk or talk. I hope I acquit myself well -- I'd very much like to participate in the full-blown lobbying effort in May.

Anyway. I'm tired, my arm hurts, and it's time for bed. Maybe when I wake up it will be better.


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I added the race video to the sidebar. What a day that was.

And what a day today was. Barack Obama was inaugurated today, our 44th president, the first African American president in our country's history. He took his oath on the Lincoln bible, not used since 1861.

I was moved like I haven't been ever before. The new First Lady looked stunning, the children were adorable.

There was an excitement and joy evident in the tens of thousands of people who braved the cold to be in DC.

We in the ALS community are hopeful that our new president will loosen some of the restrictions on stem cell research. I want so much for a cure to be discovered while I am still alive, while I am still able to live.

I don't hope to ever run another marathon--hanging on while we wait for a cure is marathon enough.

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