THE ODDS (Debbie Does ALS)


10.26.2009

Dear Louise

Happy fucking anniversary.

10.25.2009

Random thoughts for a Sunday afternoon

Yesterday was the ALS walk in Richmond. The morning was unusually warm and humid and the threat of rain loomed. I arranged to meet Kendall and Lynne early for a pre-walk walk, followed by some pre-walk refreshments. Yes, ALWAYS the refreshments!

While we were enjoying our beverages, one of our local running club friends arrived on the scene with his son and his son's family. The friend, Art, was one of the contributors to my team, and his son's family (including in-laws) were there to show support as well. Coincidentally, the father-in-law had lost his mother (also a Deborah) to ALS some years before and has a sister-in-law who has it. Way too many coincidences.

The walk started at 11 AM. All my muscles were there: Jenny, Becky, Wendy and Mike, John Wallace, Jeff and Patti, and, of course, Lynne and Kendall. Other of my muscles were there in spirit, having contributed very generously to the walk. Another muscle, my half sister Tracy, had mailed hoodies embroidered with "McGee's Muscles" for us to wear. I certainly do abound in support and love, don't I?

You will notice that John and Cecilia are not listed. Unfortunately, the stress that has been plaguing my youngest daughter continues. It was best that she stayed home.

The rain that had threatened all morning decided to make intermittent appearances just before and during the walk. Everyone else pulled up their hoods, huddled in shelters, or pulled out their umbrellas, but I held my face up and let the rain fall. It was refreshing, even cleansing. It didn't last very long and before we knew it the sun was trying to peek out. When we returned there were hot dogs and cookies -- unfortunately, no more beer! That didn't matter (too much) as we were all having a very good time laughing and talking.

It was a good event. Kudos to the ALS Association for all they do for us.

****************************

The leaves are turning. On Monday last week they were just hinting at color, by Friday they were a beautiful sight to see. I had a thought as I was driving down one particularly lovely road: these trees and leaves are the most beautiful just before the leaves die. Is that irony?

****************************

Tuesday. Day after tomorrow. Air travel. Large pond. Pints. Aaaahhhhh.

****************************

I walked this morning. It was cold and bright and breezy and fresh. And for the first time in seeming AGES, I ran. Just a little. Breathing wasn't too bad, but I don't have the wind I once had. Tonight my legs are a little tired, but I wouldn't change a thing.

On the negative side, I had a very unpleasant experience in the loo.

For some time I have had increasing difficulty in "pulling down" which is even more problematic when the situation becomes "urgent." I no longer wear certain pants for fear of having an accident. When walking today, I wore some of my loosest cropped pants.

About halfway through my third lap I felt it start. I knew if I was walking I'd be okay until I could get to the restroom. The closer I got, the worse it got. I made it to the stall but was having no luck getting my hands into the waistband. The more I struggled, the worse it became. I finally managed to start "pulling down" but was too late. I couldn't help it.

Don't misunderstand--it wasn't a complete drenching, but it was enough. I made my way back to my car, found something to sit on, and came home. Embarrassed, angry, and sad.

Thank goodness I'd had a little bit of good runnin' or it would have been a miserable morning.

****************************

Today was also the Marine Corps Marathon. Enough said about THAT topic, but it's still hovering around in my messed up little brain.

****************************

Two and a half hours until Monday. The 26th.

Goodnight.

10.23.2009

Another article

Approved Enzyme Slows ALS in Mice

October 22, 2009

A chemical cousin of a drug used to treat sepsis dramatically slows the progression of amyotrophic lateral sclerosis, or Lou Gehrig's disease, in mice.
The results offer a bit of good news in efforts to develop a therapy to stop or slow the progression of a disease that generally kills its victims within just a few years.

In a paper published in the Journal of Clinical Investigation, scientists studied the use of an enzyme known as activated protein C (APC) to slow the cell death that occurs in ALS.

"We're able to significantly extend the lifespan of mice who have an aggressive form of ALS," says co-principal investigator Don Cleveland. "The compound also extended the length of time that the mice were able to function well despite showing some symptoms of the disease, and it reduced the pace of muscle wasting that is a hallmark of ALS."

While the investigators say that more research must be done before the enzyme is tested in people with the disease, they're encouraged that the work involves a compound that's already been proven to be safe and currently given to patients via a common injection for another condition. The team hopes to test a treatment in patients within five years.

The work was done by researchers from the Univ. of Rochester Medical Center, The Scripps Research Institute, the Univ. of Notre Dame, and a Rochester-based start-up biotech company, Socratech. First authors of the paper were Zhihui Zhong at Rochester and post-doc associate Hristelina Ilieva at UC San Diego.

The researchers studied mice with a mutation in a gene called superoxide dismutase 1 (SOD1), which plays an important role in keeping cells safe from damaging molecules known as free radicals. While the cause of most cases of ALS is unknown, scientists know that SOD1 plays a role in approximately 3% to 4% of cases-–providing an opportunity to study the disease's initial steps, which occur long before key nerve cells appear sick or die. In addition, recent studies have suggested that the accumulation of mutant forms of SOD1 is linked to most cases of sporadic ALS.

Cell death is central to the symptoms of ALS, a chronic disorder of motor neurons in the brain, brainstem and spinal cord, which results in a progressive paralysis that generally kills individuals within five years of onset. Currently there is no cure or even a treatment that can effectively slow disease progression.

In a surprising finding last year, a team led by Cleveland found that SOD1 mutations weaken the crucial natural barrier between blood and the spinal cord. In effect, blood vessels in the spinal cord become leaky, allowing toxic substances to flood into the spinal cord. Because of the defect, motor neurons are exposed directly to biochemical byproducts of hemoglobin such as iron, which forms reactive oxygen molecules that injure or kill neurons.

Now, the team has shown that APC dramatically lessens the activity of the SOD1 mutation. This protects neurons that are under assault by blocking the synthesis of aberrant forms of the molecule in motor neurons and other cells in the spinal cord. These include microglia cells, which the Cleveland laboratory has shown play a key role in the inflammatory response and progression of ALS. In addition to reduced SOD1 activity, the flow of dangerous byproducts of hemoglobin into the spinal cord was eliminated by APC, saving neurons.

Currently, the group is studying alternate forms of APC, in an effort to create the form that best quells the symptoms of ALS while causing fewer unwanted side effects, such as bleeding. The researchers say the form of APC currently used to treat sepsis carries an increased risk of bleeding and likely will not be appropriate for treating ALS in humans.

While other researchers are exploring the possibility of silencing SOD1 to treat ALS, Cleveland noted that most approaches would require invasive surgery and delivery by direct infusion into the spinal cord. APC, in contrast, is already approved as an injection.

Source: Univ. of Rochester Medical Center


10.21.2009

In the news...

Sepsis treatment 'may slow Lou Gehrig's disease'

WASHINGTON — An enzyme similar to that used to treat serious sepsis could be used to slow the progress of the motor neuron disorder known as Lou Gehrig's disease, according to new medical research.

A study, released late Monday, found that mice suffering from the disease experienced slower cell death when treated with the enzyme, called activated Protein C or APC.

The protein also extended by about 25 percent the life of mice suffering from a particularly aggressive form of the disease, which is formally known as amyotrophic lateral sclerosis, according to the study.

The report, which was published in the online edition of the Journal of Clinical Investigation, was produced by researchers from a group of US universities and a biotech startup company in New York state.

Among other promising developments, the study found the compound extended the amount of time that mice suffering from the disease were able to function normally, despite showing some symptoms of the disorder, which is incurable and almost always fatal.

The protein also slowed muscle wasting associated with the illness, which is named after the star US baseball player Lou Gehrig, who died in 1941 after suffering from the disease.

Though additional research will be needed before the treatment can be used in humans, the researchers said they were encouraged that the breakthrough involves a compound that is already used to treat patients with sepsis and has been proven safe.

They hope clinical trials on patients could begin within five years.

"The success of this research project has been very gratifying, and we are hopeful that a form of APC will ultimately be useful as a treatment for this disease," said Berislav Zlokovic, a professor of Neurosurgery and Neurology at the University of Rochester.

The researchers found that APC may also be useful in mitigating some of the secondary effects of the illness, including a mutation that weakens barriers between blood and the spinal cord, allowing toxic substances to enter the spinal cord.


10.20.2009

Cheers

Thank goodness I have a three mile walk on Saturday, one that I've been training for EVER so long, or I might just fall back into those awful doldrums that recently had hold of me.

And after the walk will be the family version of Oktoberfest -- where we celebrate all the birthdays that occur in October. That will be a nice diversion.

And, one week from today, I will be on an airplane headed to a distant land where I will consume many pints with my buddy, Lynne.

So it seems I am sufficiently occupied, yes? Yes. For the most part. There is one more thing I plan to do, sort of a ritualistic cleansing of both my spirit and my closet. I have a bin in my closet that contains a lot of running gear, running gear I no longer wear. The odd pair of shorts -- once considered much too large -- may be kept, as well as a few nice, loose, long sleeved technicals. Beyond that it's off to Goodwill. There is no point in keeping these things around.

The same holds true for some other random items. If I am unable to manage them, it is time to go. One might think this is a trifle depressing but I view it in a very positive light: I am transitioning.

When I'm finished I will raise a glass full of the pint-y stuff, thanking all that is being discarded for their years of faithful service. It will be a fine tribute.

10.18.2009

Shoes

video
Yay! The shoe video has been located. It's nothing special, just further evidence that a zipper pull has many uses.

Dim Sum

This morning I met friends for brunch at a great dim sum place in Rosslyn. The idea was put forward by my neurologist at NIH (Justin, next to me on the right) several months ago and we finally got around to making it a reality. Joining us were Adam (blurry, on the left), Kay (my OT/PT from GW), and Ricardo (in the center, not that I had to tell you that). The food was fabulous, the company was even better.

Kay, who is Pakistani, is going to host the next get-together at her home where we will eat authentic Pakistani fare. She promises it will be spicy, my idea of perfection.

It was a wonderful way to spend a Sunday morning, with wonderful friends. I am very much aware how fortunate I am.

Prepare to be amazed

video
So here it is, what you have all been waiting for: a demonstration of how I use the zipper pull to put on my socks. I apologize for the poor sound quality and for the amateurish feet, but I think you get a good sense of how this works. On the second foot the pull got stuck so it was not as fluid a demonstration as I would have liked, but it did give you an opportunity to see how I then pulled up the sock by my heel.

There was also a video demonstrating how I put on my shoes -- it seems to have gone missing in cyberspace. I will try to re-create at some point in the future. Until then, please enjoy the sock demonstration.

10.17.2009

Decision.

I will not get a feeding tube or use a bi-pap or a vent. It'll be done quicker that way and people can get on with their lives.

Such a lovely morning

A little more than two years ago I was recovering from the hell that was the Chicago Marathon. Lynne, Adam, Jeff, and I had trained through the heat of summer and were eagerly anticipating the blustery cold of October in Chicago. I don't remember exactly when I started keeping track of the weather but, knowing how obsessive I am about these things, I wouldn't be surprised if it was four weeks in advance of the race. Things weren't looking good; long-range forecasts predicted warm temperatures. There may have been one day which gave a glimmer of hope -- I believe I read it was going to be in the 50s on race day. I must have been on drugs that day, because I never read another forecast like it again.

It was warm on the Friday we flew from Washington into O'Hare, it was warm on the Saturday we busied ourselves around the city of Chicago. We were all fairly resigned to our fate and decided to make the best of it the next day. Sunday morning we awoke to temperatures in the 70s, ungodly weather in which to start a 26.2 mile race. In defiance of my own rule never to run a marathon if the temperature was more than 50°, I took my place among the thousands of other stupid people.

I don't remember all the specifics but I do remember it was painful. At mile 10 I thought I was going to die; at the half I got sick and made the decision to quit. Having been instructed by Adam to carry my cell phone, I called him and discovered that both he and Jeff had called it quits as well. We made our way back to the hotel and waited for Lynne and Adam's sister, Anne. Those two fools had decided to stay in the race, despite the now 92° temperature AND despite the fact that the race had been canceled due to the intense heat. I am still amazed and impressed that these two pulled it off.

That was my last race pre-diagnosis. I ran in Richmond in mid-November and did a great time. For me.

What got me thinking about this? Today is cold and rainy, almost perfect marathon weather. As I poured my coffee I started to think about what sort of running gear I would wear on a day like this: shorts (naturally), a long-sleeved technical shirt (over a tank, as the long sleeves would come off around mile 3), a ball cap, mittens, and my leopard print ear bags. Instead, I am wearing my jammies, drinking coffee, writing this, waiting for Cecilia (who is taking her PSAT). Being out in the rain isn't much fun if you aren't running, especially in these temps. Anyway, as I was thinking about what I would be wearing today, I remembered what I was doing this time last year, and I started thinking about what I was doing two years ago. Chicago was a race I had hoped to run a second time in cooler weather. Oh well. Maybe I will go back to Chicago one day just for the hell of it.

Today I start taking baclofen. Any of my fellow ALS-ers have any personal insights into this drug?

I pick up C Claire in an hour. I may just have time for a quick nap.

10.16.2009

I wish I could...

  • clean my glasses.
  • open my lipstick.
  • butter bread.
  • pick up coins.
  • hold a q-tip.
More to come.

10.15.2009

All I want to do

Is go back to bed. I love my job, but it's cold and gray and rainy and my pillow felt SO good this morning...

I didn't make things any better when I ordered this:

Hot chocolate is a sleepy time drink.

When I was in line at Starbucks I had every intention of ordering an Americano but when my eyes saw the words "hot" and "chocolate" I was powerless to resist. Those two words leapt out of my mouth before I had any idea what was happening. Do I regret it? Not one iota.

I don't regret the whipped cream, either.

Okay, enough of this. Time for coffee. Unless anyone has a nice pillow they'd like to give up...

10.13.2009

Do the math


+


__________________________


Two items

I cannot take credit for finding this extraordinary site. Once seen, however, I had to share.

(Thanks, MJ)

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On another note, we are a week and a half out from the Walk to Defeat ALS (October 24 in Richmond). I encourage you to forward the link to anyone you know who might be inclined to support this very, very important effort. Thank you for all of your support, financial and otherwise.

10.12.2009

Aimee-zing

I found this inspiring, and it evoked envy. I wish there were magic legs (and arms and motor neurons) for ALS patients.


10.11.2009

Back on track

One year ago today I struggled for four hours to do 20 miles, probably one of the toughest runs (I can't call it a race) I'd ever done. The NYC marathon followed, and there ended my racing career.

My "wogs" have turned into plain old walks lately and, except for the occasional pop-in by Lynne, are solo events. My iPod keeps me company -- I listen as much to podcasts as I do music and the time passes enjoyably. Lynne met me for an hour yesterday while I waited for Miss Elegant at her SAT class.

Today I decided to meet Lynne and Janice after their three-hour run. Earbuds in, podcasts playing, I walked before the anticipated meeting time. What a walk -- the air was exhilarating and felt like an old friend. I wasn't running, but the temperature brought back such fabulous memories that it didn't matter; I was out there in it anyway. At one point, about an hour into my walk, I saw a deer cross the road; not long after I saw a fawn bounding back the opposite way, not confident enough to make it across. He and his mother were now separated -- how were they going to reunite? There was too much traffic on the road for the doe and she stayed hidden; as I came nearer I saw her sneak back into the woods but she did not go far and I saw her standing stock still behind some low hanging branches. I crossed the road and tucked into a trail hoping to see the reunion, but the cars (and likely my scent) kept the deer out of sight. I went on my way.

The course I walked today is part of the half marathon course that Lynne designed. During the race, you encounter some killer hills past mile 11. When I used to run the course this was the worst part -- sometimes the hills were too much and I had to walk. I went down one of those hills on my way out which meant I had to come back up on my return. My glutes have not worked so hard in a very long time.

Ultimately, I walked for two hours. As planned, I met Lynne and Janice and we shared a refreshment just like in the old days. It felt good, very good.

Making it work.

Black, long sleeved, v-neck sweater which lays nicely over comfortably fitting blue jeans, which fall perfectly over black leather Stuart Weitzmann pointy-toed, high-heeled boots. A favorite ensemble for years.

Behind the scenes: Sweater is larger than necessary to permit independent undressing, and to cover the panel on the front of the jeans where one would ordinarily find a zipper; boots are zipped only partway, just above the ankle.

My own little Potemkin village. But it sure felt nice to at least look a little like I used to. I'm getting so sick of black pants I want to scream.

10.09.2009

Breathtaking

I walked into the kitchen and saw her as if for the first time. Her white blond hair was pulled into contemporary chignon, the bangs swept to the side. Miniature peace symbols dangled from her ears and a little anchor shaped necklace circled her beautiful throat. Her fingers speedily tapped away at her laptop as she worked on her AP homework; her posture erect and her head turned slightly as she read her notes. This was not my little girl -- this was an elegant young woman.

She stuns me.

Again with the sniffles? Oy vey.

The nice waitress at IHOP this morning asked me what was wrong with my hands. This prompted a fresh flood of tears in what has been a rather teary week. I have noticed that, during these bouts, the corners of my mouth involuntarily pull down. This must stop. I don't want my face to freeze with all those horrible lines and wrinkles.

So, yes, it's been a rough week. Starting with the clinic last Friday, Louise has been standing right beside me, bumping into me, mocking me. Rather than pointing out how lucky I am thus far, she reminds me instead of what I am no longer. And I, foolish idiot that I am, play right into her hands.

I suppose I am grieving. This hurts like grief; it penetrates way deep inside and feels terrible.

As I am wont to do, I will get past this. If only there weren't so many reminders -- distractions, as a beloved friend so eloquently put it -- but there are, and I have to get my mind right and push forward.

(Thank you, dear friends, for putting up with me this week.)

10.08.2009

William C. Harris

There are those who say we are the sum of all the people in our lives. If so, I am fortunate, indeed, to have known such a fine person.

10.07.2009

And the day after...

Counting down to 8PM and an hour of mirth with Adam, Ricardo and DAVID SEDARIS!! There's a good way to forget one's woes.

10.06.2009

Not fast, but consistent

DATE

RACE

GUN

CHIP

10/28/01

Marine Corps Marathon

4:53:11

4:40:13

11/17/02

Montgomery County Marathon In The Parks

4:48:39

4:48:02

3/30/03

Ocean Drive Marathon

4:59:25

10/12/03

Steamtown Marathon

4:42:48

4:41:13

11/2/03

New York City Marathon

5:20:54

5:10:33

11/15/03

Richmond Marathon

4:47:11

4:44:28

11/29/03

North Central Trail Marathon

4:49:51

2/22/04

Washington's Birthday Marathon

4:58:33

3/14/04

Virginia Creeper Marathon

4:47:57

5/2/04

Frederick Marathon

5:09:35

5:10:00

10/10/04

Steamtown Marathon

4:38:43

4:37:12

11/7/04

New York City Marathon

5:09:48

5:03:24

1/23/05

Florida Gulf Beaches Marathon

4:32:28

2/20/05

Washington's Birthday Marathon

4:33:16

3/19/05

Shamrock Sportsfest Marathon

4:26:45

4:25:07

5/15/05

Delaware Marathon

5:05:25

5:04:48

10/9/05

Steamtown Marathon

4:25:45

10/30/05

Marine Corps Marathon

4:40:09

4:38:34

11/12/05

Richmond Marathon

4:27:06

4:26:17

2/19/06

Washington's Birthday Marathon

4:25:47

3/26/06

Ocean Drive Marathon

4:15:26

11/12/06

OBX Marathon

5:03:31

4:59:44

4/7/07

Ocean City, MD Marathon

4:35:14

4:34:21

11/10/07

Richmond Marathon (POST DX)

4:22:31

4:19:09

11/18/07

Philadelphia Marathon

4:38:09

4:33:06

11/2/08

New York City Marathon

5:45:32

Sigh.

Waxing nostalgic

Early October. Since 2001 early October has heralded the beginning of marathon season; training during the hot summer months has been rewarded with the cooler mornings of fall and this runner looked forward to going the distance surrounded by a much more accommodating temperature. It is easier to breathe, your pace quickens, and the anticipation of and excitement (and respectful anxiety) for the long-awaited event -- or, in many cases, events -- heightens your appreciation of the good weather.

The last few weeks have been gloriously cool. Runners abound on the trails and roads from the time I take the Memorial Bridge exit until I get to work -- they are everywhere. I used to be where they are, running the same course and greeting the morning with a healthy sweat, energized heart and muscles, and a great big goofy smile. God, it was wonderful, like nothing else.

Many of my friends have been training all summer and are preparing for a variety of marathons: Steamtown, Marine Corps, New York, Richmond. I have run each of these races at least twice. When I crossed the finish line at New York last November I shed a few tears knowing it was my last race. As I dictate this tonight, (DQ alert! DQ alert!) my voice cracks and my heart breaks with the longing to be able to pull up my socks, tie my shoes, and run the way I used to. I can only put a positive face on this for so long before I look at it long and hard and realize I am not that runner anymore. I hate Louise for taking it away from me.

10.05.2009

Stop, drop, ouch

Saturday night. Getting into bed; not to sleep, but to read, which requires a different entry strategy. When it's sleepy time I get into bed from a sitting position, from which position I then lie down. Easy, uncomplicated. When I get into bed intending to sit up for a while I enter on hands and knees so as to better position myself against my pillows without having to rely on my arms to push me back.

So, back to Saturday night. I was climbing into bed when something slipped -- whether it was my knee or my wrist, or both, I don't know -- and I slid right down to the floor, stopping only to scrape my back on the bedside table.

I landed in a dignified heap but was unable to get myself up off the floor. Cecilia came running and said she wished she could help me; John ended up lifting the heavy load (very efficiently, I might add).

I blame my extraordinarily luxurious 1000 thread count sheets; what makes them so fabulous also makes them a slippery hazard. I guess it's time to pull out the rubber knee pads. I become more glamorous every day.

What a nice segue -- I can tell you about my shopping experience Sunday.

Becky and I went shopping for running shoes for her birthday present after which we went looking for a jacket for my upcoming trip, and a new pair of jeans since I have outgrown the pair I purchased in March. The jeans were located as were a couple of other similarly styled pants. (By similarly styled, I mean pregger style.) As we were checking out, the cashier, seeing the "specialty" garments, asked me if I wanted a gift receipt. I said "no," at which point she looked at my stomach and said "ahh." You can imagine how glamorous I felt at that moment.

Following on the heels of Friday's clinic, these two incidents reinforced Louise's involvement in my life. I went back and forth several times this weekend being mad, sad, resigned, defeated, but ultimately grateful. There is so very much to be enjoyed in life, no matter how fast you run or walk, no matter how high you can lift your arms...that doesn't matter. What matters is being almost 51 and enjoying the look on the Kohl's cashier's face when she sells you maternity blue jeans.

10.03.2009

Someone saved my life tonight

I can't believe I almost forgot to write about this. Yesterday, after leaving clinic and while on our way to meet Adam and Ricardo at Bertucci's, I tripped on an uneven sidewalk. As if in slow motion I could feel myself lurching forward; Lynne's hand reached out and grabbed my left arm as my right leg went into position to absorb the impact -- and my right knee locked so the quad was stable, AND I DID NOT FALL. It's that last bit that I am still able to recollect with amazing clarity. It was only recently that Mike had explained what was happening when I walk, and here, in this particular instance, it was remarkably apparent. Not only did the knee lock, it locked with authority.

I was on heightened alert after that and had no more missteps. The lesson here is: beware of sidewalks.

A special thanks to Lynne who gets credit for saving my life. :-)

10.02.2009

Another three months

Sooooooo. Clinic.

First stop was pulmonology, always fun, fun, fun. I like the doctor but I hate the test -- not because the test is difficult, but because I'm afraid of the score. Today, however, we did not take the customary blow test. Today's test involved inhaling through a device that felt small, narrow, and plugged up. Any result of 50 or below and you should start thinking about a bi-pap; the best score is 100. I got a 74. As there is no direct correlation to a forced vital capacity test I am unable to compare this result to the one from three months ago.

Neurology was next, along with the rest of my multidisciplinary team. The revelation that my gait has changed prompted Ellie to closely examine my leg muscles where she noticed increased tone in my left quad. Tone in this instance is not a good thing. Anyway, she's suggested I try using some baclofen which, if I understand correctly, will improve my walk through reducing the tone. I may experience some side effects (drowsiness) so I am starting off on a very small dose. Sigh... another drug. And a drug used to treat a specific ALS issue.

My legs are justifiably yellow.

The visit with Ellen was enjoyable, as always. Lindsey the nutritionist followed, and I was reminded to drink lots and lots and lots of water. I realized today I have not been drinking as much as I should due largely to the fact that it is increasingly difficult to "pull down and pull up." The remedy for this is easy: I just have to wear more bathroom friendly clothing. Oh, when I think of my old clothes...oh well. Those days are gone.

I had lab work done at this point -- difficulty in finding a vein made me queasy and very unhappy. I will not elaborate.

Gwen came in and asked me the usual round of questions -- the questions that go into compiling the FRS score -- and also watched me drink my water since Mona (the speech therapist) was out. I've mentioned before that Gwen always asks the searching questions, looking closely at me as I respond to see if she can identify anything I might be hiding, like depression. Noticing that I had scratched out the psych visit on my board, she asked me why I was opposed to seeing the psychiatrist. Lynne has always wondered this as well. In a nutshell, I don't see how someone can visit with me for 15 minutes every three months and get a handle on how I am doing. It's not that I am opposed; rather, I don't think this schedule is necessary beneficial. Following the double teaming efforts, however, I acquiesced and submitted to my 15 minute visit with a shrink.

She was a very nice young woman who asked me the tough questions (do I think about suicide, etc.), then asked another series of questions to ascertain how I was coping. This led to a discussion on coping techniques which, she allowed, I seemed to have a handle on. It was a painless little session and made everyone happy. Was it beneficial? I will say yes.

Carla and Kay were next. It seemed to me this was the longest of all the visits. My curled and swollen fingers, my swollen ankles and toned quad were all subjects of interest. We discussed finger splints and compression gloves and ankle wraps. Kay and I arranged to meet at her home on Monday night so she could make me some custom finger splints -- isn't that great! I really do have a great team.

Yellow legs. Baclofen. Splints. Psychiatrists. This ALS thing seems to be here for the long term. I certainly felt more like an ALS patient today. There is no denying that change is occurring, no matter how slow and no matter how I try to minimize it.

At one point today the conversation was about running. Running. I think about it quite a lot now that the weather is cooler in the morning. Of all the changes I have experienced this one hurts the most. But I have said that before. I've also said -- and I mean this very sincerely -- at least I can remember how it felt when I did run. After all, tis better to have run and lost than never to have run at all. (I know, cheesy.)

10.01.2009

FRS is 40

But the legs changed. I answered more honestly about early ambulation difficulties and the stairs. I hate this stupid disease.

Hee hee, I am furious (yellow).

Clinic tomorrow, and another FVC test to look forward to. Joy, joy, joy.

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