I went in to DC this morning for breakfast with my good friend. I stopped at work first. Thinking I had a fully loaded farecard in my office, I hadn't bothered to look for one at home. Big mistake. All the cards in my desk were of the $.05 and $.10 variety -- remnants only. I didn't have cash, only my debit card, and the thought of having to look for someone to help me at the train station kiosk was depressing. One of my coworkers is a regular Metro rider and (unfortunately for him, fortunately for me) was in the office early. Our relationship is good enough that I felt comfortable asking him if I could borrow his fare card, and he kindly acquiesced. Whew. That hurdle was crossed.
The train arrived and, as expected, was crowded. I knew there was no way I would be able to snag a seat, so I headed for one of the panels that frame the doors. These spots work nicely as one is able to lean against the panel for support, eliminating the need to hold onto one of the bars overhead. As we are all painfully aware, holding on to anything just doesn't happen anymore. Anyway, once I reached my safe haven I stayed planted until I reached my stop. At a couple of the busy stops I got some dirty looks because I would not budge, but I ignored them and stood firm. I was not about to give up my position -- the only secure position on the train since I wasn't able to sit down.
As I stood, making my way on the Orange Line toward DC, I watched all the people on the train holding their newspapers in one hand as they held the overhead bar with the other, and I was struck anew at how much people take for granted. Had I been forced to stand in the middle of the train I would not have been able to do either; in fact, had I been standing in the middle I very likely would have lost my balance and would have fallen (and we all know how much I am afraid of falling). Thinking about it now I realize that is the core of my anxiety. I can't always guarantee I'll be able to get a seat or a "good spot" which leaves me vulnerable. I dislike very much being vulnerable.
There is a part of me that wishes my disability was more recognizable so that people would be aware and would offer me the seat or the spot, but there is more of me that wishes the disability would disappear. Now that would be a very good spot.
My little MacBook, which Cecilia can lift with her HAND, was so heavy I almost dropped it getting out of the car. Almost, but not quite. Thank goodness. Anyway, I deposited it and my over-large, over-heavy bag in one of the booths and went to the line to place my order.
One Everything Bagel, please, toasted, with cream cheese, and, oh, by the way, would you mind please spreading the cream cheese for me? Thank you, you're very kind. Oh, I have a muscle illness. Thank you, I hope it does get better.
A large coffee. Excuse me, I can't seem to be able to pour the (unbelievably heavy) half and half. I hate to impose, but, yes, thank you, that's perfect. Thank you again for your kindness.
If I was pity-party-prone today, these couple of episodes might have been the perfect prompt. But I am not PPP, I am pretty peachy. A pretty peachy peach. Who rose with the dawn, walked (never ran) 4.4 miles, and is quite content.
Life is good.
"On September 21st, 2009 Neuralstem , Inc (www.neuralstem.com) announced FDA approval for a phase I trial of spinal cord derived stem cells as a therapeutic intervention for patients with ALS. Now that we have approval from the FDA, our proposal will be submitted to Emory’s Human Investigations Committee for approval. This process to ensure the safety for our patients will take several weeks or possibly months, and we will keep this site updated with our progress. At this time, we do not have a date when we plan to release details of the proposed trial, including selection of participants."
Neuralstem Press Release
Some PALS' comments regarding the news:
"No mention of how long the treatment's effects carried on in the lab animals, if or when they relapsed...or of side-effects. Everything I've heard so far is that the results are only temporary, and the effects incomplete. Any news or links that would give us more details?"
"This is a 24 month trial. they will be treating 18 people maybe. If some die in the process they will probably halt the trial. Don't wan't to be negative, but it's just so invasive. they will open up the spine and give injections into the spinal cord."
"I was told at clinic that they would be forcing the needle into the spine and then pulling it back to make room for the cells that would then be injected. I'm not sure how much damage will be done by sticking the needle into the spine. Also they will be making several injections along the spine as the cells don't gravitate. Not being a scientist I don't know why this is so important other than we have ALS everywhere and it seems they believe it is necessary based on their findings in animals. I just wanted to post what was on the article that I recently read. Neuralstem's patented technology enables, for the first time, the ability to produce neural stem cells of the human brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells into mature, physiologically relevant human neurons and glia. The company is targeting major central nervous system diseases including: Ischemic Spastic Paraplegia, Traumatic Spinal Cord Injury, Huntington's disease and ALS. Neuralstem plans to initiate a Phase I clinical trial to treat ALS with its stem cells. hope this helps."
ROCKVILLE, Md., Sept. 21 /PRNewswire-FirstCall/ -- Neuralstem, Inc. (NYSE Amex: CUR) today announced that the U.S. Food and Drug Administration (FDA) has approved its Investigational New Drug (IND) application to commence a Phase I trial to treat Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's disease) with its spinal cord stem cells.
Neuralstem is the first company to commence a stem cell trial to treat ALS. The trial will study the safety of Neuralstem's cells and the surgical procedures and devices required for multiple injections of Neuralstem's cells directly into the grey matter of the spinal cord. The FDA's approval represents a significant step toward delivering regenerative medicine directly to damaged neural cells in humans. ALS affects roughly 30,000 people in the U.S., with about 7,000 new diagnoses per year.
Neuralstem CEO and President, Richard Garr, stated, "The beginning of our clinical trial program is a major step towards achieving Neuralstem's goal of treating ALS, a fatal neurodegenerative disease for which currently there is no effective treatment or cure. While this trial aims to primarily establish safety and feasibility data in treating ALS patients, we also hope to be able to measure a slowing down of the ALS degenerative process. This trial will be in the extremely capable hands of Dr. Eva L. Feldman, M.D., Ph.D., Director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery, and Dr. Jonathan Glass, Director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, world-renowned for their study and treatment of ALS patients. We believe that there is no better team to conduct this study for us," said Garr. Their participation is subject to formal IRB approval by their institutions.
"We are very excited about this clinical trial," said Dr. Eva L. Feldman, who will direct the Neuralstem clinical trial program for ALS. "This is a major advancement in what still could be a long road to a new and improved treatment for ALS. ALS is a terrible disease that ultimately kills by paralysis," said Feldman, who also directs the A. Alfred Taubman Medical Research Institute. "In work with animals, these spinal cord stem cells both protected at-risk motor neurons and made connections to the neurons controlling muscles. We don't want to raise expectations unduly, but we believe these stem cells could produce similar results in patients with ALS," Dr. Feldman concluded.
About the Trial
The ALS patients will be treated through spinal injections of its patented human neural stem cells.
This first trial, which will primarily evaluate safety of the cells and the surgery procedure, will ultimately consist of 18 ALS patients with varying degrees of the disease. The FDA has approved the first stage of the trial, which consists of 12 patients who will receive five-to-ten stem cell injections in the lumbar area of the spinal cord. The patients will be examined at regular intervals post-surgery, with final review of the data to come about 24 months later.
Neuralstem expects to conduct the trial at Emory University with Dr. Jonathan Glass, M.D., Director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, as site Principal Investigator (PI) and with Dr. Nicholas Boulis, M. D. performing the neurosurgery. The overall PI for the ALS trial program is Dr. Eva Feldman, M.D., Ph.D., Director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery.
About Neuralstem, Inc.
Neuralstem's patented technology enables, for the first time, the ability to produce neural stem cells of the human brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells into mature, physiologically relevant human neurons and glia. The company is targeting major central nervous system diseases including: Ischemic Spastic Paraplegia, Traumatic Spinal Cord Injury, Huntington's disease and Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig's disease. Neuralstem plans to initiate a Phase I clinical trial to treat ALS with its stem cells. ALS is a progressive fatal neurodegenerative disease that affects nerve cells in the brain, leading to the degeneration and death of the motor neurons in the spinal cord that control muscle movement. Pre-clinical work has shown Neuralstem's cells to extend the life of rats with ALS (as reported the journal TRANSPLANTATION, October 16, 2006, in collaboration with Johns Hopkins University researchers), and also reversed paralysis in rats with Ischemic Spastic Paraplegia, (as reported in NEUROSCIENCE, June 29, 2007, in collaboration with researchers at University of California San Diego).
The event was held at Top of the Town, an incredible venue with an incredible view of Washington. It was a clear night and the Lincoln Memorial, the Washington Monument, and the Capitol glowed. I stood on the rooftop balcony with Adam and reminisced about the different running courses we would run that took us to these various landmarks.
Everything was donated: the space, the drinks, the food. Uptown Caterers provided a delightful repast, including a pasta and chicken dish, mouthwatering lobster bisque (with huge chunks of lobster), roast beef sandwiches on croissants, ham on biscuits, and turkey on cranberry corn muffins (I wish I had had more of those!). The crab dip was also delicious. Later in the evening we were treated to fruit, Petit fours, and strawberries dipped in chocolate. I was amazed at how much food there was. Thank you, Uptown Caterers!
The silent auction offered quite a variety of gifts. Restaurant certificates, massage and spa certificates, a winery tour, jewelry, a dog spa gift basket, a shopping trip for two to New York City, and more. I rather had my heart set on the shopping trip and was very happy when I won.
I was also very pleased to see how many of my friends chose to spend their evening supporting -- once again -- the ALS Association. To be supported so by my family and my dear friends really does give me the sense that I am not in this fight by myself.
Wendy, we tease and go back and forth about who is the luckier sister, but I have known for more decades than I care to admit that I am. You blow me away. I know your friends were involved in making last night such a success but, my dear sister, they did it because of you, because of the kind of person you are. I love you so much. You are one hell of a muscle and I'm glad you are mine.
Thursday nights are Project Runway nights. C Claire and I have a glass of wine and settle in for some PR bonding. Our favorite is the adorable Tim "Make It Work" Gunn. His over-the-glasses, arched eyebrow critiques are as delicious as the wine, and we drink in every droll drop. We love love LOVE him.
Several years ago I took Cecilia to Denver for a very cool dinosaur show. We flew into the Denver airport and I picked up the rental car, then we headed for our hotel.
At the same time we were leaving the airport, so was someone in a yellow Mustang. As we made our way along the highway, the yellow Mustang made its way, too. We pulled into our hotel and, yes, so did the yellow Mustang. One hell of a coincidence.
To this day, whenever we see a yellow Mustang we remember that episode. We are often reminded because there are an abundance of yellow Mustangs near where we live. It is as though we attract yellow Mustangs.
I can think of worse things to attract. Cecilia and I rather like them.
Remember this? Yes, that's me as I appear on PLM. My functional rating scale (FRS) is currently 41. In August it was 39 (it can fluctuate depending on the day, but it usually hovers near 40; the highest FRS is 48). The colors were the same..... after I edited. The first time I did the August assessment my legs were yellow, too.
Seeing the change in color made me panic. I went back to the questionnaire and changed one of the responses so that the yellow legs would go back to green. I rationalized this by saying I had been overly negative; making myself seem worse than I actually am.
Under "walking" I had originally marked the second ("early ambulation difficulties"), and under "climbing stairs" I had marked "slow." That was all it took to make me yellow. I went back and changed walking to "normal" because, I reasoned, I can still run. Sort of.
I am probably being too generous with my hands/arms as well, but I am terrified my avatar's arms will turn orange. I don't think of myself as orange armed, therefore I will not permit this sort of representation.
I'm sure some of this is due to my competitive nature -- I refuse to let Louise get ahead of me at this point in the race. There is also the denial factor which, despite my acceptance, still lurks within.
I keep focusing on October. Forgive me for mentioning this yet again, but as I approach this very significant month I can't help but marvel and be grateful that I am where I am three years since symptom onset, two years post diagnosis.
So. I cheat. My legs may not deserve yellow, but they are probably a lighter shade of green.
This leads me to my next topic, which was my most recent visit to my physical therapist. When I saw Mike on Wednesday morning he noticed my gait looked sort of hobbling. Lynne has noticed it, as has the woman who runs the deli next to my office. Lynne and I have identified that I lock my right leg when I take a step forward with the left. Mike explained this was an instinctive move on my part to stabilize my right quad. You may remember that I complained of my right quad after the New York City Marathon. Anyway, Mike showed me some great stretching techniques as well as a good way to work the quad. I've said it before and I say it again now: I love Mike and am so happy he is my doctor.
Must run. Time to stretch.
I present to you the Blue Ribbon winner of yesterday's pageant:
SUCH a little hussy!
You've got to love it.
Scientists Identify Genes Linked To Lou Gehrig's Disease
ScienceDaily (Sep. 9, 2009) - Michigan Technological University researchers have linked three genes to the most common type of amyotrophic lateral sclerosis (ALS), generally known as Lou Gehrig's disease.
Professor Shuanglin Zhang leads the team of mathematicians that isolated the genes from the many thousands scattered throughout human DNA. He notes that their discovery does not mean an end to ALS, but it could provide scientists with valuable clues as they search for a cure.
It can't come any too soon. Zhang started showing symptoms of the disease himself four years ago. He now breathes with support from a respirator and works at home with the aid of a research assistant and his wife, Qiuying Sha, an assistant professor and member of his research team.
"I felt very urgent to find the genes for ALS," he says.
"This is very nice work," said Xiaofeng Zhu, an associate professor of epidemiology at Case Western Reserve University's School of Medicine. "It's very challenging to map genes for complex diseases, and while many statistical methods have been developed, most don't work well in practice. Zhang's group has developed a method to detect genes and gene-gene interaction in complex diseases and provided evidence that it works.
"Their findings will need to be confirmed by other researchers, but I think this will be very useful for the investigators who are trying to find genes underlying complex diseases such as ALS," said Zhu.
According to the ALS Association, only about 10 percent of patients have familial ALS, a directly inherited form of the usually fatal neuromuscular disorder. The remaining 90 percent, including Zhang, are diagnosed with the sporadic form of the disease. While scientists have long suspected that genetics plays a role in sporadic ALS, they have had no evidence to back it up, at least until now.
Everyone has the three genes in question. But in people with sporadic ALS, they differ from those in people who don't have ALS.
The mathematicians were not surprised when they tracked down the genes' street address. "Everybody has 23 chromosomes, and the three genes on chromosomes 2, 4, and 10 interact," explained Sha. "If you have this combination of the three genes, you are at high risk of developing the disease."
"It's really exciting, especially because my husband has sporadic ALS," she adds. "Maybe they can find a cure by blocking the genes."
According to the ALS Association, approximately 30,000 Americans have ALS, and about 5,600 new cases are diagnosed every year. The disease destroys the nerves in the brain and spinal cord that control voluntary movement, eventually leading to paralysis.
Zhang's team used a new statistical method to analyze the genetic codes of 547 individuals, 276 with sporadic ALS and 271 without. Their method, a two-locus interaction analysis approach, allows the researchers to identify multiple genes associated with a complex illness.
The data set they analyzed was provided by National Institute of Neurological Disorders and Stroke (NINDS) Human Genetics Resource Center at the Coriell Institute, a publicly funded "bank" or repository for human cells, DNA samples, clinical data, and other information that aims to accelerate research on the genetics of nervous system disorders.
"Ideally, we should confirm our results in a second data set, but we don't have one available," Sha says.
ALS is not the first condition they have tackled. Using data sets provided by University of Cambridge, Zhang, Sha and their colleagues have also identified 11 genes linked to type 2 diabetes, which has reached epidemic proportions in the U.S.
The team hopes to apply their methods to other medical conditions, but has been hampered by the lack of genetic information: most data sets are not freely available to researchers. Zhang found out about the ALS data sets serendipitously, while searching the ALS Association website for information on his condition.
"Unfortunately, we don't have access to more data sets," said Sha. "If we did, we could analyze even more diseases."
Their work is being funded by a grant from the National Institutes of Health. In addition to Zhang and Sha, the other coauthors are Zhaogong Zhang from Michigan Tech and Jennifer Schymick and Bryan Traynor of the National Institutes of Health.
1. Shuanglin Zhang et al. Genome-wide Association Reveals Three SNPs Associated with Sporadic Amyotrophic Lateral Sclerosis through a Two-locus Analysis. BMC Medical Genetics, (in press)
Adapted from materials provided by Michigan Technological University.
Bill, our salesperson, turned out to be a very, very nice man. We exchanged all the usual pleasantries, reviewed what we had previously discussed, then headed out the door for The Test Drive.
It wasn't new, but it was newer than what we were trading in. (I use the word "trading" loosely; with 275,000 miles and a bad engine, we got the better end of the deal.) There it sat in all its clean whiteness, ready to welcome us as its new owners.
I got behind the wheel with no problem. The door was heavy -- heavier than what I am used to -- but Bill closed it for me. Okay. The seatbelt was a little hard to buckle due to the fact that the fastener was positioned right up next to the console. I scooched over closer to the door so I could maneuver a little better. Okay. The key was next. As it did not come equipped with Allen wrenches and foam tubing, I had a very hard time turning it. I'm not even sure I did turn it; it may have been turned for me. Sigh. Okay. Time to drive. I reached over to put the car into drive and realized there was a button on the shift that needed to be pushed to get it out of park. This was accomplished using my left hand as it reached over to help my right, which does not and will never again push buttons. I placed my hands on the steering wheel (a much narrower design than I am accustomed to) and off we went.
As I drove, I realized how much effort it was taking to hold onto and to turn the steering wheel. This hybrid is a heavier car and I could feel it even when I was going straight. I made my way around a long loop -- about 4 miles -- which brought me back to the dealership. I was sold, so was John, all we had to do was sign on the dotted line.
Now, I'm sure at least a few of you will be able to understand this analogy: buying this car was like buying a great pair of pointy toed high heels. God, they look so good on -- so good that you pay no attention to the pinched feeling in your toes. The shoes are perfect and you must have them, no matter what. The problem is, each time you wear them the pinching gets worse and becomes more and more difficult to ignore. You might tell yourself it's okay, if you hold your foot a certain way it won't hurt so much, you'll get used to it eventually. But you never really do.
After bringing the car home, I took Cecilia for a drive. All the things I mentioned above -- my pinched toes -- were still there. I did my best to ignore them. On Sunday, I drove the car to Williamsburg with Lynne and her sisters; there was no denying the car was great, but it was not a great fit for me. It will, however, fit the other drivers in the family -- particularly C Claire. It's a tank and will serve her well.
I will wear this new pair of shoes on occasion, but only when someone is with me to help me. In the meantime, I and my much loved little hybrid will continue on down the road; this gem of a car as comfortable as a great pair of running shoes. When shifting becomes an issue, I'll figure something out, but that won't be necessary anytime soon.
I know I have mentioned the twitching I often feel in my face. Well, I feel it in my nose as well. It's the most bizarre sensation, I can't even describe it.
If my twitching could do magic, can you guess what magic I would work?
We had steak tonight. As has become the norm, John cut my meat for me before it was served. I picked up my fork with my left hand, also normal. What wasn't normal was how the fork slipped, or how my hand felt--fat, weak, a little painful.
To say truth, this has been creeping up, slowly but surely. My fingers are becoming more swollen and there are fewer utensils that fit comfortably. I scoop more than I spear. Occasions like tonight, the spearing demands my claw-fist hold the fork nearer the tines.
What will I do when I can't hold my silverware anymore? Sigh. That question was, as we all know, totally rhetorical.
The thought of decreasing independence makes me sad.
7:50 AM. I realize I have not yet eaten my breakfast so I grab my debit card and head to the little deli downstairs. As I go down the elevator, I start thinking about cinnamon rolls, which the deli does not carry. The elevator door opens and, rather than turning left toward the deli, I turn right toward the Starbucks.
Starbucks has the cinnamon rolls I am craving. Starbucks also has the skinny chai I love so much, so I order both. The cashier gives me back my debit card along with the cinnamon roll. Here is where I realize I need another hand. When I buy my food at the deli, I don't buy a coffee so I don't need but one hand.
Anyway, I gather the receipt and the debit card and secure them within the curled fingers of my right hand; I then place the cinnamon roll on top of the card and curl my fingers over the scrunched up bag. My not very opposable right thumb rests uselessly on top. Okay, that part is done. Next comes the drink. Fortunately, I am still able to carry a moderately sized coffee in my left hand -- not grasping around the cup, mind you, but by placing my fingers and thumb over the lid and pushing down, sort of like a multi-pronged claw catcher.
The drink being securely clawed and the bag being sufficiently ensconced, I head back to the office. As I cross the street it occurs to me I will not be able to open the doors. I am in luck, however, because one of the guards just happens to be outside. Whew!
The lessons learned here are a) do not deviate from your original destination and b) if you do, don't buy a coffee. I think going forward I will make sure to carry my tote.
The weather these last few mornings has been incredible; no humidity, just the right amount of late summer cool. Conditions such as these bring out all the morning runners: all ages, all paces, running individually or in groups of two, three, five...
As I walked to my physical therapy appointment today I watched them and I was so jealous, not only because they were running but because they were running in such fine weather. In my experience there is nothing better for quickening your pace or improving your breathing than cool -- even cold -- air.
I saw two men who had just come off the Custis Trail and were crossing from the opposite corner. They were laughing and discussing the trail and their run, there was a hint of sweat on their faces and clothes -- it reminded me of those mornings when Kendall and I would be finishing our run. The memory was bittersweet.
After my appointment, when I came back to the office, Dan and I had a nice conversation about his morning run. He is back on track and has run three days this week. Anyway, we talked about the course he'd run, courses he, Kendall, and I used to run together. As we talked, more memories flooded into my mind -- about different points on the trails, and how I've felt when I was running, running strong. Again, bittersweet.
A pity party began to percolate but I stemmed it mid-perc. Not being able to run the way I used to is a real drag, but at least I used to, and I can remember it.
I'm pretty damn lucky.
A Fading Champ, But A Champ Still: Muhammad Ali
by Frank Deford
September 2, 2009
Muhammad Ali flew to England last week, there to make appearances in soccer stadiums. He said it would probably be his "last time" in the U.K. He can barely move on his own now.
One London newspaper called Ali, who was once "a butterfly," "little more than a zombie." And a great many people find it as upsetting as it is sad that the old champ continues to make personal appearances.
Maybe it would've been best if our last image of him had been in '96, when he suddenly appeared out of nowhere and — already shaking terribly from Parkinson's — still managed to light the Olympic flame. There was a nobility to that scene, as if once more he'd gotten off the canvas, managed somehow to win another fight.
But Ali wouldn't retire from the ring when he should have, and now he refuses to comfort us and slip away from public view.
Perhaps there's a bolder statement in that, that the man who once so immodestly enjoyed standing before us — the laird of his realm, proclaiming his beauty to the heavens — is now unafraid to let us see him when his great body is slumped, in shambles.
We want to remember the paragon, not the mere human.
But might we be too tender with our memories? The athlete dying young has always seemed so shocking, so unfair — but I suspect that it upsets us even more to actually see our heroes, those physical marvels, grown old and infirm, as vulnerable to age and disease as we ordinary folk are. We want to remember the paragon, not the mere human.
Ah, but in contradiction, Ali's wife, Lonnie, speaks for her husband, saying that for as long as he can manage to travel and make silent appearances, it "is not just his living; it is his life." There must, for him, be as much in satisfaction as in remuneration that he can still command up to $100,000 just for showing up.
The busted old pug was long a stereotype in our athletic cavalcade. That Ali is broken — but not broke — is a certain revenge. And he, who was once so reviled by so many Americans, has become quite a beloved figure in his dotage. Complicated as he has been, he won the fight for our affection, too.
I can so vividly remember, a few years ago, when a photographer posed him before the Vietnam Veterans Memorial in Washington, D.C. I thought that was insane. Who, after all, was more identified with opposition to that war?
But when the people there — searching for the names of their loved ones who had died for what Ali opposed — when they spotted him, they rushed to him, even handed me their little cameras to take snapshots with him, embraced him. It was dear.
Even as boxing, as a sport, fades to the fringes, Muhammad Ali still retains some kind of hold on us. If he yet wants to present his present, lesser self to us, it is not for us to feel pity for him.