Saturday, October 27, 2007

Emotional Lability AKA Pseudobulbar Affect

EMOTIONAL LABILITY aka “pseudobulbar affect” is actually a neurological symptom of ALS. It is uncontrollable fits of crying or laughing. Sometimes the laughing comes after the crying or vice-versa. Or sometimes there is just laughing, or just crying. It can be embarrassing, because sometimes it is inappropriate. But once it starts, it is so difficult to stop. It can be scary too, because it is something you have no control over.

When I get on a crying jag, I sob really loudly and then my breathing suffers. Prolonged laughing is healthier, but it affects my breathing if I can’t stop.

There is medicine, which helps. Mine is a liquid compound of quinidine and dextromethorphan, which is found in most over-the-counter cough medicines. My neurologist says that nobody knows why or how it works. This statement puzzles me because I don’t know how they discover a drug if they don’t know why or how it works. Oh well; however they found it, I’m glad it’s around.

Michael Zaslow, the soap-opera actor who died a few years ago of ALS describes this symptom at length in his book “Not That Man Anymore”. He talks of long and embarrassing episodes of crying, and of laughing in inappropriate situations. It had to be so puzzling to everybody around him to see a man blubbering for no apparent reason, especially since he was out in public so much. There is a very good discussion of emotional lability in Wikipedia at http://en.wikipedia.org/wiki/Emotional_lability
“While not as profoundly disabling as the physical symptoms of these diseases, labile affect can have a significant impact on individuals' social functioning and their relationships with others. In a disease such as Motor Neuron Disease, the majority of patients are cognitively normal; however, the appearance of uncontrollable emotions is commonly associated with learning disabilities. This may lead to severe embarrassment and avoidance of social interactions for the patient, which in turn has an impact on their coping mechanisms and their careers.”

Anyway, just another thing we people with ALS deal with.

Friday, October 19, 2007

flashback 2003

So I have not touched a biology textbook since 9th grade, when I was 13 – I was in the honors track so I took Biology a year ahead, and I skipped a year in elementary school so I was a year young for my grade. That was 39 years ago. And I am on the research committee of Ride for Life, responsible, with about 10 others, to decide where the research funds are going. And, toward that end, Norma is forwarding a bunch of articles on cells, neurons, and viruses. I have learned that there is a subset of viruses called “prions”, which are similar to proteins. Some of the researchers think that prions might be a culprit that causes ALS.

Let’s flash back to 2003. Evidently, it was in the summer of 2003 that I noticed that something was very wrong, even though I had been treated for asthma a good ten years before, had a clumsy accident in 1993 and broke a toe, had another stupid accident in 1998 that resulted in a nasty sprained ankle, and started wearing a mouth guard in 1991 for jaw stiffness which the dentist figured was due to clenching and grinding my teeth at night. But in the spring/summer of 2003, strange things happened way too often. It didn’t take as long as some others to diagnose me. In the end, I diagnosed myself. You see, doctors don’t like to give this diagnosis because they like to be able to offer hope—a pill, a medicine, a surgery, a change of diet or lifestyle, chemotherapy, physical therapy, any therapy, radiation, or any other treatment.

I made it very simple for Dr. Rubin at Weill=Cornell. I had done my research on the internet, so I said “I have ALS”, and he responded with “Let’s hope not. Call me in two weeks when we get the results of the blood tests. Hopefully, something will come back positive, and we’ll find out you have something else.” ‘

“I hope we don’t find out I have something worse”, I said
“There is nothing worse than ALS”, he answered.

In the next two weeks, I tortured myself. I read everything about ALS. I read how there was no cure and no effective treatment. In the 150 years since ALS first identified in France, and in the 60 years since Yankee Lou Gehrig was diagnosed, they have only come out with one drug – rilutek—and that is supposed to have minimal effect.

I was in my school’s computer lab two weeks later. It was January Regents Exam week, so we weren’t teaching; we were proctoring exams, and I was on one of those long breaks between proctoring assignments. I called Dr. Rubin and got the bad news over the phone., despite the fact that doctor’s are advised, I learned later, to never give bad news like this any way other than face-to-face. My blood tests came back negative – negative for autoimmune disease, negative for Lyme Disease, and negative for anything else it might have been. I didn’t have anything better than ALS. The doctor told me to call Dr. Mitsumoto’s office at Columbia to “get into a drug trial”. His parting words to me were “good luck to you”. I remember going into that combination mode of shock mixed with “let’s forge ahead and see what I have to do”, There were other teachers in the computer lab who knew that I had just come off an important phone call, so I turned to them and said “I have a fatal illness. I’m going to be in a wheelchair and then die”, before I walked out.

I went into my classroom and called Haley. She called back a little while later and said she had called the ALS Association. I guess there is a certain amount of denial that kicks in. You make phone calls, you go on the internet, you do anything you can. The inevitable is not an option at that point. So when, a year later, I had the bathroom renovated, the tub was pulled out and a shower stall put in, but one day I knew I would not be able to get into the bathroom because I would be totally wheelchair-dependent, and a wheelchair wouldn’t fit. On to renovation #2.

Monday, October 8, 2007

Walk to D'Feet and Apartment Renovation

Antoinette submitted her three designs for the apartment renovation. I am so glad she came, because I would never have known that the floor in the bathroom is slightly higher than the floor in the kitchen, so the flooring needs to be done. That means a contractor, and it also means board approval. I am going to have to get estimates. The guy who did my previous renovation – taking out the tub and putting in a stall shower—will be one of the ones I call. But it’s hard to know who else is honest. I have to ask around. I will have to send Chelsea to board, because she can’t be here with all the banging. And, depending on whether my bathroom will be out of service, I may have to go somewhere too; or at least I have to arrange for my aides to be able to use another bathroom. So I don’t know what I will do. Knocking down walls will create a lot of dust, but I may have to deal with that.

Money is another hurdle. I think a home-equity line of credit will be the way to go, and at the same time, I can consolidate some of the old debt that has been looming over my head, and making it tough to hold onto the $720.00 a month that Medicaid allows me to keep every month.. So this might end up to be a good turn of events in more ways than one.

A last trip into the shower on Thursday was a disaster. It made Lynette late for her day job, since she didn’t want to leave Ellita alone to get me out of the bathroom. So, I really can’t go in there anymore. Sponge-bathing is permanent, until I get the bathroom modified. Since hair-cleaning is an issue I had to order a dry shampoo online. Not the way I wanted to live, but I have no choice. I have had no desire to do much, and I think I am just very depressed. Just a few months ago, I was full of hope to improve my situation, and now reality comes to slap me in the face. I am extremely self-conscious about not being able to take a proper shower and shampoo my hair. When I have to sit on the portable commode in the middle of my living room, it depresses me. And now I am again at the mercy of six people who can hold up, and even stop, any renovation. I don’t know how in God’s name I am going to deal with contractors when I can’t speak, and I am scared as hell that they will take me for a ride because I am disabled and defenseless.

Anyway, it was in this spirit that I had to attend the Walk to D’Feet ALS last Sunday. But I had a good team, which consisted of Ellita, Lynette, Debby and Andrew Wolfe, Cassie the dog, Louise, Haley, Claude, Tyler, Rianna and her friend Darie, Jenna, Gino and Donna and their daughter Regina, Michelle and her friend, Michael, Flo, Judy, and Jane. The weather could not have been more perfect, since we are having a weird September and October; as I write this on October 7, it is 79 degrees at 5:37pm! So it was a great afternoon at the park. After we all got back to Queens, Debby, Andrew, Jane, Ellita, Lynette, and I regrouped at the local App;eby’s for dinner; an appropriate choice, since they were a sponsor at the Walk, and provided the hotdogs afterwards.

Monday was my appointment at the ALS clinic at Beth Israel. Dr. Scelsa said I am an unusual case because I progressed rather quickly at the beginning and I am settling into a plateau. He see no change in strength since my last visit in June. So that is good news. The PT suggested that I get an athletic ankle support at a sporting goods store, to stabilize my ankle during transfers. I f that doesn’t do the trick, I can try leg braces. Other than that, the visit was uneventful. I.ater, Louise redeemed her auction prize from Wings Over Wall Street. It was for fish and chips at “A Salt and Battery” and then high tea at “Tea and Sympathy”, both down in the West Village, my old stomping ground (from when I did my masters degree at NYU, studied acting at HB Studios, and then took craft classes at The Ink Pad). So, aside from great food, it was a nostalgic trip down memory lane for me.